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.