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.

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

No, but my Mom had it. After she passed from a heart valve issue, I went yo see her hematologist/oncologist because she had told me her disease was gone. Well, her specialist has never seen anything like it in his and his two partners 40 combined years of experience. But, her disease was gone ??????

Absolutely I had to determine i was toxic and request a vit d test more often fro. To low to toxic in 1 year 5000 1u daily and nobody said to much retesting again hopefully next draw and awe where at still she the 500 is just taking every other day . But if you don't ask they won't test .

I agree with your observation, Joanne. My son's PCP never addressed the high platelet count he's had since the beginning of the year. When I became aware of my son's latest count, which was over 900, I pushed him to bring this to the PCP's attention and get a referral to my hematologist. Until my own diagnosis of PMF two years ago, I had never heard of MPNs. We have to keep advocating for ourselves.