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 garyr443 @garyr443

In my case, a month of substituting cranberry juice for Hydroxyurea (another name for Hydrea) resulted in my platelet count increasing. So, I have gone back to Hydroxyurea. I can't say whether cranberry juice might work for others, though. I just don't know.

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@garyr443 I am sorry your experiment with cranberry juice didn’t work out the way you wanted. You did inspire me! I am still trying to consume fruit with Vit C in the hopes of reducing inflammation which I hope will indirectly help my platelets stay at a healthy level.

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Yep, I had to try, though. There was plenty of information out there saying it would work, but....

There are foods that can reduce inflammation. Some of them make my platelet count rise, though. Others tell me this doesn't happen, but not in my personal experience. Good luck, either way!

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Profile picture for 1995victoria @1995victoria

@garyr443 I notice my platelets over normal range for 3 years (my annual blood test result), when I asked my primary why, he sent me to hematologist who did all the tests, but didn't answer my questions so I went to MemorialSloanKettering in NYC. And I've been on hydroxyurea for 6 years now......I don't know why my primary didn't seem to notice, but I think ET is a rare cancer, so maybe elevated platelets isn't such a critical symptom, except for someone with ET. I've found the LLS (LeukemiaLymphomaSociety) now Blood Cancer United to be a valuable source of information for MPNs......take care, stay well.....

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@1995victoria Yep, there seems to be a lot of variation in the knowledge of ET and how to treat it. Some of the people on Mayo Clinic Connect have far higher platelet counts than I have had with treatment. When I was first treated, the goal was to get my platelet count below 400,000 and my hematologist says he prefers to see it at around the 300,000s, as long as it's below 400,000.

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My platelets went down 400 and my red cells were slightly low with me taking nothing in 2/2025. My O/H changed my diagnosis from ET 1/2025 to primary myelofibrosis 2/2025 then. I felt no differently than ever, continued to take nothing but low dose aspirin, and did another lab 5/2025 that showed my platelets were back up almost the 400 they had decreased and my red cells back to normal. For an explanation, I was told “labs fluctuate”. I recently did another lab that shows my usual high platelets, normal red cells, and slightly high white cells.
So, from my experience which may be unique to me, I would say yes, platelets can go down on their own. In my case, when they did, instead of it being what I thought would be a good thing, that O/H just thought I was transitioning to something worse.

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Not in my experience. I also tried cranberry juice instead of Hydroxyurea, for a month. My platelet count actually rose instead of staying normal, where it was when I started. Another question I wanted an answer to was whether or not white cells would be reduced or elevated. I had read conflicting information on that. Turned out it raised my white cells instead of lowering them.

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Profile picture for garyr443 @garyr443

Frankly, I can't believe your doctor hasn't already prescribed Hydrea (Hydroxyurea). When my hematologist first prescribed Hydroxyurea for me, the objective was to keep my platelet count below 400,000.

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@garyr443 Hi! Do you mind sharing how long have you been taking HU? Any side effects? Thank you

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Profile picture for asindelar @asindelar

@garyr443 Hi! Do you mind sharing how long have you been taking HU? Any side effects? Thank you

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@asindelar 12 years, which I've mentioned here....somewhere, before. Side effects? It assassinates some of my red cells. That was my main motivation for my cranberry juice experiment last month. I figured that, if the cranberry juice could lower my platelet count, I wouldn't need the HU, since that's all it really does. Then my red cells could rise to normal without the side effect of the HU. Didn't quite work out that way, though. My platelet count increased and, though my red cells did, too, they didn't really improve as much as I expected they would. Oh, well. Had to try it to find out if it would work. Now I'm back on the HU.

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Profile picture for sanlee7 @sanlee7

I was told that the platelets will not lower on their own. I take HD and I was over a million in count, but with Hd they have lowered to 600k. The only side effect I have had is low energy and that is the most complaint.

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@sanlee7 if that's your only side effect, you're doing well. That could relate to Hydroxyurea's destruction of some of your red cells, which is a side effect of HU.

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Profile picture for sanlee7 @sanlee7

I was told that the platelets will not lower on their own. I take HD and I was over a million in count, but with Hd they have lowered to 600k. The only side effect I have had is low energy and that is the most complaint.

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@sanlee7 I have to say, that's not much of an improvement at all. Like you, when I began treatment with Hydroxyurea (500mg), my platelet count was in the millions. That was back in 2014. But, after getting the dosage adjusted, the Hydroxyurea has (most of the time) kept my platelet count below 400,000. The frequency at which you take it is just as important as the set dosage per pill. My hematologist had to experienent for months, but we finally arrived at one a day for two consecutive days, followed by one day at 2 doses, then back to 1. So, 1, 1, 2, 1, 1, 2, etc. As I said, this works most of the time, but some dietary changes I've made have sent my platelet count soaring, now and then. Changes like eating pink salmon and tuna and cheddar cheese. The doctors and nutritionists who recommend these foods with Omega 3 fatty acids think everyone is the same.

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I specifically asked my doctor about cranberry juice. He said, no, it will not help with platelet levels.

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