EPO Levels

Thank you Peter - I am actually finishing up my Masters in biomedical science, and while they don't teach PV in any depth, I know enough. I've already spoken to an Oncologist friend who can't treat, but just give me advice and give me the reference numbers, support, ideas, answering questions. I actually got a referral to a Hematologist today, so I'll have an answer soon! 

So the door has opened for you. Good news.   The drawback with PV is that it is a disease which for many years was little known about and received scant recognition.  At the end of 2019 it suddenly broke free and became the subject of much interest and research.  The JAK gene mutation was recognised about 2004.  There seems to have been a great deal of catching-up since then.  Today it is the Haematologists who appear to be the most informed on MPN's as they generally have more patients referred to them.  It has not been straightforward gaining information on this subject and it is soon realised what a variety of symptoms are involved. Still along way to go.  I wish you well in your studies.

Peter.

Thank you - genuinely grateful. It's never easy to realize that you're facing a war with your own body. I really was just curious about the EPO levels, because, to me, that solidified that it's far more likely (even though it is quite rare) to be Primary PV than secondary to something else like Lupus. I was just curious to know where others were with their number. With a high EPO level, it would make total sense that your RBC, HGB, HCT and others would be up, thus indicating hypoxia. I do have sleep apnea, but I've had it for 18 years (whereas my numbers went off the rails June 2016, exactly 2 years ago. They've very steadily and gradually climbed, I am male (although I'm only 35) and the lowest I've desated in 10 sleep studies is 94%, which is normal, and I wear a mask at night, so I am breathing fine all night. That more or less rules that out as the cause of the high lab numbers. Through process of elimination, we've ruled out anything that could be a secondary cause, and if you don't have secondary, you have primary, PV. 

Last, I found a neat little chart yesterday that showed the correlation between your EPO level and your Hemoglobin. Secondary being high HGB & high EPO, whereas low EPO and high HGB. I included it so you could take a look. With my EPO and HGB numbers plugged in, it strongly indicates PV. 

AND, (I promise) I made an appointment with a new doctor for tomorrow who will hopefully be more proactive than my last! 

As I understand it EPO is more related to Polycythaemia than to ET of MF where the activity is of a limited character so this may correlate with your view of things.   PV is of course a progressive disorder with a variety of side issues and thereby creates people with symptoms spread over a wide spectrum.  As is often said, each person is different and may receive quite different side-effects but suffer the same diagnosis.  As you have discovered it can prove a very complicated illness which even the experts are pushed to contend with, particularly as the research is now fast moving.  Hope your new medic is to your satisfaction.

Peter.