About
I was diagnosed with Essential Thrombocytosis in Feb 2010 by a Hematologist. I am currently in my early 30s and symptoms like fever, headaches, dizziness and sweating for more than a week triggered me to seek medical attention as it is not a normal fever that I used to experience. With the doctor’s recommendation, I went through a full blood picture examination to rule out Dengue fever, which is quite common in asian countries due to the climate.
The outcome of the blood examination was surprising and yet something to worry about. My platelet counts were more than a million (normal person’s platelet count: between 150,000 to 400,000 platelets per microliter of blood). I was immediately referred to a Hematologist for professional and specialist opinion and treatement. I was put on Hydroxyurea and Aspirin to reduce my platelet counts. With known side effects from the Hydrea treatment (see Treatment section), I was recommended for the Interferon Alfa injection, which I took once a weeek for 1.5 months. However, there is also a side effect from the treatment, which defers from different patients. It impacts my liver and I was immediately removed from the treatment. I was then administered with “Essentiale Forte N” which supports the liver function.
I was lucky at that moment as my platelet counts went down to the normal level of 405,000 and within weeks my liver enzime and function was back to normal level. I have not been on any treatment for the past few months. However, I am on constant observation by my Hematologist as I was told that I might suffered from high Platelet counts again in the near future.
I am still battling this non-curable blood disorder with many other patients worldwide, until I hope that one day that medical science will be able to find a cure.
This blog is meant to share experience, knowlege, news of new researches on blood disorder, meeting new friends who also suffered from this disorder and hopefully to share our concerns and hope for a better future to find a cure for this blood disorder. This site does not provide a professional medical opinion and will not be responsible for any medical attention or decision for treatments. Please seek a professional Medical Doctor or a Medical Specialist to diagnose and treat your case.
Bryan Tan
31-Dec-2010
* I am running a survey to find out ET patients around the world and their location. If you sufferred from the following blood disorder or knows someone who does, please leave your comment(s) and share your thought(s) on ET. Please include the following information.
Country of origin, Sex, Age, Ethnicity
Leave a reply to liz_palli@hotmail.com Cancel reply
Red Blood Cell, Platelets, White Blood Cell
Life with Essential Thrombocytosis 
Name: Bryan Tan
Country: Malaysia
Sex: Male
Age: 32 (as of 2009)
Ethnicity: Asian Chinese
Hi i just find out today that i also have a Essential Thrombocytosis my platelet count range from 600,000 to 950,000 my Hematologist prescribe me to take Hydroxyurea,.
I’m confused and depressed right know,..Im from Philippines, 23 years old. please give me ideas about this disorder, i’m really scared,.
Hi Rex. I am Shiela from Quezon City. My father has been into the disease since 2006. Would it be possible if we can share our experiences? Please reply.
You are not alone I myself was just diagnosed about 24 days ago also on hydroxyurea and asprin low dose im still reserching this disorder I to am scared my advice is do everything your doctors tell you myself I pray alot and hope that I can live a long life im 51 my prayers are also with all who suffer with this amen
Hi I am KC from Manila and was just diagnosed today. GladIy found this blog and read some experiences of newly diagnosed with ET. I am sacred but hopeful.
Hi I am KC from Manila and was just diagnosed today. GladIy found this blog and read some experiences of newly diagnosed with ET. I am sacred but hopeful.
Dear Bryan,
My name is Shiela and I am from Manila Philippines. I am very happy to find a website wherein I was able to read about ET. My father is suffering from the same disorder since year 2006. He is 63 of age now and Filipino-Chinese. His platelet at one time reached 1000 and he was hospitalized. I seriously thought he’ll leave us then, and only by then we have realized he’s suffering from ET. He’s into aspirin and only started with Hydroxyurea on the last quarter of year 2010. Other than that, he’s taking chinese herbs.
I really wonder if I could have the chance to talk to you. My father is old and I really dont wish to see him in pain any more. Please reply. I would like to know more about your diet and medications. You are blessed your platelet has gone back to normal.
Hi Shiea yes, im open for the possibilities, im in manila almost 2 weeks now and be here until my Hema’ gives me my medical clearance so i can work on board a ship,. hmm here’s my email add rr_blue28@yahoo.com, just pm me anytime. i also want to here your father’s experiences,. im from Bacolod City anyway..
Dear Bryan,
My name is Shiela and I am from Manila Philippines. I am very happy to find a website wherein I was able to read about ET. My father is suffering from the same disorder since year 2006. He is 63 of age now and Filipino-Chinese. His platelet at one time reached 1000 and he was hospitalized. I seriously thought he’ll leave us then, and only by then we have realized he’s suffering from ET. He’s into aspirin and only started with Hydroxyurea on the last quarter of year 2010. Other than that, he’s taking chinese herbs.
I really wonder if I could have the chance to talk to you. My father is old and I really dont wish to see him in pain any more. Please reply. I would like to know more about your diet and medications. You are blessed your platelet has gone back to normal.
Name: Caroline
Country: Ireland
Sex: Female
Age: 29
Ethnicity: Irish
I was diagnosed in 2010 when I was 25 after a routine blood test showed platelet count of 886. It is now around 1500. I am taking 75mg Aspirin daily. Thankfully I have no symptoms but I do worry about having to go on other medications and the impact on pregnancy.
Caroline
Caroline,
I was just diagnosed yesterday with ET and I am 23 years old. i found out due to abnormal blood test results during a routine series of tests for my pregnancy. I am currently 16 weeks 2 days pregnant. My platelets range from 500,000 to 600,000. I have had abnormal platelets since 2007, but it was never looked into by any doctor until now. I don’t know much about the disorder except for what I have read online. But, I have been ordered to take 81mg aspirin daily throughout my pregnancy to reduce complications and clotting. I have had a healthy pregnancy so far and the baby is doing just fine and i have not had any complications yet and up until yesterday, my condition wasn’t monitored or treated with any medication. I just wanted to respond to your comment to assure you that if you end up pregnant with this condition, you can still have a healthy pregnancy.
Good luck with everything and happy holidays.
I am from Northern Ireland if you would like to chat about et, I am female- 27
I am from the UK and my husband is 31 with ET. He has just started hydroxy and his platelets are in the low millions. He sought help when he became symptomatic so fingers crossed you caught it early xx
29 years old with platletes in the millions. I had to sucessful pregnancys with beautiful healthy girls. I was on peg interferon for pregnancy. Now that in am not pregnant i am currently not on medication…only asprin. I get check ups every 3 months
Hi I’m Phil from Manchester UK I started with an enlarged liver and spleen in 2013 they thought it was haemolytic anaemia they took my spleen out in June 2014 then my platelets went up to 950 I then suffered blurred vision in October November and December
In march 2015 I had an angina attack and then three weeks later a haematoma
In August 2015 I started on hydroxycarbamide for life and aspirin and allopurinol every day I’ve since suffered two DVT s and passed blood in my urine all side effects of essential thrombocytopenia
My Uric acid went up so high I couldn’t walk I’ve needed operations on both feet due to bone erosion caused by the high Uric acid
Sound like you have been thru hell. I have not been thru what you went Thur. I take a pill every day and checked every three months my platlets are under control. Don’t have any symptoms and did not when they said I have et when they did blood work my platlets were very elevated. Now I am good. Good luck with your illness. Laura
Hi Caroline.. .. my doctor recomrecommend me 100mg aspirin…my count is abt 700
Name Phil country England sex male
She 61 I started with an enlarged liver and spleen in 2013 had a negative bone marrow test in November 13 then a second negative in May 2014.i had a splenectomy June 2015 then started with high platelets upto one million by November 2014 I then got blurred vision in November December in march I had an aging attack and a haematoma in march 2015 my platelets still a million in July my GP referred me back to haematology who performed a Jak2 test which came back positive
I was immediately put on hydroxycarbamide and aspirin and allopurinol daily for life
I’m 2016 June 10 months on hydroxycarbamide I got a DVT then a second in September then Christmas 2016 started passing blood I’m having regular steroid injections for joint pain every six month under general anaesthetic
I’m on 1500 mg of hydroxycarbamide daily aspirin allopurinol and penicillin also naproxen and codeine as well as blood pressure tablets and heart tablets daily
It’s been a nightmare I’ve just had an MRI scan regarding my blurred vision all symptoms of essential thrombocytopenia
Name : Pat
Country: Canada
Sex: Female
Age: 67
Ethnicity: Caucasian
hello pat! — do you have et? are you taking hydroxyurea?
Name: Pedro
Country: USA (Originally Puerto Rico)
Sex: male
Age: 39
Ethnicity: latino
I was diagnose last year 2014.
I have plan with my wife to have a child
(a son or daughter).
I’m on Anagrelide drug.
I’m not sure that anagrelide damage my sperms or DNA in sperms.
Do you know that should I change my drug to Interferon alpha or other drug.?
I have plan with my wife to have a child
(a son or daughter).
I’m on Anagrelide drug.
I’m not sure that anagrelide damage my sperms or DNA in sperms.
Do you know that should I change my drug to Interferon alpha or other drug.?
Hey Anagrelide is a much better drug, it has less side effect than interferon alpha. i would definitely consult a doctor about having children
Good luck with the blog!
Thanks Michelle. I read your blog that you have extensive involvement with the non-profit organization on MPD. Great to know that there are organizations who are helping each other to understand our disorders. I hope that the information in your blog could provide us with better understanding of the disorder and hopefully could find a cure one day.
Hi Bryan!
I am excited to read more posts from you! It is difficult to find blogs about ET. I have a blog, too, it is http://julie70.wordpress.com/. Come by and take a look, maybe we can be of help to each other.
To help with your survey, here is my info:
Name: Julie Grinnell
Country: United States
Sex: Female
Age: 41 (38 at diagnosis)
Ethnicity: Caucasian
Best of luck with your blog!
Julie
Hi Julie!
It is indeed a relief for me to know that there people like us sufering from this rare disorder. I am pretty excited too, to share my experience and also to know from others of their treatments and experience. I’ve stopped any medication at the moment for the past 3 months now since my platelet counts went down to ~405,000. I was told by my Haematologist that the count may increase again and I will be on constant monitoring. Recently, I’ve been having headaches and signs of fatigue again. I will be having my regular check up and platelet counts this week. Wish me luck!
Bryan 🙂
Bryan –
It helps to know others are going through the same journey. I was very happy to find your blog and Julie’s blog. I started my blog to write about my family and it has turned into a health blog about my experience with ET http://ourbeautifulandmessylife.blogspot.com/
I look forward to reading more of your blog entries.
For your survey:
Name: Susan
Country: United States
Sex: Female
Age: 34 (was diagnosed Jan 2, 2011)
Ethnicity: Caucasian
Thanks for your sharing your journey –
Susan
Hi Susan,
I was also glad that I am not alone in battling this blood disorder. It gives me hope and reason to live my life to the fullest. I read your blog and I do experienced the same situation and emotional disturbance when I first found out my case. I’ve learned to accept it and hope for the best and life our live healthy and positively everyday. Family and friends are as important before and after I found out my condition. You have 5 beautiful kids and a loving husband to support you. Think positively and do not give up no matter what. I learned to appreciate life more and do the things that I wanted to do when I took things for granted prior to my diagnosis. Looking forward to read more of your blogs and experiences that we could all share along our journey.
Cheers.
Bryan
Hi Byran, I hope you get my email.I am suffering from the same blood disorder for the past 12 years. I have been on so many different medications for this problem. Due to all the different medications I have developed other medical problems. My symptoms are getting worse and I have seen my doctors have given up and told me to live with my symptons and accept my health is getting worse. Please do you have suggestings for me.
Sonja ( South Africa )
Hi Sonja,
Based on multiple discussions with my Hematologist, treatments react differently to different individuals. My platelets went down last year when I tried Interferon. I’m currently not on medication for more than 6 months, but my last blood screening shows that my platelet is increasing again. I might be back on medications again soon – but I hope not. There’s been ongoing researches for this type of disorder but do not have a definate answer to the cure yet. Even if your current doctor has given up on you, but you shouldn’t give up yourself. It is true that we need to accept the fact that we suffered this disorder, but you are not alone. Try seeking second opinion if you have not and live your life to the fullest. BTW, you could also join facebook group where there are others like us facing this challenge in our lives.
https://www.facebook.com/home.php?sk=group_9686810852
I’m also trying to live a healthy lifestyle. Exercise regularly and eat the right balance of diet. All the best and please do not give up. I understand that it’s easier said than done, but we must have hope to move forward no matter what. 🙂
Cheers.
Bryan
Asuncion, Filipina (Malay Race)
diagnosed with ET around age 52
passed in August 2009, age 62
received Hydroxurea and Anagrelide therapies
sufferred from high-blood pressure
died from complications of strokes
She is my mother.
Hi Michele,
I am sorry for your loss and I share your grief. Please accept my deepest sympathy and thank you for sharing with us.
Cheers.
Bryan
Hi Bryan,
I am a 37 year old male from New Zealand, diagnosed almost 3 years ago with platlets of around 1.2 million. Now on Hydroxyurea and asprin and getting on with life, albeit with slightly more urgency. 3 monthly blood tests and an annual check up, I don’t expect to have any complications for many years, and by then there will be a cure/treatment, I am sure. I have three kids under 5, so I don’t have time for complications for the next 15 years!!
Diagnosis was a psychological blow for the first 3-5 months, then I learnt to live with it. It could have been much worse.
It has lit a fire under me, and I am more ambitious and driven, and appreciate what I have, so it may be a good thing!!
Keep in touch.
Tim
Hi Tim,
I understand how you feel and learn how to deal with it. I couldn’t agree with you more that I too am more ambitious and courages in embracing challenges in life nowadays. What else could be more important than to view life in a different perspective and appreciate the things that we have. Take care.
Cheers.
Bryan
Hi Tim i am from the UK and my husband is 31 with ET. He has just started hydroxy todsy and his platelets are in the low millions. He tried interferon but it was horrible so was put on hydroxy urea. It’s his first day be he feels rotten. Can you possibly shed light as to if these symptoms get better, if so after how long? It’s funny because we’re not even bothered about the illness itself as we are the symptoms of the treatment! Also how effective was it in bringing your count down? I know my husband was diagnosed alot letter in the illness
Yammy
Yammy: did your husband try the pegylated version of interferon (Pegasys)? I am on it and the side effects are supposed to be less severe. You only inject once a week. Also the Facebook page Essential Thrombocythemia Support Group has a very active membership providing lots of information and advice. Best of luck with your husband’s treatment. X
Hi Everybody .My name is Frank and I have recently been diagnosed with Jak2 positive Essential Thrombocyosis . I am a male 79 years of age ,live alone and do not have any friends since I moved house some months ago . I have wonderful children and grandchildren who ,unfortunately live far away .I do not intend to tell them of my illness . Initially I was scared ,particularly at night . Now, 10 weeks into my treatment , I have accepted my condition and try hard every day to stay positive . I have had a good life and at my age I think myself lucky to have survived so long and am now making more efforts to try and visit my sons and grandchildren more often .My heart goes out to those of you who are younger and suffering .May God help you all and make life a lot easier for you .
‘ Bye .
Frank .
Frank, your positive attitude resonates with me. It is hard to believe you do not have any friends near you, because you sound like someone who easily makes friends, wherever you go. May God continue to bless you, friend, in your journey.
Hi Francis Feeney,
I’ll be your friend. ET is not fatal, MAJORITY live a normal lifespan. I used to be scared, now I just don’t bother because I come to realised that being scared impacted me emotionally and physically more than the condition itself. I don’t see myself suffering, in fact most of the time I totally forgotten about it. LOL.
Just need to make sure the treatment you get have your count go to normal, and the treatment have minimal side effect. I have mine going up and down from 450 to 800 for 3 years since I refuse conventional med. I don’t recommend you stop your med though because of our huge age different, I’m 40 by the way, diagnosed with the condition in the end of 2012, my body may be able to cope as my blood vessel is still quite flexible. I have the feeling that my body is healing itself.
You will be fine. Enjoy your life and time, don’t let it bother you so much until you have forgotten to enjoy life. When you are ready, it will be good that your family know about your condition. your will be able to teach them how to be strong. Keep Staying Positive Frank. Cheers
Hi Tim
For your survey:
Name: Anne
Country: United States
Sex: Female
Age: 43 (was diagnosed May 2009)
Ethnicity: Caucasian
Started with migraines and got CBC and everything was high. Plattlets
were 920…averaging 330 now. take 1 hydroxyurea mon-friday and 81mg of asprin a day…so far so good
cheers
Anne
Hi,I am a newly diagnosed ET patient,I suffered a stroke at38 yrs old. This has hit me like a load of bricks.I really feel like I am batteling this alone.I am also a diabetic withno insurance.I am still having high platlet(596)at the last check.I am feeling a lot of fatigue and dizziness.
Hi daybluv,
You are not alone. That’s what I’ve discovered over the years when I was first informed of my condition. It was mentally challenged at first but once I’ve accepted it, I am able to focus on how to be healthy and appreciate life more. I am now trying to live a healthy lifestyle by forcing myself to exercise every week (swimming and gym). I used to be fatigue and weak but I started with light exercise and it really helps me. My dad is also a diabetic and he’s 69 this year. He managed to control his sugar level by eating well and exercise often.
You may also want to consult your doctor for more advice on how to best treat your condition.
Best of health to you and we are all not alone in this. 🙂
Cheers.
Bryan
Great blog. You all may wish to check out Mpdinfo.org and then specifically the mpn online support group which hosts thousands of people worldwide corresponding daily about the latest research, medical strategies and ways they deal with symptoms and side effects of treatments. Best wishes, Mary wife of PV husband diagnosed in 05
Hi Mary,
Thank you for sharing the link. Very informative indeed.
Wish the both of you best of health and stay positive and strong.
Cheers.
Bryan
Hi Bryan,
Just read your blog and found it interesting – would have been useful when I was diagnosed with ET back in 2008 with platelets at 1.5 million at age 48—–platelets had been over 700,000 since 2004 but GP didn’t say anything as I had no other risk factors. In 2008 I was having visual disturbances and a massive bruise on forearm after only a slight bump. That coupled with platelets of 1.3 mill on CBC got me the chance to enjoy the bone marrow aspiration and biopsy. 1.5 mg Anagrelide and a baby aspirin daily have kept the platelets to around 385 ever since. As my hemotologist says “other than the ET, you’re the picture of health!”
Bottom line is everyone has something to deal with…ET just happens to be it for us.
Stay well,
Nancy, Age 52, Female, White of Croatian and Finnish descent
Nancy,
How are you doing? Just read your post and was wondering how your numbers are and what treatment you are still on. Thank you for your time.
Patty Age 53 Dx with ET two weeks ago
Hi Bryan
Catherine here.I’m 39 years old. I’m Irish but have been living in Holland for the last 15 yrs. Was diagnosed last Nov with ET. Platelet count was crazy-went up to 3million at one stage but back down now normal now at 215 million. Suffered a pulmonary embolism about 2 weeks after beign diagnosed so still on treatment for that. I guess I was lucky. Have no symptoms of the disease now they tell me but plenty of side affects from the Hydrea, tingling or shivering all over being the worst one as I can’t sleep with it. Haemoglobin count is and white blood cell count down too so Hydrea dosage has been adjusted too I would love to hear how others have got on on this drug? I’m taking 1500mg daily (=3x 5000mg tabs). And Acenocoumarol treatment for the pulmonary embolism. I am being taken off the Hydrea for a few days next week to see for certain if the side affects are due to that. Great to know there are others in the same boat. And great job Bryan setting up a world wide blog!!
Hi Catherine,
Thank you for your support on my blog!
215 million is still pretty high. I took Hydrea in the past and it is not something that I would favour. I had similar problems like feeling fatigue all the time. I took Interferon (Pegasys) as an alternative option and it does help to reduce the Platelet counts but with some side effects:
– tiredness and weakness
– loss of appetite
– skin reactions
– hair thinning
– trouble sleeping
– inflammation on liver
http://www.pegasys.com/patient/index.html
I hope that your current treatment plan will ensure that you get back on the right track. All the best to you and yes, we are not alone in this one.
Cheers.
Bryan
Hi Catherine ,
I share u the same illness & somehow the same suffer , but what doubles my trouble is that Im living in a country with a primitive medicine & no enough pharmacological sources , my hematologist adviced me 2 take anagrelide but I couldn’t find it here .
I’m looking forward to go back 2 Ireland , I need health care & I hope you can help me to get the benefits of the health cards .
please contact me my email
wafa_ema@yahoo.com
we may help & support each other , getting the correct treatment & carrying on isn’t easy .
Wish u the best .
Ema .
Hi Bryan,
Yeah sorry I think I got the figures wrong It was at 3200 at it’s worst and went down to 215 on my last check. Anyway, the point is the platelet count is very normal now. What did you not like about the hydrea? If I look at your list of side affects for the Interferon I would say they are pretty rough too……………….had you worse experiences with hydrea? And what sort of dosage were you on? I’m on half the max dose for my weight at the moment. =3 tabs but I ithnk it can be further reduced. I have another check in 3 weeks. They had to use a very high dose in the beginning to get it under control and I am hopeful it can be reduced. But I often wonder how hydrea compares to interferon in terms of how you feel. Does it reduced your red blood and white blood cell count too like the hydrea does? Would love to hear your experince. Thanks so much for setting up this blog!
Hi Catherine,
Great to hear that your platelet counts are down to 215 – at the normal level! Hope it will maintain at that level.
Initially, when I was first diagnosed, my platelet counts were above 1,000. My Haematologist was concerned about the high level of platelets and was put on Hydroxyurea (hydrea) imediately. I was taking hydrea (500mg) – (2 capsules – once a day) and aspirin (100mg) – once a day for a few weeks. It was considered as high dosage for me and was feeling fatigue and depressed. After my platelet counts dropped, I gradually reduce the dosage and frequency of the intake (twice a week). I was then introduced with Interferon (administered by injection – once a week). Each time I went for a check, I have a full blood count that includes platelet counts, red and white cells. Red and White cells were at normal level for both of my treatments.
Hydrea is a chemotherapy drug where else Interferon are proteins. I can’t really tell the difference, but both hydrea and and Interferon seemed to made me feel dizzy/tired most of the time. For Interferon, I administer it via injection through my thigh once a week by myself, while if I’m on Hydrea I need to take the medication a few times a week.
I’m glad that we all share our experiences here and I hope that it will be beneficial to everyone. I will be having my platelet check end of this month – Aug. Hope the result will turn out well.
Name: Beth
Country: England
Sex: Female
Age: 29 (24 when diagnosed)
Ethnicity: Caucasian
Hi, I was diagnosed with ET when I was 24 years old after a routine blood test showed I had a platelet count of 1 million 700,000. Have taken Hydroxyurea & asprin on and off for 5 years – have never had a problem with this medication. Had to come off this when I had my little girl (who is now 2) and was on Intron A injections for a year – made me feel really bad at first (flu like symptoms) but this stopped after the first few weeks and got on okay with it. Went back onto Hydroxyurea when my little girl was born. But have recently been put back onto Intron A injections as platelet count was still rising and had started to have to take 3 tablets Mon-Fri and 4 at weekends. Intron A injections this time are making me feel really tired constantly – hopefully this will settle soon.
It’s interesting to hear how other people treat their ET as have never spoken to or heard of anybody else with this condition.
Hi Beth,
That’s a very long time – taking Hydrea for the past 5 years. I agree that Interferon makes you feel dizzy as I had the same scenario initially. I hope that you have a suitable treatment plan with your doctor. According to my Haematologist, every individual will respond differently with each treatment. Our human body is very complex and reacts differently with different method of treatments. Best to consult a Haematologist that could monitor your case and provide recommendations. I see that there are many patients sharing their comments in this blog and I hope that it will bring benefit to us all.
Hope you’ll feel better soon. BTW, congratulations on your new born baby girl :).
HI Beth,
Did you stop taking all your medication completely when you where pregnant, I really want to start a family but so far have been told that I won’t be able to as even if I don’t take my medication for a week my platlet count shoots up! I have had ET for 10years now and am only 23.
Hopefully you can give me some advice on how you coped with starting a family.
Thanks
Jennie
Hi jennie,
Sorry I have only just seen your message – had t checked the site for a while.
I took intron a injections & aspirin when I was pregnant – I had been on hydroxicarbomide previously but when we told my haematologist that we wanted to start a family he changed me to the intron a (interferon) injections. Once they had got the levels & amount of injections right this medication seemed to be fine while I was pregnant – no side affects for me or baby – when I had had my daughter I was put onto warfarin for afew weeks to make sure I didn’t clot & all worked out well. Was under the consultant while pregnant & they keep a really close eye on you. I am now 10 weeks pregnant again & am on the same medication as previously. All will hopefully be the same as before!
Which medication are you on? Have a word with your haematologist about the injections as they have worked for me – I know all cases are different but there should be a way they can help you start a family.
Really hope that helps you – any other questions at all that you have please ask – I will check more regularly now!
Beth x
Hi Beth we are from the UK and my husband has been diagnosed those year at age 31 but has been late diagnosed. Then his platelets where in the low millions. He first took interferon three times a week and it was hell for him. He came off it and when he was checked they had reduced to 700.000 and by a week or so they had gone up to 900.000. So he has been put on hydroxy today. He took 500mg (twice a day)and he feels rotten. Can you shed light as to weather these symptoms will go? Did you have symptoms to start with then they lessened off?
Name: Jan
Country: Scotland
Sex: Female
Age: 60
Ethnicity: Caucasian
Hi, Apparently, during bloodwork for something else, it was discovered 7 years ago that I have ET. No one thought to tell me about it though, until I turned age 60 earlier this year and was receiving treatment for something else (vaso vagal syncope). I was started on 500mg Hydroxyurea and 75mg asprin in March, bloods monitored fortnightly. Four weeks ago, as the red cells weren’t responding, my dosage of the Hydroxyurea was doubled – 500mg in the morning and again in the evening.
Last Friday I had a sudden sharp pain between two of my toes and on inspection found a deep reddening of the skin and radiating pain and excruciating itching, followed by a huge blister. By Sunday evening I had a maddeningly itchy pin prick type rash over the whole of my torso, arms and legs from the knees up. Ended up at the emergency doctor at four o’clock this morning – he immediately suspected the Hydroxyurea and advised me to stop taking it and the aspirin immediately. He took blood and a sample of the content of the blister, prescribed antihistamines and an antibiotic for the infection on my foot. He phoned later to say that the white blood count was low and reiterated that I must stop taking the Hydroxyurea. I am currently awaiting a call from my consultant at the hospital to discuss alternatives. Despite antihistamine and prescribed lotion, I still would love to rip my skin off. And now I’m scared about the low white blood count. I hate getting older.
Hi Jan,
I’m sorry to hear that you have to go through all the pain. I share your frustration, pain and concern that you need to go through. Hope that your consultant could get a suitable plan for you soon. We are all afraid of suffering illness certain things that we could not change in life, but I do hope that you will continue be strong and get well soon.
I was diagnosied with ET about 10yrs ago. I intially had a short span of hydro. I read up on it and preferred Anagrelide. At first it was difficult to accept the anagrelide. I slowly built my tolerence up to it. I am on on 1.5 mg. daily. I would take .5 caps sometimes to help me build up my tolerence to the drug. I used to experience headaches and difficulty breathing bouts. Now my body seems to be acclimated to the drug. I am 60 now, and look forward to a cure before I leave here. Hope they have better success in treating this disease. I just read where pfizer just released a new drug for treating a disorder of an over abundance of white blood cells. Maybe soon something better for us will be developed..
hi bryan ..
iam really excited to read your post .. i was suffer with this ET for 3 years now..has gone for many medication.. i feel relief to know that there are people who suffer the same like me :
name: jeny koerniawan
country : indonesian
age : 34
ethnicity: chinese – asian
best luck for you
🙂
Hi Jenny,
I’m glad that you’re felt relief. We are all not alone in this and hopefully you find a good combination to treat it. Also, hope that your platelet levels are at a manageable level now,
Cheers.
Bryan
Hi Jenny,
My name is Monica also from Indonesia and I am 28 years old now. Just wondering if you have a doctor that you usually consult your ET with in Indonesia.
And also, do you have children? I am planning to have one next year and is worried now. let me know. You can also contact me on my email monica.kang01@gmail.com
And thanks Brian for having your blog. It’s good to know I am not alone. Looking for the right doctor now. Was diagnosed 2-3 years ago by this doctor in Singapore. However, he said since my platelet counts is around 600,000 and I am not showing any symptoms, He didnt recommend me to take any medication. I am hoping to get second opinion from other doctor because from what I have been reading most ET patients are in fact on medication.
Cheers,
Monica
I’m 23 years old, I live in the UK and have had ET since I was 13years old. I was first started on HU and stayed on it for 4 years before being moved onto Anagralide which I was on for another 3 years. For the past 3 years I have been on an injection called peginterferon alpha. I have had the same side effects on all the different types of meds such as tiredness and hair thinning but other than that I have been perfectly healthy. Even though my immune system is lower than most peoples I don’t get ill any more often and the only noticeable thing is that it takes me a couple of days longer than a ‘normal’ person to get over the common cold!
I have lived with ET for the past 10years and it hasn’t changed or affected my life in anyway.
However if anyone can give me any advice on what comes next I would really appreciate it! I would love to start a family soon but all the meds advise not to get pregnant whilst taking them and for 6months after being on them. Has anyone been through this?
Thanks
Jennie
Jennie I have now replied to your post by mine – hope this helps you
Beth
Hi Jennie how long did it take for you to get used to the symptoms of hydrea or did they lessened in any way. My hubby is 32 just been diagnosed late ans the symptoms are the things that is running his life. Interferon alpha (injected 3 times a week was also horrible) he just started hydrea today snd feel rotten and I desperately want to know if he will build a tolerance to it snd feel better? Sorry you had to go through this so young. Oh we are also in the UK xx
Hi, about 7 years ago I was admitted into hospital and had to have a scan and was told that I had a portal vein thrombosis I was put on warfarin, 3 weeks later I had another scan and I was told I had a splenic vein thrombosis and a large spleen. Then 4 years later I went for a routine blood test and was told my platelets were high after having a bone marrow I was told I had ET. I was put on Aspirin and had to have regular blood checks. It was 2 years later before i was put on medication (Hydroxycarbromide capsules) to reduce my platelets, so far so good. I am 55 years old I lead a normal life I go to the gym 3 times a week, the only thing I do seem to have are headaches and occasionally dizziness. ( don’t know wether they are related to ET ?
