Essential thrombocytosis with MPL mutation

Dear Tokyolin: I am “flynnconn” and you can check out my specifics in 2 previous posts on this site. Maybe very similar to yours. Or close enough. I have taken hydroxyurea 500 mg daily for about six months. My highest platelet count was 611 before starting HU. And by using HU it came down to 250. But my hair was falling out, I was very short of breath in doing the simplest of things, and experienced extreme fatigue, so tired and weak, to the point I would doze off while watching a movie with friends. I am 83 years old and before this in very good health. Even now, before taking HU, had no symptoms When I complained to the hematologist I couldn’t tolerate this situation any more, he not only told me no , he said I should continue as instructed and see him again in 3 months . That prospect seemed outlandish to me. I was so miserable I told him I couldn’t possibly go on like this. The discussion then took on a kind of Turkish bazaar feel. He then said well then once every other day, but I did not agree. Then he offered 3 times a week. After this disturbing exchange, I agreed but immediately began looking for another Dr for a second opinion. Or at least a second approach. After all. It’s my life that’s in play here. And in meantime I lowered my dosage to twice a week, wanting to see what would happen to the platelet count with this lower dose. I almost immediately felt 100% better. After a month, bloodwork at my annual physical with my regular GP showed, yes, platelets had risen (to about 480) but a number I had been living with for years before going to a hematologist . After GP visit I lowered my intake to once a week. A month later my platelets had dropped to 450.And the terrible side effects had not returned. Soon I am going to see the new Dr at a well known clinic in NYC who specializes in myelofibrosis and the elderly. (After a bone marrow biopsy in January my diagnosis had progressed to prefibrotic myelofibrosis.) So I may have another decision to make in the future regarding medicines, to take or no, and how much. t. I only know for sure that my dr wasn’t happy with my refusal to continue with HU. But yet he was then willing to negotiate a lower dose on my insistence. Could it be that some doctors, maybe because of the rarity of some disorders, and especially those with mutations, just don’t know enough. Or don’t like to be questioned. I guess my bottom line so far is it’s your decision whether to endure a medication —maybe even a doctor—that doesn’t seem to be working right for you. If you are miserable, as I was, there could be other ways to treat you. That’s what I’m hoping for.