Eileen, my platelets have been under control since my diagnosis 3 yrs when I started Hydrea. Lately, however, my platelets have been inching up and out of normal range. I am new to this group as well but I read someone’s comment wherein they said platelets are affected by Vitamin D3 and referred me to one of the resources on this website discussing D3 and platelets. Decided to start taking D3 about 3 weeks ago (2000 mg) and just had blood work taken last week. Platelets had gone down 110 pts! Coincidence? Maybe but maybe not. I haven’t done anything different in that time frame and that is a big reduction and my platelets had been out of normal range since last December, almost a year ago. Hematologist didn’t pay any attention when I pointed this out to her. My takeaway: it is crucial that WE - “Team MPN” - pool our knowledge and personal experiences to see if we can try to figure this all out because let’s face it: no one -no doctor, health professional, or researcher - is going to care more about this illness than those of us suffering from it!
Take care, Eileen.

I have a genetic predisposition to clotting, Factor V Leiden, and if your mother has not had genetic testing done this might be helpful,,

I have ET JAK2 mutation. My nephew has PV. His mother, my sister, has an undiagnosed clotting disorder that causes her to have TIA's, but her bloodwork is "normal". It is my belief that there is a genetic component to these blood disorders that hasn't been discovered scientifically yet.
My mother ALWAYS felt guilty about anything that happened to any of us 5 kids. I think that is a mother's love that you are feeling.

I was diagnosed with ET JAK2 Mutation in April 2024 after having slightly elevated platelets for 6 years. I’m 27 now.

My daughter (7) also just had blood work done twice that showed elevated platelets. But the doctors refuse to give me a referral to geneticist or hematologist. I’m starting to think I passed this on to her. She has shortness of breath and is always tired.

Hi Virginia, which MPN did your mom have - ET? Is there any insight that you may have as to why her MPN went away?