Hi Diane,
It’s great that you are keeping your healthy life style (going to the gym 3 times a week). Dizziness and headache could probably be caused by the medication (Hydroxyurea) that you’re taking. I do experience similar symptoms previously when I took Hydrea. you might want to clarify it with your doctor who prescribe you the medication.
Cheers.
Bryan
Name: Lynda
Country: USA
Sex: Female
Age: 51
Ethnicity: Caucasian
Bryan,
So nice to find your blog. My doctor told me back in March of this year that I had “reactive” thrombocytosis which was discovered while I was battling anemia and an iron deficiency. My platelet count back in March was 1.4 million per m/l.
A couple weeks ago I went in to get rechecked for the third time since March and my anemia had resolved and my iron levels are fine but my platelets remain at 900,00 so they dropped, but not enough. Next thing I know I’m having a bone marrow biopsy and just yesterday, I saw the doctor and got the final diagnosis of ET. Wow, really mind blowing stuff.
Because I also have Type 2 Diabetes, he immediately prescribed Hyrdoxyurea and baby aspirin daily. So now I have two chronic diseases
Oh well, I’m up to the challenge and I’m the type to just take life as it comes so after one day of throwing myself a pity party, I’m back up on my feet and out to learn all I can about this rare disorder. By the way, that’s the other mind blowing thing about ET is that it really is very rare.
Thanks for sharing your story. I’ll be checking back!
-Lynda
Hi Lynda,
Thank you for sharing your story with us here. It is mind blowing for me too when I first found out the condition I’m in. But over time, I manage to accept it and live with it.
ET is indeed rare but apparently, it is growing as more patients are aware of it. There is also very minimal information on ET. Sometimes, I could hardly find any new information and updates on the treatments for this blood disorder. But, I do believe that our Doctors and Researchers will someday be able to get us a permanent treatment and help us to understand further on how we deal with it.
Cheers.
Bryan
i was diagnosed with ET about 24 years ago – I am now 52. I had a platelet count ranging from 1.4 million to 1.7 million. I have taken Anagralide continuously since that time now taking 1.5 mg per day and my platelets have stayed in an acceptable level.. I have had no noticible side affects although i do worry about being on this medication for such a long time. I live in a relatively small town and I am currently being treated by my primariy doctor (an internist) and consult with a hemotologist very couple of years. I recently made an appointment with an oncologist in Dallas at UT Southwestern who is more experenced with this condition to make sure i am doing all that i can.
Hi Barbara,
I hope that your platelet counts are lowered now and within the normal count. It is a good idea that you check with an oncologist and hope that you gain some knowledge on how you’re doing. All the best to you.
Cheers.
Bryan
Hi Barbara,
I was diagnosed with ET 2 years ago. I am 46 now. My platelets were under 1 million until 2 months ago. But when it goes to 1.7 m I started taking Anagrelide 1 mg per day. I have few palpitations as side effects. How are you feeling now ?
I think that staying positive, yoga, meditation, eating healthy affects positively us and helps to medication.
Regards,
Lara
Can anyone explain itchy legs. I also have ET and am on Asprin daily.
Hi Cate,
Not sure about itchy legs when on aspirin. Could be something else that is affecting it. Best check with your doctor.
Cheers.
Bryan
I have itchy legs also, it started before I was diagnosed and not as bad now that I am on the aspirin.
Hello,
I was diagnosed Oct 2012.
I am 51 year old female, Caucasian,live in USA
My count at last check was 875,000 at the time of my bone marrow biopsy, I have been taking 81mg. aspirin for a month, I go today for blood work to see if aspirin is working. I also have the JAK2 mutation. I have been having headachesfor the lastweek not sure they are related but nothing has helped to get ride of them. It is still scary not knowing, but very helpful to read everyones story I don’t feel so alone.
Sonja
I also have et and do not want to take hydrea because i fear it. I been taling two every night but it makes me exausted . Asprin should be ok other then the meds but i just dint know..i do know i have kids and grabd kids and i dont want to be so tired i cant live life with them..im only 42 and still have alit in me…helpppp please windy carlson
I forgot to mention my location . Sacramento california …ucd patient…
I also have et and do not want to take hydrea because i fear it. I been taling two every night but it makes me exausted . Asprin should be ok other then the meds but i just dint know..i do know i have kids and grabd kids and i dont want to be so tired i cant live life with them..im only 42 and still have alit in me…helpppp please windy carlson name: windy age :42 region:united states cal ethnicity:english italian…
I am really afraid of hydroxyurea because of my age and my (old kidneys) as I will be 65 in march,2013
Hi Joan,
It’s best to consult your doctor or physicians if you have any concerns. Hope you’re doing better now. Take care.
Cheers.
Bryan
Went for blood work today my platelets were at 852000 for the 2nd time but my red count was up. So the doctor wants to do a phlebotomy (remove blood) has anyone else had to have this done.
Hello,
Thank you for creating this site. I was diagnosed with ET about a year ago. I’ve been taking Hydrea, 500 mg, twice a day and until recently the only side effect I noticed was really mild flu symptoms for a day or two.
I run about 4 miles a day and recently I’ve been having problems with leg cramps. My dentist noticed that my gums had receded and that the amount of plaque on my teeth was much higher than prior visits.
My oncologists so it was possible that Hydrea was the cause of the plaque and cramps. As anybody experience similar side effects with Hydrea?
I’ve been trying to find supplements that help with bone marrow health, does anyone have suggestions for supplements?
I’m live in Southern Oregon.
Mike
Hi Mike,
Thank you for visiting and sharing your comments. I’ve not experienced any mild flu symptoms when I was under Hydrea previously. It could be due to the seasonal flu. It’s good to hear that you live a healthy lifestyle. I’m impresses, running 4 Miles a day!
Hydrea does have side effects. Some that I’ve encountered during Hydrea intake a few years back were:
– tiredness and weakness
– loss of appetite
– hair thinning
– trouble sleeping
You can refer to some of my comments and fellow visitors to my blog that share their experiences with Hydrea. We do however share some common effects – “tiredness and weakness”, which is why getting regular exercise could assist. I did swimming and hit the gym to keep myself from tiredness and after not been taking any medication for about 2 years now, I still ensure that I keep myself healthy.
I’ve not been able to identify or have any knowledge of supplements that could help Bone Marrow health. Not that I heard of from my Hematologist.
Cheers
Bryan
Hi my name is Paige,
I am a Caucasian female from the USA, 44 years old and just diagnosed over the summer 2013 with ET. Platelets of 700 showed up on a routine blood test. I hadn’t had a blood test in a few years and it was just a whim that I went to the doctor to get a routine work over. I consider myself very active and in good shape for my age. After the initial visit to the doctor I did get a mysterious flu with chills, fever, nausea and fatigue but I really think this was the flu and not symptoms of the ET. Follow-up blood test showed platelets up to 800 about 1 week later so my GP referred me to a Hematologist/Oncologist, after a look at a copy of my blood work from my GP the Hematologist seemed to know exactly what it was. I still had the bone marrow biopsy and complete work up to confirm it was ET.
Now I’m being seen every 3 months, taking baby aspirin only so far because I have few risk factors, but the platelets are over 1M and after reading some of the other posts now I’m wondering if I should be taking something else by now. I’ll have to ask at my next appointment.
I’m responding the comment about the leg cramps. I walk about a mile to and from the train station and exercise daily. I too have leg muscle cramps and sometimes arm muscle cramps daily since I was first diagnosed and I also have the tingling in my hands and legs. However I’m not taking the Hydrea mentioned above. My doctor says the tingling is probably due to the dense consistency of the blood (all the platelets) which make it tight getting through the smaller blood vessels. Also, it is cold winter here where I live now and I find that my muscles seem stiffer with the cold weather than ever before.
I had no idea how rare this disease was until after I started reading more. When you tell people you have this disease they have no idea what your are talking about. Thanks for having this website – it has been interesting reading about others all over the world with this rare disease.
Paige,
How are you doing? Are you still just taking aspirin daily?
Thank you,
Patty
Hi to All this is Mike, I thought I update my post from a couple of years ago. I still have issues with cramps but recently saw a doctor. He thought it was unrelated. Regarding the plaque build up, I think it was a result of a hectic travel schedule that prevented me from getting my teeth cleaned regularly, I’ve been extremely diligent with my dental hygiene and there have been no further issues.
Seems like I am the old man around here at 72 years of age. Diagnosed 3 years ago with ET. Have a jab of interferon weekly (more makes me really sick) Have the JAK2 V617F mutation ansd suffer greatly from aquagenic pruritus., which the Interfeon assist with.
Am desperately tired on some days…in fact most days. Love to know what others do to combat this.
Peter
Perth Australia
Hi Peter,
I had the same frequency of interferon previously and experience similar symptoms. Tired and restless. I did some light exercise and swimming to keep myself alert. Also did some breeze walks in the evening.
Cheers.
Bryan
Brian,
Are you on any meds now? Was reading some of your posts and I thought I read that you went off meds for a bit or you are off them now? Just curious. I’m only on a baby aspirin a day. But I’m trying to research all the different meds in the event I ever have to take any. Last platelet count was 670,000. Which meds have the least side effects and are the safest? Hope you are doing well.
Patty
Pennsylvania Age: 53 Diagnosed Dec. 2015
I must be lucky so far. I am 70 and was diagnosed 3months ago- with ET-on 500 mg hydrea 5days and1000mg 2days. Platelet count just over 400,000 now. Jak2positive. So far so good -marion Canberra Australia.
Gender;male
ethnicity;white british
Hi everyone, my name is Andrew. I live in the united kingdom(county of Wiltshire). i am 41 years old and was diagnosed with ET 3 years ago, found out after having an accident at work. I started with interferon alpha injections(approx 6 months) but constantly iched so my haematologist put me on hydrocarbomide capsules x 2 daily plus asprin,(last 2 1/2 years). Dont know which is the worst iching from the injections or the constant headaches,pain in my feet and hands,night sweats and general aches all over from the capsules. Does anybody else get this much trouble?.
My count was at first 950.000 microlitres but has now stabalised at around the 290.000-320.000 microlitres.
I lost my full time paid job due to my headaches and have been a full time dad to my two young daughters since. though i keep busy with my voluntary work.( it keeps my mind off the condition).
I do not know anybody else in the U.K that has ET,though my doctor says approx 60 others have this condition country wide that they know of. Would be great to hear from them.
Hi my name is nicky i live in the west midlands in the uk, i have et the highest my platlets have been is 18 million ,im on asprin and hydroxyurea,down to 5 now and slightly anaemic.i have itching to, really bad sometimes and blurry vision.i seem to feel tired a lot but the doctor says its not connected.i have pins and needles ,sometimes dead hands in morning and restless feet at night in bed.im 46 years old had et for past 6years but only found out just under 3 years ago.no known cause for my et hope your feeling better x
Hi Nicky, my name is Jan and I was diagnosed with ET
2 months ago. I also live in the West Midlands and attend a Hospital in Redditch. the UK, have the same symptoms apart from itching, always feel very tired. My count was 900 and has gone down to 600. You are not on your own with this disease, and we all hope things will get better in the future. I am 70 years old, and have a son your age, and would not like him to have to put up with something like this. Keep smiling.
Hi Andrew , I am from Singapore and 41 years old this year . I suffered from severe itching of the legs when I switched to interferon . It was so bad , I almost went crazy . One day , after many months of severe itch , I woke up one day with no itch at all . It was a huge relief !
Hello, Just wondering how everyone deals with the fatigue? I am wiped out and look like a walking Zombie. I am on 325mg Aspirin a day only. Just had a bad episode of headaches and my hands and feet hurting/tingling. That is when they increased the aspirin from 81mg to 325mg it did releave the pain but still just dragging. I sleep 8-9 hours a night (good sleep), I try to exercise at least 3-4 times a week (when I have the energy). I start my day with a Green Smoothie with Hemp Protien, I stay away from processed foods and red meat due to my diverticulitis (sp?). Also the doctor just checked my Thryoid and it is fine.
Hello Sonja! I just thought I would share my experience with fatigue. I was sooo tired most of the time and I tried everything to combat it. I was drinking Red Bull to get through my days and my doctor told me to stop and switch to coffee or tea. I take my vitamins and aspirin at night whenever possible. For some reason they make me sleepy. I know some can’t, because they have to take doses throughout the day. I also consulted a sleep specialist and he determined that I have sleep apnea. I was surprised, because I thought I was getting good sleep since I was out like a light the minute my head hit the pillow. Now that I have a CPAP, life is good. I make it through my entire day without needing a nap. I still have very little energy, but I find that if I eat small meals throughout the day and don’t eat a heavy dinner, I feel much better. I am increasing my exercise and that seems to help alot. I also drink ALOT of water. I feel so much better when I do. Unfortunately, I am now addicted to coffee and tea, but I’ll take that over the alternative. I also get the tingling in my legs and feet and sometimes my arms and hands. For some reason my doctor feels that it’s not a symptom of ET. He also doesn’t believe my headaches behind my eyeballs are a symptom as well, so it can be frustrating. Sometimes it feels like someone has put a rubber band around part of my body and then suddenly removed it. I have those sensations throughout the day. I’ve just learned to take it day by day and not focus on what I’m feeling within my body, but I focus on what’s around me and that helps. Thanks for sharing your story.
Jerrie, I have now gone to my family doctor(who happens to specializes in sleep disorders), and he do not see any reason I should feel this way. So he wants me to start with the SAD (Seasonal Affective Disorder) light therapy, since I live in the Pacific NW he feels I might not be getting enough sunlight. So I bought a light today and will let you know how it works. I did get the same feeling from my Hematologist that the fatigue is not part of ET, but they did up my aspirin when I complained about the tingling and pains in my hands and feet and it helped except now I have bruises all over my legs.
Jerrie
Female 41 as of 2/13
Diagnosed at 38
United States
I have been diagnosed with ET and I haven’t opted to do the bone marrow biopsy. My doctor wanted it done, but my counts have stayed below 600 for the most part. I don’t see the need for it until further treatment is necessary. I am only on fish oil and aspirin. I’ve had fever with chills, fatigue, and tingling along with seeing stars. Luckily, most of the symptoms that I first had are now gone. I asked my doctor to do blood work, because I was not feeling right and knew something was wrong. In the 3 years that I’ve known about it, my count has only gone up as high as 679. I consider myself lucky. My fear is that my life expectancy isn’t as long as my parents. I am told that life expectancy is that of a person without ET, but most of those diagnosed are already well into their 50s and 60s. I hope we all have the longevity we hope for! Thanks to all for sharing your stories.
I thought I’d post about my experience with the bone marrow biopsy. In a nut shell, it was no big thing. In terms of discomfort, getting my teeth cleaned at the dentist is much worse. I stayed awake for the entire procedure. The process required me to lay on my stomach. The spot where the biopsy was to be performed (slightly above my right butt check) was numbed and a needle was slowly inserted until the marrow was reached. The sample was withdrawn, a bandage about 3 square inches in size was applied and I drove home. I was instructed to keep the site dry for three days.
That’s about it…the entire process took less than an hour.
Mike
I had one also and didn’t find it that bad. Mine took awhile (over and hour) as she had a hard time getting through my bone. The procedure didn’t hurt at all but I was very soar for a couple of weeks.
I have a question about finger numbness. I was diagnosed last September with ET and I am currently taking a baby aspirin and 1500 mg Hydrea daily. My last platelet count about a week ago was 575,000 down from 1.4 million at it’s highest.
About a month ago I woke up with numbness in two fingers on my right hand, the pinky and the ring finger. It’s never gone away. No tingling, just numbness. I don’t see the Hematologist until next month but I remembered that when I do see him, he always asks about tingling or numbness in my hands/fingers.
Anyone else had this happen? I figured I’d bring it up next time I go to the Hematologist but maybe I should get in sooner?
I do have the tingling in my fingers and feet but they are never numb. but they do get cold to were they hurt.
I have never taken Hydrea only on 325mg of aspirin. Started with only 81 mg of aspirin but my doctor increased the aspirin to reduce the pain in my hands and feet and it did help.
An update: I went to see my primary doctor this morning and she thinks the finger numbness is related to my job, not ET or the Hydrea. She said if it was the meds the numbness probably wouldn’t be so localized to just two fingers. Makes sense when I think about it. She thinks it’s nerve inflammation from using a computer mouse 10 hours a day at work.
For now I’m going to go with her theory and see if wearing a wrist support works. Thanks for the replies!
hi lynda! i also have tingling sensation in my fingers and feet, but it was never localized to just 2 FINGERS. sorry to hear about it but i think this you need to discuss further with your specialist.
this is quite frustrating to admit but this tingling sensation in my fingers and feet that lead to numbness, is very ordinary in my daily life and i have learned to accept that it. i can’t bike for a long time as it doesn’t take long for my fingers to get numb. vaccuming floor is disgusting as well, my hands get numb in just few minutes. it is simply bothering me. i am sometimes bullied at work because everytime i try to stand after having a 15-min break, i walk like an old lady that can hardly step on the floor due to really painful tingling sensation in my feet.
It’s great that your count dropped so much.How long did it take to get so low? Regarding the numbness/tingling, I’m starting to notice a little more tingling too. I’m not sure if it’s from the hydrea or the ET. I’ve been on 1000 mg for over 6 months. Sorry, I know that’s not much help…
I’ve been on Hydrea since September 2012 at which time my count was over 900,000 and it’s now down to 575,000 so only about 5 months.
Hi everyone,
Female 49 in Ireland ( from UK)
Caucasian
4 kids
I have been diagnosed a few weeks ago. I also have osteo arthritis of my knees and depression. I was found to have have platelets on a routine blood test two yrs ago but the drs made me think it was due to me having a virus at time of testing so I didn’t get it re tested for another two yrs approx. I then got a phone call as my platelets had been high over two yrs.
I was referred to a haematologist as I also had reduced b12 .
I was neg for jak 2 test so needed a bone marrow biopsy.
The bone marrow biopsy showed nothing else and so diagnosed with essential thrombocytosis.
I am on aspirin nu seals 75 mg and I’m also on anti inflamatories for arthritis and cipramil for depression and pain killers for arthritis.
Obviously when I’m 60 the meds change !
My platelets started at 600 plus
Went to 500 plus during tests
When I went recently they were 460
My question to everyone here ….. Do any of you wake up within clenched fists?
Thank you
Do people get tired after big meals?? Is this a problem ?
I also forgot to add I had per eclampsia when 28 and then son was born at 33 weeks as my waters just went… Ten yrs after my daughter was also born at 33 weeks … We thought due to group b strep now I wondering!!
I also have ET was diagnosed in march 2013. I am currently taking hydrea 1000 mg my count was 800 and has vome down to 167 in one month. I feel this was very quick and makes me worry about my other blood counts. My heamotologist is not very informative and I barely have 5 minutes with him. Just blood test and thats it. I have lost a load of weight in a few month and muscle tone very bad. I slso take 40 mg of nexiam as I suffer with stomach ulcers. I wish I could get of them as they sre really bad to take long term . I am 55 years old and up to 6 months ago felt really healthy. I live in Durban southaafrica. I was slso advised by some one on my face book support group to try Interferon.
Hello Lynn, regarding your count dropping from 800 to 167 in one month…something doesn’t sound right. My doctor didn’t prescribe anything until my count was over one million. A normal platelet count is between 150 and 450. So getting down to 167 is good. It sounds like other issues are at work and for ET purposes there is no reason to take Interferon.. I think I would try to get a second opinion.
My hubby, Malaysian. 45 years old, CARL Gene Mutation, we know this sickness on August 2015.
Platelet count ~1200, doctor from Gleneagle told us he is in low risk category so under observation and without medication currently.
He tooks a lots of supplement (Shakelee brand) and maintain healthy life. I really hope he can recover soon and miracle will happen.
Hi, im Claire, 34, northwest uk, white british
Ive had ET 9 yrs now, i was diagnosed after fainting one night and after going to see the doctor who sent me for blood tests, after results came back i was sent to hem put on hydrea and booked in for a bone marrow biopsy, i was on hydrea up untill i got pregnant with my little one at which point i was put on inteferon straight away but my count went to millions and with not having much time to switch and change doses with being pregnant i was put back on hydrea for the rest of pregnancy, had to have a csection in the end and all went well thankfully!, think i was that caught up in the moment of seeing my baby i didnt give a 2nd thought or worry at the time to risks of surgery etc, i stayed on hydrea untill 2 yrs ago when i switched to anagrelide because i was worried about leukemic risks only to be told last yr by a locum hem that anagrelide has risksof MF transformation, so im now thknking of giving inteferon a gd go later this yr, but when your counts are in ‘normal’ ranges and a 2nd bone marrow biopsy last yr showed lower fibrosis than at diagnosis you think why mess about with meds but then you think and worry that the longer im on this drug am i ‘pushing my luck’!, anyways im glad i found this blog and others with ET as it does help to know you aint alone and its gd to be able to read others stories, to be able to help others if we can,
Claire x
Just a quick question, has anyone ever had any advice on long haul flights from your doctors/hems?, ive flown a few times since having ET but not long haul, my hem has said normal precautions like for everyone flight socks/plenty water/move about, said i wouldnt really be any greater risk than someone without ET, other peoples experiences/info would be appreciated, thanks
Claire 34
ET
Anag/asprin
Hello Claire,
I have travelled extensively between the US and South Africa and Israel – never had a problem. I tend to sleep on flights so each time I wake, I do the same exercises they recommend for all traveller’s to lower the risk of DVT. (you can do an internet search for the exercises).
Hi I’m a 47 year old british women living in essex I was diagnosed with et 2 years by a routine blood test, after falling critically ill and suffering a stroke last year they decided to start treating my et and am currently on hydroxycarbamide with good effect although I’m not a lover of taking it, I also tried inteferon but could not cope with it. Nice to here from other sufferers makes you feel your not alone
hi Caroline! i can fully understand why you don’t like interferon, well, i had my first shot last week and it’s damn making me feel totally handicapped. you mentioned HYDROXYCARBAMIDE – well, that’s the only thing I haven’t tried. will research on that as i am curious. it could be my other option as well. thanks for sharing. yes, you’re not alone fighting with ET. one thing for sure, one should not get complacent with having bloodtests and check-ups…. ET has long asymptomatic period and then boooooom, when you don’t take care, you’ll be in deep trouble. God bless!
for the survey:
Name: Rex Nemesis Rivero
Country: Philippines
Sex: Male
Age: 23 (as of 2013)
Ethnicity: Asian
Hi there! thanks for sharing your experience. I can simply relate to all your pain and worries. I am 39 years old, asian, but now lives here in Denmark for the last 6 years. I was diagnosed with ET since 2008, just few months after I first gave birth to my eldest daughter. I have been to all sorts of medication like you did. First, I took HYDREA (hydroxyurea medac) for 2 successsive years when my blood platelates count sky-rocketted to 1.3M with consistent blood test every14 days and check-up with my blood specialist every month. Then, as expected, long-term usage of hydrea took its toll on me that I have to shift to Anagrelide for like 9 months and then I had this bouts of nausea & vomitting. I have to go back to my hydrea tx again and for like a year now, my specialist had me try Pegasys Interferon. I had my first shot last week, but I feel horrible. But, I have to give my body the chance to get use to the treatment as Hydrea has more deadly consequences then Pegasys. Since I was diagnosed to have ET from 2008, I always had consistent blood test every 14 days, sometimes every month when my platelets count is just around 400-500thou……. One question for you: did you have severe muscle pain and spasms on half of your body.I am having right side body pains right now I can hardly sleep.
@CLAIRE: i come from the philippines and now lives in Denmark for the last 6 years. Recently, my mom got severely ill and i felt the urge to go home to ber with her. Am the youngest of 7 children, and my parents are obviously on their sunset years (both my mom and dad are 83). I called my specialist to make sure am ready for a tiring flight travel of approximately 17 hours flying time. My blood platelets level wasn’t that bad at all, 679,000 and still my blood specialist said it is not wise for me to fly. He added that if i’d take the risk, I just have to make sure I secured myself travel insurance that can finance me when something goes wrong. I MADE UP MY MIND AND STAYED WHERE I AM. I can’t be selfish you know, I still have 2 little girls that need me (5 yrs old & 3 yrs old). Last December 2011 me and my hubby and kids went to the Phils and fortunately I was given a go signal by my specialist as my blood platelets count was nearly normal, 405,000 …. but of course, i had to buy an expensive pair of flight socks to improve blood circulation during long hours of less mobility. Make sure you drink lots of fluids and when it’s not so turbulent, I advise you to get up and have a walk to improve circulation. luckily for me I have 2 little kids that needs to be changed every now and then. They themselves can’t be at one place, so I have to walk them around as they got totalky bored just watching movies…. i didn’t have any problem on my way to the philippines but on our way home here in Denmark I had severe migraine and dizziness and finally threw up when we arrived in Copenhagen….. i hope that gives you an idea, after all, the choice is still yours!
Hi Julie, thanks for your reply, i wanted other peoples opinions as it seems all docs/hems have diff opinions and advice alot of the time when it comes to mpds/n’s , im all booked and paid for to travel to florida with my family and have paid an extra premium for myself with having ET, my little one is 4 so ill be up and down the plane with him im sure during the 9 hr flight, ill buy some flight socks, stay well hydrated and move about plenty, my bloods are all in normal ranges and have been stable for quite a while so think maybe thats why my doc werent too worried as long as i take precautions, but you do worry when you have young children, wanting to keep urself safe and well for them, thanks for sharing ur docs opinion with me, take care
Claire 34 UK
Country: Denmark
Female, 39 yrs old
Asian (philippines)
Hi Claire! i think 679,000 isn’t really a scary number but I have been sick with all these side effects for the last 3 months… my dizziness is uncurable,,, done MRI and CT scanning and it’s all normal…. the docs blamed it all on hydrea- FAIR ENOUGH! i am not in good shape on the first place… happy trip and take care.. wish you fun fun fun and lots of fun and safe trip home….
hi everyone! am addressing this question to those who are suffering from tingling sensation and numbness in both fingers and feet….. Have you guys ever tried some feet/hands therapy to alleviate this condition? if yes, did it help? how often do you guys go to therapy? thanks… hope somebody will share me tips and advise about this as i need it badly.
Hey Julie! When I first started Hydrea, I had those feelings. My GP sent me to see a neurologist and he ran a test on me. It all came back negative. I’m not sure how long I had the tingling/numbness but it went away on its own! Once in awhile if I’m feeling cold, usually one of my toes will go numb and turn white, but soon after I warm up, the color is back.
hi my name is nicky i am 46 years old my platlet count in jan 2013 was 18 million beforehand i kept getting a bit of burning in legs and feet blurry vision but nothing else.i am now on hydrxyurea and asprin platlet count now 5 but im slightly anaemic now but nothing at the moment to worry about. i think the tablets might of caused it i just hope the essential thrombocythemia is not turning into the myefibrosis disease.i am monitered every 6 weeks now as i have just started taki hydrxyurea ,this et really scares me sometimes but i try not to think about it to much but its hard xx
I live in the uk nicky x
Hi Bryan, it’s really great to see that your ET is in remission from the interferon. I am 38, Filipino (Asian, yay!), and also was diagnosed with ET in Feb. 2010 when my platelets were over 1 MM. I am currently on just aspirin and iron – stopped hydroxyurea last Oct. because I wanted to prepare for pregnancy. My platelets are now 3 million, with no symptoms and never had any side effects on hydroxyurea. I didn’t like it because of its toxicity as a chemo agent. Because my platelets don’t stop going up, they want me to go on some medication, and I am considering interferon.
My hematologist told me that some ET patients have gone into remission with Interferon, such as yourself. You have been in remission which is amazing. I’d like to know: Do you have the JAK2 mutation? I do not have the JAK2 mutation. Also, did you do the Interferon injections on yourself, or did you have to go the hospital? And how many times per week did you do it? I am concerned about the side effects. Any advice you can offer would be super appreciated. Thanks!
Hey Liz, sorry to jump in but I’m looking for more information about women trying to get pregnant or who is already pregnant and have ET. I noticed that you said you are preparing to become pregnant. Have you had any luck and if you had, have you had any complications? The info I have seen are dated back many years and would like current info. I too one day would like to try to conceive, but the more I read the more it scares me.
Hi Jenn,
Sorry am just viewing your post now. So far I have not been pregnant again since miscarriage in Jan. 2012, have not tried. I am off all meds now including aspirin and iron. My platelets have gone down to 1.9 MM on their own.
I decided not to do Pegasys Interferon against Dr. advice as I wanted to try being pregnant without drugs and did not want to feel ill from interferon… I have read many accounts of pregnant women with ET (from ET group on Facebook) having no complications and carrying to term about 50% of the time. It’s a crap shoot. Some have a terrible time with pregnancy. Fortunately I am without any symptoms at all. The concern with me is clotting but when you conceive, your platelets naturally go down. Probably best to see a maternal fetal medicine specialist. What are your counts and what complications do you have now?
I have ET since 2010, last year ie.e 2013 in May, 2013, i discontinued the normal line of treatment and started with ayurveda when my count was around 450000 but as of today it is around 1051000, but still continuing ayurveda line of treatment, anyone know about any cure for this ET
I have completely changed my diet and now pureley on less oil and less protein diet.
I do not know how I got it but just wondering was it due to change in DNA in my body due to excessive drinking of Coca Cola and other areated drinks. We need to find out what we had for the past 10-15 years, is it due to heavy drinking of coke, etc., need to find out.
I would also like to point out one thing i have noticed that when i had malaria in 2006, my platelets came down to normal i.e. 275000 something from 670000 something
That is interesting Paul. In ancient Rome one of the kill or live cures for tertiary syphilis was to get Malaria. The high temps involved killed off the bacterium. Just recently the Mayo clinic injected a woman with measles. She ran a high temperature for a day and had a bad headache, the next day she was cured, for how long we don’t know. But another patient treated the same way had already had measles and it didn’t work on him.
I like looking through a post that can make men and women
think. Also, many thanks for permitting me to comment!
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Hi,
I have been diagnosed with ET in 2011, dont know whether it is primary or secondary, was taking hydroxurea till May, 2012 since then discontinued and went for alternative treatment Ayurveda, when I discontinued it was around 540000 but since then when upto a maximum of 1051000 but has been in the range of 1000000 to 1051000 for the past 4 months and only recently it went down to 964000, my blog https://cureforet.wordpress.com has the complete details and will be further updating..
