I am a 44yr old woman and was diagnosed in February 2020 with essential thrombocythemia even though my bone marrow test and bloodwork said otherwise and no sign of MPN per the pathology report. Due to my high platelets my dr has started to treat me with hydroxyurea 500mg once daily for ET.
On my last visit my platelets were still up even higher than before I started taking meds. My right leg and foot is swollen and has done this before anytime I travel. It’s very painful, I guess my questions is does anyone else see this ? I have pain and swelling only on right side and some numbness in my face on right side . Dr doesn’t seem concerned and said it’s not related. My mind and body tells me “not to let it go” something is wrong.
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Beths3
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Can you get a second opinion? You don't technically meet the criteria to be diagnosed with ET if your bone marrow was normal. Have they ruled out other causes of a high platelet count?
He never mentioned any other causes and told me he feels even though bone marrow biopsy and bloodwork doesn’t show what he wanted he feels this is what it is . I’ve had high platelets for years and my GP always told me she wasn’t sure what it was but she knew something was wrong . In November 2019 I had a issue while in LA and when I flew home to Kentucky my gp ordered bloodwork my count was high 900 and she referred me to the oncologist and here I am . I know it all sounds like a circle of nobody knows ?!? I am concerned I’m being misdiagnosed and the real problem is still there . The hydroxyurea has never brought my platelets down since starting in March. Very stressful! I seen this site and thought I would ask questions . Thank you 😊
It must be very frustrating for you. It would be advisable for you to be referred to an MPN Specialist.
Presumably, you have been tested for all the following mutations: Jak2, CalR, MPL. However, you can still have an MPN and be triple negative.
Is your Primary Care Physician being guided by the Oncologist/Haematologist you consulted with in regards to your current treatment? It maybe that the hydrea needs increasing further to see some positive results.
Take a look at MPN Voice (UK) and Patient Power (USA).
Totally agree. I wouldn't be happy if Dr is letting these side effects go. It can't do any harm to ask for a second opinion. Don't give up and good luck.
I would request to see a second Oncologist or a Haemotologist. It's fairly common for people in the group to do this as MPNs are rare & not all Dr's are knowledgeable in them. If your bloodwork & Bone Marrow Biopsy do not confirm it then it's a very big red flag that you don't have an MPN. You can be diagnosed without a Bone Marrow Biopsy but it would be based on very clear blood work showing MPN. The fact that you are on meds for something that it probably isn't is concerning although it can take a while for the meds to bring down counts. Your Dr is going against the WHO criteria for diagnosis which states that there should be evidence in your bone marrow.
I'm assuming that your healthcare if being covered by your heathcare insurance, if you can't get a referral for a second opinion through your GP I would talk with your insurance provider as they are potentially paying for meds that aren't going to help.
I would print out the diagnostic criteria for determining ET and show it to your GP & ask them if they think you meet it based on your results & also show it to the insurance company if no joy.
Don't be afraid to challenge the results & treatment, most in this forum will tell you that you have to be an advocate for your own health & treatment.
My platelets were around 1000 at first diagnosis, 500mg HU would not bring the number down but 2x500mg a day did!! I tolerate HU well and also 600-700 platelet count is OK for me. I vary the dosage according to how I feel, 10x500mg per week but now I have gone back to 14x500mg per week because of some mild symptoms the cause of which I am not sure about.
