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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)
@buckaroobanzai

Yes, mine are similar to yours. Actually, mine are a bit higher. My numbers are listed above. The first number listed after each label (RBC, etc.) is my current number.

Curious: Last Wednesday, my hematocrit was 51.9 but TODAY it was 52.9. So I am going up something like 1.1 per week?!

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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.

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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.

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1 reply
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)
@mattymatilda

Hi, having similar issues. My dr. Just called it polycythemia. I have similar EPO but steadily rising RBC and WBC. I also have chronic anemia so my doctor is very hesitant to do phlebotomies. I’m so worried I’m going to have a stroke due to the polycythemia, overweight, and age 57. Previous hematologist gave me phlebotomies THEN iron infusions. That didn’t make sense to me. JAK2 also negative along with many other gene mutation tests. Bone marrow biopsy was negative two years ago but there were some slight abnormalities. Also have high monocytes and neutrophils. I have no idea where to get clarification of what’s going on. I’m beyond fatigued and just recently was diagnosed with cluster headaches! Never had one until about 3 months ago. I’m 57. Had brain MRI. Nothing seen.
I know this is long read but if you have any input on ANY of the things I listed I would appreciate it. I’m on my 3rd hematologist. I’m trying to upload CBC with Differential. Thanks

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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

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1 reply
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)
@amanda57

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

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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.

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mattymatilda | @mattymatilda | Sep 11, 2022
In reply to @buckaroobanzai "Mine rises consistently. At my first phlebotomy it was 57. Don't know what it was after..." + (show)
@buckaroobanzai

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.

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Hello, I went back and pulled my CBC from June July I think. I attached screen shot.

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mattymatilda | @mattymatilda | Sep 11, 2022

I think this is June and July
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1 reply
buckaroobanzai | @buckaroobanzai | Sep 11, 2022
In reply to @mattymatilda "I think this is June and July" + (show)
@mattymatilda

I think this is June and July

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Was this blood work done prior to or just after a phlebotomy? Am trying to compare your numbers to mine.

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1 reply
mattymatilda | @mattymatilda | Sep 11, 2022
In reply to @buckaroobanzai "Was this blood work done prior to or just after a phlebotomy? Am trying to compare..." + (show)
@buckaroobanzai

Was this blood work done prior to or just after a phlebotomy? Am trying to compare your numbers to mine.

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This was after I changed hematologist, so around 7 months ago

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1 reply
mattymatilda | @mattymatilda | Sep 11, 2022
In reply to @mattymatilda "This was after I changed hematologist, so around 7 months ago" + (show)
@mattymatilda

This was after I changed hematologist, so around 7 months ago

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I didn’t say that clearly. These are my results 7 months after my phlebotomy.

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1 reply
mattymatilda | @mattymatilda | Sep 11, 2022
In reply to @mattymatilda "I didn’t say that clearly. These are my results 7 months after my phlebotomy." + (show)
@mattymatilda

I didn’t say that clearly. These are my results 7 months after my phlebotomy.

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My new hematologist has not given me phlebotomy yet.

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