I also suffer from the same condition was diagnosed two year ago , I take hydroxycarbimied four days at one and three on the other three , I’m also prescribed aspirin daily , since being prescribed these treatment thankfully most months my platlet levels r normal but on the occasion it can b slightly high again .
I, too, have been diagnosed with ET and my platelets reached 1.675 today so I just started Hydroxy 500 mg. I have been dieting and have lost 50 lbs this past year and with the dieting my normally very thick hair has been thinning, so now I am very concerned about this drug and what it will do to my body. Have read the comments and found them helpful. Would appreciate more encouragement as to how to live with this. Thanks for all the support.
Hello,
I am going to be 50 in a couple of days, and I was diagnosed with ET days before my 34th birthday. At diagnosis, my platelet count was 2 million and I was prescribed Agrylin. I am still taking Agrylin and baby aspirin – 16 years later. I have had a couple of events that were diagnosed as “minor strokes” or TIA’s. I had a short stint on Hydroxyurea – I did not want to switch but my doctor felt that my platelets at about 850,000 at the time, was too high and wanted to try the Hydroxyurea. After about a week, I developed a rash on my abdomen – and (happily) discontinued the Hydroxyurea.
I exercise (not as often as I could), and I try to follow a healthy diet. I try to reduce stress by walking or practicing yoga. I feel perfectly fine and live a normal life – my platelet counts are usually between 575,000 and 780,000.
Hi Darnel, i also take agrylin, was just wondering if you get the racing heart beat?, thanks, Claire
Hello Claire,
Yes, I do. Many years ago, I was prescribed a daily dose of Atenolol to help with the racing heart and shortness of breath. I have since reduced my dose of Agrylin, and I now take Propanolol only as needed. I am very aware of how nutty this sounds…… but have noticed that if I take my Agrylin and I eat a large breakfast of eggs, bacon,etc., I will have severe palpitations and shortness of breath. If I have cereal – I don’t feel it. I also cannot take it right before bed time because lying still makes me more aware of the pounding and I can’t fall asleep.
I read above that you were on hydrea – I tried that – I just did not like being on it. It did not make any difference to my platelet count.
Hi again Darnel, i found with the hydrea it messed about with my other counts too, where Agrylin tends to just be effecting platelets, my count is normally around 270/280 give or take, i have my own weird thinking of taking my meds …. i take 3 capsules a day (used to be 4), i split them in 2 doses, i prefer to take them towards the end of the day so some around tea time then the 2nd dose b4 bed bcoz in my mind i think that while im on the go all day my hearts beating faster than at rest so wouldnt like to take my meds and have my heart going way faster again, so i take mine when my day is slowing down, feel im trying to be kinder to my heart 🙂 , think we all have our own little ways, do you mind me asking if you have any concerns of long term use of agrylin?, and have u had 1 ormore bmbs since diagnosis?, thanks, Claire
Hello Claire,
I do have concerns about long term use, but I still feel better about taking Agrylin long term than i would if i were taking Hydroxyurea. I had a second bmb about six years ago, and the results were good. When you say 3 capsules a day….. are you taking 3 x 1mg or 3 x 0.5mg capsules?
Hi Darnel, im taking 3, 0.5 caps a day, i just keep reading that with this med the risks are higher for risks if MF, thats what worries me, problem is none of the meds for our mpds are great and come without risks i suppose 😦 , hope your well, Claire
Hi,
I was diagnosed with ETin January 2013. I take Hydrea 500 and Asprin 75 mg.
Recently we found that my leg fingers were becoming blush so got a APPG test done and I found that the blood circulation in 5 leg fingers(Both legs) has reduced. Doctor have asked me to stop taking Asprin and started Clopivas AP 75 and Dilzem 30. I donno what to do, it is getting tougher the day goes by. I experienced hairfall when i started taking Hydrea but now it is normal but this whole thing still concerns me. My life has changed drastically, it just changed me a lot. I keep reading articles on this but this is one good blog where i can share as well as read all the experiences. I hope the find the cure for this ASAP. Anyone who experienced the fingers getting blue/black? Let me know what did you do get it normal.
I am Nikhil/India/24
Thanks a ton in advance!!!!!
Hoping to here from you soon and Brayn you did a great job starting this. I was thinking of starting 1 of my own but found this.
Hi, I was diagnosed with ET last year after my Primary Care doctor found the elevated platelet count. It was strange to see a Hematologist in a Cancer treatment place, since I’m extremely healthy and athletic. I usually comment that I must be the healthiest person visiting the place!
The usual treatment with baby aspirin will not work for me, since I have had bouts of ulcerative colitis since 1993, and sure enough, trying the aspirin last year in the spring set off a flare-up. In May I started on 500mg of HYDREA…and I have had 3 colds since then…two back to back in the past 3 weeks. I’m hoping that this will not become the usual deal for me. I’ve now read that UC (ulcerative colitis) and ET may sometimes go together. The good news is I’ve been flare-up free from the UC for nearly a year now…but this sore throat into sniffles stuff has got to go!
Country: United States
Sex: Female
Age: 56 (55 at diagnosis)
Ethnicity: Caucasian
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I have been on Hydroxyurea for almost a year now and as I was reading these posts I noticed many of you have posted that you started on Hydroxy but then switched to something else.
Why the switch? Were your other counts being affected? Were you having bad symptoms? My doctor told me I’d probably be on Hydroxy the rest of my life but when I see many of you saying you had to switch to something else, I’m just curious why you had to do that.
I was on Hydrea for 5 years. One of the side effects was that people of color – it would make our fingers and toes darker and look deformed (according to my Hematologist, but the oncologist has never heard of it doing that). Sounds bad and nasty huh?? Now I’m on Agrylin. If the Hydrea didn’t do that to my extremities, I would still be on Hydrea. HTH
Hello Lynda,
I started on Agrylin, and felt fine (normal side effects which were tolerable). My counts were then on the high side for a while, and my doctor wanted me to switch. I did not want to switch, did not like the idea of being on a “chemo” drug. After taking it for a week or so, I developed a rash and stopped taking it.
Darnel,
I too am having to wrap my head around taking a “chemo” pill the rest of my life. The hydrea is working though, I recently saw the hematologist and my count was down to 375,000 from a high of 1.4 million last September. I’ve recently noticed my hair is falling out which is not that common with hydrea and I too developed a wierd rash on my eyelids but my white and red blood cells counts are holding so that is a good thing. I guess for now I’ll just stick with the hydrea but it just seems a lot of people posting on here are using other treatments so thought I’d ask about it.
I am suffering thrombocytosis I do not know where to get help, I’m @ Pretoria
I’ve been on Hydrea for over two years…I really haven’t noticed any side effects. My oncologist prefers Hydrea over Agrylin because it is not as hard on the liver.
Hi All
Nyree from New Zealand here (42 year). Heading today to get my results form my bone marrow aspiration and been reading heaps about ET that was picked up during bloods before a hip replacement 9 weeks ago. Not sure how I m feeling but thanks for the support you have given me form your stories.
I was diagnosed with primary essential thrombocytosis about 18 months ago and also tested positive for the JAK-2 mutation, polycythemia vera as well. I am on Hydrea with no real side effects. I am 52, white female. My only complaint is that I have horrible itching after showering and also shortly after waking in the morning. Has anyone had these symptoms? My doctor said the Hydrea would help that and it did for a while but now it is getting bad again.
Results positive so the journey begin. On Aspirin to start with as levels are high, but at the lower end, just a wait and see 😉
Hi everyone,
My name is Mark 36 years old from Australia and was diagnosed with ET in 1999. Up until 12 months ago I had been treated with Interferon and had never had any problems apart from the odd bout of tiredness. When I was diagnosed my platelet count was up close to 2million and while medicated it had come down over the years to about 250,000 so things were great.
They have taken me off the interferon due to an abnormal liver function test but it doesn’t seem to have been bad enough for them to follow up on as the tests had been like that for about 2 years now and since being removed from interferon there has been no change in LFT but my platelets have gone back up to 700,000
They now want to put me on Hydrea but I am rather hesitant as my wife and I are about to start trying for our second child and reading through all the side effects it definitely doesn’t fill me full of confidence especially for the long term.
Feeling a bit down at the moment so any feedback would be great.
Thanks
Hello, if you’re on Facebook you should join MPN interferon, MPD-Myeloproliferative Disorders and MPD Myeloproliferative disease support. The forums have been very informative.
Hi Mark,
I am 39 and from NZ. I was diagnosed when I was 33 with platelets at 1.2 million. I have been on Hydrea ever since. We were pregnant with our second child at the time of diagnosis. We have since gone on to have our third child. I came off Hydrea for 3 months to conceive but my platelets went back up to 1.3 million. In the meantime we banked some sperm. After some toing and froing my doctors decided there was no risk in conceiving while I was taking Hydrea, so I went back on it. A month later we were pregnant. Our little boy was born healthy and is now 2 years old, and I am back on Hyrdrea.
We will probably used the banked sperm if my wife tells me we are having a fourth child…
The only side effect I have had is the odd strange, localised, headache, but they became less and less as my body adjusted to the drugs. My platlets sit at around 600,000. I get a bit tired in the evenings but I do have three young kids, so I am not sure I can blame that on the drugs!
I wish you well.
Tim
Dear Bryan Tan,
I am Esther Tan from USJ Subang Jaya, Selangor Malaysia. Finally someone with ET from Malaysia. My email is esther@creativerobotics.com.my. Please email me your contact and I would like to phone you and chat about our disease. You mention your haematologist and I would like to know whom you are seeing. Thanks. Waiting for your email.
HI Paige,
Since your doctor has not put you on hydrea, I thought you might appreciate hearing my doctors goals with respect to my case. I am on hydrea and my counts have been hovering between 700 and 850. I was under the impression that the goal was to get my count into the normal range of 150 to 400 but my doctor said no, her goal is to keep the count below a million. As I recall I did not start taking hydrea until my count cleared a million. So your doctor’s approach is consistent with my doctor’s approach.
Mike
went to dr yesterday count is down to 900,000 from 1,350. increased hydrea, this is my first day with increase………….. oh I feel so tired. I think the meds make me feel worse than the illness……………….
diagnosed in November 2013 when changing physicians and she did a CBC. Dr said I will be on meds for the rest of my life that this is not a curable illness just able to control with meds. wondering if I should go to Mayo Clinic for 2nd opinion? any suggestions out there. Age 59/F
Hi Bryan, Glad to find your blog!
My husband is the ET patient – diagnosed in 2008 at age 29, but just now being considered for medication as his platelet counts have jumped way up. The initial diagnosis we pretty much brushed off since he wasn’t symptomatic and required no treatment. He was also diagnosed with Type 1 diabetes a few months after turning 30 so that’s always been our focus! Now we’re coping with the true nature of ET and the idea of lifelong chemotherapy treatment. To be honest, it’s scary. We’re waiting on a second appointment with the hematologist/oncologist to see if the high reading was a fluke, or if his platelet numbers continue to be high or increasing. If that’s the case, I think we’ll seek some more specialized treatment at a center like John Hopkins. His main symptoms are migraines and pain in his hands. Despite being saddled with ET and T1, he does his best to live a healthy lifestyle, keeps positive, and is loving life as a father to our 2 year old son!
Curious whether there are any others out there with T1 also, and whether there are any additive/cumulative effects when it comes to complications.
Country: USA
Sex: Male
Age: 29 at diagnosis
Ethnicity: Caucasian
My husband Bill has recently been diagnosed with et after having a heart attack 6 months ago. The heart attack was a complete shock to us because He is a 42year old non smoker, no family history of heart disease, healthy man. We live in upstate N.Y. and I have been online as much as possible trying to get knowledge about this condition. He tested negative for JAK and on 1.5mg of anagrelide a day. His count is over 1 million and we are very hopeful that this medicine will lower it. We live in upstate N.Y. Any information or ideas are much appreciated. Thank you Courtney
Hello Courtney,
I was diagnosed when I was in my early 30’s. It has been 17 years, and I have been on anagrelide since diagnosis. As mentioned in the conversation above, I was on Hydroxyurea for a very short period of time. As you can see from the comments above, other people prefer to be on Hydroxyurea. Not sure that I have any information/ideas for you, but let me know if you have any questions, I can try to help. Wishing you well.
Is anybody here being treated at Mayo Clinic?
Hi my name is judy amd i to have high platelets and take the same medcation i been and this pill for 5years ….i wish i could take something. Else .
Hello everyone ,
lm Ema , 26 yrs .
Irich female , but I leave in Ttipoli Libya .
was diagnosed 3 years back .
I was taking aspirine but unfortunately had a bad hemorrgic vomiting , had 5 units of blood trasfusion spent days in the ICU , I was shocked my blood pressure droped as well my pulse , thank good im still alive .
I naad to seek a hematologist in Ireland or UK , I need massive treatment , but the problem is that I’ve been in Libya since 1994 ( studying medicine ) , so I need to do a personal security No. as I carry an Irich passport only .
l want to get the benefits of the medical cards , I need someone for help & advice.
Im happy to find who can share my pain …
Thanks Bryan you are so creative ^^ .
Ema
Hi I found out I had thrombocytosis with my first child she is now 11. After having her I went back ant my regular level was between 6-800. With exercise I got it back down to around 450. With my second it was high again high enough that I couldn’t give birth in birth unit had to do it in hospital and they put me on aspirin.6 years later and I’m trying for a 3rd but have had 2 miscarriage in as many months. Knowing it’s my blood that is causing this is hard but I suppose I just need to exercise more and go back on the asprin to keep them down. When I was first diagnosed I thought I must have cancer but this is not the case and you can have children you just need to work a little harder. I’m Caucasian now 30yrs of age and live in Australia. Also not smoking lowers the platlet count
Jade, what kind of complications did you have while giving birth? I’m weighing my options on weather I should try to conceive or not. They only put you on aspirin nothing else? Are you taking anything for the ET?
Regarding pregnancy, I was diagnosed with ET before we had kids. My platelettes run between 400-700. The only drug I have ever taken us a baby aspirin daily. I have two healthy children and took aspirin through both pregnancies. Doctors will ask you to stop taking aspirin in the weeks leading up to delivery. The awesome thing is that your platelettes will drop during pregnancy. My doctor described it like watering down the kook aid because you retain water while pregnant. After pregnancy my numbers returned to being high.
Thanks Lori! Counts are down to 246! My hemo put me on interferon while I’m trying to conceive. I wish it was just aspirin only. It’s nice to hear both pregnancies went well!
Amanda Roper USA female 24
Hi, I was getting non headache migraine, terrible pains in feet and legs, and put on Vit D3 that reversed these symptoms, but further blood tests showed my platelets were 900 plus.
I am borderline diabetic take medication and 6 panadol osteo a day, 2 caps of Vit.3 and take asprin, and medication and heart aCE’s but saw a Haematologist, and he prescribed Hydrea capsules. I feel depressed and without much, but someone told me this was normal, even though I take a mild anti-depressive tablet Extine, no initiative to go out but – I have my first blood tests results this Friday from a specialist. I am also JAK 2 mutant positive and my Mum died of AML but she was 91. How long will these side effects last?
Patricia, Armidale NSW, Female 71.
I just feel I can not cope as well as I did. But one day I had flu like symptoms, now I do suffer from rhinitis and sometimes get a mild asthma type tickerly cough. But I rang a friend who is a medical person and she said leave off Hydrea for one night. I took an Avil and the symptoms disappeared. What annoyed me the doctor I saw gave me a piece of paper with rough instructions on it, although the pharmacist did give me a hand out on Hydrea, and he is not contactable.
It’s good to have found this blog! I was diagnosed with 1.7million platelet count last year. I stopped taking meds for a while thinking I was well enough until 2 weeks ago, I had a rebound with 1.8 million. I’m now continuing medications with Anagrelide and Hydroxyurea.
I’m from the Philippines.
I’m also a part of a support group for ET patients on Facebook. https://m.facebook.com/groups/456028451193700?ref=bookmark
Hi Liz and all, there was something about the altitude one lives in, for example, I live 3,500 ft above sea level in a temperate region of the Northern Tablelands of NSW. One report said often when I person moves to sea level, the platelets return to normal. Anyone here live in a high altitude?
Keep well
Patricia
I just got back from my doctor and from ET, now my disease is PV. Apparently, my hematocrit and rbc levels are sightly higher. Might only be because of dehydration.. who knows? My doctor said it didn;t progress, it’s just how MPD’s are. Good news though, from 1.8 million platelets, it’s down to 800k. And I havent felt the usual symptoms since I resumed my medication. I do hope I recover quickly.
Hi Liz and all, Has anyone here had a bone marrow test. Would not that show what is causing the problem with platelets, some damage or whatever. Platelets only last in the blood for 5 – 9 days before they are replaced. Mine were 950 instead of 450 or lower. Anyway will see a specialist on Friday who ordered more blood tests too. The haematologist I won’t see until June after another 2 blood tests.
I was diagnosed 4 months ago after the genetic testing came back positive with the Jak2 gene mutation. I have passed on all treatment aside from low dose aspirin and my platelets went from 1000 to 800 on their own. I am continuing to pass on hydroxeurea as long as I can. I am a 30 year old female.I have had no symptoms of ET proper but many symptoms of what they aren’t sure of otherwise. Ex. Shortness of breath, chest pain, gastrointestinal issues, joint pain, fatigue. If you want to chat, drop me a line. Coliflower24@gmail.com
Hi colleen, well folks I went to visit another doctor who treated me in hospital, he is Dean of the Medical school of our university. I was given my blood tests that were taken on fasting with the test from the Haematologist. I told him that I had symptoms of ET before I was put on Hydrea, and given Vit D3, the problems cleared up in weeks. Then a month ago this visiting Haematologist (who I thought was a bit gung ho, personally) put me Hydrea, without any instructions other than if I felt off like flu symptoms to stop them? And if I had mental confusion (that I have complained about since). But I couldn’t contact him. My platelets are down to 613. This specialist physician told me he would try and contact the doctor, but maybe my dose should be reduced. I can’t they are complete capsules. My diabetes was 5.7 AC1 test, and cholestral 3.9. He said I could have a bone marrow test, at least to put my mind at rest, and living in an elevated altitude does increase platelets, we are colder here and our blood thickens, and if we go down to sea level then they will come down again. I am positive for Jak 2 mutant. But he felt alternative treatment can be given as an alternative to Hydrea. Maybe Medicare will pay for four weeks at the sea side to prove that altitude does affect platelets, LOL. I wonder if a study has been already done on this?
I was 36 when I had the diagnosis a year ago (JAK 2 mutation). Im a female, caucasian and from Denmark.
Sophie, welcome, I hope you are feeling OK. I’m 71 and my mother died of AML, but she was 91. Have they given you any other blood tests?
Sorry for late reply. Yes, I had a battery of tests performed. Went to my haematologist every 3 months but now only every 6 months. My platelets are always lower than 600, lukily. Im talking an aspirin Daily.I try to live a healthy life with Daily exercise (I have a dog that needs his 3 Daily walks;-), healthy food and then I try not to stress too much. The latter is the biggest issue. Im a phd student with only two left to finish my thesis. Im working quite hard and Im stressing to meet the deadline. Its difficult to explain when u dont know all the details but in short Im delayed with a few months due to reasons which is out of my hands and my scholarship is running out in two months. Ill be struggling to finish my thesis (and a load of other work) being pressed to work more and then Im out of a job in two months. Ill probably only get a few days of summerholiday in order to minimize the delay. On top Ill be without a patcheck for 2-3 months depending on the extent of the delay. And then Ill have to find a new job after handling in my thesis. Hopefully I will not have to great difficulties finding one. Im struggling with fatigue (which is actually the reason why I was diagnosed with ET) and at times I find it difficult to concentrate. It really does not go Well with a busy career. I had a wake up Call a month or so ago. I was trying to ask my boyfriend to Pick up a basket but wasnt able to find the word “basket” in my vocabulary. The nearest word that came to mind was “box”. This has happened ever so often since. Likely due to stress. It scares me. Why would I do this to my body especially when Im sufflering from ET? I try to cut down on social activities as I need to relax when Im not at work. I know that I have to manage my stress but its difficult. If I Cut down on work, the delay worsen and that also stresses me due to financial worries. Its kind of a viscious circle. Im often thinking about quitting and get a job instead although from an academic perspective that would be considered as completely darft so close to goal.
Don’t worry about the brain fog, it happens all the time to me. Congrats about the Ph.D, what are you writing about. I honestly think that they could put your Ph.D on hold once the scholarship runs out. Or maybe you could get another sponsor whom has some sympathy for your condition. Where do you live? If you get that problem out the way after all a Ph.D is some target to strive for, you will and can precede at your leisure. I am doing my last Horticulture cert on bonsai. This completes everything now in the Agriculture, and horticulture certificates. I have a BA and GCA from UNE, but I didn’t enjoy the studies for GCA on line. Prefer face to face. But I passed.
Hi all! I was wondering if any of you ladies has been recently pregnant or are pregnant now? I’m curious as to what medical regimen you have been/are on.
Trying to get pregnant. If I succeed I’ll stay on aspirin during the first six months, (which I’m already on) and Pegasys during the whole pregnancy. I’m already on Pegasys as well, as it may take up to 6 months before it has reached full effect.
Hi Jenny,
I have had two children while on treatment for ET. With my first baby – when I told my haematologist we wanted to conceive he took me off Hydroxycarbomide (which is my usual medication) and I started on the Interferon injections – I also kept taking 75mg aspirin throughout the pregnancy – my haematologist saw me every 4 weeks throughout pregnancy & I also had regular 4 week scans after 20 weeks scan so that obstetric consultant could keep an eye on growth of baby – everything went fine – had to be induced as baby was too comfy & wasn’t budging – and I had a healthy baby girl 7lb 11oz born 2 weeks late! After I had my daughter I was put on warfarin for 4 weeks & did tanziparin injections to stop any clotting. After that I went back onto Hydroxycarbomide.
With my second child – the same thing happened again – came off Hydroxycarbomide & went onto interferon injections before we conceived & stayed on this & aspirin throughout pregnancy – again was checked on regularly throughout pregnancy. One of the reasons they give you regular growth scans for baby is because aspirin can sometimes slow down the growth of the baby – but my baby was growing bigger than average! My platelets also kept increasing even though I was on maximum dose of interferon – it wasn’t majorly high – but they didn’t want it to keep increasing so they decided to induce me at 38 weeks & I had a very healthy baby boy born 2 weeks early weighing 7lbs 10 – they put me straight back onto Hydroxycarbomide the day after I had him & this time I didn’t take warfarin – just the tanziparin for 10 days.
Hope this helps!
Beth
Hi ladies! Thanks for your reply. I am almost 3 months. My hemo put me on interferon before conceiving. So far so good. Platelets are under 300. I have heard so many pregnant ladies getting on warfarin, but my doctor doesn’t see the need for it. I hope he’s right!
Rebecka, are you taking any prenatal vitamins? I did that before conceiving. I think with the help of interferon and the vitamins, it helped me conceive faster.
Sorry Jenny, I’m 71. But I noted some with ET were considering having children? Best of luck.
Hi Everyone,
I’m Simon, from Auckland, New Zealand – 35, Male, and fit and healthy, or at least I thought I was.
I’ve be told I have ET, high 500 platelet count and Jak2 Positive. I have had constant nose bleeds, chest pain and now numbness in my legs when sitting.
I had a bone marrow biopsy 4 days ago, and waiting to hear about that. That was sore.
Nearly 4 years ago I had cerebral venous thrombosis – blood clots in my brain after a running race. I had 4 TIA stokes over a period of a week, and drove myself to hospital. That was a tough period dealing with the pain, healing and family worries. I’ve never been the same athlete since, but I’m not too bad in general day to day stuff.
This new diagnosis sounds like it may be the under lying cause of my previous clots.
I was on Heparin, then Warfran, then Clopidgrel, now aspirn. When I fly I have to inject myself with Clexane.
I’m finding everything quite hard at the moment, after being told I have ET, but my family and especially my partner is finding it very challenging already. We are due to get married next year.
I hope with ET I can still get on and have a nice rest of my life with Chantelle my partner.
Nice to read everyone’s contributions and supporting each other.
Thanks
Simon, I was diagnosed in Auckland (now living in Hawkes Bay) around 5.5 years ago when I was 34. I’ve since had two more little boys (in addition to the one I already had) and have no major issues. I am JAK2 negative but had a platelet count of 1.3 million. I was diagnosed after having sore eyes and headaches.
I try and stay fit and carry on with life – but found the first 3-6 months the hardest, adjusting to the diagnosis.
The care in NZ seems to be pretty good, if not a little conservative.
Tim
Hi Simon, I was diagnosed in march 2013 when my platelets were at 730. I’m jak2 negative. I had TIA and also the bone marrow biopsy which i thought was the most weird experience I ever had and would do it again if need to. My platelet count is now at 1645 and only on aspirin. I do have start taking one of three choices i have. So being at 500 should be ok, hope you are feeling better 🙂
Hi Simon, welcolme, you’ve been through the mill, eh. 500 platelets isn’t that high. But the bone marrow biopsy, may unveil some underlying problem. I suffered before being on Hydrea, pains in my legs and feet, burning and painful, migraine but no headache, and aching back etc. I was found to be 75% deficient in Vit.D.3, took them and whoa within a few weeks they disappeared. I felt like a new woman again. But a blood test showed 900
platelets. So tests for heart problems, I was better than some youngsters. But what pleased me was I felt very well for my age (71) now after a few weeks on Hydrea (that I do not like) my blood platelets are down to 600. What elevation do you live in? NZ is fairly mountainous. They say that people who live in high altitudes tend to have higher than
average platelets, and if they return to sea level, they return to normal. ie.150 – 450 platelets. Keep in touch and let us know what you bone marrow biopsy shows. I want one too, rather than take Hydrea for the rest of my life. I’m JAK 2 positive too. And my mum died of Acute myloblastic leukaemia, but she was 91! Keep well and best wishes
Patricia from Armidale NSW.
Simon, I what to reinforce Bush Bunny’s comments. A platelet count of 500 is barely above normal. My general practitioner did not refer me to a hematologist until I cleared 700 and the hematologist did not put me on any medication until my platelet count was over a million, so it looks like there are other factors at work. Just my two cents….
Mike in Oregon
Mike when I saw the head of the medical school at our UNE, he told me that 600 was not a big deal and over a million is. He was to contact the haematologist and tell him were the side effects I was suffering worth taking hydrea, when there were alternative treatments available. Believe it or not just seeing him or something else, I feel bucked up the last few days. Maybe my system is settling in to the new Hydrea. Thanks for commenting. I swear by Vit D3, or Ostelin.
I may be wrong of course, but do we NZealanders and Australians get better and cheaper NHS deals. Whereas in America they pay more, I am not sure, with this Obamacare deal, is it going through?
Hope you are doing well Bryan,
I’m glad I found this page. Someone so very dear to me has ET and is taking Hydrea 500mg every other day. My biggest fear is stroke due to the severity of headaches that has worsen since being on Hydrea. with a platelet count over 600. I think the dose is either too high or not the right treatment, period!
any advice?
Thanks Clarissa
Please email me at Dishwithclarissa@gmail.com
Hi Clarissa, headaches seem part of the deal, Hydration is key. Get your friend to drink plenty of water, I’m no doctor but it works for me! 🙂
I know it is very confusing and upsetting when there are no obvious signs of illness. Only a doctor can answer you question. Has he had a bone marrow biopsy. Is he overweight and diabetic too?
If you read the pamphlet about Hydrea, it says that it is also used to fight cancer, sickle cell anaema, and HIV? But it starts to attack cancer cells within 24 hours. Something as powerful as this must disturb the system. It lowers platelets too. But I was told it might increase the size of red blood cells. Dish with Clarissa, we can’t give advice on medication as we are not doctors but if you are worried see your doctor again. He/She was the source of prescribing the drug.
Hi I’m Steve Rupp, Male, Aged 56, Had ET diagnosed for 3 years.Hydroxycarbamide 3x 500mg per day + 75 mg aspirin per day. Get a bit sweaty and tired, Working, Swimming Gym Cycle drinking loadsa water, enjoying life. See by Haemo every 8 weeks. Good times!
One of the drugs you must not take when on Hydrea is any other blood thinner. They clash. There is plenty of info on the web about side effects, and if on Non insulin diabetes medication try to lose weight I did and my BSLs and aCI test are now below 6.
I am a 43 year old African American female from the U.S. just recently diagnosed with ET JAK2 negative. Platelets have been high for approximately 3 years been seeing Hematologist for just about the same. Blood work a couple of weeks ago showed platelets at 698, highest they’ve been so far, started out at 530 in the beginning. No treatment so far, just watch and see. Symptoms are pain in legs, headaches, itching, and horrible night sweats. Pain in legs can also be attributed to Trochanteric Bursitis in hips. Confused, so much I don’t know. Is this cancer, I’ve been told yes and no?
Hi Tara, some of those so called symptoms can be related to menopause coming on. Trust your doctor but early high platelets with or without JAK 2 mutant positive, can indicate that you are vulnerable to other blood disorders? As you are African American, is there sickle anaema in your family? I think you would know by now if it is. Try taking Vit D3 Ostelin, it cured my pain in the legs and non headache migraine, auras. Won’t overdose your system.
Darker skinned people tend to be low in Vit D. But Vit D 3, strengthens bones and muscles and prevents to a degree osteoarthritis in women particularly.
Tara, I asked my Hematologist why ET is not cancer, the question really surprised her. But her response was that it’s just not cancer. I guess the key is that cancers can spread to other parts of the body and ET doesn’t. ET just means you have too many platelets and the big concern is that the platelets will clot and cause a stroke. 698 is high but not that high. My hematologist didn’t put me on medication until I cleared 1000. She also said she had seen patients who were over 2000 and who were doing fine. She felt they needed to lower their count but the point is that it’s not the end of the world if you have a high platelet count.
Mike
Thanks for the reply Mike. Reading some of the stories on this site of people with platelet counts much higher than mine living normal lives is reassuring.
Thanks for the reply Mike. Reading some of the stories on this site of people with platelet counts much higher than mine living normal lives is reassuring. Is there anyone out there who is JAK2 negative? Does it make a difference as far as the diseases effects?
