Essential Thrombocytosis: Do platelets ever decrease without meds?

Posted by sunnylane @sunnylane, Jun 29 7:52pm

I am 72 and have essential thrombocytosis, calreticulin positive, asymptomatic with a platelet count of 848. If it goes much higher doctor will prescribe Hydrea. I have been taking 720 mg of 100% allicin garlic and platelet levels have remained under 900. I just started to drink 100% pure cranberry juice, because I read that it will reduce platelet levels. I read that Hydrea has a lot of bad side effects. Questions: Will my platelet levels ever decrease on their own without medication? Are there any other things I should try to reduce my platelets? How did the error in mutations occur to cause platelets to increase? Thanks!

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Profile picture for sanlee7 @sanlee7

It will not lower without meds…I tried not to take and my count went over one million! I have been on the HD for a few months and it’s now down to 650k. The only side effects is that it lowers your energy level. Well worth not having a stroke!

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@sanlee7 HU did not bring down my platelets I took it for 3 years platelets kept going up. Changed doctors was taken off HU 2 months ago and put on Anagrelide, platelets are now 920. I see Dr on Oct 27th said I will probably have to take Besremi shots to get platelets down.

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Profile picture for nohrt4me (Jean) @nohrt4me

@mmkennedy Yes, that's my understanding. My dad had ET and his platelets began to drop spontaneously very fast a few months before he died. The hospice nurse suspected he was progressing to myelofibrosis, but at that point he was on his way out with COPD, so they weren't really worried about MF at that point.

When I was first diagnosed, my hemo told me that a first sign of progression to MF was a significant, continuing drop in platelets.

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Hi @nohrt4me ,
Somehow, I did not read your message about that when you posted it a few months ago. It was very interesting what you shared about your dad’s experience.
On my bone marrow biopsy day on immediate stat blood work after it in 2/2025, I know my platelets did drop 400 on their own with me taking nothing and doing nothing differently. That is when that oncologist/hematologist thought I was transitioning to overt myelofibrosis. I doubted that as I felt just fine and the same way I always feel to this day and just did another lab a few months later which showed my high platelets again. My red cells, hemoglobin, are normal and white cells fluctuate but always slightly higher than normal. I still have high platelets and other values consistent on all my subsequent labs and that is just fine with me as I do not care to ever have overt myelofibrosis! Because all the current approved meds available lower all blood cells, I choose not to take any of them. That is just my opinion. The only risk factor I have for a blood clot is my age of 67 which in my opinion should not be an immediate reason to put a patient on a medication. I will take low dose aspirin. That is just my opinion.

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Profile picture for mea73 @mea73

I was diagnosed with ET after I was hospitalized with bilateral pulmonary embolisms. When I was hospitalized my platelet count was 659, I’m taking HU and the platelet count was 459 on the latest blood draw. It’s scary to know I could had a stroke or died. The HU is working and I’m grateful.

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Hi @mea73 Being hospitalize for bilateral pulmonary embolisms had to be quite a frightening experience for you! I’m so glad to see this had a happy outcome and that HU is working well to bring your platelet level down to a more normal level.
How long have you been taking the hydroxyurea?

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I believe platelets can drop without medication. However, that requires an almost psychic awareness of what works and what is counterproductive. I saw an alternative provider who gave me a very strict protocol similar to the Gerson therapy. I stayed on it for one year. My platelets normalized and were in the 300’s. But I stopped doing the diet partially, so now I’m approaching 600. I can’t afford that Lady anymore so I will need to do it myself. She recommended things like “eat buckwheat.” Apparently the Rutin in buckwheat can help lower platelets. Most of my diet was lots of vegetables, zero sugar (but stevia and monk fruit powder were okay). Yes. I did the juicing and one coffee enema per day during that year. It was basically a cancer diet (Gerson type) but modified for my system. I am going to try getting Besremi because in some cases it has been shown to reduce the JAK2 mutation (which I have) to the point doctors cannot detect it. I am also returning to the diet but without the juicing and enemas.

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