And the final diagnosis is....I have no idea
Posted , 5 users are following.
So, my JAK2 test was negative, EPO test was on the lower end of normal, but not alarmingly so. Because my RBC, Hematocrit and Hemoglobin are just slightly above normal, I dont meet the WHO criteria for polycythemia, but the hematologist is certain I have it, but that my heavy periods are keeping it in check. However, he was leaning towards it being secondary because of the negative JAK2...but the lower EPO levels would point towards primary. I also do not have any of the risk factors for secondary...dont smoke, dont live at a high altitude, no sleep apnea.
At this point he doesn't feel the need to do any further testing unless my symptoms worsen. Just said to keep taking the aspirin and have my blood checked every three months or so to make sure the numbers haven't increased.
I realize that the treatment at this stage of the game would be the same regardless of whether it is primary or secondary, but it is most frustrating to not have any real answer!
0 likes, 4 replies
julia15874 miranda98
Posted
Hi Miranda, I'm pleased that you haven't got the JAK2 but frustrated that you don't have any answers for your blood been high, I too are in the process of waiting for the JAK 2 results, had my bloods done today for it, it took ages for the phlebotomist to draw the blood, it ran so slowly, I too would like a result to why I am feeling so rubbish, I had a hysterectomy three years ago and since then my bloods have slowly been going up, like you not exceptionally high, although my haemotogist today thinks they are high and he feels I've probably got it and your kind of prepared, I sit and wait. I do hope that there's a solution to your bloods and how you feel, I'm sure something will come to light, if mine come back negative then I'm blaming the menopause and high blood pressure. All the best Julia xx
paul250360 miranda98
Posted
Hi ladies.
l'm surprised you haven't from what l can see from your posts had a bone marrow biopsy. l've had (or was diagnosed) with PRV 26 years ago and the bone marrow biopsy proved conclusively my diagnosis.
Having heavy periods would be horrible but l suppose the upside is not having to have regular venisections.
Maybe next time you see your specialists ask about the bone marrow biopsy.
miranda98 paul250360
Posted
Hi Paul-
Because my blood counts aren't high enough to meet the WHO criteria for a polycythemia dc, and I had a negative JAK2 and normal EPO, insurance would not cover further testing. The hematologist dx me based on symptoms and the paradox of having my counts go up as my ferritin continues to drop. Based on his experience he has no doubt that this is polycythemia, but at this stage of the game I dont quite meet the criteria.
But, my treatment is the same either way- aspirin and monitoring. If my symptoms worsen or the counts go up, then he recommends more testing. Since I started on the aspirin about a month ago I have felt great though- no more shortness of breath, dizzy spells, pounding heart, nausea, burning hands and feet or insane itching. I'm still tired, but that is something I am used to because of always having low ferritin, and I don't expect that to change since he was adamant that I restrict iron and atop supplements unless I start getting too weak. There is a sweet spot for me around 10, where I dont feel like total crap and my hematocrit hovers around 45.
ellen68007 miranda98
Posted
Hi Miranda. I as well did not meet the criteria for primary Polycythaemi. After the two bone marrow aspirations I had one at the beginning of this journey and a final one requested by the Hemotologist to be 100% sure of a firm diagnoses it was confirmed secondary. I live in Canada and the health care her covered that test. Just a shame it was not included in your case. As you once I was put on blood thinners most of my symptoms disappeared. The itching stopped as well as feeling dizzy. I just need blood work every three months to monitor my blood levels. At this point I will not need to have phlebotomy's. Take care and keep in touch.