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Polycythemia: Primary or Secondary?

Blood Cancers & Disorders | Last Active: May 12, 2023 | Replies (29)
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@buckaroobanzai

This is where it gets confusing. The low end of our lab reference range for EPO is 4. I am a 6. Thus, the EPO test was inconclusive. So, we did a JAK2 test, which came back negative.

My physician assumes this is secondary polycythemia but the water is muddy.

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Replies to "This is where it gets confusing. The low end of our lab reference range for EPO..."
mattymatilda | @mattymatilda | Sep 7, 2022

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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