Just thought I'd send an update as I went to my haematologist appointment today (see previous post for info/comments) and thought my experience might help others here who are curious about PV and don't have a diagnosis yet.
I was referred to Haemo when my bloods came back several times with RBC 6.0, Hb 16.5, PCV .50, MCV 99. My GP basically diagnosed PV but said the JAK2 test would confirm it. So, for two-three months I anxiously presumed I had PV and awaited my appts at the hospital with Haematology. I am American living in Ireland and things are done differently and more slowly here (you have to wait to get letters for doctor appointments in the mail!) so the anxiety was probably more intense for me, I must admit, but 2-3 months is a long time to come to the result I got.
Today, I met the haematologist and he told me the JAK2 test was negative. They took more blood to test for other function (liver, kidney etc) I don't have those results yet, but they have always come back normal which is why my GP suspected PV and not secondary polycythemia. He also had me get a chest X-ray which I don't have results of yet either.
He basically told me that this is Secondary Polycythemia and is probably related to lifestyle choices. I.e. lose weight, exercise more, don't drink or smoke and the levels will probably come down.
He also said stop taking aspirin and that I can fly again.
To be honest, I feel more confused and depressed than I did before because I still don't have a firm answer.
I just turned 50. Could maybe lose a couple stone , don't smoke (but did, socially, years ago), and I exercise every day. I am a food/wine journalist so probably indulge more than I should! But, really? Can lifestyle alone cause this????
Anyway, I wish everyone the best of luck with their MPN journey, I hope it's a healing one.
Best,
Jennifer