Yeah I am totally in same boat. I actually am waiting for the bone marrow test results right now, it’s called a Jak2 mutation test to see if it’s a bone marrow issue. I should get results within the week.
Are you currently doing TRT?
If you have the JAK2 gene, then you are no longer in the secondary erythrocytosis, but instead primary erythrocytosis. Probably would be a good idea at that point to not use testosterone and maybe switch to a more anabolic compound. Very few people have the JAK2 gene but it is always a good idea to check and make sure. If for nothing else, just to calm your doctor down. If your JACK2 is negative, they you do not have polycythemia vera because it is secondary erythrocytosis.
"While a primary erythrocytosis has been well established as a risk factor for thromboembolic events the secondary erythrocytosis from testosterone therapy has not been shown to cause an increase in thromboembolic events in any randomized control trial or prospective study to date."
"Guidelines vary depending on the country and the medical society with regard to the upper limit of normal for hematocrit in men on testosterone therapy. The Canadian guidelines cite a hematocrit of 55% as the safe upper limit, while the European Association of urology, the American Urology Association, and the Endocrine society state that
the hematocrit should not exceed 54%." Here in America generally agree that <55% HCT is safe.
"These recommendations are based on assumptions and the Hct cut off of 54% was arbitrarily chosen and not based on any study showing harm when this value is exceeded with
testosterone therapy. In fact, when Dr. Glenn Cunninghamm one of the authors of the Endocrine Society's guidelines for testosterone therapy was asked by Dr. Abraham Morgentaler where the upper limit of 54% came from he replied that “
the number was not based on any actual medical data ,but we had to pick a number and it seemed like
a reasonable number.”