Any knowledgeable people here know anything about this? Been diagnosed with it. Because of my whacked out family genetics (mother was Ashkenazim and contracted Leukemia while working in the Manhattan Project; Askanazim have wierd health issues), my doc wants to harvest some bone marrow.
Found this on Medline:
“It is commonly held that PV is a rare disorder, when in fact with a minimum incidence of 2.6 per 100,000 it is more common than chronic myelogenous leukemia (CML) and is particularly prevalent in persons of Ashkenazi Jewish ancestry.”
Any help greatly appreciated!
And you had a JAK2 test?
I think that was done. He did a big blood profile (and used stats from the GP). EPO was low which made him suspect the Type 1.
Please do this test! It is not on any panel.
Jak2 is present 95% of the time and is conclusive. (There is a false negative rate, currently, of 5%, so a few patients with true PV have a negative test). A low EPO level is not necessary, nor is it diagnostic of PV.
The reason to do the test, in your case, is confounding factors: perhaps not testosterone any longer, but a whole bunch of supplements, fuel additives, etc. Do you have sleep apnea, for example? Sleep apnea can cause polycythemia due to mechanisms other than nocturnal hypoxia and high EPO.
Aromatase inhibitors in males can cause polycythemia; it is not clear to me that T needs to mediate this effect.
It ain’t PV until it is. In the last month, I have been sent patients advertized as PV who had other diagnoses, not otherwise suspected: unitary renal cyst, and polycystic kidney disease.
One the diagnosis of PV is secured, ask about captopril. (our little secret.)