I’m seeking any guidance on Polycythaemia Vera (PV) and the application of WHO2016 criteria in its prognosis or lack thereof. My Dr believes I have it, although JAK2 & Exon 12 tests were negative, HGB in 18s, HCT>50s, RBC >5s, low normal EPO around 6-8, bone marrow biopsy “slightly hypercellular” and venesection is the current infrequent treatment with checks every 4-8 weeks.
I’m having a hard time persuading my critical illness insurance provider that I qualify (another paid out by the way on exactly the same tests and criteria). They dismissed the marrow as fine and said my EPO was within normal range.
From reading there are 5% of patients who don’t have JAK +ve results but exhibit other symptoms of PV for which WHO2016 would not pickup. A Dr’s view is low normal EPO range with high HCT (all other things being considered) is a diagnosis of PV. Secondary PV has been discounted with normal tests on O2, Testosterone etc.
Although viewed as early stage, it is still PV from my Dr's expert medical opinion as a Haematologist in this field.
The treatment obviously effects the test results so proving the condition is now more complicated. Whilst stopping treatment is unadvisable both from the insurer’s requirement not to endanger oneself and the Dr’s in preventing a thrombosis.
Anyone know someone/anything to assist to prove the case?
Thank you.