Hi Beth they must have seen something in your blood tests you don’t necessarily show up in bone marrow biopsy
I started with PV in 2013 while I worked at Airbus with chemicals I had so many blood tests but nothing shown up
In the November my spleen was enlarged and I had my first bone marrow biopsy it was negative
Then I was transferred to Manchester royal under Dr Ryan a leading Haematolygist she repeated the tests and bone marrow biopsy still all negative
In May my spleen was so big when out cycling I couldn’t walk after it was pushing down into my lower stomach
They removed it on June 6 in 2014
My platelets was normal to then
They thought they had cured me at this point but it was the start of a nightmare 14 months
I started with blurred vision my platelets was 550 then in October 970 in January I was dismissed for a 12 month appointment
Then in March I had an angina attack and later that month a Haematoma
Then my GP did a blood test in June my platelets was still round 900 I was referred to Bolton Haematolygist she did a blood test which came back Jak2 positive and started on hydroxycarbamide same day
I wrote to Dr Ryan to ask why it was never picked up she said it was the first time ever she had come across this and it was a valuable lesson to learn
I’m under Christies now diagnosed with 50/50 ET & PV
While it is possible that you have triple negative ET, it could well be a secondary thrombocytosis. The swelling you describe is very concerning, but could be from multiple causes. The numbness is likewise a concern and could have multiple causes. I would wonder about a peripheral nerve issues, but you need to talk to a competent neurologist about that. Regarding the thrombocytosis of undetermined origin, you need to talk to a MPN-Specialist, not a PCP or reven a regular hematologist. Here is a list a patient-recommended docs with MPN expertise. There are several in Lexington. mpnforum.com/list-hem./
There is some clue in when the swelling in your leg occurs. This needs to be followed up to determine its cause. I would suspect that the leg swelling and the thrombocytosis are related. Could be thrombosis. Or it could be something else like peripheral edema or lymphedema. There is no way to know until you get a proper diagnosis. Please do follow up ASAP with a doc with the proper expertise to help you figure out what is going on. While many people tolerate hydroxyurea and benefit, it is a toxic medication and not something to take if it is not the correct medication for your condition. The risks are too high unless there is a therapeutic benefit.
Welcome. Are you in the uk? If so I’d go to a and . Regarding your hydroxi meds not working - don’t worry they start you off on the lowest dose and adjust accordingly.
Thank you all for the feedback it’s so nice to talk to people who understand what I’m actually talking about . I literally have tears in my eyes. I’ve been so frustrated. I see my oncologist/hematologist tomorrow and I’m going to address my concerns. It’s all so hard to put together, like a puzzle. Again thank you for the feedback!
It is always so difficult to know what is causing what symptom and it may take some time for Hydroxy to reduce platelet levels. There appears to be so many strange side affects and numbness and pain appear to be fairly common. Take care and keep asking questions.
Hi Beth. Sorry to hear you are suffering side effects of ET and/or hydroxuria.
I was diagnosed with ET in 2004 and took hydroxuria until 2012. My platelet count was about 800 in 2004 and dropped into the normal range by 2012. It’s been normal since.
My hydroxuria side effect was a foggy brain. It affected my work as an IT manager / project developer. The fogginess went away within six months of stopping hydroxuria. Fortunately, I feel good and I don’t feel ill effects from ET. My RBC and hemoglobin counts are lower than they should be but other blood counts are in the normal range. I take two 500mg of flush free vitamin B3, two 65mg iron, 1000mg B12 and 81mg baby aspirin each day. I also take a monthly B12 shot.
I hope and pray that you begin feeling better and overcome ET. I hope my experience helps you.
I seen a hematologists a different dr from my regular oncologist on Thursday and she said the hydroxyurea is working my platelets are down to 550. Doppler on leg showed no clot. She told me my leg pain and swelling would eventually go away it’s just side effects of having bad circulation. I see her again in six weeks . Guess I will go with the flow and try to adjust my life until I feel normal again. If there is a normal after ET diagnosis. I’m positive I will find it 😁
Hello ....I have ET ..Jak 2 ...diagnosed 2016.....since last October I have swollen right hand ...fingers numb ..pain in knees and shoulders ...wrists ...I am woken around 4am with such knee and leg pain ..been told I have rheumatoid arthritis.....also told about the overproduction of cytokines people with MPN suffer from ....I believe the latter but have only recently been informed by my new haemo.....that a higher dose of hydroxy will help me ....as he thinks my platelet count is too high ....my other haemo told me only May 2020......my platelet count was perfect ..........aargh......I started a higher dose this week and feel soo ill but he said to give it a couple of weeks before I see a change ( for the better I prey) I so hope this will help as the medication for arthritis has horrendous side effects .....also bad news for blood conditions..... I will get back to you next week when hopefully the pain is at least bearable ....and that perhaps hydroxy can help with inflammation.......best wishes to all ...xxx
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