Hi ttdanls, I was 900 platelets after one month on Hydrea, 500 once a day, they dropped to 600. However, the initial side effects I suffered have gone now. But my mother died of Acute Myeloblastic Leukaema but she was 91. So they are aware with being JAK2 mutant positive, I could be vulnerable myself even though I am nearly 72.
Thanks, bushbunny for the advice. No sickle cell in my family. Only as I’ve been diagnosed with ET have I considered the pain in my legs might be attributed to something other than already diagnosed bursitis or menopause.
Have you heard of Myagalgia. It effects bones and muscles. Before I was diagnosed with ET, I had pain in my feet and legs,(like farcitus and couldn’t walk properly some days) auras (non migraine headache) itching, stiffness, etc.. My GP tested me for Vit D deficiency and I was 75% deficient. I took Vit D3 (Ostelin) and they cleared up. When I first saw my haemo he said they are also the symptoms of ET. So the condition may be connected.
It wouldn’t harm you to take 2 capsules a day of Vit D 3 (Ostelin) it is cheap in Oz. I did and a lot of aches especially in my feet and lower legs, disappeared.
Hi
I am a white/ british 51 years old woman.
I was diagnosed with ET in 2000, I have had different treatments. Started on Hydroxyurea tablets, but had severe mouth ulcers, I then took angrelide tablets, this made me anemic. I had to have blood transfusions. In 2007 I started Intron A injections, I have had no serious side effects from this, at the most flu like symptoms. My platelets are now well under control.
I watched that video of a bone marrow biopsy, and the patient was awake? Gosh, we put our people asleep with a twilight sedative. I hope so. I am due for a another blood test today or tomorrow, that was ordered by my haemo. I got aches yesterday, mainly in my replacement hip region and lumbar region. And I have sores again that don’t like to heal.
Itchy, about the same size. They remind me of how chicken pox starts and crusts over.I have never had chicken pox. The measles innoculation looks hopeful for some who have never had measles. It’s on the web. She had myeloma for years. She is cured. Done by the Mayo clinic too.
Bushbunny, I was awake for the BMB. It was quick but painful! If you are on facebook, there are several ET groups there. A lot more active there.
Hi bushbunny I had bone marrow biopsy and was awake the whole time. I drove three hours to get home after the biopsy so like jenn said it was quick and think it was the most weird experience I ever had.
Hi all, taking Hydrea during pregnancy is not advised. I had another blood test the other day and my platelets are down to 400 but my GP is worried that I am worried about my condition. She is in close contact with my Haemo.
I have worn a silver bangle for over 40 years, and since I have been on Hydrea it has turned black and bronzey. Anyone had this problem too?
Hullo Brian, read yr posting on ET and wondering how you are coping. My 58 yr old brother had just been diagnosed with ET and right now trying to decide if he should start on hydroxyurea. Appreciate your reply, thanks. Ps we are in Malaysia – Melaka
Azmi, We can’t answer this as we are not doctors, but it depends on the condition and what stages it goes through. Hydroxyurea treats cancer cells and lowers platelets. It is not recommended for women who are wishing to become pregnant or are pregnant. But if your brother sees a hematologist or has a bone marrow biopsy, should indicate which drug he is best suited for. It is a chemotherapy pill, and there are some side effects initially. Depending on how severe they are will dictate the dose etc., Driving can be effected too, and that is why I take mine at night time. best of luck.
Thanks bushbunny. Im in medical research. Im already trying to find other sponsors (fingers crossed) but fundraising is very time consuming indeed. Hoping to get a new scholarship for a few months salary (waiting for a reply as I write) and if not, its out of my own pocket. Ive started to come to terms with that. However, the financial worries do add on to the inevitable stress of Being a Ph.D.Student;-) Nevertheless, it has all made me realise that I need to Explore a different work path when Im done with it. I want a regular job where Im off when I leave the office:-) it is not an option to work on the thesis part time, I will never get it done.
You could get a job in medical research, and they may allow you to complete it and pay for it. Anyway, you go with your gut. And peace of mind. I’m not that academic and did my university studies for personal enrichment, as a mature aged student I don’t think they actually wanted me there. But a Ph.D., you can put it on hold, and return when you feel like it. The work and thesis has not gone to waste. In fact I would think it would fare well if you wish to get a job in a medical research facility.
Country : Australia
Sex: female
Age : 29 (at diagnosed)
Ethnicity : Caucasian
Thanks bryon for making this blog it helpful to read others stories.
My last blood test showed my platelets were reduced to normal range but liver GGT’s were up way beyond normal. My Haemo told me to stop taking Panadol Osteo, that I have taken for years, and six a day. He says long use can upset my liver, as I have had Hep A in the past, that was never diagnosed. I have another blood test in a few weeks, and if they haven’t reduced then leave out the 1 statin I take a day. I get Panadol Osteo on prescription from my doctors.
Hi bush bunny just wondering do u have a facebook account? there is a group on there for support and discussions of people personal experiences with Essential Thrombocythemia, Polycythemia Vera, Myelofibrosis and Chronic Myelogenous Leukemia it is private group
I used to have messages from ET but not recently? I don’t know why?
I was diagnosed in April after having symptoms flashing lights in my eye headaches and had itchy skin which I had of and on for a few years also tingling in fingers. My platelet had increased to 610. I am 69 I have been prescribed hydroxycarbamide 500 mg per day my platelet is now down to 440 my Haematologist says a 410 is a normal level, so keep on with this poisonous tablet. I believe we have to take this for life
Sylvia, as we are about the same age and female, I am wondering if you had any side effects from the hydroxycarbamide? Is this the same as Hydroxyurea ? It’s encouraging to see that your platelets are almost in the normal range.
Thanks, look forward to your response as I have not started treatment yet. I do not have the JAK2 mutation ; a bone marrow biopsy confirmed that I have Essential Thrombocytosis.
Sylvia, I had those symptoms before taking 500 mg of Hydrea, I start two tablets of Vit D 3 (Ostelin) and the symptoms disappeared. I didn’t get headaches though just saw auras.I asked my haemo after my platelets dropped to 400 could I have a bone marrow biopsy, and he said it was not necessary, as I was found to be JAK 2 mutant positive. But I had to cut out Panadol Osteo that I was taking 6 tabs a day, (on prescription) my GGT’s were high in my liver and he thought it was them. I don’t drink.
I am a 28 year old woman and was diagnosed with ET in February after months of tests and a bone marrow biopsy. My platelet count was over 1.5 million when I was diagnosed and have been told I will stay on hydroxycarbamide for the rest of my life until I want a family and then my doctor will put me on something else. I am struggling to find many people who have this condition as sometimes I feel down as no one understands. My fiancé and family are very supportive but I would like to chat to someone who is going through the same as me
Hi Lauren. I’m 29 and was diagnosed 4 years ago. I only take aspirin but my counts are slowly rising and are now above 1.5M. Still contemplating treatment but afraid of them all really. Hoping to start a family in the next years too which is a worry.
Don’t worry you’re not alone! Facebook groups are a great place to hear other people’s experiences.
Hi Lauren, how long have you been taking hydroxycarbamide? Did you platelet count drop? Are you feeling any side effects from the hydroxy?
Mike
Just found out that I have ET. They discovered it not because of any symptoms really, but they took the test because of my many miscarriages.. I’ve just started treatment with “Pegasys”, because of my strong desire to have a sibling to my 3-year old. Hopefully that’ll do the trick!
I’m Rebecka, 32 year old Swede living in Sweden.
Hi Rebecka, all I know is about Hydrea. It does advise stopping it during pregnancy,. But good news, my recent blood tests for LFT, showed stopping Panadol Osteo, actually did lower my GGT’s to 121 from 272. Should be below 35! I am to have two more BTs in coming weeks, but told by my wonderful GP, not to cease statins.
I hope Rebecka your dreams come true, and you dear 3 year old has a brother or sister. At least you are still young that will help.
PS: My haemo told me a bone marrow biopsy was not necessary in my case, as I have had a blood test that showed I was JAK 2 mutant positive. No increase in Hydrea, it is doing its job so far, lowering my platelets to normal level.
Hi!
Jeremy
Female/38
Filipino
For the past few 4 years, my platelet counts were playing around 380 to 600. WBC has always been borderline high and PCV also tends to be on the high side. I’ve noticed that my symptoms worsen when my allergies flare up. I was on aspirin before but started reacting to it so I had to stop. My current internist is suspecting PV (secondary or stress-related as all of these started when my father died) and wants to put me on Plavix as I react to aspirin. I had to do phlebotomy last week (my first time) due headaches. I am wondering if anybody had almost the same trend as mine? Thanks!
Bryan,
First let me say how very sorry I am that you are Battling this disease.
Bryan I feel the need to share with you that this is NOT a blood disorder, which is what my Dad was told in the beginning as well. It is Chronic Leukemia. It is a slow growing Cancer, and the Best thing for you to do for your life is find a specialist that deals with this everyday.
MD Anderson is Very Good, and they will take you.
Susan, there are many degrees of ET., But as I am positive for JAK 2 mutant, but negative for the Philadelphia chromosome, I might have to stay on 500 mg a day for life. But cutting Panadol Ostea, 6 tabs a day, my GGT’s have lowered, but my aches and pains have come back to a lesser degree. So I take 2 PO’s at night, seems to have moderated any of the aches and pains. I’m 72, so past my prime.
Susan…ET is NOT Chronic Leukemia. I’m not sure why you are trying to scare folks…
Respectfully disagree with you. According to Dr Rubin Mesa from Mayo Clinic E.T. Is a type of Chronic Leukemia. See my post posted Dec. 17th 2014.
Susan, blood tests do show sometimes a increased level of platelets, and I was given Hydrea 500 mg a day. This lowered my platelets to 400-500 but my LFT showed high
GGTs. Stopping 6 tabs a day of Panadol Osteo lowered them by half. I have started taking 2 PO at night. But I will be on that all my life, as my mother died of AML, but she was 91.
But having tested for JAK 2 mutant, I was positive, and that means I could get leukema in the future.
Garden Gal is right, there is no such thing as chronic leukemia. Leukemia is acute and generally effects white and red blood cells, not platelets so much. It’s like ‘grumbling appendix’, no such thing, Appendicitis strikes hard.
Your doctor may have been referring for a lay person, the nearest he thought one could understand. Bit patronizing I think. People fear full blown leukemia, but there are several types. There are good treatments available now for most blood marrow disorders, so don’t stress or change your doctor to a specialist.
hi guys..
i have et also and it was started almost 1 month.im working aboard ship but im still here in philippines trying to lower my platelet.my last platelet count was 429 and my hema told me it is normal count but then i have to undergo again for cbc just to check if my count is lowering due to hydroxyurea.im taking now twice a day but last week it was 3x a day nd 2x a day on d nxt day.my real concern is how can i work aboard ship if im having this disease.?
My platelet count recently was 519 (great for me), I’m on hydroxyurea 2x a day 5 times a week and 1x on weekends. I garden regularly and play soccer 3x a week. I’ve been told over and over by my hematologist…keep on being active, it’s great for your circulation and your overall health. I tell myself that I have a blood disorder that has to be treated but it doesn’t have me!
hi garden gal,,
my concern is how am i supposed to know my platelet count once im aboard ship and we are sailing for almost a month before we get to shore?any advce just to make sure that i can maintain my platelet count?
Even when my platelet count was not very stable, I was checked once a month (now it’s once every two months. I think if you follow your Docs advice (is it 2x a day for hydroxy?), chances are nothing will change that drastically. Just get checked when you get back to shore again, and have the results sent where your hema can read them. I also looks at other blood cell counts since the Hydroxy affects them. Occasionally my red and white cell counts are on the low side, but my hemoglobin count is great (ability of red blood cells to carry oxygen…needed for all activities).
actually my other elements are normal nd last saturday my platelet counts to 429 and hopefully this coming saturday it will be normal..thats what im pplanning also if i get aboard ship whenever we go ashore i will tell my captain to arrange an appointment for me to check my cbc to the hospital or wherever available.by the way thanks gal.wish u all the best and god bless.
May the seas be relatively calm for you and all go well aboard the ship!
Has anyone thought of/has experience counting your own platelets? It doesn’t seem very hard from an initial search
if there is a accurate enough way to know like how diabetic patients have monitoring tools
this would help if one is feeling sick with the meds they can decide to stay off of them for a while to feel better rather than pressing on with meds when they are not needed.
I have experienced a full blood count being done within hours in a hospital for my initial diagnoses and I’m assuming if I was the only patient there it would have been much quicker
The appointments are take hours and then weeks before you know the results at times here in the UK
I have recently been diagnosed with ET. I am female, 67 years, Caucasian and I live in BC, CANADA.
I haven’t started treatment yet but have to make a decision soon. My hematologist wants to start me on a low dose of Hydroxyurea. Everything I read about this chemo treatment is
scary. I have no symptoms, I lead an active life; I run 4 times/week, go to spin classes 2/times per week, weight train and yoga 3/ week. I am concerned that this treatment will seriously impact my quality of life. It’s difficult to accept that I now have to take medication that could make me feel sick when I am feeling well.
Has anyone tried alternative treatment such as a Traditional Chinese Medicine?
It is encouraging to hear that some people are able to lead normal lives.
Usually the first treatment is to take aspirin. I can’t take aspirin (have Ulcerative Colitis diagnosis and it will cause me to bleed), so I’m on Hydroxyurea. I play soccer 3X a week, and garden a lot and I haven’t noticed any problems yet. So as far as I know you can remain active and I’m sure your hematologist will recommend that. Perhaps my supplementing breakfast with Spiralina, Maca, Chia & Moringa is really helping. These are super foods full of protein and Maca is supposed to help with oxygenating your blood (since Hydroxy reduces all blood cells I thought this would be helpful). I work at a health food co-op that carries all of these foods in the bulk section.
Hi Pat, what is your platelet count? I’ve been on Hydrea for over three years. I started at 500 mg but my counts were still to high. I’m now taking 1000mg everyday. When the dosage increased to 1000 I felt like I had a mild case of the flu for about two days. Since then I have not noticed any side effects. I’m 59, exercise almost every day. Most likely you won’t notice any side effects.
Mike
My platelet count in 860,000. Thanks, Mike for your encouraging response.
So excited to find this blog! I was diagnosed with ET last week – my platelet counts were 600,000 in August 2013 and are up to 800,000 now. My hematologist has put me on a dose of baby aspirin. She’s going to put me on Hydroxyurea next year for a month before a planned major surgery to bring the platelet count back down before the surgery, but unless my platelet count goes up over a million she won’t have me continue to take it.
Name: Susan
Country: United States
Sex: Female
Age: 53
Ethnicity: Caucasian
I’m excited about this blog too! My husband was diagnosed with ET 5 yrs ago. His platelets were 2 million… YES, 2 million. Dr. doesn’t know how he survived this. He’s been on Hydrox, Anagrelide along with a few other meds. He is constantly lightheaded. Is there anyone out there experiencing this? The only time he feels pretty good is when he’s lying down or sitting in a chair.
I have had et since I was 17 I’m now 37 years old, I also have jak2 mutation and a massive splenogamoly, I have been on various medications throughout the years but back on hydrox at the moment. My main problems has always been my spleen and tiredness, I seem to cope well on hydrox, only side effect is itching and thicker skin (especially on my face), but this drug doesn’t help reduce my spleen size.
I haven’t seen any updates since May 2014. Is this blog coming to an end?
Does anyone know if Traditional Chinese Medicine using Acupuncture and Herbs lower platelet counts?
Hi All! My name is Kelly, I’m 57 & live in NYC. Over this summer 2014, I was diagnosed with ET. I was originally diagnosed with a case of dehydration @ ER. After some testing, the doctors concluded that I had suffered a mini stroke, which repeated itself 2x that same week. My platelets were over 1 million, so my hematologist prescribed Hydroxyurea. At present, I alternate taking 2 pills/day for 2 days, then 1 pill/day. I was granted a medical leave, in order to take care of myself. In the beginning, I felt dizzy, without much strength or energy, and suffered from constant headaches. My neurologist recommended to exercise daily (brisk walking, static bike) to get my heart pumping & more oxygen flowing. July and August were the hardest; in September, I started feeling more energetic. Now, I realize that when I do the walking, I don’t feel so fatigued. I try to eat healthy, so I looked on line for natural ways to keep platelets up: Pomegranates (or the juice), wild salmon, Shitake mushrooms, red wine. These foods are not instead of the medication, but rather a way to enhance better health. I still feel fatigue at times, so I accept it & try to rest. I hope my experience can be helpful to others. Thank you all for sharing, especially Bryan Tan, who began this amazing journey for all the rest of us! God bless!!!! Take care, Kelly PS:Pat, I don’t know if Acupuncture might work, but it’s worth looking into.
Kelly, In your post you say you are looking “for natural ways to keep platelets up.” Just to be clear, with ET you want your platelet count to go down, not up. You can’t go wrong with a healthy diet. Before I started on Hydroxy I went to a Naturopath. He put me on a cleansing diet for 20 days. No wine, coffee, processed foods, only rice, raw veggies and fruit. I lost close to 20 lbs but my platelet count continued climbing. My hematologist told me that changing my diet wouldn’t work, but I had to try. She was right.
Currently I take Hydroxyurea. 500 mg twice a day. My last count was close to a million. I have another blood test today. The goal is to stay below a million and I am concerned that I will have to increase my dosage or switch to a different medication.
I really don’t have any symptoms. I exercise regularly and eat mostly veggies. This doesn’t seem to change the platelet count but it does improve the quality of life. The point is I’ve tried a lot in terms of diet and exercise without much luck.
Mike
Garden Bunny, Hate to disagree with you but ET iis a chronic leukemia. Watch Dr Rubin Mesa from Mayo Clinic Cancer Center on You Tube. It is titled Essential Thrombocythemia Update 2014-Mayo Clinic. At about 36 secs.he states that.E.T. Is technically a type of Chronic Luekemia.
I meant Garden Gal not Garden Bunny
Judy, Garden Gal, I googled around a little and ET does appear to be a type of chronic leukemia. But when I was first diagnosed with ET my hematologist distinctly said I don’t have leukemia. A number of visits later I asked her why ET is not cancer – I mean it seems to be a case of cells reproducing too quickly which sounds like cancer to me – she was somewhat flummoxed by the question and simply said it just isn’t cancer. So there does seem to be a lack of clarity on this issue.
The most common form of leukemia is too many white blood cells, which is not ET. While ET might be a type of leukemia, ET does not have the risks associated with what is commonly thought of as leukemia. So you are both right but the most important point is that people unfamiliar with ET should understand that the health risks associated with ET are very different than those associated with classic leukemia and in almost all cases ET is not life threatening and can be managed as a chronic condition and they can expect to live a normal life span..
Mike
I was at Mayo Clinic earlier this year and saw Dr. Michele Elliott who is a Hematologist. I asked her if this was cancer and she stated yes, and that when you are over 70 you are at a higher risk for a bleeding event. My Oncologist also said it was a cancer. She explained it this way. Whenever a cell changes its structure it is a cancer. I find that the Oncologist I see doesn’t seem to be able to give me answers to a lot of questions. No wonder things are confusing whenever the professionals can’t answer your questions without getting on the web looking for answers. I trust what Mayo Clinic and MD Anderson have to say about ET. and only seek information from them because there is so much conflicting information out there.
I have had Et for 14 years and was put on Hydroxyurea by Dr. Elliott. She said that there is no cure for ET and that they only treat the symptoms. Is a headache a symptom? I am experiencing bad headaches every day. I am now on medication to prevent the headaches and another one if I get an headache. I’m also dealing with another issue that was found in the process of looking for answers for the headache, which is a brain tumor, and have been told by Mayo that the tumor is not causing the headaches, but having ET adds a complication to the surgery to remove it, and would not remove it unless the Hematologist signs off on it. They have no answers as to what is causing the headache. I am asking the question could the cause of the headaches possibly be Hydroxyurea or the ET
I am 71 yrs. old but young at heart.
Judy
Country: united states
Sex: F
Age: 23
Ethnicity: Caucasian
I have been researching this disorder since I recieved the news of my diagnosis yesterday. I have had high platelets since atleast, 2007, but it was not looked into until recently when I discovered I am pregnant October 9, 2014. My platelets range from 500,000 to 600,000 and I am also Jak2 positive. I am currently 16 weeks, 2 days pregnant and have had a healthy pregnancy so far. I have been ordered to take a 81mg aspirin daily to reduce the risks of complications to the baby. I do not know much about the disorder since I just discovered I have it, yesterday. If anyone can share any information about this disorder with me, I would be grateful.
-Bridget
I take hydrea I fear it daily.. I don’t want to take hydrea , yes I take it for ET … I have very high platelets found in my test when I waa 13 years old…… I am afraid and I am 44 years old now , I’m tired of being afraid
..
Hi Windy , don’t live in fear of the medicine . You can try other medication instead of hydroxyurea . I am more concerned about the risk of mylefibrosis later in that can occur after years of ET
Windy, my husband is on hydrox and has been on it for 5 years. He is constantly light headed too. He was first diagnosed when his platelets were almost 2 million. They go up and down, up and down. I know it can be very discouraging, but you need to take the meds. I can’t believe how many people have been diagnosed with this horrible blood disorder. Hang in there. Happy Holidays to you & yours.
Judy, my husband was never told that ET was a cancer. He did say that it could possibly turn to leukemia, but not likely at his age. He’s 78 yrs. This is interesting info and I will talk to his dr. next month. Thanks, Judy.
Ginny, Mayo Clinic calls ET is a form of chronic leukemia which is a slow growing cancer. I think his Dr. is referring to acute leukemia which is different. At our ages I think they are more concerned about bleeding events such as stroke, blood clots, etc.
Happy Holidays to all.
Jessica
29, from USA living in Spain since 2010. Platelets consistently 900 or above since 2010.
Advised to take aspirin daily, but have been hard headed and haven’t.
Now considering pregnancy and hoping to have a successful and no complications process.
Thought I should begin to investigate this.
Eat pretty healthily, vegetarian for 15 years. Only olive oil for cooking. Don’t eat much processed food.
Hi Jessica
I would follow doctors orders on the aspirin. Im 37 years old fremale with no kids. I talked to my hematologist re pregnancy and she told me that with proper monitoring it was not likely that I would have a different pregnancy than healthy women. However, bear in mind that my platelet counts are somewhat lower than yours (around 500). During pregnancy the female body undergoes physiological changes which Im sure you already know😀As these include hematologic and cardiovascular changes it seems logical that women with ET are more at risk of cardiovascular events but this you can consult your haematologist with. I wish you a healthy pregnancy and let us know how it goes. I would be absolutely fantastic to hear about a healthy pregnancy!
Sophie
Name: El. Alex
Country: Malaysia
Sex: Female
Age: 39 (as of 2015)
Ethnicity: Thai Indian mix
Hi Bryan,
Currently I am being monitored and treated in Hospital Ampang. I am on aspirin glyprin 100mg daily for a month or so now. My hematologist told me that he is unsure if i have pv or et as my symptoms are pretty much mix and match. Apart from cbc and the symptoms, i also suffer a severe back pain daily for over 20 years. After taking the aspirin, my back pain has reduced a lil but now i get bruises every now and then on my body. I would like to get a second opinion from diff hematologist. Could you be so kind to recommend me to another place? Thank you so much in an advance.
I was diagnosed with ET in Nov. 2011, My life has really been effected by this blood disorder, for some it been simply taking hydrea, Not for me I am on Hydra and agralide my platelet’s stay in the millions. I am currently in hospital an platelets are 1,550,000,00. An now my white blood cell count has dropped to. 1.2 doctor’s don’t know why. They have started my on new injection’s by the name of Garnix to munipalate my bone marrow to produce more white blood cell’s. Don’t know if anyone else is have this much trouble are not, but I just wanted to let somebody that you are not alone. I live in the United States Of America, I’m 49 yr old female
My husband was diagnosed 6 years ago with ET. His platelets were almost 2 million at that time. He has been on Hydroxyurea & Anagrelide and for the past 6 years. He’s had the plasma pherisis done twice. This is a procedure where the blood bank comes in and removes all the excess platelets. He’s had a blood transfusion due to his low hemoglobin and goes for blood work 2-3x’s/week. I think it’s time for the bone marrow to get checked out. He is constantly dizzy & lightheaded which is caused by these meds. I hope the Garnix will help you. Sounds like you started with this ET at a very young age. I wish you the very best.
i also have the same disorder i am only 36 and live in California. my count is actuakly way hidher over 2 million. have been going to the hematologist for about 3 years uped my of hydroxyurea hopefully can get it down also have a lot of same symptoms ans more ,very hard to know i will never get rid of my disorder just pray it doesn’t take over my life
Hi im 31 from New Zealand, I have had ET and have had so for the past 8 years, only symptoms is headaches which asprin seems to sort them out. See a few concern’s with people that have ET and pregnancy don’t concern yourself I have a healthy little girl now 8 months old. No problems getting pregnant infact my platlets dropped to usual range (they are normally 1100) Otherwise fit and healthy and no medication expect asprin
Hi.My name is John and I live in London.i am 65 years old and was diagnosed with ET last year.looking back I think I have had it for at least 4 years.i was put on hydroxycarbomide and that worked well for month untill one day my temperature shot up to 104 and I was rushed to hospital.i am now on anagrelide which seem to work,but slowly.my platelet count is now 596,having gone up by 100 in a week which I don’t understand and will discuss it with my consultant today.
I have it also .So glad to here about others.For me I am always to exhausted to do what I likeI have had it for over a year and take hydroxyureaalso my bones ache all the time
Yes wyoming usa female 32 white. Have problems since 2004.
We live in Rhode Island. My husband was diagnosed in 2009 with ET and continues to be on Hydrox & Anagrelide. His platelets were nearly 2 million at that time. Since his platelet count fluctuates from very high to very low, the dr is constantly changing the dosages. He continues to feel extremely lightheaded. Also, his hemoglobin has also been down to 7.0. He’s had a blood transfusion which boasted it a bit, but the count has not exceeded 8.0. He is scheduled for a bone marrow procedure next month and hopefully we’ll be able understand WHY these counts are all off.
It’s so frustrating dealing with this ET, but I’m happy to read others blogs and how they’re dealing with it. It’s just not easy.
I take hydrox because I have thickening of the blood how they found out when I had a stroke then a smaller one.Was not given much Data then.I live in Nanaimo BC Canada
Sharon Meeks, I forgot to mention that my husband has also had a few TIA’s (mini strokes) as well. ET is a disease that is not curable, but is treatable. This is what we’ve been told by the hematologist.
Just started on hydroxyurea last week for ET but await bone marrow bx. results.Feeling well and so far no problems with med. Platelets >700,000, down from high 800’s before starting hydroxy. JAK2 pos. Had a heart attack in Nov. And mastectomy for breast cancer 6 wks.ago. no chemoor radiation.I really think the ET is related to the heart attack but not verified by anyone yet. My oncologist/hematologist recognized the pattern of elevated platelets when I went to see her. Happy with all my care and prayers by everyone. God’s in charge and blesses me. I greatly appreciate being able to read all that you have shared. Have already learned so much from all of you and will keep in touch and pray for my new friends.God bless, Lynn T. USA 67 YRS.
Hi , my name is Amy, I am 39 , was diagnosed approx 1 year ago. I was put on hydroxurea for approx one month when first diagnosed . I had flu like symptoms on the hydroxurea . My platelets are climbing again, I have noticed that I have more fatigue and dizziness when my platelets are over 800,000 they just hit 801,000. We are still monitoring levels with no change, continuing to take baby aspirin daily. I do have numbness on both hands but just my ring finger and pinky finger, and it does come and go. I live in Paxton Massachusetts , USA. It is really nice hearing how other people have similar symptoms as me, and I’m not imagining symptoms😊. Thanks , Amy
I am still on hydroxurea.It has been six months now,my headaches are less also no more strokes.I also have fibromyalgia so they both blend in together?Pain is pain.The being tired always and weak does not help.My immune system is not very good.did that happen to any one else.The docs now think I have Lupus,they seem to all fit in the same category.Nice to hear and share with others,thanks.
I am 49 and was diagnosed with ET 22 years ago. Back then Anagrelide was a research drug only, which I took for many years including after it went on the market. I gradually reduced the number a pills daily until I quit altogether taking it. My platelets have been manageable 350,000 – 550,000. The last few years I was told they found immature cells. It might possibly be myelofibrosis. I know that disease is considered a blood cancer – a type of chronic luekemia.
Hi, my son is 16 diagnosed at 8 we live in Western Australia.
He caucasian, Welsh/Irish.
Hi JoJo,
From the time that your son was 8 to the time that he was in his teens, did anything change, did anything get worse or possibly get better?
I am 13 and also from Western Australia.
Hi Bryan and list readers,
I was diagnosed with ET about 5 years ago. A couple of weeks ago I got a second opinion. I tested positive for the calreticulin mutation. (CALR).
Based on the results of the test the hematologist thought I should stop taking Hydroxyurea (I was on 1500 mg per day). He thought this was acceptable because I have no other risk factors and being CALR positive indicates that my risk for stroke is reduced. . He said that if my platelet count cleared 1.5 million he would recommend Pegylated Interferon.
He thought that the side effects of Pegylated Interferon were a real improvement over previous methods of administrating Interferon and more effective than Hydroxyurea..
Before I started taking Hydroxy my count was over a million, so I expect it to return to that level. Hopefully I will stay below a 1.5 million. The only drug I take for ET is aspirin. I’d like to keep it that way.
I’m posting this because the CALR mutation is a new test and I thought others might want to mention it to their doctors. Likewise, it’s points out the value of getting a second opinion. In case it matters, I’m JAK2 negative.
Mike.
