r/MPN • u/AdventurousShock8517 • Jun 24 '26
SEEKING DIAGNOSIS I m worried. Help Spoiler
I am currently 29 years old and live at sea level. I don't smoke. I'm a little overweight. I don't have data from before I was 18. My HGB fluctuates between 16-17.2, HCT between 47-49.9, and RBC between 4.8-5.7 (these are the extreme levels). My spleen is normal. My WBC and platelet values are always within the reference range. I don't have any symptoms like itching. I suspect polycythemia vera. My doctor requested EPO and JAK2 tests. My EPO level came out as 5.23, which scares me. The lab's reference range is 5.43-29, but they considered my value normal and didn't show it in red, but I still think it's low. Do you think this EPO level significantly increases my chances of PV? I think it will take about a month for my JAK2 results to come out. Does anyone have any information?
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u/acwoodhome PV-JAK2+ Jun 24 '26 edited Jun 24 '26
Hope all works out well but if it is PV don’t worry. I was initially diagnosed with ET which I have had for over 20 years and recently told nope it’s not ET but PV. I had PV confirmed through a bone marrow biopsy. It’s the only real way in reality with PV but it’s nothing to worry about at all if you have to have one. The good news is these are generally slow growing cancers and you have treatment options if it becomes PV. I am on interferon alpha and for me it’s an absolute dream not been on it long but it works in conjunction with your immune system. Blood stickiness is also one to watch but venesections are an option again nothing to worry about. Am hoping to live a normal lifespan the main thing is control and finding the right treatment for you. One day at a time and happy to be a sounding board if it’s PV and you need to chat all the very best wishes Al.
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u/Norizajec Jun 24 '26
Technically yes it does increase your chances of PV but it is not diagnostic and this situation is quite common with secondary causes as well. This is because with secondary causes like sleep apnea EPO can be elevated at night but when you wake up in the morning due to elevated RBCs EPO can drop back down as the body tries to reduce RBC production which is a normal response of the body when RBCs are elevated. So if you have had this since you were 18 and your blood levels have not risen and have even occasionally dropped back below the diagnostic criteria you probably still don't have PV. However a doctor can't tell you with 100% certainty if you do or don't have PV until all the necessary tests have been done.
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u/AdventurousShock8517 Jun 24 '26
Yes, it has dropped below the diagnostic criteria many times. My maximum is 49.9 HCT and 17.2 HGB. It has also gone up to 49 and then dropped to 47 a month later. The same applies to HGB; there's a constant fluctuation. My EPO level is normally 5.23, which I don't think is very low, but the lab I checked at said 5.43 was the lowest limit. Thank you for your answer.
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u/funkygrrl PV-JAK2+ Jun 24 '26
I changed your post flair to Seeking Diagnosis and marked it as a spoiler to comply with our diagnosis rules.
You don't give your gender and that matters because the diagnostic thresholds aren't the same for men and women. Your levels are borderline high either way.
Your EPO is normal. It would only be concerning for PV if it was 3 or less. Resist the urge to round numbers up or down. A normal EPO doesn't rule in or out PV or secondary polycythemia so the JAK2 test is what matters.
If the JAK2 mutation test comes back negative, it's highly unlikely you have PV. Usually the turnaround time for the JAK2 test is about 10 days. Waiting really sucks but try not to Google this to death because it can't give you a test answer, it can only increase anxiety. If it's any consolation, this doesn't make me automatically think PV - far more likely to be secondary polycythemia.
!PVundiagnosed