I find my diet has more to so with my symptom burden than my PLT count does. If I eat foods that cause inflammation or if I'm under a lot of stress, I feel horrible. My PTL count may be low but I feel terrible. My MPN Specialist told me there's no direct correlation between PLT count & clotting. This blew my mind. You assume the higher your PLT count, the more the risk is of clotting. Not true & I'm living proof of it. My PLT were between 500-700 for years & I was on daily aspirin. I got a clot in my portal vein. He said he has patients who have PLT levels well over a million & they have never clotted, then he has patients like me who have lower PLT levels who have a clot history. So, I try to adhere to the Mediterranean diet (recommended by many MPN Specialists) and minimize my sugar & caffeine intake while also minimizing my stress levels. Rx also help with your symptom burden, but it all boils down to finding the right Rx for you that you're best able to tolerate the side effects of. Good luck!

Dear Ren,

ET symptom burden is not always linked to the level of platelets. This does not mean symptom burden is not linked to level of platelets, just that in some cases higher levels of platelets even in ET have other causes.

I can have high platelets (700,000) and relatively feel OK-ish, and at times my platelets are 450,000 and it feels like I am taking my last breath. But probably a factor here is overexertion in my case, that leaves me with hypoxia, fever, and post-exertional malaise.

Platelets can be high due to a host of other issues, some not directly related to ET. Platelets can be high due to low ferritin, due to infections, due to injuries, even due to several supplements, so it needs a bit of detective work to identify what leads to changes in the level of platelets. Sometimes it can be just that the illness has a sort of relapse-remitting pattern regarding platelets overproduction.
I discovered that plotting my blood tests and keeping track of what happened in my life at that point (infection, injury, anemia, inflammation, supplements, etc.) gives me some information about what can lead to what.
But I am also very aware I cannot control my illness, that once symptoms appear and inflammation settles, this will create a vicious cycle and the best I can do is be kind to myself and ask for support rather than deny my symptoms. This illness is very individual, so what works for me might not work for someone else.
This study has a bit more information about inflammation in MPNs:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC46...

Many hugs of support,
Tatiana

Impact of Inflammation on Myeloproliferative Neoplasm Symptom Development

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4619953/

As it turns out, the platelet count on my last test was 821K from the lab, so you can’t really trust the on-site machines/spinners that spit out the results right away! Now I am re-thinking my question…

Thank you. I’m feeling worse even tho my platelet count is down from 1.2m to 600k. I was discouraged bec I thought I was doing everything “right” and blamed myself - now I realize it’s ET and not my fault.
Knowing this relieves some pressure I was putting on myself!
I’ve read lots about ET but never knew platelet count didn’t correlate to how you feel.

We learn so much from each other!! Thank you everyone.💙

Thank you Tatiana - a lot of food for thought. I will look through this study when I get a chance and at some stage it would be interesting to compare our various data/observations, would be an insightful paper in itself with the variety of experiences on this site.