Essential Thrombocythemia (ET): foods, diet, nutrition?

Similar to you, I was diagnosed based on blood work, not symptoms. Platelets were a bit elevated as far back as 2008 when they were 403 (so just a tad over normal and they continued at this general level until 2015, when they were 500, so a referral was made at that time. Additional bloodwork confirmed JAK2. I did not originally get a BMB, but ET was the diagnosis. I did get a BMB last year, which did reflect a likely ET diagnosis.

I haven't substantially changed my diet. My diet has generally included lost of fruits and vegetables, almost no processed foods, and limited red meat. I likely should decrease my sugar intake, but I do have a bit of a sweet tooth. Sugar is supposed to trigger inflammation, so I have reduced this, but just can't eliminate it! No supplements other than vitamin D.

so you’ve had it a while? Whose window is she at? and overall your health sounds very well?

Had my first dose of HU 500mg today. Doctor said my bone marrow biopsy showed no scarring, everything she suspected normal except platelets were 676. She says she doesn’t expect any problems & I should respond well to HU. Wants weekly monitoring for a month to check & then maybe adjust medication & see me every 3 months. Does this sound normal?

ET is sneaky. Usually, first symptom is an TIA, stroke or a heart attack... Thise of us youget regular medical attention may never have any ET symptoms prior to diagnosis.

I have never had a BMB, but it sounds like you got a great result. So glad for you!

I'd say your doctor absolutely did the right thing starting you on HU. How frequently are you taking it?

Learning from others' experience, I always take my capsule after my biggest meal of the day -- for me, that's lunch. And I always drink at least 8 or more ounces of water after taking the capsule.

Your doctor's plan to monitor you closely sound great.

Some people respond right away to HU. Others (like me) need an increased dose to be effective.

But whatever turns out to be true for you: Today you have taken an important step to get your ET under control. Congratulations!

500mg once a day. She didn’t say when I should take it. So I figured after dinner.

Sound good!

I was diagnosed at 50 and I am 68 right now. After my discovery Mayo doctors told me the only thing I could do was eat smart and exercise like crazy. I took their advice and started to do Triathlons , marathons, bike races etc. I found both things helped a lot and I too have been searching for foods or supplements to help. Was on one baby aspirin a day until Mayo last year had me switch to Pegasus. I know if I eat the wrong food and stop exercising I feel worse and there are times I have to force myself as I do feel the fatigue more and more. Hard to tell if it’s just age or the ET but I am with groups where 80 year olds can kick my butt so I always use that as my reason why. My platelets have risen for years from the 400’s up to the 800’s which is why Mayo started me on Pegasus. I have been on it 4 months now and for the first time my platelets went down to 480 so I am hopeful. Let us know if you find something that helps but I have tired so many diets and supplements and have not yet. I think I have spent more money on supplements than my treatments.

Did you try the HU?

Thank you for alerting me to the fact that strengthing exercises are essential. My brother also hax the ET JAK 2 mutation. Will advise him to keep moving too.