Hi Mike… I had a stroke in 2002, at 25 years old. I had 7 blood clots (Cerebellum, heart, lung, spleen, kidney, thigh & foot). I had complete right side body & left side facial paralysis, couldn’t walk or talk. It’s a miracle that I’m here today! My platelet count was 1.4 million. There’s no way in hell I’d EVER let my platelets climb to 1.5 million before I was concerned, whether you did test neg for CALR or JAK2… that’s just crazy! I take Anagrelide & 2 baby aspirin everyday. I was also on Coumadin for 7 years until I got pregnant with my daughter (shot myself up with Lovanox 2x daily… doesn’t cross the placenta) then began again after her birth. I stopped again when I got pregnant with my son & never returned to it as per the doctors recommendation, but I was terrified to be off of it. It’s been 4 years now so I know I’m fine without, but I see my hematologist every 2 months for lab work, cbc/platelet. I’m just saying that if you intend to let your plates climb to those dangerous levels of 1.5 million before being concerned, I’d think again, or you could very well end up in the hospital with a not so good outcome. Nothing I’d wish on my worst enemy, EVER!!! Be careful & try to keep them between 300-600,000 at the most if you can. I also tried Hydroxyurea for a brief time & just went back to the Agrylin after almost 3 months. Anyhow, good luck & please take more concern for your condition… it’s very serious! I’m praying for a possible cure everyday! 🙂
Hi Darcy,
Do you mind if I ask if you had any lead up events before your stroke and clots? Anything that triggered the clots I mean?
I had 4 TIA’s after getting clots in my Cerebellum – the veins of the brain, all on one side blocked. I had a long road to getting back to being pain free and back to strength.
My trigger point seemed to be extreme exhaustion / dehydration after a running race when I was 31, but with weeks of pushing hard before that also. I also took a hit to the head the day before – so could be any or all of that combined. And oddly I had no sign of ET then, and my platelets were only 300 odd.
It was only 4 years later, after I was mostly recovered that a blood test showed I had 500 count. Not high, but considering the previous clots, they did a Bone Marrow Biop, and came back with ET and Jak2 mutation.
I’ve since toned down my extreme sport and drink a lot more water, plus Asprin currently, although heading towards Hydrea and dabigatran. Trying to keep my stress levels lower also, but it’s hard.
Bring on a cure for sure!
Hi Simon,
The only lead up that I had beforehand was that I went cross eyed twice & lost my peripheral vision twice, one month before my stroke. I thought I just needed to see an eye doctor, but it really scared me when it happened!
I had a full blown stroke & actually had multiple heart attacks as well, because my organs were shutting down. The night I had the stroke I started vomiting, had a migraine beyond belief, and sweating profusely… things that NEVER happen to me. My dad wanted to take me to the hospital & I refused thinking I just had a terrible case of food poisoning. I mean, who thinks at 25 years old they’re having a stroke?? I’m lucky/blessed that I didn’t die as I waited 6 hours before finally being rushed by ambulance… the paralysis had taken over & I couldn’t walk or talk. I was just laying there like a rag doll. My parents just thought I was sleeping until my alarm clock went off & I wasn’t turning it off or coming out of my room, then called the paramedics.
4 TIA’s??? That’s insane! You are blessed as well! I’m so sorry for you to have to experience that, and it instills a fear that it can happen again. At least in me! You have a very rare case because your platelets were actually in normal range… very strange. I’m very glad you’re getting better & getting it under control.
I think the only reason to be worried about the extreme sport is in case of bumps, bruises = clots. I’ve never heard of dabigatran before. I’ll have to look it up. Funny about the stress levels… I try too but my stress gets the best of me at times. I get anxiety now, which never did before. My hematologist laughs at me because he knows how paranoid I get about it, but he also understands what I went through. He said to me at my last visit, “Darcy, you’ll probably be 80 years old & still wondering what’s going to happen!” It’s not necessary me being a hypochondriac, I just like to know how things work. I want to go to school for nutrition. I believe it can play a HUGE role in lots of conditions/diseases. I like holistic healing as well & want to learn ALL the ins & outs about it! He also told me that researchers are looking for a cure for this disease, as it can cure cancer as well. It’s about fixing that one little T-Cell that starts it all. I know they’ll find something! I have hope & faith that it’s totally possible! Do you pray? I ask only because if you do, pray about the cure. I will also keep you & all the folks on this site in prayers as well! 🙂 Sorry for the lengthy message LOL!
Hey Simon,
I just read about Dabigatran & I would highly suggest NOT taking it. I’m no doctor obviously, but they can’t test the thickness/thinness of your blood while taking it, and there is no known antidote in case of fatal bleeding, unlike Warfarin or Coumadin. I took Warfarin for 7 years & it’s great cause they do a PT INR which gives you a reading in like, a minute! So you know right away whether you need to increase, decrease or remain on the same dosage. The only downfall with any blood thinner is watching your intake of greens. The greener the veggie/fruit the higher the Vitamin K level, so keep it moderate & keep it consistent! 🙂
Hi Darcy,
Oh wow, no wonder you’re scared of it happening again!! Hmm, we seem like similar people as I also didn’t to go to hospital, and I lay at home for a week with incredible head pain like it was going to pop (that was the clots already in my head). After 6 days of bed I had the first TIA, then the 2nd, both lasted 20min of paralysis on one side, I had to wait then the feeling came back and I could walk… and I drove myself to hospital in a terrible state. I was in hosiptal next to old people dying over night, naturally very scary, like you know for sure!
Like you, I think about it every day and am dead scared of my body doing this again, which I used to trust and not even worry about anything. I think we are both very rare cases – ET is rare enough, let alone our age, and then combined with stroke / TIA, sadly that puts us in the dangerous side of the bell curve.
My hematologist also laughs at me as I track my platelets on a chart, and try and track what is changing them, food / stress … even down to sunlight levels. He tells me it’s none of that and to relax about it a bit more… but that is the only measure I have to go on. I am a scientist, and while I am not religious, since this – I feel there is something else out there, and yes I wish they can figure out how to “switch off” this mutant gene. I have heard they have made progress, so we may only be a handful of years away!
Thanks heaps for chatting and sharing your side, it’s great to be able to not be alone!
Hi Darcy,
Yes I do worry about it, it also says not to use if tendency to get dehydrated, which is me. My doc at hospital has the antidote – he said they have used it on a few people so far, which makes up about a 1/4 of the worlds cases, so it’s not widely used. Makes me worried when I travel, I’d be stuffed in most other countries or if I’m remote at home here. I have been on Warfarin also. None of them are fun.
Thanks for chatting 🙂
Hi Simon,
Let me start by saying, I’m not religious… but I’m definitely spiritual & believe in a higher power LOL! I do pray pretty regularly, as it’s a miracle I survived, and you as well!
I can NOT believe you waited 6 days with head pain like that. That’s exactly how I felt the night I went to the hospital… I literally had visions of my brains on the wall. So gruesome, but I thought my head was going to explode. I pray that NEVER happens to you again. I don’t know how you drove to the hospital like that. Do you have family nearby?
If you don’t mind my asking, how old are you? I just turned 38 on the 28th of Aug. I have an appt. with my doc on Thursday to get blood work. I’m going to ask him about the Jak2, CALR, and MLP. I’m kinda freakin’ out here the last couple of days, I guess from reading all the experiences everyone has had. It should ease my mind to know I’m not alone, but it gives me anxiety instead because now that I have young children, I’d hate to leave them alone in this world! I feel like they need me & it makes me kinda sad when I think about it. 😦 I’m sure I’ve got it under control for the most part, but it’s always in the back of my head.
So, that’s great to know I’m not the only one who thinks other things can effect it. I do believe stress can affect our bodies in a BIG way, and well, sunlight (low levels of Vitamin D), and food too. There are foods that naturally increase platelet counts so why shouldn’t we worry??? I’m gonna ask my doctor on Thursday & I’ll get back to ya on comparison notes hahaha!
Oh, and one other suggestion, because you’re a scientist… get this book & enjoy the read… if you have time and are interested of course. It’s called “Many Lives, Many Masters”. It’s about a prominent psychiatrist named Brian Weiss who believed there was a scientific explanation for everything in life until he met this one lovely patient who changed his life forever. It’s also a true story! Thank you for chatting & take care. I said a prayer for you by the way… for your health & well being!
Simon… look what I found, very interesting! Read to the end! Hope you enjoy!!! 🙂
Platelets (thrombocytes) are small cytoplasmic fragments that circulate in the blood and whose function is to form blood clots, i.e. they help the blood to the coagulation process to maintain a balance in the cardiovascular system and prevent bleeding when injured, forming blood clots that help to stop bleeding while the damaged vessel is repaired.
When the number of platelets is too low could result in excessive bleeding, and if the platelet count is too high it will come together to form blood clots that can potentially cause what is known as thrombosis, which occurs when blood vessels become clogged by clots causing severe reactions as stroke, myocardial infarction, pulmonary embolism, or blockage in any part of the body.
Any imbalance or platelets disease is called thrombocytopathy, which can be either a reduced number of platelets (thrombocytopenia), a deficit in function (thrombasthenia) or an increase in the number (thrombocytosis).
Platelets are produced during the process of blood cell formation (thrombopoiesis) in bone marrow. The physiological range of platelets is of 150-400 x 109/litre. A platelet has a life of 7 to 10 days, and a healthy adult produces 1 x 1011 platelets per day. This production is regulated by a hormone called thrombopoietin, which is usually secreted by the liver and kidneys. Platelets are destroyed by phagocytosis in the spleen and Kupffer cells in the liver. The spleen stores a number of platelets, which are released when needed by splenic contraction, regulated by the sympathetic nervous system.
Thrombocytosis (high platelets)
Thrombocytosis, as explained, is the increase of platelets in the blood. The causes of increased platelets may be:
Infections (most common cause: viral, bacterial, etc.)
Poor diet and
Iron deficiency, anemia (due to poor diet and poor absorption of iron or lack of it)
Nephrotic syndrome
Trauma
Tumors
Kawasaki disease
Splenectomy post-syndrome
Emotional causes
High platelets are related to factors such as stress, anxiety and depression, attitudes that create wear and imbalances both in the nervous system and throughout the body. Anxiety or depression, in this case, can be generated by a failure to fin deep hapinness in life, closing the way to feel joy only with fixed or obstinate ideas.
Natural Remedies
The body has its own self-healing capacity, designed to self regulate and self-repair, you only need to be given the necessary elements to return to the state of balance and optimal performance.
Medicinal Food
A diet is the foundation of all healing process as it helps the body repair damaged tissue, nourish and invigorate organ systems, and removing stagnant toxic and unnecessary stuff in the intestines which impairs the blood throughout the body, causing a number of imbalances that are known as diseases.
It is necessary to maintain a high quality diet, trying to avoid all products containing sugar or refined flour products based on cow’s milk, refined grains lack any nutritional value as well as junk food like soda, fast food, sausages and red meat, which only hinder the functioning of the body, filling it with toxic matter and acidifying the blood.
What foods help to regulate high platelets?
You must include in the diet 2 liters of pure water per day, beginning the day drinking on an empty stomach a glass of warm water with a squeezed lemon.
Include Omega oils that nourish the nervous system. Extra virgin olive oil, oily fish and whole grains are very beneficial.
Shiitake fungus is one of the best natural remedies for this condition.
Consumption of raw garlic, aloe juice, seeds of grapes, oranges, plums and papaya are very beneficial in the diet. You should eat for day only a fruit such as papaya and grapes.
Other natural remedies
In addition to diet, you should consider exercise, as exercise helps to circulate blood, oxygen, and vitalize, helping to distribute nutrients evenly throughout the body.
Acupuncture, reflexology and bioenergy are therapies that help regulate the smooth flow of energy in the body, they serve as strong support for a healing process.
The emotional attitudes are important, often essential. People can come to heal simply by changing their ways of acting and thinking.
Thanks a lot Darcy, that was good reading. Some really interesting points. I feel like this whole area is still just brand new in what we know.
Totally get your spiritual side, I feel some of that for sure, more and more each day.
Thanks so much for all your prayers 🙂 Yes I have family close, but often I just say I’m fine when clearly I’m not!! Just another typical stuborn male (but not any more).
I am 37 years old, so we are almost the same age! I hope your doc visit went well??
I pray you live to a ripe old age – I’m almost sure we both will 🙂 But it is a worry, my partner still tells me she doesn’t want to be alone later on in life, which is hard to hear. We haven’t started the kids thing yet.
Love to hear back anything new you learn from your side… mind me asking what country you live in?
Thanks for the continued chat, really nice to talk 🙂
Forgot to say, I’m in New Zealand. I’m super happy with my doc – he’s a great person and has the time to listen also which is fantastic.
Hi Mike,
I too have found that I have the CALR mutation and am JAK2 negative. I have a very high platelet count of 1.6-1.8 million, but my doctor just has me on 325 mg of aspirin. I have never taken anything else. I was also told that I am at lower risk for stroke and heart attacks, but I do still worry about clots. I bruise entirely too easily. I wake up with unexplainable bruises that are deep and painful, yet there is no way that I hurt myself at all. Additionally, my bone marrow biopsy has shown that I have myelofibrosis (I don’t know how long I’ve had these conditions, as I was only diagnosed 5 months ago and hadn’t had blood work done for at least 10 years prior).
With platelet counts at this high level, do you feel extremely fatigued all the time? I still have cold fingers and toes that tingle and ache like crazy, odd pains in my long bones, slight fevers. I recently started having problems with my vision, a temporary form of dyslexia, and I find it incredible hard to think at times. I have a feeling that I need to be on something more than just aspirin, so I am curious to know how you have reacted to Peg Interferon (considering our CALR similarity).
Ashley
36 year old female
USA
Caucasian
i am 36. i live in california. and i am white female.who also has has this diease my plattlet count at its highist was over 2 million. it has gone down a little my hematogolist put me on jakifi and and still taking baby asprin go back soon hope this works this time
Hello! My fiance was diagnosed with ET just last month and is now on a baby aspirin medication. We were assured by his hematologist that there is nothing to worry about it which is pretty calming. He doesn’t have any symptoms and is living a healthier lifestyle (exercise, whole grain diet, less soda, etc.) He is 38 years old, caucasian and we have been together for almost 2 years now. He wants to start having a family soon especially finding out about this disease. He wants to be able to spend time with our soon to be babies while he can. I am scared if this is something that can be passed on to kids. I have heard of genetic disorders carried by parents which is being passed to to kids. Can anyone explained about this possibility? Is there anyone out here diagnosed with ET (male carrier) that was able to have healthy babies?
Hi Marnie. Not so sure about the genetic predispositions, but my aunt had a stroke 8 years before I did. After I had my stroke in 2002 everyone in my family went & got tested for ET and nobody else has it, thank God! I was told if I ever got pregnant it would HAVE to be terminated because of all kinds of risks to the fetus or myself. Anyhow, when I found out I was pregnant, I contacted the doctor who saved my life & he didn’t have an answer for me but got me in contact with a high risk OB to see if it as even possible, and first & foremost, to get an ultrasound to make sure baby was well to begin with! Long story short, pregnancy was awesome & got my daughter tested at 4 days old for ET & she tested negative, again thank GOD! Had my son in 2011 & had him tested at 5 day old & negative as well. Ask a doctor what the risk of passing genetics for this disease may be. It’s not a very common blood disorder.
Hi Darcy, I wish your children and you are well.
May I know what type of test was conducted to test your kids?
Hello! My fiance was diagnosed with ET just last month and is now on a baby aspirin medication. We were assured by his hematologist that there is nothing to worry about it which is pretty calming. He doesn’t have any symptoms and is living a healthier lifestyle (exercise, whole grain diet, less soda, etc.) He is 38 years old, caucasian and we have been together for almost 2 years now. He wants to start having a family soon especially finding out about this disease. He wants to be able to spend time with our soon to be babies while he can. I am scared if this is something that can be passed on to kids. I have heard of genetic disorders carried by parents which is being passed to to kids. Can anyone explained about this possibility? Is there anyone out here diagnosed with ET (male carrier) that was able to have healthy babies?
Hello Marnie, I have not heard anything to suggest this is a genetic disorder that is passed to future generations but this is really a question for your Hematologist. If you fiance’s platelet count is staying at a constant level and well below one million then I agree with your hematologist that there is nothing to worry about.
This has nothing to do with ET, but I would avoid all soda’s, they are just terrible.
Best Wishes,
Mike
Hi Mike,
Thank you for your response. We would know a month and a half from now if his platelets are escalating. We would have to do series of blood test to monitor his platelets count. Hopefully, by then we can discuss about if there is an abnormal chromosome present. **fingers crossed**
Hi, I’m 37 from the philippines, I was diagnosed with essential thrombosythemia this month, I’m take hydroxyurea, i just would like to know more about this disease… Thank you…
Hi,
I am 13 years old right now (2015) and I have a medical issue very similar to ET,I was 4 when I was first diagnosed with my condition but no one knew exactly what it is and the doctors still don’t know. Anyway, It was found out that I had a blood clot in my brain and majorly increased pressure in my brain and also increased platelets too. From there, I was put on medication and all was sort of okay so they took me off of my medication but 1 year after, it started again and I got a second blood clot in another one of my major veins in my brain. After that I spent many weeks in hospital and lots of medication and needles 3-4 days a week. I have been living with it for 9 years now and have had a couple of scares within the last year. I am Caucasian, from Western Australia and am taking aspirin, Diamox and hydroxyurea.
Facebook has many support groups with a lot of information.
Hi Shani, sounds like you’ve had a tough time. Do you mind me asking what the doctors said as the cause to the clots, was it just your illness or another trigger? I’ve also had clots in the veins of my brain – which doesn’t seem to be very common. I got told mine was most likely down to pushing too hard, and dehydration, as at that point I didn’t have any Jak2 or high platelets, but I was pushing my body hard every day in work and sport. But since then, some years after I now have all the signs of ET after the hospital checks. I really struggled for months with those clots, actually up to 4 years after – I couldn’t even bend over without days of headaches. Terrible head pain, and it felt likes ants in my brain as I could feel the new veins growing and the blood finding new routes. I’ve not met anyone else to compare stories with. I had 4 TIA strokes during the hospital time, the first one happened when I was at home, so I drove myself to hospital. Since then I’m getting stronger and more capable, but my ET was getting worse last year. But something has been on my side, and my platelets are dropping each month lately. I’m meant to be on Hydroxurea but haven’t taken it yet (may try for kids first), and pradaxa (not taken it either), I’m just on asprin. May be going against what the hospital wants is not a good idea, but I feel amazing right now, and things have been looking up lately!
Hope you are doing okay day to day. No more clots aye!!
Please don’t stop this blog. There seem to be more and more people out there who have this disease that need the reinforcement. I was diagnosed just this week and I was scared to death. I was so happy to have found this blog because it made me realize I could live a normal life without fear. Lets keep it going!
Hi Lori,
I am glad indeed that we can all share our stories and thank you for your support in this blog.
Diagnosed in 2014 with ET. No symptoms, no treatment so far. Platelets have been elevated for approximately 5 years. Labs last month showed platelets at 640, labs yesterday showed platelets at 720 see my Hematologist next week…….Worried!!! Jak 2 negative have not had biopsy yet. Is it time to ask for one and should I be taking something? Confused and scared!!
Lori, I was diagnosed and at first did nothing, until I realized that my Mom (and me) carry Factor V Leiden (another clotting factor). The only issue I had was explaining to my Mom and stepmother that NO…I didn’t have Leukemia and NO…I was not getting blood transfusions every week. I’ve excepted the issue, take Hydroxyurea to lower the platelet count, and still stay very active playing soccer and gardening as I did before the ET was found.
I have ET ,diagnosed one year ago also take hydroxyurea,dosage is 500mg one day and second day one thousand.Meds make me very tired and my head feels funny and burns and tightens a lot.The best is I do not have any more strokes.I do do have other health problems such as fibromyagia I always think positive and take care.
It is imporatant to see a MPN expert even if it is just once they will work as a team with your local doctor. My husband was JAK2 negative via blood test and bone marrow biopsy(bmb) he tested positive for MPL. In my opinion it is important to have a bmb done.
We go to Mt. Sinai in NYC Dr.Hoffman is wonderful. Here is a link to some experts hope this helps you. http://mpdrc.org/readarticle.php?article_id=17
I have lived with intense muscle pain for years. For the last year, the pain in my shoulders, neck, and arm has been so bad I couldn’t sleep on that side. After only 3 days of taking hydroxyurea, the pain completely left my body and I feel better than I have in a long time. Is this normal? Has anyone else ever experienced anything like this?
i have had it for a while and mybarms legs always sre swollen and sore you are not alone
61 year old male diagnosed in 2006 because ended up in emergency ward with severe stomach cramps.Spleen was swollen and after BMB and blood tests dish odes with ET .Put on hydrea platelet count dropped from 895 to 450’s .Side effects include chest pain , dizziness , neuropathy in feet and sore legs. Also now have severe tinnitus and need sleep meds otherwise cannot sleep.I am feeling very tired in the afternoon . Looking back I know I had this disease when I was young because my platelet count had always been high but never taken care of by doctors.When I was young would pass out because of dizzy spells.Also have 2 herniated discs causinme severe chronic pain since 2009. Overall good days and bad days. Very hard on moral.
Hi Bryan,
Agree, very hard on moral, but I learn to look at it as blessing. it is a rare condition and we got it.. how is it not a blessing?
Hi everyone. My name is Marilyn. 47 years old, female, Asian/Filipino. I was diagnosed in 2006 when I had to get clearance for my myoma operation. So its about 9 years now.
I am on Hydroxyurea 500mg twice daily, and anagrelide 500mg twice daily also, and Clopidogrel once a day. My platelet is around 700 last month. I have to have blood works and visit my doctor every 2 months.
Its good to know about this blog so that we can do some sharing on experiences. Thanks Bryan for starting this.
I am taking HYDRXIUREA in varying dosages for treatment of Polycythemia Vera since last two months. I have observed that my platelet count comes down to very low level and consequently when I stop for few days the count continue going down to dangerously lower limits .Afterwards ,once again the count increases within two to three days and at this point when I start Hydrxiurea, the count simply continue rising until I increase the dose.
Can someone advise as to why this is happening and how the dosage can be fixed.
Thanks & regards.
can I travel from Canada to the States
thanks.
Hi Sharon I travelled from Singapore to Los Angeles 2 times within a year and lived in LA for one year . It was ok
Hi,
I found out last year about my blood disorder ET. My name is Melissa and I’m 26 years old and have no idea why I have this disease. I was on Hydea it was really harsh on my body then I changed to another drug which didn’t work at all and my platelets kept increasing. Now I’ve just started with intron A and the first dose was so painful and harsh I just pray the side effects will disappear and it won’t affect my liver too… So concerned.
Melissa
Hello Melissa, welcome to the club. I would not hesitate to get a second opinion, find someone who specializes in this area. Is the interferon pegylated. It’s supposed to have fewer side effects. Why do you think interferon is hard on the liver, I was under the impression that interferon has the fewest side effects of any of the medicines for ET.
Hi Melissa. I was just diagnosed in March of this year. Was wondering what type of harsh effects the Hydra had on your body. I’ve only been on it a couple of months and most of the time I feel no different than than I did before they told me I had this weird disorder. There have been a couple days where I was so exhausted I could barely function. Sometimes I really wonder about all of this. Sometimes I wonder if anyone really knows anything about this. Sometimes I feel like a lab rat for pharmaceutical companies. I wonder how many people actually have this crap and don’t even know it. Other times I feel like it’s not even real.
I am a black female, 40 years old, and was diagnosed 11/2011. I don’t experience alot side effects, but occasionally extreme fatigue.
Hi
I’m from India
My aunt is a cancer patient (35 years old-female)
She completed her firschemotherapy. But now her platelet count is more than 1030000 .
Can anybody tell me that how would that effect her?
Mexico, 26 years old (diagnosed a year ago), female, ET , jack 2 positive. interferon and natural treatment.
What type of natural treatment are you using, if I may ask?
Hi Anna,
What type of natural treatment, could you share please. Thanks
Marie Ford England
Female,white. Diagnosed with ET 7 months ago, but when Doctors checked back on my records I’d had ET for at least 10 years and it had been overlooked. My highest platelet count has been 1974.On 3 Hydroxycarbamide capsules a day,seem to have hit a plateau and platelets staying around the 700 mark. Have JAK2 mutant gene.
Hi,
Great website and to know that I am not alone with this disorder
I am 29 years old Male from Melbourne Australia and I just got diagnosed with ET. I went for a routine a blood test 3 weeks ago and they found that my platelets were up in the 1.1 range to 1.35 million . Had a bone marrow biopsy and came back negative with JAK2 and CALR mutation so I fall under the 20% range of people with ET who have are negative with no gene mutation. The Hematologist said my bone marrow is healthy and shows no abnormal scarring. I was told to go on aspirin and take 3 month blood tests and be on a wait and see journey.
I feel like before the diagnosis I have generalized itching but the Hematologist said it isn’t related symptom to ET but more so towards polycythemia vera?
Hi Alex,
Itching all over your skin after taking your hot shower? I had similar symptom when my count was 1mil, my gum bleed easily as well. My count are now at 500, No more itching.
Hi Willy,
Yes I get really itching after a hot shower or especially after a run. But what I have noticed recently since I’ve been taking aspirin for over 1 month the itching frequency has disappeared only sometimes I will itch but not as severe.
Hi Alex,
Interesting to note…..that aspirin help with the itch. Would like to share with you though. if you do drink (alcohol), you may want to reduce or stop that until your count go down to normal. I had seizure when my count was at 1million range. The night before i go to sleep. i had a glass of whiskey. In the middle of the night… woke up and went to the gent. next thing i remember i was on my bed and my wife was so shaken trying to get me to be conscious.
hope the info help. stay healthy & hydrated.
G’Day Alex – I am in Geelong and have a similar story to yours except my JAK2 mutations are positive. I am on a wait and watch for two months. Counts got up to 1200 mil.
Had a biopsy last week and was told today that ET has been confirmed and it is not PV as first thought. Then I was told to stop taking aspirin and prescribed nothing else?
Anyway – good luck with it mate.
Hi Mick O’C,
Glad to hear from you! I’m still on watch and wait but I recently been to the specialist the last 6 months and seems like my platelet counts have gone up to 1.9mil 😦
The symptoms for me have stayed relatively the same since I was first diagnosed at 1.1mil to be honest. The itching has subsided alot and I think it could be just the aspirin helping or allergies in Spring season making me itch like crazy. For me obviously I do not want to be on hydroxyurea as I am only 30 and getting married this year and want to have kids in next few years.
I spoke to my specialist and he say’s ET is a individual case by case where different factors can effect the use case whether be age, smoking, heart disease etc. for taking drugs to mitigate the symptoms.
I going to try to change my life-style with better diet, less stress and exercise more throughout the week from now on. But for me I can’t really tell difference between 1.1 – 1.9 mil to me it has stayed relatively the same symptoms.
Good Luck to all on the forum! I’ll keep posting on my progress
Have they tested you for mpl mutation?
I was pretty nervous that day I clearly heard that I had no genetic markers from my ears and picked up the words JAK2 and CALR. I am having follow up in 3 months I will ask the Hematologist about the MPL was tested.
Alex, I had blood wk that showed +jack 2 mutation and that triggered a bone marrow biopsy which also showed +jack 2 mutation and myeloprolifertive blood disorder, presenting as essential thrombocythemia. My. Dr. Did the bone marrow the day after my labs came back. I am on hydrea 500 mg. Twice daily with good mgmt. of platelets, rbcs and wbcs ( they were up a bit too. This considered a low dose and with baby aspirin I have pretty mild side effects. It is possible the ET contributed to the MI I had in my rt coronary before diagnosis. Everyone figured my elevated platelets were because of my breast cancer but my oncologist noted a pattern. Awesome lady! Do you remember if you were jack 2 positive? If you were, did you have a bone marrow bx. ?. Hope you do very well. I was 67 at diagnosis and with Hydrea feel very well and blessed. God bless, Lynn
Hi! It was in 2008 that I was diagnosed with E.T. but I started taking hydra in May 2010 when my blood platelets sky-rocketted to 1.3M. I took it for almost 2 years and due to its side effects I shifted to Xagrid. I took it for a year and due to severe migraine and dizziness my blood specialist gave me Pegasus Interferon 135 microgram weekly. So far, so good aside from having pain my in left lower ribcage and severe pain in my right leg.
I will be 42 next month.
I feel so relieved to discover this site. I never really had anyone to share my ailment with aside from my husband.
Thank you so much for creating this blog. I am also writing a book about my life with E.T. and i hope i will be able to publish it next year.
God bless! ❤
Hi Julie,
Welcome to the club, you are not alone. Try to cut down on process food and start eating healthy. Lost of fruits and vege. Let me know once you have your book publish.
God bless.
Name: Willy
Country: Malaysia
Gender: Male
Age: 38 (as of 2015)
Ethnicity: Chinese
JAK2 Positive.
Diagnose with ET at 2012 with a million count, on Pegasys Interferon once a week & daily dose of aspirin for a year. I stop cause the cost of treatment was too high and still is. At the time I stop the treatment, the count is at 300.
Taking mega dose of reputable supplement, eating healthy and stress free helped. Now I’m very particular with what I put in my mouth.
Doctor say don’t trust the supplement, being me I ignore his advice. Did some research and treat myself with mega dose of supplement and healthy eating for years, what I found out was that my count do not go up as progressive..
Not sure if it was because of the supplement, but I’m positive it helped.
Anyhow, had a visit to my doc last week. count went up to 500 after a year+. He recommend to start on Interferon. Just started my jab of Pegasys Interferon yesterday (once a month) with daily dose of aspirin.
Recently come about a reading on Carrot Juice positive feedback on Cancer. Thinking of starting my diet with high intake of Carrot Juice for few months. I think I will definitely turn yellow. I will see how it goes and keep you guys posted.
If anybody have other healthier/holistic/natural alternative beside the normal Interferon & Hydroxyurea treatment, do share with me.
I’m interested to experiment and see whether it could cure. Somehow I have a very strong feeling I could cure it.
I could be reach at willyawe@gmail.com
I am a 46-year-old female located in Illinois USA. I am being treated with hydroxyurea and was DX in 2013.
Grandparents are of European Jewish decent.
This is the first time i ever saw a good article about Essential Thrombocytosis. This is important to other people that has the same issue! Thank you.
Just to complement my last comment, there are many people that are so sad, and never expose this kind os situation to the public. I want to congrat you that made this important post. I have tryied in the internet to seach this problem, even the site segredocapilar has no info about it.
Hi Bryan.. Thanks for the this blog. It was like a light at the end of a tunnel for me. I was diagnosed with ET only 5 days ago, and I feel like my whole world has collapsed. So, reading that you have been off Hydroxyurea for 5 years now is so amazing and a glimpse of hope for anyone diagnosed with this illness. For the past few days I’ve been reading on the long term side effects of this medication, and it made me literally feel all the symptoms that are in the books. I don’t like that and I don’t want to be defeated.
