Essential Thrombocytosis: Do platelets ever decrease without meds?

@nohrt4me True. I've been on HU for 12 years and have never had a clot. My mutation is CALR Exon 9.

@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.....

I think that dosages are different. Depending on the Doctor i started on 500 daily I noticed that some people start on the 3 days a week 1 pill. And others start at 2 pills a daily. Guess it has to do with the platelets mine never got over 700 at the most. So I told her that sometime I all of a sudden felt like I could take another step that is why she changed mine. I do have more energy but every time I go numbers go up went from 286 to 293 have a appointment for blood draw this week hope they will hold at this number.
Good Luck to you

@1995victoria ET is a blood cancer. Not sure how rare it is. There are a few mutations that can cause it. In my case, it's the CALR Exon 9 mutation (without the JAK2 component). When I was first diagnosed, I was told by my hematologist that the JAK2 component would mean leukemia. Fortunately, I dodged that bullet, but I have since learned that those of us who have ET can eventually wind up with leukemia. One thing I have discovered is that my life expectancy with ET and Hydroxyurea is 86 years, which is exactly the same as my life expectancy based only upon my age (73 at my birthday last year) and sex (M). I'll see the update to this in October when I turn 74.

@vickieannb57 Right. Dosage seems to vary widely with who your doctor is. There probably should be more standardization to this, but each practioner is dealing with various differences in their patients. I've been told I'm an unusual patient and that I tolerate the Hydroxyurea better than my hematologist's other ET patients.

I have read about the possible effects of garlic on platelet count. I haven't tried it, though. I do know it has been proven effective to reduce bloodpressure and protect the heart. I tried a one-month trial of unsweetened cranberry juice, expecting it might lower my platelet count, but without the Hydroxurea for a month, my platelet count rose, instead. The cranberry juice is almost as effective as Lisinopril in lowering bloodpressure, though. I have beaten Type 2 Diabetes via the paleo diet for 13 years altogether, so food is effective, especially for dietary conditions like Type 2 Diabetes. It does nothing for my ET, of course. Getting back to cranberry juice, there is conflicting data on that and platelet count.

I have ET with Jak2, told I have "normal" life expectancyI could progress to PV or MF.....they are major sub cats under MPNsI'm keeping my fingers crossed that I stick with ET and don't make any progress to the others.....I think all the MPNs are under LeukemiaLymphoma category
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@1995victoria ET is a blood cancer. Not sure how rare it is. There are a few mutations that can cause it. In my case, it's the CALR Exon 9 mutation (without the JAK2 component). When I was first diagnosed, I was told by my hematologist that the JAK2 component would mean leukemia. Fortunately, I dodged that bullet, but I have since learned that those of us who have ET can eventually wind up with leukemia. One thing I have discovered is that my life expectancy with ET and Hydroxyurea is 86 years, which is exactly the same as my life expectancy based only upon my age (73 at my birthday last year) and sex (M). I'll see the update to this in October when I turn 74.
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@1995victoria Yep, me, too (not progressing to anything worse). 86 is fine with me. I don't think I want to be 90. Having always looked younger than I am, though, by then I would probably begin to look 80. Currently, I've begun to be taken for 60. When I was 64, people thought I was 35! I'm just glad I got out of my 20s and 30s, when people thought I was a teenager!

@garyr443
ET affects approximately 1 to 24 individuals per million globally.
In the United States, the incidence is estimated at 0.6 to 2.5 cases per 100,000 people annually.
The condition is more commonly diagnosed in adults, particularly those around 60 years old, but it can also occur in younger individuals.

This rarity contributes to challenges in diagnosis and treatment, as many healthcare providers may not be familiar with the condition

I have ET with the MPL mutation. I've read that the mutations are due to environmental exposures from a variety of known and unknown exposures (e.g. x-rays, chemicals, et cetera). My platelets were high for the past 25 plus years and I was on active watch but nothing was done until the count started increasing to the high 600's then 700's to 800s and high 900's, They were relatively steady for much of that time in my 30's to my 50"s. But now at 64 suddenly they are a problem where in a few months they jumped from mid 700's to 981.

I was having alot of symptoms that were related to ET that I wasn't aware were caused by it. I was incredibly lethargic and could not get myself going and I 'd wake up with very bad headaches that debilitated me for much of the day. I didn't understand why this was happening; was I not drinking enough water? Was I depressed (causing the lack of energy)?

After getting put on Hydrea, my platelets started dropping, I regained energy and wasn't having headaches as much. So hydrea was liberating for me. With hydrea, I notice that I need to drink more water, my skin always feels very dry. I am also taking iron and I don't know if it is just the iron or maybe the Hydrea also - give me constipatio which I have to manage. My first hematologist told me that no food can help to reduce my platelets as I had read that blueberries could help reduce platelets - but after hearing that, I dropped the effort.

Good luck to you