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Polycythemia: Primary or Secondary?
Blood Cancers & Disorders | Last Active: May 12, 2023 | Replies (29)Comment receiving replies
Hi Just curious. I was diagnosed with Polycythemia and my father and I both have Thalassemia minor ... a different kind of anemia. Iron, I was told is not a positive thing for Thalassemia. Is that an anemia possibility for you? Please forgive me, I'm new to the polycythemia diagnosis and admittedly am ignorant about this whole process. So many questions. Thank you for sharing your experiences and being so helpful to this newbie.
Replies to "Hi Just curious. I was diagnosed with Polycythemia and my father and I both have Thalassemia..."
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Hi, sorry for such the long delay in responding. The Elysium is interesting. I did ask my hematologist about it. He said it’s usually found in babies as it is hereditary mainly. My anemia is affected by my hematocrit when my hematocrit is really high my iron numbers go up After a phlebotomy my iron numbers go way down. It’s like a catch 22 then when I get an iron infusion it raises my hematocrit. I don’t like this back-and-forth because it does not seem logical. I’m still struggling trying to find a MPN doctor in my area. Apparently they are few and far between .
Initially, before I was diagnosed with polycythemia, the hematologist thought I had bone marrow cancer. That was his first diagnosis until my bone marrow biopsy came back negative. The biopsy did show some abnormalities, but nobody seems to know why.
I hope this answers some of your questions, or maybe explains some things.