Here are my details;
Female, 51 years old, live in England, and I’m from an Arab origin (i.e. Egypt)
Many thanks and please keep this blog going for inspiration to all of us.
You’re only “defeated” if you believe you are.
Hello Molly
Marhaba ! I am from Beirut and I also have ET since 2008 … I was very scared but now I am living normal I have 3 children and live normally – I use hydrea on and off as I observe my platelets from time to time … Don’t worry you are low scared but you will see it will be normal and you will forget about it most of the time … Allah ykoun ma3ik ya rab !
Hi Everyone (thanks for the blog Bryan).
I am an Aussie male, 49yo, 100kg, 179cm, and of Anglo/Celtic heritage.
Got told by my hematologist today that I have ET. This certainly explains MUCH about the changes in my body that I have been experiencing and thought It may interest some people how this diagnosis came about….
Exactly one month ago, I became so short of breath that I nearly died and ended up in the hospital ER via ambulance. Three hours and six doctors later I was breathing better but not great. I was placed into an intensive care ward where my blood was monitored every four hours for 2 days. It was because of this monitoring that an MPD/MPN was suspected. Tested positive to the JAK2 mutation and was told I have PV (polycythaemia vera) and was sent for a marrow biopsy last Friday. Got results today and was told it is confirmed as ET.
My platelet counts got as high as 1200 millions and are now steady at between 800-900.
I will not be prescribed medication and have been put on a “watch and wait” list and have been told to come back in two months.
The changes I really noticed about my body – loud constant ringing in my ears (even now as I type this), enlarged upper left hand side of abdomen (splenomegaly), rashes on arms, profuse night sweats, fluid retention, itchiness (especially on hands and fingers) and the big one….my vision is getting blurry and poor.
Still not too sure what to make of all this…thought I would share it with you all.
Keep well.
Mick
I would really like to know if anyone else has experienced ringing in the ears and what (if anything) can be done?
Thanks everyone.
Mick
I’m currently waiting for a MRI scan on my ears as I experience a pulsative tinnitus in one ear.It drives me mad, I can hear a whirring noise like my blood pumping through my viens.I think this is related to my ET ?
Regards Marie
HI Mick, (and Marie) Yes, that ringing pulsating sounds in my head is so annoying! there were some nights I could not go to sleep, as tired as I was, because the sound was so distracting! I agree, the sound I hear is like my blood pulsing through my body!.Ack! Once I started taking hydroxyurea, the sounds diminished. not instantly, but they are much better! I don’t just hear my own head making noise anymore…gotta love that! And, for the eyesight; yes! I too have had the experience of good eyesight going to blurry and making it difficult to read more than see distance. I blamed it on my age as I just turned 51…but I think that is part of this ET thing too and since being on the meds, that too seems better as it comes and goes sometimes but it’s not as bad as it once was.
I too have Jak2 and went for a bone marrow test to be diagnosed with ET.
Hi Mick,
I’ve often had ringing in my ears, but I didn’t attribute it to my ET. Perhaps it is… I also have a form of psoriasis in my ears that may have started about the same time I got ET (not exactly sure when it happened as I didn’t have blood work done for a 10 year period. I too have fluid retention, rashes starting on my arms just recently. And yes, my vision is quite concerning. I have rounds of dyslexia and while they are only temporary, they are significant. My doctor does not know much about this condition, and I believe I am the youngest, if not only, patient he has with ET). I often think he thinks I’m making things up when I come in every few months with a new round of symtoms (I do wish I was one of those people w/o any symptoms). I have platelets in the 1.6 – 1.8 million range and I am currently 36. I can’t stand the insurance I have, as they continuously deny me an MRI of my brain to see what is going on. There are times when I have a distinct feeling of “brain swelling” and it will last for upwards on 2-3 weeks. See if you can get an MRI. Perhaps it will answer some questions.
Hi Mick,It’s scary when you’re first diagnosed. I’m female 52 yrs old English. I was diagnosed in Feb this year . I have Crohns disease and had been on medication for it for 15 years when out of the blue I got a phone call from the Drs to have a routine blood test done because of my medication.2 days later got a phone call from Doctors calling me in that same day as they’d found something unusual with my blood. From there I went on to have a bone marrow biopsy,JAK2 gene found, I was placed on Hydroxycarbamide (oral chemotherapy) Aspirin, blood pressure tablets and regular check ups at the hospital (every 4 weeks).The highest platelet count I’ve had is 1974. I was convinced I was going to die , especially reading about it on the internet. After talking to my haematologist and asking the dreaded question about mortality, he reassured me that I had a good chance of a normal lifespan as long as I kept my condition monitored, and obviously that it didn’t turn into a more serious blood condition. I had similar symptoms to what you describe, but frequent “visual migraines” without a headache. My vision would go blurry and all I could see was zigzag lines. I’d been previously told by my doctor that these were nothing to worry about. Since being on medication I haven’t had a single one. I also had an experience where my eyes got stuck to one side .It was very scary I was totally disorientated for a few mins and thought I was having a stroke, again this was just before I was diagnosed and now know that this was a warning. So please try not to worry and as my haematologist said to me “don’t let it stop you from living your life”. I think this was the best advice he gave me.Take care.
Marie
I’ve often got the zig zags too!!! Sometimes they are so invasive that I can’t see anything else–they will literally cover my entire range of vision. I still get them here and there, but I am only on aspirin.
ringing ears, severe itching after a shower, deep body pains, zig zags in my vision, blurring vision……diagnosed with this crap in March of 2015…put on hydroxy and symptoms were gone in 3 weeks. People can say all the bad, horrible, dreadful things they want about the medication, but for me, its been a blessing. Illinois USA. 56 yrs old
Thanks Marie and Lori – your thoughts are valuable to me.
This ringing in the ears is driving me mad! Apart from that – I feel ok but very lethargic with a large spleen and poor vision. Everything appears “wavy” and there are no straight lines anymore.
Good luck to all and thanks again.
Mick
You’ll be ok Mick. They will find you the right medication and your life will resume as normal. Just a few interruptions to have blood drawn every couple months or so. The worst thing you can do is read the garbage on the internet. I stressed myself out so bad with that stuff. So do what you got to do, know that you will be ok and carry on
Thanks again. Unless the info is from a peer reviewed journal/source, I place very little weight on it.
Take care.
I just fou out my 4 month old grandson has high Platlet levels and factor ix deficiency.. The dr left a quick message on my daughters phone and said she will explain tomorrow. Except I can’t sleep not being able to know what this Means! What does this Mean???
Hi Lee, High Platelet level could mean anything, until a diagnose is done don’t burn yourself down. “Worrying is a misuse of imagination”. Imagine your grandson getting better and healthier everyday instead & believe it. God bless you and your family.
Hello. I’m a 59 year old female and just diagnosed with ET with JAK2 mutation. I’m pretty sure I’ve had ET for 6 yrs. I checked previous blood tests and they started at 407 and have bounced around in the 400’s until yesterday. Jumped to 600 in one month. Needless to say, I’ve studied this disease until I’m sick of reading and worrying about it. I’m on aspirin at this point. I was extremely upset about the increase because I thought I was taking all the right supplements to help keep them down like: omegas, hemp oil, olive oil, flaxseed oil and chia oil. I’ve been taking red clover, L-cysteine, garlic, shiitake mushroom, curcumin, TMC, evening primrose etc… I’m a big health nut and for years have exercised everyday for an hour and a half and eat very healthy. So I’m shocked and depressed about ET. My dr told me that everything I’m doing will not have any effect on my platelets!!! I’m lost but hopeful and I hope all you ET sufferers find relief. Thank you for this site. It helps to hear what others experiences. Good health to all and good luck! Sue from New Mexico.
HI Sue, you will be OK. Living a healthy lifestyle will carry you through other risks that our bodies have. From what I understand, the diet and exercise will not impact positively or negatively to your ET diagnosis. Instead those will help you in other ways. My platelet count has been between 700-850K for years and I cleared the Million number by hitting 1.4M. I haven’t missed doing any activity, or event due to the platelet count. For the first time in my adult life (I’m now 52) I am taking meds to keep my platelet count closer to the “normal” range. Years ago I had to separate docs tell me they don’t usually get concerned until platelet counts hit one million. No doubt, it’s a strange feeling to be diagnosed with ET and know you could have clots form. Staying active and enjoying life is important, don’t give up the way you enjoy living life!
Hello there Sue! I have been diagnosed with ET since October 2008 and my blood platelets is around 1200 and I began taking hydrea since May 2010. I am 20 kg overweight, I have an enlarged liver and multiple gall stones. I also have a horrible case of varicose veins, tingling sensation in my feet and fingers and pain in my left ribcage and lately, visual disturbance. I am 42, with 2 kids. I am originally from the Philippines but residing in Denmark for almost 9 years now. My point is that, I wanna let you know that your case is way better than mine. I have tried to run and do exercise but I just don’t have the discipline to do it on a daily basis. You do exercise regularly and have a good diet and I am pretty sure that your chances in having a blood clot or bleeding is less because you are more or less a health buff and you always condition your heart daily. But, life goes on Sue. Don’t waste your time reading about ET because it will slowly eat you up. There is a saying that goes – “What you fear most will come upon you!” and i believe that. So just go on with your life and don’t let your ET change you. I have started going to the university again since I can no longer further my practice as a nurse. I admit that it’s tough, but I know I can do it because it’s what I want. So God bless and I hope soon, your platelets will just go back to normal!
Dear Sue and all,
I am a 42 year old female from the UK, I have recently been told I have elevated platlets (550) after a Health and wellness assessment. I actually had an elevated reading 5 years ago, 450 but being young and foolish and not feeling at all ill, ignored this! In some way I am glad I did as I have lived a happy existence for 5 years with only terrible itchy feet and scalp at times.
I have seen the haemotologist and done some more blood work, and hope to find out more in a couple of weeks, as I dont even know if it is ET or RT, neither seems a great option!
I jus t wanted to say to Sue, I have read loads that last couple of weeks and although the healthy lifestyle and exercise my not have helped the platlet count. It will have helped reduce the other risk factors, such as furring iPod the arteries, and increase in blood pressure which increase the risk for thrombosis and stroke! So keep it up and don’t feel it has been a waste of time. I was awake at 2 in the morning with a hot flush and itchy feet and decided that if I want to see my grandchildren, I need to change my lifestyle, eating less processed food and getting more exercise and if I died trying least I will have a better figure to show for it!!
Has anyone any info on prognosis of ET? I read some scary stuff last night where in this study all 18 JAK2 patients had died. But they were all in their 60s, 70s at diagnosis and their ages at death were late 70s early 80s. What is the prognosis for the younger sufferers??
Thanks Bryan for setting this up, great to meet others going through this scary time!!
Claire
Claire, prognosis for most people with ET is to lead a normal life. Really, a platelet count of 550 isn’t that high. My doctor didn’t start me on meds until my count cleared a 1000. I completely agree with your decision to take better care of your health and avoid processed foods. I also think that Bush Bunny is on the right track with vitamin D..
It’s because of comments like this I am unsubscribing from this blog. All the death and dying. Let me tell you something. It doesn’t matter to the person who has the disease if they are 30, 50, 70 or how ever old. No one wants to hear about people dying. How about trying to face the issue with a positive attitude. How about trying a bit of meditation or yoga instead of surfing the web for negative results. I was diagnosed in March of this year with platelets over 1300. By using meditation and visualization, my platelets have dropped to 280 and my medication has been reduced to every other day. Instead of sitting around “dying”, how about stop feeling sorry for yourself and try living. It might just do you a world of good.
Lori.
Thanks for sharing. I was wondering if you could talk a little more about the specifics of your yoga and meditation practice?
Peg
Lori, stay on. There is a lot of positive stuff on here, such as what Mike wrote. It’s amazing what meditation has done for you, and for me lots of soccer games and gardening have kept things in check. I am on hydroxyurea, but also supplement with lots of herbal products that keep the white and red blood cell counts and hemoglobin on the edge of normal. ET seems scary, but it is the least to be worried about of the blood disorders as long as that platelet count doesn’t get well over 1000.
Hey Lori – your comments helped me a lot.
Can’t do that if your not here!
There will be others…
Take care ALL – Keep Positive
When platelets go back to 430 must one stay on hydroxia
My platelets have recently dropped to 220,but I am still on Hydroxycarbamide.( 3 capsules a day) My haematologist said he will look at reducing my medication in 4 weeks time depending on another blood test. I’ve been told that I will be on the medication for life, with regular blood tests to determine dosage. Hope this helps. Take care, Marie
Last platelet count for me was 780 (2 weeks ago) and I am not prescribed any medication. I was told at the same time to stop taking cardio aspirin. Different courses for different horses!
Keep Well
Yes when my platelet count was about 749 ,I was told I needed a bone marrow biopsy to determine treatment and to see if I was to be put on Hydroxycarbamide. Have you had a bone marrow biopsy yet? I think I fell into a high risk category as my blood pressure was very high too. Thankfully that’s now under control with medication. Have you been offered any other treatment or is it a case of wait and see ? I believe that’s the case if not considered high risk.
Regards Marie
Hi Marie – apologies for delayed response been off the air, it is a very busy time in Australia..Melbourne Cup/Spring Carnival, Remembrance Day…
I had a bone marrow biopsy and it confirmed presence of ET. I have been offered no treatment and told to wait and see. My next appointment and blood tests are 3rd week into December. I cannot be high risk as I am on a wait and see program! Apart from feeling very tired and the constant ringing in ears, I don’t feel much different.
Anyway – keep well
Mick from OZ.
P.S. My last platelet counts were about 850 and steady
I just found out I have high count (692). I am a 32 year old female and I am completely terrified. My doctor who performed the initial blood test was just doing it as part of my annual check up. I had no symptoms. Now he is telling me that it could possibly be caused by cancer, immune disorders etc. Going for a 2nd blood test next week, and then to a hematologist.
Hi Ange, I found out I have ET the same way, no symptoms but a high platelet count on routine blood test. I went to a hematologist and had a bone marrow biopsy, which confirmed ET. The highest my platelets have been so far is 700,000. I was put on baby aspirin 81 mg per day and the hematologist said I will start hydroxyurea when and if my platelets reach 100,000. I was extremely scared at first and very depressed about it. I have had 3 months to get used to it. I am now taking better care of myself than probably ever before and realize there are much worse things to have. My doctor said people can live a normal lifespan with ET. There is a lot of talk about whether it is cancer or not. The first hematologist I saw said it was not cancer, but the second one said it is, but it is a benign, chronic cancer as opposed to an acute, malignant cancer. Having a diagnosis like this causes us to think of our mortality, but the reality is not one of us knows when or how our end will come. Just live each day as a gift, which is what we should be doing anyway.
I would also add that the biggest reason i was so scared and depressed at first was not the actual diagnosis of ET, but the fact that I immediately went to the internet to find information and was inundated with mostly negative, and in some cases absolutely false information about ET, so be aware of that.
Hi, I’m from Frankston Vic. I have just been told that it looks like I have ET. I have visited a hemotologist today and she is waiting on the jax2 blood test results to confirm it.
Luckily my dr picked up on the high platelets which at last check had risen to 680 so we have it early. I am 50 and reasonably healthy…. Just feel tired and put most symptoms down to menopause. I have been told to take 100 mg aspirin daily.
Val Williams
, Perth Australia born UK English. 69 on Hydria for 10 years high blood pressure aneurism by heart ,, At first was worried everyday may be my last now im used to it but never miss my hemo doctors appointment Facebook as a ET site people all over the world some really know there way around thy read a lot
Adelaide South Australia, have been diagnosed with et and was on Hydria but did not reduce my platelet count. Have had all the tests but I am one of those people that there is no reason for et. My haematologist thinks if I go on interferon this may help but not sure as the side effects can be bad.
hi guys I am in Melbourne australua I have had ET for over 20 years I am on Hydrea. and all seems okay no dramas. maybe aches pain and tiredness but so be it. I don’t get too dramatic over it all my counts stay around 500 they started over a million but hydrea has kept them at bay. take daily aspirin. I don’t let ET rule my life or dwell on it. it is what it is. keep well everyone.
A good attitude is a big deal! I still play soccer 3x a week and garden a heck of a lot. I tell people I have a diagnosis, it DOESN’T HAVE ME. I’m on Hydrea which doesn’t produce side effects for me, but I can’t take aspirin (another diagnosis that doesn’t have me-ulcerative colitis).
Name: Lauren
Country: Australia
Sex: Female
Age: 27
Ethnicity: Caucasian
My Husband Gerard he ha been diagnosed 12 years ago. Is this Disease a form of blood cancer? I’m from Northern Ireland (uk)
I have just been diagnosed with ET – I’ve had 2 years of migraine and visual disturbances and feeling exhausted. I had breast cancer in 2008 and went through chemo and radiotherapy. I’m finding work really hard. I’m 58. I’m just on aspirin at the mo. My platelet count went over 1,000, but it’s now back to 800.
Hi I am in the process of being diagnosed. My blood work showed a steady increase in my platelets for the last five years. It is now 636. I just started an aspirin a day as of last night. I am due to get a bone marrow biopsy to confirm Essential
Name: Patty
Age: 53
Home: PA, USA
Caucasian
Hi Im Paolo
21 Years Old
Philippines
Diagnosed with PV having phelbotomy every month or sometimes twice a mont
currently taking anagrelide to lower my platelets. Anagrelide iw too expensive in the Philippines, Anyone here buying anagrelide in the other country?
Hi paolo im jeffrey im from philippinss first doc thought i have pv but finally got the correct diagnosis after seeing 2 hematologists email me back at cosmozeus466@yahoo.com
Hello, I also have ET since 2008 it was discovered through a routine blood test; I am on hydrea as well but I control it on and off as I observe the platelet count … I live in Beirut, Lebanon and I am 45 years old now … I forget about ET for long months and then all of a sudden I remember it and start reading and researching it … There are researches done I many centers to find a cure (there was a drug called Cytopia being tested and other couple of drugs I am trying to watch)
What I am worried about is only 2 things: the first is if this JAK2 mutation is transferred to my children? And the second is if it develops to leukemia … These are my constant worries but I put my faith to help me and wish for the best always … Hope this helps 🙂
I also have these concerns about genetics passing onto my kids, and the leukemia thing. I think I’m going to Google if there are any trial prescriptions that are safe and effective.
I’m 34 yr old female, mother of three, recently diagnosed with ET. I have some Arabic, Irish and other ethnic decent. Starting Pegasys injections today.
I have it too : (
My name is Dolores , from phila pa
Recently diagnosed with ET, I too was put on hydroxyuria 500mg 2 xs a day, along with 325 mg aspirin, I do already feel a difference in my hands and feet, and legs, however, I was not aware of the side effects, like the liver etc.
Now I’m nervous to take it, I too wish for a cure.
Kathy from Livingston Texas. I am 56 yrs old and was just diagnosed with Myeloproliferative Disease and Essential thrombocythemia. I am still trying to wrap my head around it. Not sure what I am to eat and not eat. My hemo guy is taking the wait and see approach. My platelet count was 640 last check,,,
Paul 45 from Los Angeles, California. My husband was diagnosed in 2011 at the age of 41 with ET. European, German, Russian and polish. When he was diagnosed his Platelets were at 1.4 million. Currently he is taking 3 Hydroxyurea, 2 Anagrelide and 1 Aspirin per day. We went back on blood work from 2005 his Platelets count was in the 500,000 thousand then. They gradually went up from there, but was never told to look into it. Until 2011 he started getting chest pains and could not breath. We have seen several doctor since 2005 and admitted to the hospital in 2009 as still was not caught with his platelet level in the 900,000. A Doctor finally caught in in 2011.
Has anyone tried home remedies to help lower your platelets? If so what was it.
Hi Lisa,
Peg 69 Michigan have had ET for 16 years, totally asymptomatic.
I, too, have been looking into alternative options. From what I have been researching, abnormalities occur (genes get turned on or off) when the system is out of whack. So the goal is to restore the body to perfect health. I started on the Budwig Protocol (aka Flaxseed and cottage cheese type mixture) 6 months ago. That included a month’s worth of coffee enemas to detox the body. That is supposed to help restore immune function. In addition, they recommended supplements to help restore. I also started to monitor platelet count every month to see the impact. I was surprised to see my count drop from 900 to 700. It stayed low for a couple of months and then bounced up immediately after a very stressful event. When I tried to figure out why, I realized I had been drinking a lot of Matcha green tea which is high in ECGC before the lower results.
Most recently, I read the book “n of 1” which chronicles a 28 year old man who was diagnosed with CLL (also a MPN in the same family as ET) and his various natural treatments. Bottom line, his leukemia is cured as validated by the last bone marrow biopsy! In checking what he did, the ECGC in green tea extracts was the last thing that made the change. So I researched extensively and found that ECGC is having quite an impact on things related to bone marrow. Looks like this have become a VERY common alternative treatment for CLL with great results. The national institute of health sites many studies on the positive impacts ECGC has relative to numerous cancers. So I recently started ECGC. I will let you know how it goes.
I would be interested in hearing from anyone else who has tried any type of natural or alternative treatments.
Peg
Hi peg how is your ECGC trying
Lisa,
There is much I can share. Too much for this blog. Contact me at PRyan8064@gmail.com and we can set up a time to talk on the phone.
Peg
Hi,
My name is Roxy and I am also recently diagnosed with ET. I’m 25 and from the Netherlands. I don’t have many symptoms, accept muscle pain now and then. Does anybody recognize this? I’m also having some trouble with my sight, but not always. I’m very stressed out at the moment because of the diagnose and worry a lot. 😦 so scared I won’t get old. I also have very shakey hands the last couple of days, but that could be stress. Hope to hear from sombody soon..
Love,
Roxy
I forgot to mentoin that I also have sore eyes from time to time.
Actually, all of the symptoms I have come and go. I also have a warm skin that burns (you know, like you’ve stayed in te sun for to long), but they’re also attacks. And I’ve lost some weight, although I think I can relate that to my enormously high stress level at the moment. It’s such a relieve to know I’m not alone and to read that others have the symptoms too. My count is around 1900 now, but I’m only taking baby aspirin. I have the CALR mutation. I believe there will be a cure for us very soon! I try to stay positive and calm, en meditate a lot. This helps.. Although I get a bit scared from time to time. I think I’ts for the best that we all have faith and ask for spiritual guidance. It will all turn out fine:)
Take care everyone!! Hope to hear from one of you soon:)
Hi All,
Im 35 year old white femail from NY. I was just diagnosed with Essential thrombocythemia. I have twin four year old boys and was hoping to have another baby. Are there any other women on here that have experienced pregnancy while having this disorder? I’m incredibly nervous to be taking the aspirin while pregnant… I’m waiting to meet with a doctor in New York City to go over my options. Nothing like speaking with someone that has actually gone through it though…
My platelet count last checked is 525K, and am on low dose aspirin daily. Only symptoms currently are fatigue.. but that could be from lack of sleep from stress and my twins 🙂
Glad to share my story and hear others…
Hi Christine and greetings from Australia.
Firstly, did you have a marrow biopsy and are you JAK2 positive or is someone “guessing” you have ET by your platelet counts?
Reason I ask is because higher than average counts can be due to different factors (infection is most common).
If you have been diagnosed by a pathologist through a biopsy (exactly like myself) then this is what I do as I am NOT big on the pharmaceutical pill taking…and definitely do not want to take hydroxy urea.
Every two weeks I go into the local clinic and have a Venesection which is simply a fancy medical word for removal of about 400-500ml of blood (no different to donating blood).
This suits me as I have never had a blood clot or pain related to clotting and hence I am in the low risk group. When I was first diagnosed, I had platelet counts of 1000k. Had a meeting with my hematologist today and after 8 venesections, my counts are at 650k and all the other markers are also dropping. 650k is the lowest I have ever registered.
The other thing I like about venesections is that afterwards…I feel much better and more energetic especially the next day.
That is my experience and I am just sharing it with you …NOT telling you what to do. You should discuss all options with your medicos including this one if you do not wish to take pills.
Good luck and DON’T panic. It is controllable.
Mick
PS: I am a chemist
Love your approach.. Don’t want to take any pills also. Thanks for sharing your story:)
Hi Aussie Mick,
May I know are you still doing venesections? Cheers and Merry Christmas
Hey lady from NYC!
I suggest you join the Facebook group: Essential thrombocythemia support group. All patients that go through the same.. Extremely supportive, helpful and wonderful people. Feels like a family:)
So much information about ET, hope to see you there!
Roxy
Thanks for responding!! I actually just signed up on that group!!
Good for you! You’ll be glad you did:) tag me once you’re there. My name is Roxy Fey from the Netherlands. Also recently diagnosed so know what your going through:)
Take care and don’t worry!
I am a multi racial female (creole, german, and Indian) and 30 years old living in the Bay Area of California.
I was diagnosed when I was 22 and was a high risk pregnancy when I was 24. However both myself and my little one (now 6) made it through healthy and my pL count dropped to normal range during my pregnancy. Immediately preceding though it spiked back up.
I’ve only been on the aspirin regimen for fear/caution of the side effects of the hydrea and interferon. My count was last 1.4 million 2 months ago and has continued to increase. I need to find a hematology specialist to work with in the Sacramento/Bay Area because I just don’t feel like Kasier has my best interest (or my child for that matter) at hand and I need to be around for her. Any suggestions or information would be GREATLY appreciated. To all of you surviving and overcoming ET, God bless, enjoy life, laugh daily, and be well!
Hi I also.have platelet countil over a million i.live in the Sacramento area and I go to a great.hematogist he has me on jaka first eventry though I don’t have the jak 2 it works for me .my doctor it Dr Spears at Sierra Hematology in mid town sacramento they are in the phone book .I recommend him very highly very caring and great office.I am a 37 year old white female thar was dignosed about 4 years ago
Tonya, wow what a small world. Thank you for the reply! I will look into this office and see if I can make an appointment. I’m glad to hear this treatment is working for you! I’m pretty fixed on attempting homeopathic remedies or simply lighter treatment than continuous medications. Is this office open-minded to people who wish to explore these types of options or are they pretty anti-non medical treatments? Thank you again for the response and for it to be so quick 🙂
Hi all, I am Australian, 62, and have ET, platelet count has been mildly elevated for over a decade, but only last year had bone marrow test and some new DNA testing – was diagnosed with ET, a genetic form with an amino acid mutation that differs from the norm for genetic ET and has not previously been recorded in medical literature. I have taken 100mg aspirin daily for many years (baby aspirin not available in Oz) but now have a reaction to it and have constant small bleeds under skin on arms & legs – aspirin reduced to every third day. I have trialled Hydroxyurea for 9 months now, beginning at 1x week, then 2x week, now 3 per week. I have had problems with this drug since the beginning, which have increased markedly on the increased dose (even though it is still a very low dose compared to most people). I lost over 10 kilos in last year or so, at only 44 kilos still, I feel that the drug reactions are more pronounced due to my small size. My platelets went up to 800 ish when I started this drug (I know that’s low compared to most of you), but are still only reduced to 620 after 9 months of the drug. It is causing me severe tinnitus now (ringing in ears) and last night & all today I feel fuzzy in my head, weak neck, headaches, ears like torture, weak & floppy legs, hands & so on – feel like my brain is being scrambled. I have been advised to continue on the drug 3 per week for another 3 months trial, but am not sure if I can tolerate it any longer. Only other available is Anegrelide but have been advised that the side effects are worse for this. My low platelets don’t require drug treatment except for now being over 60, which is considered high risk for stroke. 22 years ago, my active father took a stroke at age 62, had chemo & radiation & whatever was available for ET, then progressed to myelofibrosis & lived on blood transfusions for three years, before his bone marrow was unable to sustain life any longer – age 72. My only sibling is also ET, on Hydrea for a while now (86 kilos) and tolerates 8 doses per week. While literature states that this disease is rare, with three in one family and all of you spread across the world (& the others of whom we know nothing) – it doesn’t seem too rare. Cruel though.
Hi everyone, great to have found this site! I am Susana, 52, living in the UK, and was diagnosed with JAK2 positive ET in 2014, after noticing increasingly frequent visual disturbances and tingling feet. Platelet count was 700K, and I was put on low-dose aspirine which resolved the symptoms. But the platelet count continued to rise up to 1.5 million, and with the red cells also rising (and the disease evolving to Polycythemia Vera) I started on weekly pegylated interferon injections (90 mcg) in November 2015. The results have been great: in just 3 months, the red cells are now normal and platelets are down to 530K. The only side effect so far had been tiredness, but I have started to notice hair loss in the last couple of weeks, as well as dry brittle hair. Does anyone here have experience with peg-interferon and specifically, does the hair loss/thinning subside at some point? Susana x
Hi, I’m a 38 year old mother of four from New Zealand who was diagnosed with ET just over a month ago. My platelets have been slight elevated since 2010 but then lowered. My platelet level rose to 985 over the Xmas period as I had a chest infection and campylobacter. The last bloods were just under a month ago and sitting at 635. I’m on low aspirin once a day. My symptoms are tingling in hands and feet/legs and some visual effects on and off. I’m feeling quite dizzy at times and wondered if the aspirin could do this? I’m Jak2 negative.
USA
F
54
Caucasian
ET and Polycythemia Vera
Hello, My name is Dee, from Philadelphia , pa, USA I was diagnosed with Jak2 mutation 10 months ago my platelets were 550,000
The Drs weren’t overly concerned, they said if they go up to one million then we have something to worry about, but they were wrong, my platelet count caused me to wind up in the ER with Aortic Blood clots that broke off and infarcted my left kidney and spleen, and my platelets were 550,00 worst pain in my life! !! I felt like I was dying! ! I’m now on Hydroxyurea 500 mg 2xs a day and 325 mg aspirin 2xs a day, This stuff makes me so fatigued and sick, but the alternative is interferon transfusions, my doctor said that would make a sane person crazy, so I’m staying on hydroxy, probably for life, this disease had turned my whole world upside down, every pain I get now I think it’s another blood clot and in rushing off to the ER at least once a week, My anxiety is in overdrive, and now taking meds for that, Im also experiencing heart palpitations that wake me up in the middle of the night, every night, It’s a horrible place to go with that, I was also diagnosed around the same time that I have Mixed connective tissue disease , so I really hit the jack pot last year! ! But my main concern is the blood clots of course, I’m just praying to get some stability back in my life, and it scares me there isn’t a cure.
