Diagnosed at age 29 in 2009 with Secondary PV. Did about 12 Plebs and then had low iron. I was negative for the JAK2 after a BMB was done. balanced out and was doing well until 2013 and the HGB and Hemocrit was back up. Now its 2014 and i had 11 plebs done and have low iron and feel rough.

Fortunately or unfortunately depending on how bad I feel on the day, I also have Hemochromatosis (genetic iron overload) so its almost impossible for me to have low iron. As a consequence I have had at least one phlebotomy a month for several years to fight both conditions. Unfortunately my blood has to be thrown away as special licenses are required for any of the blood services to use it.

Hi there I have the same no Jak2 so secondary . and my iron stores are getting really low as I need monthly PLebs . Also have a lot of tension pressure headaches now, not sure why weather it the low iron count or the Pleb I not sure . Does anyone have the same and know any remedies that may help.

When I 1st had the Jak2 test (the genetic test) done it was negative. The Dr. said I had to have a bone marrow biopsy. He wouldn't do it with any sedation & because I wanted sedation I went to Dana Farber hospital in Boston. They do the Bone Marrow Biopsy with sedation there. I went for the consultation before the bone marrow biopsy & the Dr. set me up for an app'tment for the biopsy. As I was about to leave he said, "You know what, let me do the Jak2 test again 1st." He did, & that test was Positive, The polycythemia vera was therefore confirmed & they didn't need to do the biopsy. If your insur will pay for re-doing the test I'd recommend that (sound like that might not happen though). In any case, I was told by the Dr. that 5% of people who have polycythemia are Negative on the Jak2 test. By the way, people w/polycythemia cannot donate blood either.