Hello everyone. About a year ago, my doctor noticed I had elevated HB and HCT levels and ordered JAK2, CARL, and MBL gene tests, which came back negative. He also ordered blood transfusions every six weeks but didn’t determine if I have polycythemia vera. He said it was due to low EPO hormone levels. My question for those with polycythemia vera is: what is the EPO level at diagnosis? Thank you all.
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Hi @Aziz1, welcome to the Forum. Just to check - when you say blood transfusions, do you mean venesections (where blood is removed)? I just want to make sure I’m understanding your situation correctly.
I’m not a medical expert, so I can’t answer questions about specific EPO levels at diagnosis - that’s really something for your haematology team to help you understand. It might be worth writing down your questions (like the EPO level question, and asking them to clarify whether you have Polycythaemia vera (PV) or not) to take to your next appointment. Sometimes it helps to be direct and say “I need to understand what my diagnosis actually is” to get to the bottom of things.
Of course, other Community members with lived experience of Polycythaemia vera (PV) are very welcome to share their own experiences if they’re comfortable doing so, that would be great! You might also want to read our information about polycythemia vera, and to have a look at the ‘Related’ section at the bottom of this thread - there might be other discussions about Polycythaemia vera (PV) diagnoses that could be helpful.
And if you’d like to talk through how to approach these conversations with your medical team, or just to talk through the uncertainty of not having a clear diagnosis yet, our support line is available on 0808 2080 888 or support@bloodcancer.org.uk.
Take care,
Ceri - Blood Cancer UK Support Services
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Hello @Aziz1
Welcome to the forum, and thank you for taking time to post your question.
I have not experienced your symptoms, but I hope someone will be able to help you.
Often symptoms are very generic and quite difficult to diagnose, but I’m confident your medical experts will be able to clarify further for you.
You may find the forum page - JAK 2 Negative and Erythropoietin Normal (7.5) but lots of symptons of use, so do feel free to take a look
If you prefer you can always speak confidentially with our support services team for information and support 0808 2080 888
Take good care of yourself and do let us know how you get on
Kind regards
Mike
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Hello there @Aziz1, welcome to the forum. I’m sorry to read you’ve been undergoing testing and that there’s no clear diagnosis yet.
Perhaps my experiences of Polycythaemia vera (PV) might be of interest although like @Ceri_BloodCancerUK says it’s best to consult your doctor about your own results as they’re so unique to each of us.
I was diagnosed with Polycythaemia vera (PV) in 2023 after testing showed I had a JAK2 gene mutation and various other indications. Checking my notes, I’ve only been tested for erythropoietin (EPO) once around when I was diagnosed with Polycythaemia vera (PV) and it was 2 mU/mL, so below the normal range of 4-27 mU/mL. This measurement has never been mentioned by my specialists and not tested for again.
What I do note at each blood test is my haematocrit which shows how thick my blood has become, and whether I need phlebotomy to remove some. When my haematocrit is above 45 % then I have a pint of blood taken.
It may be that while you don’t have a gene mutation associated with Polycythaemia vera (PV) your body’s production of blood cells is still affected by a blood disorder, so it’s great that you’re being thoroughly tested. Confusingly, there’s a condition called polycythaemia AKA erythrocytosis which is not the same as Polycythaemia vera (PV), nor a blood cancer.
Do please keep us posted @Aziz1, and consider calling the lovely specialist nurses at Blood Cancer UK who can answer medical and other questions.
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Thank you all for your support and kind sentiments. The anticipation and waiting are truly killing the joy of time for me. I’ve had bloodletting more than once without knowing the illness or diagnosis, and I still need it because my (HCT) is high. I previously had a heart attack and had a stent implanted. The risks are high with blood viscosity and a low (EPO) level, and the hematologists are baffled. I just have to wait until they find out what the illness is.
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