Hello, My name is Dee, from Philadelphia , pa, USA I was diagnosed with Jak2 mutation 10 months ago my platelets were 550,000
The Drs weren’t overly concerned, they said if they go up to one million then we have something to worry about, but they were wrong, my platelet count caused me to wind up in the ER with Aortic Blood clots that broke off and infarcted my left kidney and spleen, and my platelets were 550,00 worst pain in my life! !! I felt like I was dying! ! I’m now on Hydroxyurea 500 mg 2xs a day and 325 mg aspirin 2xs a day, This stuff makes me so fatigued and sick, but the alternative is interferon transfusions, my doctor said that would make a sane person crazy, so I’m staying on hydroxy, probably for life, this disease had turned my whole world upside down, every pain I get now I think it’s another blood clot and Im rushing off to the ER at least once a week, My anxiety is in overdrive, and now taking meds for that, Im also experiencing heart palpitations that wake me up in the middle of the night, every night, It’s a horrible place to go with that, I was also diagnosed around the same time that I have Mixed connective tissue disease , so I really hit the jack pot last year! ! But my main concern is the blood clots of course, I’m just praying to get some stability back in my life, and it scares me there isn’t a cure.
Hi I have E T I was diagnosed in August 2015 I’m on 1500 mg of hydroxycarbamide and allopurinol and aspirin
I had an enlarged liver and spleen and had my spleen removed in 06/06/14 prior to being diagnosed Jak2 positive
I had an angina attack before being put on hydroxycarbamide and a haematoma
I’m constantly tired fatigued and get high Uric acid because of E T
I was fit healthy and recently seen a professor at Royal free London Hospital and linked my condition to work chemicals containing benzene and toluene
I am 44 yrs old. I also have been diagnosed with ET my platelet count shot up to 605 and then bck down to 540 after being placed on a high dose iron regiment of 4 times a day. I still have fatigue at times. I sometimes have flu like systoms. I am on low dose asprin. I also get frequent nose bleeds and joint pain. My Dr does not want me on any other medications at this time. I get depressed at times because loss of energy but feeling much better being on the iron pills.
Hi there Paolo! I come from the Philippines as well. I am 43 and i was diagnosed with ET since 2008. I have Pegasus Interferon as weekly treatment. May I ask how much is Anagrelide there in the Phils? Pls email me juliesvenningsen33@yahoo.com — i have extra anagrelide here i can give it to u for free.
I have had this blood disorder for about 3years the medication took care of the elevation it is now 450,000 it was 800,000 so if I am under control I don’t know why I have to keep taking the medication ?
Hi Guys!
Im Lejen 24, female (diagnosed with ET at the age of 21). My mother is from Philippines and my father is from Taiwan. My platelet count is ranging 600,000 to 880,000 but no medication was given since my hematologist advise me that this count is still not much alarming comparing with her other patients which has more than 900,000 count. Although once prescribed me clopidogrel but the effect of that with me is not good so right away she stop it. Now I am 24 and planning to have my second baby but having difficulty and I am very concern if ET affect chance of getting pregnant?? Please if anyone here have same scenario with me kindly advise me what to do. Thanks a lot!
Hi to all of those are on this …our team. I am a nurse from the United States who was diagnosed with Essential Thrombocythemia 23 years ago. The diagnosis was made, as it is frequently, by a having a CBC drawn for a routine reason…. And as importantly,by bone marrow biopsy. My platelet count was above 1 million and initially attributed to an issue in my ovary. after removing my ovary my platelet count continued to rise and my very intelligent GYN physician referred me to hem onc MD. sInce that time I have been on Hydrea 1000 to 1500 mg per day to maintain platelets below 400, 000. for 23 years!!!!
I have had some troubled times, including meningitis .perhaps potentiated by low wbc counts in combo with a virus, headaches , burning feet and itching. i have had some clotting as well as bleeding issues. Most days….I am very, very tired. i experience some dizziness, lots of sleeplessness.
BUT
I have been able to work for at least 8 to 10 hours every day since I was diagnosed. I have lived to raise my adopted son, because I have made certain to be taken care of by hem onc physicians who are familiar with our our myeloproliferative neoplastic disease. BE certain you do the same for yourselves! GOOD luck my friends, listen to your bodies and take care.
Hi my name is Chris(white male) and i live on the isle of man (little island between UK and Eire).
Was diagnosed with JAK2 positive in March 2002, seems like a long time ago now!
Had just suffered a heart attack at the age of 42 the same age as my father died! All sorts of alarm bells were going off as to what was going on. After to say now having just suffered a heart attack and them a month later being prescribed with ET you start to wonder if the grim reaper is knocking at your door?
My platelete reading at the time was just over 900 so was ridiculously high. From taking no medication at all, just relying on my own body defense mechanism to look after things, to chemical introduction to balance things out, i found this aspect totally over whelming!
2 tablets of 500mg hydroxurea per day was the initial dosage , steadily increasing to 4 and this did the trick with regards to controlling platelets.
Fast forward to 2016 i currently take 3 x 500 mg and i am due to see my blood doctor tomorrow infact. Side effect of the drug leaves me open to any viral illness i can catch! Body takes forever to recover over the simplest of things! Lethargy, is a constant grind and the fingers and toes tingling,nausea, constantly feeling sick , is something you learn to live with. Remember thinking at the time of diagnosis, that i cannot even get a cancer that is common!
On the plus side medicine is evolving and changes are happening all the time so it is important to remain positive, especially within a family environment.
In conclusion: March 2002 was my introduction to this small blip in life, 14 years on and through the wonders of science and great treatment from my hematologists we are still discussing this little adventure called life!
Thanks very much for the information its really hopefully it gives stregh to people with the same complication and m very happy.
I have primary thrombocytosis with 967 higher platelets I m on hydroyurea aand asprin treatment 34 years but m not sure if is right to take this medication .and I want to have a a baby so please I need some information or if I can hear someone s experience.
my name is tracy reid fron northern ireland i have had et for nine years my brother had pv he has passed sence he was 27 but he passed on the 21st of sep 2014 he was only 49, i am 46 now and have just atarted getting b12 injection too
Hi Tracy sorry to hear about your brother, my dad died from a stroke caused by PV a few years ago. I am diagnosed with ET and may be developing PV. My family is originally from Ireland as well. Hope you are doing ok 🙂
Hi Tracy Reid, by b12 injection you meant vitamin b12?
HI Tracy, Very sorry to hear about your brother. I am Charity and am 43. I am from UK and was diagnosed with ET last year (2015). My doctor noticed that every time I had a blood test my platelet count was high so I was then referred to the hospital. I am JAK positive (discovered after having a bone marrow biopsy) and my platelet count is on the rise, currently 750. I take 75mg Aspirin a day. I am a terrible old hypochondriac and so is not an ideal disorder for someone who already thinks they are about to croak at the merest sneeze.. but hey ho. So far, aside from feeling tired all the time, my other symptoms include strange visuals (3 times now each lasting 15 to 20 mins), whereby I see a kaleidoscope of colours in my peripheral vision. I also have Mastocytosis Cutaneous (a totally separate skin disorder that was diagnosed 12 years ago) it is cause by too many mast cells in the blood and results in funny itchy freckles.
I have this for about five years all I do is take a pill every day. I don’t know what everybody is talking about I feel fine and my platlets were up there now they are at 450,000 even when they discover my platlets were over 850,000 I didn’t even knew there was anything wrong. So I guess I am lucky laura
Hi my names Phil I live in the UK I had a splenectomy in June 2014 my platelets was 945 and stayed around 840 I was left by my Haematolygist as they dismissed as high cause of the splenectomy I then had an angina attack in February 2015 and and haematoma in March 2015
My GP referred me back to a different Haematolygist in June 2015 and was diagnosed as Jak2 positive I’m on hydroxycarbamide 1500 mg a day and allopurinol 300 mg and aspirin 75 mg daily as well as heart and blood pressure tablets, and VK penicillin for my loss of spleen I’ve finished work now as I’m tired fatigued and breathless daily I’ve seen to professors now and just live my life best I can it’s been a life changer for me
I just went to drs have been taking medication for elevated platlets.my platlets were normal now they have been rising had to increase my meds. I did feel tired so I guess my body was telling me something was wrong have to go back in six weeks to see if meds are working laura
Hi there, thanks for starting your blog! I live in England and I’m 52 years old, first diagnosed with ET 10 years ago, then told I didn’t have it then re-diagnosed last year
I have jak2 positive gene mutation. I suffer from fevers, sweats, fatigue, dizziness, headaches, blurred vision, poor circulation, itching arms if I shower and an awful crawling feeling and weakness in my legs. When I was first diagnosed I was told ET has no symptoms but I think medical opinion is now accepting there are symptoms. My dad died from a stroke,he was diagnosed with PV which is a similar disorder. I have been admitted to hospital twice with tachycardia and right sided abdominal pain, symptoms last a week and then subside, at the same time I feel very nauseous and i get a red rash on my face. No one has offered any diagnosis or linked it to my ET. I would be interested to know if any ET sufferers have experienced similar. I have recently had to reduce my hours at work but get little support as there is not a lot understood about ET in England.
Catherine, I feel horrible to reply after such a long time of your suffering, but the ignorance about the severity of this disease is not limited to England. I’ve been looking for answers for my symptoms for over a decade from some of the “finest doctors” only to have figured it out myself using the latest genomic tools available on the web. We will get through this. Best of everything to you.
David
Hi I’m Phil 60 I started in April 2013 with a rash on my face and further tests shown enlarged liver and spleen they said it was haemolytic anaemia I had ultrasounds CT scan and bone marrow tests X 2 in June 2014 had a splenectomy then my platelet count went to 925 and they just thought it was through the splenectomy
In October my vision was so blurred I was sent to the eye hospital for tests all came back ok
Then I had an angina attack in February 2015 a month after my Haematolygist dismissed me for 12 months then in March a had a haematoma both times ending up in A&E
In May 2015 my GP did a blood test and my platelets was 845 he referred me to a different Haematolygist who performed a Jak2 test and surprise surprise it came back positive
I’m now on hydroxycarbamide 1500 mg a day and aspirin for E T and allopurinol gout caused through E T I’ve now finished work as I’m so tired and fatigued with the chemo I’ve seen two professors one at Royal London free hospital and one at Manchester university
I’ve had two operations on my feet cause of joint pain.
Hope this helps with symptoms your excited experiencing
Phil
I was just dignosed with et about a month ago I aquired an infectioon and went to er didnt come out for four days I now have a hemotologist and on hydroxyurea and asprin my platelets were also in the millonths im hoping theve gone down as to I need a surgery but cannot have it untill there at safe levals on upswing I quit smoking but this disorder scares me and I really just want to live im 51 and have 2 children older iof course at home and 3 in other states would like to be around a while god bless all.who suffer from this amen please help us find a cure amen
there is a group on facebook – Essential thrombocythemia that has 1500 members. its a VERY active group and any questions you have will be answered within 15 minutes –
What is group name
My et was under control for about three years but I did not feel well so my dr drew blood and my platlets started rising went over 500,000 so increase meds I was told that my et would stay under 450,000 but that was not true what happens if it keeps rising laura
Hi All, Mick from Australia here. It is VERY interesting reading all the different experiences, blood counts and meds from all over the world on this blog. I too am JAK2 +, very blurred vision, night sweats, extreme tiredness/lethargy, cramps and the worst…..Gout. Asked my Heamo many questions…..Gout is a side effect of ET, the lethargy is because the JAK2 gene is permanently “on” and all your energy goes into making blood, blurred vision because of small clots in the tiny eye vessels, pulsate bilateral tinnitus (ringing in ears) due again to small clots in the tiny vessels.
The DOCS here in Australia must view ET very differently from the rest of the world when I read the experiences of others here…..my blood counts were done 8 days ago and my platelets have risen from 750K to 980K in two weeks. I asked my GP and Heamo if I should be concerned and was told “No”. No medication (except a mini aspro) offered, no explanation, no concerns whatsoever. I am 49 and considered low risk.
I have blood tests every two weeks and I watch the platelets rise with every test….and no one seems concerned.
Thought I would share this with you all.
God Bless.
Regards,
Mick
Mick, I’ve just found this site. I hear your pain.
“I have blood tests every two weeks and I watch the platelets rise with every test….and no one seems concerned.” This seems to be the rule for us, doesn’t it? Let’s not let that get us down. We have serious medical problems that are just waiting to kill us – each of us – at any moment. Now, we’re here for each other and we will get through this. Best to you.
David
Meant to add this bit too…….when I was first diagnosed with ET, I was having venesections (500ml of blood extracted) every week or two. This seemed to keep things under control. Now the DOCS don’t bother with it. Four different Heamo Docs in 10 months….they all have a different opinion and approach.
I spent many years as a research scientist/chemist and use the scientific approach to everything – there is only ever one explanation – the right one! I am seriously questioning how much science these medicos actually use/know. Four different Heamo Docs – 4 different approaches. That is NOT science…it is guessing.
Good luck all.
Mick, after reading this second post, I think we’re probably kindred spirits. I struggled with my symptoms while trying to be an atmospheric chemist, flying sorties all over the planet. I went on short term disability which turned into full time, and I’ve effectively destroyed my career over this. I think you and I can help each other. Please drop a line when convenient. -David
Hi all
I’m Irene
living in Greece
I’m 48
My platelet count is 1.03m
Was diagnosed just five days ago.
Waiting for the results on the Jak2. Now only taking aspirin.
Doc wants a bone marrow biopsy
I have always been very healthy (alopecia aside)
Hi I’m Phil from the UK I was diagnosed in 2015 August I’ve had a splenectomy had an angina attack and a haematoma
I’m 60 now on 1500 a day of hydroxycarbamide and 75 mg low aspirin and allopurinol 300 mg daily
I’m so tired and lethargic all the time I’ve had bad headaches blurred vision have monthly blood tests been told life expectancy 9 to 15 years from diagnosis
Name : Mazuan
Country: Malaysia
Age: 33 (as of 31)
Ethnicity: Malay
Hi Mazuan,
I’m from Msia as well. May I know what is your platelate count now? What medication are you on?
I have had ET fo 2 1/2 years. I am 65 and have been on Hydroxeuria and 81 mg aspirin for the duration. Had over 1,500 platelet count. Take 1,000 mg and 1,500 mg alternating every day. Lots of fatigue from Hydroxeuria but platlets bounce around 350 to 450. Take 1/4 Percocet 3 or 4 times a day which helps with fatigue and nausea. I travel for business almost weekly so fatigue is an issue.
Just sent one but want notification so added check mark.
Hi , my names Holly , diagnosed 3 years ago, age 42 now, from England , British, Female.
Hello Everyone,
Reading all of your comments has been very illuminating and heartening – I am not the only one. I have been struggling with what would otherwise look like a bizarre set of serious medical symptoms for about 15 years. Hemiplegic TIA, passing out, losing time, inability to think or concentrate, visual disturbances as with occular migraine, extreme bone and joint pain, delirious fevers with prolific sweating, and most recently, no sense of thirst. I recently was able to diagnose the problem by myself using web-based genomics tools such as Ensembl on a “23andme” genomic profile. It’s been quite challenging since I’ve spent my life specializing in math and physics, and not biology. I think I have had virtually all of the symptoms I’ve read from you all, and at this point, am either going to have a doc help me with the pain so I can function (something no doc seems to want to do) or turn to some other extreme alternative. I look forward to a constructive, beneficial, sharing relationship with you all. Take the best of care of yourself, so you can take the best of care of those you love.
-David
Tami, diag 2007, 69 yrs old from Washington state US
Hi Tami,thanks for sharing, may i know what is your count now and what medication are you on?
Perhaps I’m the “lucky” one in this group. I was diagnosed in 2012 at age 55 on a routine blood test during a physical. I’ve always been highly active gardening and playing soccer (this probably really helps my circulation and oxygen levels in red blood cells). I also have Factor V leiden a blood clotting factor through my mom’s side of the family. I treated the diagnosis as an “oh well”…another rare thing..since I have ulcerative colitis (no flares since 2012) also. I’m on hydroxyurea (aspirin causes me to flare up with UC), but have handled it well and go along doing what I love to do, while visiting the Hemo every 2 to 3 months…
Oh…I’m from Atlanta, GA…US
Question for anyone: Do you find your symptoms diminish after a phlebotomy? Mine don’t seem to. If I go too long I just get nose bleeds, but the pain, changes in vision etc. all are pretty consistent regardless of the plebotomies. If you’ve managed your symptoms, could you share how you’ve done it? Thank you!
David, I have PV with high platelets and am on aspirin and Pegasys interferon. The aspirin resolved most of the symptoms I had (e.g. visual disturbances, painful feet). And the interferon has almost normalised the blood counts after 8 months – but it has its own side effects such as fatigue and hair loss. On balance, I am much better now than one year ago.
Hi David and Susana – I have ET with a bit of PV as my platelets when diagnosed were 1.2mil and hemoctrit at 0.57. What you call phlebotomy I will refer to it as venisection. I had fortnightly venesections for the first two months, this was increased to weekly for one month until my hemocrit went to 0.45. The platelet count is still around 800,000 but fluctuates between 7-9 000k. It is a balancing act between production and removal – like trying to achieve a “steady state” once the levels are lowered. What I am saying is the venesection works well for lowereing your hemocrit (space occupied by red blood cells) but is only marginally effective in controlling platelets. This based on my own experience. This is my data; since October last year I have had 17 venesections and continue to have at 2 to 4 week intervals now. I am JAK2 +, I do feel better after a venesecion but the tiredness increases. Tiredness is due to the JAK2 gene being “always on” and zapping your energy because it is telling your body to always make blood.
It may take some time to find the balance between production and removal but I refer it to drug therapy as I do not want the side effects.
Anyway, this is my experience with phlebotomy and thought I would share it with you. The main benefit is the swelling,, gout, pruritis (itching) and to some extent headaches, do reduce.
Hope this helps and feel free to ask me any questions.
Good Health.
I am Angelo Roy san Pedro,from the Philippines…I just diagnosed with thrombocytosis…I had fever for a week.the doctor suggested to have an xray ,and it turned out negative twice…I had CBC to see if its dengue…but my platelet counts reached 1800..with only 300-500 the normal level..i was and still spitting a very small amount of pure blood…i was wondering about the food the i should take for this kind of illness..hope you could help me…im 39 yrs.old ,and suffering from diabetes…thank you so much..
Hi attended haematology for couple. Of yrs referred by my GP as being sick/vomiting mostly daily with sore heads and painful feet… ended up having massive heart attack due to blood clot (luckily in ambulance at time of cardiac arrest) was 29 years old at time (now 45) scottish with 2 daughters (suffered from Pre-eclampsia with both pregnancies unknowingly at time.due to blood disorder … been taking hydroxurea since August 2000 .
Hi guys, My name is Mike, I am 36 year old and 1 month back my hematologist confirmed that I have Polycythemia Vera, but I am bit confused as per my JAK-2, JAK2 Exon 12 and MPL test are negative but as per serum erythropoietin (EPO) test 2.3 lower than minimum.
Does anybody else have the same symptom, I am confused and depressed when I think about this disease.
I am on Hydroxyurea 500mg/day and Aspirin on daily basis. Also in last 1 month I have done venesection 4 times, my Hb count was 19.2 and hematocrit was 57. As per bone marrow aspiration doctor finding is below.
“Reactive marrow. Early Myeloprolifirative disorder as to be excluded”
Cellularity: Hypercellular.
Hi!
I am 35 y/o and got diagnosed with ETa year ago with platelet counts 800-900. I was started on aspirin 81 mcg. I see my hematologist every 3 months and most recent platelet counts are 1104. I read your experience and all I can say is if medication got things under control, what else we need right! I am desperate to get things better as I am hoping for a pregnancy in the future.
I was formally diagnosed last year, but I’ve had it for years. I’m on 81mg aspirin and I see my hematologist/oncologist every 3 to 4 months for blood check. I’m dealing with cold legs and feet on a daily basis… I bruise very easily.
I’m 54 years old and live in Massachusetts.
I have had this for about three years. Never new I had it until blood work . Was put on hydroxyurea brought my platlets down I feel great but a couple years later started going up again so blood dr increases my medication. Feel great so it went back down so far good sometimes I wonder if I even have it ;
I was diagnosed yesterday, 9/2/16. I’m 57, female (Arizona, US) and this was discovered through a normal blood test during a routine physical. My platelets over the past 3 months have been around d the 637,000 range. I also have the dreaded gene mutation for it. I started taking Hydroxyurea yesterday. I’m scared to death.
DJ – I know it seems scary at first, but ET is very manageable and should not shorten your lifespan. I was diagnosed at age 53. My platelets were around 600,000 for several years and got as high as 900,000. I was only put on hydroxyurea because I was about to have a major surgery. My numbers are now much better. I also take aspirin and folic acid. I stay hydrated and try to make sure I get plenty of sleep. I do bruise easily, but overall life is good! Last week, I did a high ropes course with my kids – trying to stay active cos that’s important too!
if you folks are on facebook – there are 2 VERY ACTIVE and knowledgeable groups that will absolutely answer every question you have. they are amazing
It’s very scary. I’m already a cancer survivor. I’ve be et for years my primary ignored it. I deal with severe bruising. And cold legs and feet. Discoloration of skin. Bleeding. I’ve been as high as 752. But advised that treatment other than aspirin not advised until it gets closer to a million. I’m treated at Beth Israel in boston. One of the best. I’m intrigued by the folic acid concept and will investigate. I take a few supplements. I’m glad I found this blog.
My platelet count bounces around somewhere in the 500-700 range. Hydroxyurea seems to be doing the trick. My life HAS NOT CHANGED since my diagnosis when I turned 55. I still garden, play soccer, dance and hike. Stay active & eat well! I can’t do aspirin due to my ulcerative colitis “label”, though I haven’t had a flareup now since 2012. Being worried or afraid certainly won’t help…live life as joyfully as you can!
Hi I had my spleen out in 06/06/14 I also had an enlarged liver my platelets was ok before my splenectomy then they started to rise to 925 I had an angina attack in February 2015 then in March a haematoma in July I changed Haematolygist and found I had the Jak 2 positive I was put on 1500 a day hydroxycarbamide for life that was August 2015 my platelets dropped to 430 but in July 2016 I still had a DVT my blood problems was caused through chemicals in the Aerospace industry
Hi, I am a 67 year old woman, diagnosed with high platelets in 2013 – consult with a hematologist early 2015, at which time platelets had increased to 660. Hematologist said we would just wait and watch, so at this point it is not confirmed whether it is ET or “Reactive Thrombocytosis”. My platelet count less than a month ago had risen to 900+. I will be seeing a Hematologist in the next few weeks, since, as you know, the only way to confirm ET is with a bone marrow biopsy. I have been focused on improving my kidney health, as my lab work the past few years reflects ongoing Chronic Kidney Disease (stage 3). So, have been working on taking care of myself (striving for a balance of nutrition, hydration, exercise, sleep, plus shedding some extra weight). Curious about the correlation, if any, between high platelets and kidney function. I appreciate your blog and input from each contributor. Thank you.
Hi you can get a blood test to confirm if you have ET they test for the Jak 2 jene to confirm
I had two previous bone marrow test which didn’t then 12 month after my splenectomy I had platelets at 925 I had an angina attack a haematoma
Then when they confirmed I had ET I went on hydroxycarbamide 1500 mg a day my platelets come down to 430 but I got a DVT even on chemotherapy!!
Thanks for your response, Philip. I appreciate the additional information…I was unaware of the test for Jak2. I look forward to meeting with the hematologist to see what he recommends. I hope things are improving for you and your health challenges improve, going forward.
Hi Carol, there is also a test for CALR. I would ask about that test too. Apparently CALR indicates the risk of stroke is lower
Thanks, Mike. I am making note of suggestions received here, for future reference with Dr.’s appt.
Met with Hematologist and testing confirms Jak2 gene. So I began my first day of treatment with Hydroxyurea today, will follow-up with labs in 2 and 4 weeks to adjust dosage, as needed. Meet with Hematologist again in 1 month. At least we are dealing with a diagnosis…not just wondering. Grateful to have this Hematologist, he was very informative, compassionate and pro-active in dealing with this challenge. I hope you all are doing well!
Lisa 49 from Pennsylvania United States and diagnosed with ET 18 mos ago…though suspected I may have had this for decades due to past medical history. My brother also has it. Worst part is the severe bone pain, fatigue, headache and extreme itching and scales which ooze clear fluid from scalp..and several enlarged lymph nodes at base of my skull left and right. Only on Aspirin.
I’m only on aspirin. Some of the effects are trying. But my hemotologist at Beth Israel in boston is monitoring the blood. Being on anyour treatment before platelets are over a million is unnecessary. And creates side effects.
I am a 50 year old female diagnosed a year ago with blood platelets at almost 2 million. Started out taking Hydro and aspirin. Then move to a Hydro, Anagrelide, and Aspirin. Developed mouth sores from the Hydro. Now on just the Anagrelide and Aspirin. Platelets are now normal around 300. Still go to the Doctor every month for blood test. I tested negative for Jak 2 but positive for CALR. My question is I am sometimes having fatigue even though my platelets are now normal. Is anyone else having problems with fatigue with normal platelets?
I also have fatigue and it seems to feel worse when I’m sitting and mild palpitations too.
Hi Pat,
My platelets also are high, more than 1.5 million. I started to take Anagrelide 2 capsules Daily. What’s your current dose ?
Hi I’ve just been diagnosed with ET. I’m a 29 year old female. I have tingling and throbbing pain in both the legs and burning sensation too. The ultrasound of whole abdomen showed an enlarged spleen and liver.My last cbc report showed my platelet count at 1500000. The fact that’s there’s no cure for it worries me a lot.
I was very worried when I found out about my diagnosis but I have done a lot of research. I have a new doctor that is a MPN specialist. I now realize I can live a normal life with the correct medications and treatments. Once you get the disease under control and get the platelets back to normal your tingling and throbbing should go away. It did for me. Sometimes I still have fatigue I think that’s something I am always going to have to deal with. But as the platelets go back to normal you should feel better. I have been to several MPN conferences in NYC and have learned so much. Please let me know if you have any other questions. There’s not too many people with this disease and I know how you can feel isolated.
I am on hydroxyurea, 2 yrs 1000 my a day. Hair loss, tired all the time, bones hurt so much, hot then cold feel like I have a fever. I’m 70 living in USA
I have a dors appointment coming up. The last time I went was in April and it had gone down under 350,000. So by them increasing my medicine two 500 mg of hydroeaux . Has put it in control. So I hoping when I go back I can go back to just taking one pill a day. By the way I feel good no side affects. Laura
It’s called “Essential Thrombocythemia Support Group”… the creator will message you after you’ve sent a request to join and she will ask you if you’re a patient or a doctor. Upon your response you’ll be added. Come join us!
Just found this group. I was diagnosed about 5 years ago and since then always on medication (Droxia) but always searching for an alternative. Do people here discuss non-drug alternatives?
Claire
Hi Claire, yes alternatives have been kicked around on this site but there doesn’t seem to be anything out there that is really effective. I would make sure your vitamin D levels are normal.
Mike
Hi Mike, I keep searching and mostly just find ways that make my levels go up. 😦 But yesterday I got a report that is encouraging– platelets down from 650 to 555. Maybe just a fluke, but if the next report shows a similar drop, I will report on exactly what I’m doing. It’s
a bit complicated. For some reason I haven’t been getting email notices though I have checked “Notify me.” Am I supposed to have something entered something for “Website”?
Hi if your high risk nothing but hydroxycarbamide Asprin and allopurinol will touch E T I’m 60 was diagnosed in 2013 at 57 I’ve had an angina attack a haematoma a DVT in the last 12 months
I’m on 1500 mg of hydroxycarbamide and Asprin 75 mg and allopurinol 300 mg daily for life
My last Haematolygist visit even with taking all this my platelets rose again for the last 3 visits
I’ve also experienced blurred vision for two months
Went to blood dr my platlets were good because my medicine hydroxycarbamide was increase now my white blood cells have dropped so now I back to regular dose of 500 mg a day has any one have there white blood cells been effected from the medicine
Hi Claire, searching for information about ET can be really confusing because it’s classified as a myeloprolifertive disorder and that groups it with problems that have very different treatments. I like this blog better than the facebook page that is suggested from time to time because it is focused strictly on ET. About two years ago I got a second opinion and was tested positive for the CALR mutation. Using Hydroxyurea my platelet count was down to 550 – which was great as it over 1.2 million. Because of the CALR test the doctor said I should stop with the hydroxyurea. If my platelet count cleared 1.5 mill he recommended pegalated interferon. Here’s the big news, I expected my count to go right back to over a million, but it didn’t and my count has been fluctuating between 650 and 800. That’s low enough to stay off medication. I’ve had really low vitamin D levels and I getting them right played a role. I also wonder if the hydroxyurea did a reset. Both hematologists I’ve seen say probably no but they also say maybe.
With counts between 500 and 600 you problem need to just focus eating a healthy diet and getting some exercise. One of the big changes I’ve made is to eat a lot more fresh fruits and veggies and to avoid processed.
When you post to the site you need to make sure you click the “Notify me of new comments” at the very bottom.
Please keep sharing your experiences.
Mike
My platelets run between 550 and 750. It was explained to me that medication was not necessary unless I got over the 1million mark. I am checked ever 3 to 6 months. I am trying to eat more veggies. And trying stay more active. I deal with cold feet and legs at night and sleep with a heat throw over my legs. Other than that I do fairly well. I take 81mg of aspirin a day and supplements D and others as I deal with the issues of lyme disease. I think it is important to remain positive.
Judy
Hi Mike,
Completely off medication! How lovely! Congratulations! That’s what I’m striving for — to get off the Droxia because it’s not only is depleting me of essential nutrients, but also messing up my DNA. The problem for me, though, is that I had a stroke 5 years ago so I’m considered very high risk even with Droxia keeping my numbers in check.
I’ve twice now clicked to be notified, and with this reply I’ll try again, but I’m not getting any email alerts.
Claire
Mike, if you’re low on D, is it possible to get more sun? I threw away the rest of my D3 pills after reading this: http://www.sciencealert.com/vitamin-d-tablets-may-be-worse-for-you-then-nothing-at-all.
