Polycythemia: Primary or Secondary?

Posted by buckaroobanzai @buckaroobanzai, Aug 31, 2022

Hello all,

High EPO implies secondary polycythemia. Low EPO implies primary polycythemia. But what if, like me, you have very low but technically "normal" EPO?

Am negative for the JAK gene.

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mattymatilda | @mattymatilda | Sep 9, 2022

In reply to @buckaroobanzai "Yes, mine are similar to yours. Actually, mine are a bit higher. My numbers are listed..." + (show)

Mine fluctuates frequently, but never below 47.? Mine doesn’t increase by that much in a week I don’t think. Maybe over two weeks it will fluctuate that much. Yours is a full point. Seems like a lot for only a week.
My hemoglobin always runs high too. My platelets are almost always normal.
There is something else I want to show you regarding RBCs. I need to find test that’s shows some types of RBC abnormalities. I will look up the names this evening and post them. Have a really good day.

buckaroobanzai | @buckaroobanzai | Sep 9, 2022

Mine rises consistently. At my first phlebotomy it was 57. Don't know what it was after phlebotomy, but one month later it was at 52. No anemia.My hemoglobin is always too high. Platelets generally run about 325-350. Years ago, my platelets ran so high that my local blood bank took "double platelets" every two months.

amanda57 | @amanda57 | Sep 9, 2022

In reply to @mattymatilda "Hi, having similar issues. My dr. Just called it polycythemia. I have similar EPO but steadily..." + (show)

1 am the same age has u and I'm worried about stroke heart attack I have sever pains in my head and chest pains and strong pain between my shoulder blades like someone is pushing a knife threw me I have had no treatment foe my polycimania and I'm on my own and very frightened

mattymatilda | @mattymatilda | Sep 9, 2022

In reply to @amanda57 "1 am the same age has u and I'm worried about stroke heart attack I have..." + (show)

Hi Amanda 57. I am very sorry you are not feeling well. I think you need to see a hematologist and neurologist. If you are having difficulty obtaining health insurance please call a former doctor, Medicaid in your state, or ask family or friends to help you make some of the calls. I know how you feel especially if you don’t have a lot of support. We are here for you so now you have some support. I wish I could assist you more. Please try these things and post back so we know you’re ok. This Board is full of caring people.