I would defer to your hematologist for a real discussion, but your hematocrit at or below 50% is pretty non-concerning for primary polycythemia vera. Based on my reading you wouldn't even phlebotomize unless you HCT is >54%. There are plenty of other causes of secondary polycythemia beyond sleep apnea, including just simply having a higher than normal hematocrit.But to be sure, take your hematologists recommendations are far higher value than my thoughts. I deal with the secondary causes a lot more that primary PV.
Polycythemia Vera?For the last ~10 years, I've had multiple CBCs done and regularly had slightly elevated hemoglobin and HCT%. My pediatrician and then primary care (until about age 25) never thought twice about it, as they were at the very top range of normal. Then, when I switched doctors in 2019 due to a move, I had a CBC done and my current PCP is much more concerned.The last three CBCs showed: Hemoglobin: 17.4, 17.5, 17.5 HCT%: 49.6, 49.4, 49.8, all taken within the last year. All other labs are normal (RBC slightly elevated too, understandably). I even have a CBC from 2011 with HGB 17.5 and HCT 49%, and 2016 at 17.4 and 50% respectively. The institution they were taken at consider those within normal ranges (though at the upper bound). The most common JAK2 mutation is negative, and so is the EPO testing (as in its normal). I don't have any noticeable symptoms, other than some occasional moderate fatigue and malaise that may or may not be related.I was referred to hematology and the doctor was moderately concerned. She would like to order additional gene mutation testing for less common mutations, and some other more basic labs. The former of which is likely to be pretty expensive. She also was clear in saying that PV is technically cancer, and could lead to stroke etcetc. I am what I would consider highly medically literate, but still found the latter comments fairly scary. At the same time, she mentioned dehydration and sleep apnea as other causes. I find both to be somewhat unlikely given that a. being dehydrated at every blood test seems unlikely and b. i don't snore (though i know you can still have sleep apnear regardless, its far more rare).My real question is: from all of my research, the lab values I'm seeing are really just above normal and may even be within normal ranges at some institutions. To what extent is it worth continuing to pursue the root cause? What do I have to worry about most? If one of those other gene mutations comes back positive, what's my prognosis?