Claire
Claire, thanks for the link. I live in Oregon and winters are pretty cold. I try to get natural sun light in the summer. I didn’t see anything in the article to convince me to stop taking vitamin D. My D levels were incredibly low a few years ago and I am barely in the normal range now. Since I’ve been taking D my platelet count has stabilized and I’ve been able to stop taking Hydroxurea. The only medication I take now is 81 mg aspirin. So, I think I’ll keep taking the D.
I really appreciate the link, but it seems that for every study that demonstrates something helps there’s another study to contradict it. So we all have to decide for ourselves what works best. I strongly believe that the most important things are to eat lots of fresh vegetables, avoid meats and processed foods, and to exercise regularly.
Mike
Name: Kendal
Country: Canada
Sex: female
Age: 23 (diagnosed when I was 20)
Ethnicity: Caucasian
I’ve had high platelets since I first started doing blood work when I was 17, but the doctors never mentioned it until I was 20 and it had rose even further. I’ve had symptoms (headaches, visual disturbances, dizziness, pinprick bleeds, nausea, chronic fatigue and insomnia) since I was 15 though, so I imagined that’s when I first started. My counts typically sit around 1.5 million, but for now I’m just taking low dose aspirin.
My issue with ET treatment seems to be that they focus more on stopping thrombolitic events, and sort of ignore the quality of life aspect. The everyday symptoms can really affect all of us ET patients. I’ve heard of a lot that have retired earlier because they don’t have the energy, but at 23 that’s just not a choice. I wish there was more done about these “less significant” (in the doctors eyes) issues.
Hi I’m Phil 61 year old male in the U.K. White British with essential thrombocythemia since 2013 mine caused by chemicals in the aircraft industry
I’ve had two bone marrow tests a splenectomy in 06/06/14
Then my vision was blurred in October 14 to August 2015
I had an angina attack in February 2015 then in the March a haematoma in the August 2015 I was put on allopurinol 300 mg daily for life 75 mg Asprin and hydroxycarbamide 1500 mg daily for life but in July 2016 I still got a DVT I’m under my Haematolygist who I see every 12 weeks last time in November my platelets had still risen !!
Hi Lara, My current dose is 4 Anagrelide a day plus the daily aspirin. I am going to see my MPN specialist every month. My blood platelets have range from 100,000 to 650,000 in the past several months. Hopefully I can soon find the correct dose of Anagrelide. But I feel a lot better than I did when my platelets were 2,000,000. I am also glad my Doctor changed me from Hydro to Anagrelide. The mouth sores were very painful with the Hydro.
Hi Pat, thank you for your response. Is it possible for you to contact you by my private e-mail ?
My e-mail : lara.kaytanlioglu@gmail.com
Greetings All! I tested positive for JAK2 in September and I realize I have not updated since beginning my Hydroxy treatment in September. When I began treatment of 500mg twice a day and 81 mg aspirin, my platelet count was a little over 900,000. My platelet count began to drop over 200,000/month and has stabilized in the 300,000 range for November and December. I don’t need to see the doctor until mid-March for re-check. I do not notice any obvious “side effects” (gratefully). I did take a break from part-time work in a local elementary school, as a teacher’s aide for children with special needs. It was not that I was sick, but I was cautious to see how I responded to treatment and my understanding was that the medication, while suppressing platelet production, was also a mild immunosuppressant, and working that closely with young children (especially through cold and flu season), is like living in a petri dish. At 67 yo, I decided to stay home and try to take care of myself, as well as be more available for my family. It has been a good choice, as I keep very active and healthy, with the exception of a 3 week virus over the holidays. I am grateful to be doing so well and my doctor seems pleased. Someone mentioned their WBC lowered and mine has, as well, though it has remained on the low side of normal range. My doctor said that is normal with the Hydroxy. Due to my age, health history, etc., I am considered high risk without medication, however, my doctor expects that this will be my maintenance level for this RX and has had patients live long and otherwise healthy lives on this protocol. At this point, I am encouraged.
My platletts are over a milliion my i am only 38 years old
Hello Tonya, welcome to the club. Are you on medication? Do you have any symptoms? When did you first learn that you had a high platelet count?
Hi all
I was diagnosed last year when a routine prostate test picked it up. My count was 850,000. Over the last 9 months I have been taking varying degrees of tablets and my level has now come down to 520,000. I have found that I get tired a lot quicker and seem to be more susceptable to coughs and colds But at least my level is coming down now
Hi Barry,
Are you on medication ?
yes, still trying to get the dose right but at the moment it`s 1000mg of HU monday to friday and 500mg at the weekends. Also on 1 soluable aspirin a day
There is an ET support group of some 1800 people on Facebook that you might find helpful. I have learned a tremendous amount from others and perhaps you might too.
Hi Peg,
What is the name of the group on Facebook ?
“Essential Thrombocythemia Support Group” There is one with 1800+ members that is worldwide and a second smaller group that is specific to the UK.
thank you very much
Thank you Peg, will check it out
Hi my name is Kristine and I live in Flat Rock. Mi. I was recently diagnosed with ET. I just turned 40. Praying for a miracle to get my platelets down. Anyone take tumeric and find it lowered the platelets.
Just a heads up that there is an essential thrombocythemia support group on Facebook with nearly 2000 members with ET worldwide. There is also a second, less active one strictly for those with ET in the UK I’ve got to say that I’ve learned a ton from this group. There’s a lot of sharing going on some about medical some about alternative treatments people are trying
Name: Molly Fox
Age: 18 (17th Arpil 98)
Gender: Female
White British
Hi
I allso have high platelets in m n hydrea. I have all kinds of side effects. I have had aches ,dizzy ,light headed both sides of my ribs in sides hurt. Poops,contapatiton,sick belly. Burnng in pin in needles in numbnss in upper right thigh in upper leg. Over all I’ll feeling.
Origin: Ohio
Sex: female
Age: 22
My name is Cassandra. I was diagnosed with ET when I was 17 years old. When I was diagnosed I was having the symptoms of chest pains, headache, numbness in my arms and legs, and blurred vision. My platelets were over a million and they stayed that way for a year. I was put on 81 mg of aspirin a day to control the platelet count. On April 19 2017, I gave birth to my daughter who had pasted away two days prior to her birth. I was only 33 weeks pregnant when she past and the reason for her passing was because of my ET. During my whole pregnancy I didn’t show any signs of an unhealthy pregnancy. My platelets were down to a normal level and they had me on aspirin for 7 months of my pregnancy. I wanted to know if anyone else has experienced this? Also is it possible for someone with ET to have a baby without there being major complications like this?
Cassandra, I am so very sorry for you on the loss of your baby! No words can I say that will take away any of that pain of loss. I do want to share with you that on Facebook there is a support group for essential thrombocythemia patients that is roughly 3000 strong. I have read of several women Who have had full-term successful pregnancies with ET. Perhaps you could communicate with some of them to find out more of their specifics if that would be helpful.
Sending healing energy to you, Peg
Canada
Female
44, caucasian
I went to the doctor because of continuous headaches. A blood test showed high platelets (831 thousand). CBC showed all normal except for platelet numbers, size and aggregation. I tested + for CALR Type 1 mutation. I finally met with a hemo-oncologist last week, going over the specifics of ET most of which I knew by then from my own research.
My bone marrow aspiration is scheduled in June to confirm diagnosis and hopefully rule out MF or preMF.
Quite a blow mentally. It’s been month now so I’m still in the process of taming this. Physically I feel better as the aspirin took away the headaches. For now by biggest source of discomfort is anxiety. Like now I can’t sleep apprehending the bone marrow procedure in 6 weeks…
I do a lot of hiking and intend to be on the move as much as I can it keeps me calm and motivated. It sure has changed my outlook on life in such a short time frame! I’m grateful to feel the fragility of life while still having the opportunity of hoping for many years ahead of me. It’s odd to feel fragile, and yet so strong!
I’m looking forward to regain a sense of normality with this because it’s so big in my mind right now. Will I ever completety? I suppose it will come in bumps, the bumps the routine CBCs…
Hi Anne Marie,
I’ve forgotten how long I’ve had ET, I was pretty anxious when I first leaned I had ET but after awhile I calmed down and got on with life. Thankfully this disorder is not a death sentence and the prognosis is for most people to lead a normal life with a normal life span. I had the bone marrow aspiration and it was not a big deal. I actually found it really interesting and was asking the doctor a lot of questions during the procedure.
My suggestion is to keep active and eat a healthy diet and to not worry. You should probably be more concerned about the dangers of driving to the doctor.
Mike
I also meant to say that a count of 831 is not that high. That’s about where I’m at and the only thing I take is low dose aspirin. I’m also CALR positive.
I had a bone marrow I have et all I do is take a pill every day keeps my platlets under control keep the faith Laura
I was diagnosed in 2005 I will be 74 this month I have lived through many infections taken different drugs am now on Hydoxyura I now have 2 moderately leaky heart valves right now my cells have low oxygen I still work part time I paint preatty pictures am doing my 27th I hand sew I always have a puzzle going sometimes I have to push myself but have found keeping busy keeps my mind off from this
Hi
I have just been diagnosed with ET. It was a long road to get here, I started feeling unwell in July 2016. Got my diagnosis in Feb 2017. I’m in my late 30’s and feel everyday that this may transform into lukemia. I wish they could find a cure. I just started anagralide and hope my platelets settle down.
Don’t despair. I’ve was diagnosed 17 years I go into routine blood test. There is a online support group on Facebook for people with essential thrombocythemia across the world. It is very comforting to talk to people who have this since it’s such a rare disorder. By the way, I was only up one or two or 3% of these cases migrate to leukemia. I know of at least one woman who had it and did a complete makeover in her life and no longer has any evidence of it in her body. I know of at least one woman who had it and did a complete makeover in her life and no longer has any evidence of it in her body. So keep your chin up.
Hello, my name is Apasra. I am scheduled for JAK2 by 3rd week of June and the Hematologist said that if I tested positive then I will undergo bone marrow biopsy. Is it painful?
My bone marrow biopsy was 17 years ago and it was no fun. According to the people on the Facebook support page for essential thrombocythemia, you can ask for sleep medication sort of like what they use for colonoscopies so you will not be aware of it. If I was going to have another bone marrow biopsy , that’s what I would do
Hi everyone..I was recently diagnosed with ET. My platelets count is now 700,000. I’m living in Philippines. I am now in a stage of acceptance of this blood disorder. Praying and reading this blog gives me comfort because I know i’m not alone. I am now taking Trombocil 2x a day (can’t take baby aspirin because i’m allergic to it).My hematologist asked me to take Hydroxy but i’m scared to take it due to known side effects. Please help me decide..with my recent platelet count, should i take Hydrox now?
Thank you Peg. I still have to wait for the JAK2 mutation assay. I am scheduled to have the test done by June 23. Hopefully it turns out negative.
Hi Lilly, I’m from the Philippines as well. I was recently diagnosed with ET as well and I know how scared you felt knowing that it is a rare disease. I felt the same way too. Let’s just pray that everything will be fine. I suggest you talk to your doctor about taking or not taking the meds, maybe there are alternative options like changing your diet.
I am from phil also. How old are u. And wat do u take. Thanks pls reply
Thanks Apasra. Are you also in medication?
I have et. Wer can i buy cheap anagrelide. Pls help
Name : Sharon
Country: Ireland
Sex: Female
Age: 39 (diagnosed at 37)
Ethnicity: Caucasian
My husband has the disorder to since January of this year his count was over a million he’s taking inferno shots 3times a week his feet r very sore and he aches all over has fatigue very bad.
Name: Gus
Origin: Michigan
Sex: Male
Age: 61
Diagnosed with ET in conjunction with Systematic Mastocytosis in June 2016. Pretty rare combination. Original Platelet Count 650 and WBC 14.6. Presently 231 and 8.1.
Positive for JAK2. Currently taking 2 tablets of Hydrea 4 days a week and 3 tablets on other days.
Diagnosis confirmed via Bone Marrow biopsy and related tests. Won’t lie………extremely painful!!
Symptoms: Fatigue, unexplained bruising, gastrointestinal issues, sensitivity to cold (hands and feet), skin rash. Symptoms could be interchangeable between ET and SM. Have gained considerable weight. Could be related to fatigue and Hydrea?
Good Luck to All!
I forgot to mention that I also take a daily low dose aspirin.
Age 55, ET diagnosis with bmb. Highest platelets 1.1 mil. Currently 629,000 on 500mg. of HU daily and 1000mg. on Friday. MPL mutation and secondary PDGFR mutation. I am in the USA, 100% European heritage
Also on 81mg of aspirin daily
To help your liver, you can also take such drugs as Essentiale Forte http://phospholipids.info/ they help restore and protect the liver from harmful effects.
I was diagnosed this year with ET. I live in Michigan. I am 40. I have been watching my diet. Limiting gluten and no soy. I take supplements to help heal my stomach since I have had issues before I was even diagnosed. It has slowed down since March, but was put on Hydrea over a week ago and platelets went from 956 to 844 in a week.
Hi Kris. I I also live in Michigan and was diagnosed with ET 16 years ago. I totally control my ET by diet, exercise, meditation and attitude, I believe. I am on aspirin only along with supplements and a predominately plant-based raw diet. Just to let you know there is an ET support group on Facebook of about 3000 people worldwide. With ET being so rare, doctors don’t have much experience with it. And you have about 3000 people that share their experiences. I find I am very fortunate I have no symptoms but I attribute it to what I’ve been doing.
Hi Peg,
I have not taken any med for two years now. only occasionally on baby aspirin. my count have go up to 799 and going down to 500.
I’m interested to know what I’m eating cause it to go down as such would love to make a comparison.
I did not do raw diet, just normal diet and trying to increase on vegetables. Only taking supplement such as fish oil, vit C & B. I started raw garlic recently (5 cloves a day).
Can you share with me on how you control your ET with diet?
what type of supplements are you on?
what plant-based raw diet are you taking?
hope to hear from you real soon. Cheers.
Hi peg would like to know more about how do you control diet and what supplement you took to help ET patients thanks
Im 30 years old, female from philippines and was diagnosed with Essential thrombocytosis last year aug. 2016..
I take hydroxyrea and aspirin since i was diagnosed with ET
IS THIS for a lifetime?
Caroline, I am not a doctor, but I do have ET and am JAK2 positive. My hematologist has me on hydroxyurea and baby aspirin and will likely be for a lifetime. I began last October taking 500 mg “Hydroxy” twice a day, however, my dosage has been reduced to 500 mg twice a day – 4days/week and 500 mg once a day for 3days/week. I see my doctor approximately every 3 months. I am doing well, no obvious side effects. I am 68 yrs old and was diagnosed last year, though my platelet count was being monitored for approx. 3 years prior. I hope your symptoms improve. My doctor has encouraged me, saying he has had several patients who have been on this regimen for many years and continued to have a normal, healthy life. I hope you find this to be true. We are not alone in this…enjoy each day to the fullest. There are no guarantees in life, but a positive attitude always helps!
hi caroline. i am also from the philippines. i live in caloocan. i am just 29 y.o. do u have kids already?
hi. iam from the philippines also. wer r u from. iam 29 y.0
Hello, 55 year old female, diagnosis February 2017. Bone marrow biopsy. ET, MPL positive, secondary PDGFR mutation. Platelets near 1 mil, started Hu may 4. 500mg. daily at first, platelets slowly reduced, added 1 500mg. dose of hi on Friday’s….At last check, platelet normal 477,000. Dosage reduced to 3 days a week. Monday Wednesday Friday…I am moderate risk. Hemotologist, said as long as platelets hover near 600~700 he is not concerned. Best of luck
Do any of you know if it is safe to fly with high count I am afraid of blod clots
I’m also in my 30’s and have been diagnosed with ET. I am from the US, female, 34, Caucasian.
Hi my name is Barbara,and I was diagnosed with ET 8 months ago.I felt totally fine, no symptoms at all! I had a blood test taken, by my gp and they said my platelets were over a million, They sent me to a Hemotolist. Took a bone marrow biopsy. They put me on Hyrea, My life went down hill from there. Yes it lowered my platelets, but it lowered everything else also! My hemoglobin went down to a 5.6! I needed 2 blood transfusions! Doc took me off of Hydera for about a month. Now I’m back on it which I hate! I only take 2 a week now 500 mg. I feel ok but my immune system is terrible! I wish there was a cure for this horrible disease! By the way i am 58 when diagnosed.
I’m on 1000 mg oh hydrea every other day in 500 mg in between. My platelets or 6in 7000. But the side effects has been bad. Liver enlarged poops contapated ribs hurt headaches sweating itching. But my Dr says the good out ways the bad. Tired all the time in have trouble staying asleep. Anyone else have hese problem??? Would love to here from everyone. Thank you.
I was diagnosed in August 2015 I’m 61 I’m on 1500 mg daily hydroxycarbamide aspirin and clopidogrel and allopurinol
Also v k penicillin as I had a splenectomy
I had a recent TIA yes I can’t sleep through I always wake up but tired daily
I’ve had two DVT s and passed blood in urine to I also have joint problems with this it’s not great
I have been diagnosed with ET for about 4.5 years. My Platlets were over 1,500. I have been on various amounts of Hydroxeria since then. Had a bone marrow biopsy which showed I had ET. I have been on 1000/500, 1000 every day and 1,500/1,000. I am now on 1,500 every day as my platelets suddenly spiked. I take it before I go to bed with toast and use 1/4 of a Percocet to deal with nausea, fatigue, mind clarity and sore stomach up to 4 times a day. it works and I sleep through the side effects. I lead a relatively normal life but would not if I did not use the tiny amount of Percocet I do. A friend takes the Hydroxeria in the morning and struggles all day. Have not tried anything else but this seems to work most of the time.
Hi I’m so happy you were able to overcome this unique disease . My kid sister was diagnose with polycythemia Vera plus Jack 2 Mutation, are they in any way linked. She develops so many blood clots, has been hospitalized on numerous occasions and may now have to have a liver transplant, please help i,don’t want to lose her. Thanks
I was given a prescription to have this year as my end is high, I’m also a stage 4a cancer survivor. The test is not covered by insurance. I have no idea what to do now.
I have plan with my wife to have a child
(a son or daughter).
I’m on Anagrelide drug.
I’m not sure that anagrelide damage my sperms or DNA in sperms.
Does anyone know that should I change my drug to Interferon alpha or other drug.?
I was first diagnosed with high platelets in 2006 at age 36 and received an official diagnosis of ET (triple negative) in December 2016 after various blood tests and a bone marrow biopsy. Platelets average around 770 and I only take 100mg of pycnogenol daily – I cannot take aspirin. Platelet count has increased to 960 at last haem visit and I am now on 2 monthly visits to keep an eye on it. I am UK born – dad was hungarian, mom austrian, sex is female, ethnicity is white european and age is now 47.
Country : Malaysia
Sex: Female
Age:24
Ethnicity: Malay
I’m hidayah. I diagnosed with ET since 2015. My platelets count 600,000 to 750,00. I meet doctor only 2 times annually. No medicine given. But sometimes I feel hard to breathe. Can you give me suggestion what should I do.?
First thing is to get a new DAMM doctor and get on some meds,…PLEASE
my count is between 600k to 750k as well. I stop taking med as I don’t like the side effect. I don’t have difficulty breathing.
I was just diagnosed with Mylefibrosis last year. It is sort of the same thing you have. I have been on hydroxurea over a year and lately am feeling pretty crappy but my blood has stabalized. I have bone marrow cancer, non curable. I am almost 75 and am too old for a bone marrow tranplant. I suffer alot from hot flashes and back pain; Am always tired, no energy.
United States White 67 year old Female.
Diagnosed 2+ years ago. Was put on Hydurea and then Anegrilide. Still on Anegrilide for 1+ years so far. Platlets are 292 as of this month and it has been in that range before. Never over 697k while taking Anegrilide. Recently experiencing anxiety, delusions, hallucinations. Currently diagnosed with Primary Progresssive Asphasia after starting meds. Thinking of gradually stopping all medications. Current protocol isn’t working.
United States White 63 year old Female. Is there anyone who has stopped Angelide and how did you do that?
Country of origin:. My Grandfather was from Austria
Sex:. Female
Age:. 59
Ethnicity:. Caucasian
I live in Seattle, WA.
I was diagnosed about 15 years ago.
My recent platelet count was almost 700, it keeps creeping up higher and higher.
If like to add that my 1st Dr had me on medication.
He retired and my new Dr took me off. I’ve been off medication for about 10 years now. That Dr did even order blood test! Got rid of him!
I have a new Dr now and she is good.
country of origin England
female
64
white
I live in Doncaster I was diagnosed about 10 years ago it was picked up through regular blood tests though i asked what was happening when they started to be every 3 months. diagnosed through a bone marrow biopsy. platelets up and down on clopdogrel and occasionally Hydroxycarbomide. couldn’t function when on the Hydroxy eventually persuaded my doctor to try anagrelide within 6 weeks my platelet count was normal
Essential Thrombocytosis since 2002 onwards but diagnosed in 2011, Indian, 51, Mumbai India.
Female concassian fron Ontario Canada..diagnose at 48
Hallo.. I was diagnosed with ET in 2016 with a platelet count of 500k. I was admitted to hospital due to a severe migraine. While in hospital, I lost strength on my left leg and was given steroids for 3 months to gain back my strength. To date, my platelet count is 877k and have been advised to start hydrea. I am still deciding if I should start. Is this a lifelong medication? I’ll be turning 41 this year from S’pore and been on aspirin since I was diagnosed with ET. Any advice is much appreciated. Thank you.
Hi Serene, I am a 67yo from UT, USA. I was diagnosed September 2016 with JAK2 mutation and have been on Hydroxyurea (hydrea) since that time. I have responded well with it and my platelets have been within normal range, since shortly after starting. I also take a baby aspirin daily. My hematologist/oncologist follows up with lab work every 3 months and everything has been going well. So well, in fact, that I do not have to see him now for 6 months. I do know, that unless something happens new in the medical field regarding treatment, this will be a life long commitment. My doctor is very encouraging though, as this drug is also the standard care for children with sickle-cell anemia and they take it long term, as well. Since you did not indicate whether your ET is related to any genetic mutation, I cannot address that, but in regards to taking hydrea, this might be beneficial information for you. Wishing you well…you are not alone. This is not a death sentence…take courage.
Thanks Carole for the detailed explanation… yes mine was a result of genetic mutation. Encouraged by your sharing. Keep well too.
Hi Serene, could it be inflammation or infection causes the count to shoot up?
hallo.. Thanks Carole for the encouragement and explanation. And yes, I believe I am more than a conqueror and we all are.. we need to stay positive.
Hi Will, I’m not too sure about being infected cos the doctor did not mention anything about it. However, I have decided to start my hydrea soon to manage this condition. I have started exercising and eating healthy. Stay strong, everyone.
32 year old female, from USA but lived in Africa, the Caribbean and Europe. I was diagnosed when I was 24. My platelets are 1333. I also have a Jak2 mutation. I took Hydrea, but it didn’t work and I switched to xagrid. Then I took a break for a long time. Now I am back trying Hydrea. I also take a low dose aspirin daily. I recently starting seeing a Chines Medicine Doctor. It has been 8 years. I have tried diet changes and lots of natural things, so far nothing has worked…
Jessica,
You might want to consider googling Nattokinase which is a natural product that has the effect of reducing clotting by reducing iPhone in the blood. My platelets dropped by 100,000 after taking it for a week. It is also been used to dissolve blood clots in dogs. Pretty interesting. What type of Chinese medicine did you try?
Thank you for the recommendation about Nattokinase. I did read about it and will keep it in mind for the future. I have been taking so many different and natural things for so long that for the moment I want to take a break from new things.
The Chinese doctor I am currently seeing says all my organs and functions are good. We do accupuncture twice a week and I am take a Chinese herbal supplement. His recommendation is more Chi Quong because my Chi is stagnant. I am going to give it a try… I have tried SO many other things that have not worked. This is simple, and obvious, enough that it just might work! I go to the doctor in another week or two and will see if there has been any change. The results, however, will be jaded because I am taking Hydrea now.
Jessica, I just responded to Serene, the post just prior to yours on this blog. You may find it encouraging. Will be interested to know of your progress.
Hi Carol,
Yes, your experiences sound similar to mine. I have been taking the baby aspirin for the last 8 years. I started taking Hydrea for the first time 4 years ago. It does work to keep my platelets low, but I just don’t want to take it for the rest of forever. I keep seeing natural paths that will allow me to not take the Hydrea. So far I have not had success…. but I will keep on my mission. 🙂
I’m female aged 44 from Ireland ,diagnosed with ET and JAK 2 mutation 2 years ago
hi im aniza, in my country i suffered with this essential thrombocythemia and refer to hematologist, so sad im still have no improvement, they given me aspirin 100mg, now i felt like hopeless n nobody help me..feel sad..im on my own.. my platelets count 1.5millions…
Aniza, you did not share where you are from, but am praying you will get some support from your hematologist and most of all, not feel alone. i understand the guidelines for treatment and resources vary from country to country, as well as risk factors may vary, according to age, other health risk factors, including diet, weight, general fitness, etc. Having a hopeful, positive attitude, is always beneficial in dealing with life’s challenges…whatever that may be. lifting you up…you are not alone.
Hi Aniza! You’re not alone. At first you feel hopeless, it’s true. But it’s something in your body you end up learning to live with. In my experience, it helped me to set the priorities of my life differently. I hope your treatment start to show results!! Big hug from Argentina.
Hi Aniza! you are not alone. I very much agree with Luciano, I felt the same even though my family know about it. Drink sufficient plain water and eat healthy, it will help in not getting the blood clot too easily.
Hi Aniza.. stay strong. At times, I do feel discouraged especially after every blood test results show platelets are increasing. I will be starting my Hydrea in June… I believe that it will help stabilise the platelets. As I have a pre-existing heart condition, the doctor is always very cautious in giving ‘false hopes’. Always remember a positive attitude is important.. we can feel discouraged but we will not be defeated by ET. Stay strong. Will be praying for all of us here. Cheers!
Hi, I’m Luciano (38), I live in Buenos Aires, Argentina and was diagnosed with ET and JAK 2 about 2 years ago. I’m taking baby aspiring every day and my platelet count is stable around 1 million. No symptoms of any kind so far, just regular visits to the hemathologist.
My name is Samantha im 28 was diagnosed at 20 platelet count over 2 million. Taken Hydreaxua and anegrelide with aspirin. Made me sick haven’t taken any blood thinners in 4 years. Don’t know what else to do about situation.
I also have ET + Jak2 positive I am almost 2 years in taking aspirin as well as hydroxyurea. & I wish to get pregnant but was told their would be too much complications towards that. I’m in denial and think their could be a way. If it’s not considered full term cancer why is it treated with cancer pills? Question unknown. I want answers & my hematologist Told me I had to be on this for the rest of my life(pills) I take 500mg + aspirin on top of having such a busy schedule I do want to live pass this and be able
To live a worry free life. Is this possible, it’s their a cure? My playlets never are normal it’s gotten over a million at times dropped to 800,000 but never was it at its normal ranged which is 150,000-450,000. Answers?
56 yr old female, Va. Beach, VA, USA. Diagnosed with ET in 2010 with little to no side effects until June 2018, started on Hydroxyurea Diagnosed with Von Willebrand Disease as well.
I’m ninety years old an was diagnoised at age 75 wth et. I do hydroxyuria every day. I now have stage 4 kidney disease. I’m at 25 in my blood test for the kidney. I feel fine bowl 3 times a week. We don’t live forever you know.
Hi, my name is sally from the uk, i visited my gp around 6year ago and had a blood test for which showed my platelet count to be elevated around 650, i was 42 at the time, i had countless blood tests, scans xrays ect, because they thought it was underlying health problem, cyst on ovary and arthritis in my spine was diagnosed but nothing to show why my platelets where high, i even had a bone marriw biopsy, they said it didnt show thst my marrow was producing this high count and was discharged from the heamotologist, however 4 year later i was in hospital for another reason, and another blood test showed my platelet count was higher than it was years before, again i was back at the heamoyologist and again another bone marrow biopsy and bone biopsy which then showed my marrow was in fact producing too many platelets. Now my platelet count has slowly elevated over time, they are now at around 950.000, there isnt a lot of information on this, so im not sure what is going to happen over the next few years, i am currently taking aspirin every day but nothing else, i know theres no cure, and i know it is a slow growing blood cancer, it worries me where i will be at with this in not too distant future, which is really worrying.
Hi Sally,
I’m Will from Malaysia.
Find some routines/activities/diet that will help make your blood “thinner”/spread apart/not stick together in a microscopic level, if that make sense. stay positive and affirm yourself with positive command/statements everyday.
what I did was also walking barefoot if I have the opportunity or you could get some earthing sleeping mate.
Not sure why are you not on any medication but a million counts was a lot. maybe you would like to get a second opinion.
I’m Gin from Trinidad and Tobago, recently diagnosed, I’m happy to find personswho share the same experience as myself.
I have recently diagnosed with ET , Carl mutation , I am 42 yo male very healthy, my current platelets count is 1000000 , the doctor just prescribed me hydroxyurea 500 mg , no symptoms at the moment , just depressed with the new .
George, I started with hidroxyurea 500 mg plus aspirin 81 , last month and platelets count dropped from 160000 to 680 , I don’t have any symptoms, I have Carl mutation, I am a athlete and feel fine, doctor said that I can live a long life with this condition, have to check my blood every month, I am 42 yo man from Miami USA , good luck everyone
I’m 36 and was diagnosed about 6 months ago I also went through alot of testing and sent to Oncology who then told me what my diagnosis was. I have severe fatigue headaches and high crp levels. I’m still learning about this disease and how to deal with it. I currently go once a month for lab work but no medication. I’m a female located it the united States.
plant of nature extract
Icing with ET since 2005. On Hydroxurea alternating 1000/500 days. Always excessives sweating, leg and joint pain and tire easily. If I work in the garden , the next day I pay for it dearly. I used to be a non stop person, now sometimes feel like a vegetable. I am also struggling from extreme back pain from childhood which doesn’t help. I wish this blood cancer on no one.
Hi I’m also on Peginterferon for high platelets and so many side effects and I also notice my skin with no colour very yellowish And sleeping so much and sick to stomach headaches no energy I live on a farm where work is never done and my husband is a long haul trucker which isn’t home , I can’t take much more of this drug or of living with way , Malvena McKinnon
I take hydroxyurea which the side effects are not that bad right now I take 500 mg one a day and three extra pills a week right now I have no side effects as of today maybe you could try this pne