Fluctuation of levels
Posted , 6 users are following.
Hi all, just a question to ask does anyone experience a fluctuation of levels, my levels slowly rose for two years reaching high levels in both heamocrit,heamoglobin and red blood cells, then out of the blue they dropped to almost normal levels, then out of the blue they gave risen again, not as high as before they dropped but my doctor seems more concerned now there's an unpredictability to my blood than before, I've now a horrible itching that has made my scratch so much I've made my skin bleed! I'm wondering if this is because it's up and down now? I've had no phlebotomies, had no change in diet or weight, nothing has changed to make a reason for this but I wondered if this happens to anyone else?
1 like, 20 replies
vicente06432 julia15874
Posted
julia15874 vicente06432
Posted
No I don't, I was about to have a red cell mass test and BMB and out of the blue my levels dropped, he was going go ahead with the BMB but I just said I'd wait and see if my levels rise again, my levels were at their highest 0.56 heamocrit heamoglobin 17.5 and red blood cells about 6.00, this was for two years rising a little every time, I'm jak2 negitive, so because of that I thought because my levels dropped I'd wait and see, they are still above the recommended levels but nothing that should course me any harm, I've suffered mainly from dizziness and headache, but my dizziness has gone since my levels dropped. It's really strange, All I've done different is take aspirin three times a week, I'm hoping it was a secondary issue and for what ever reason it's sorted itself out, I've to have another blood test end of Feb and end of March if they are okay it will be three month intivals. Julia x
julia15874
Posted
I have to say as well I've only been taking the aspirin a month, my levels just seem to go down then down again then shoot back up, so taking the aspirin I'm hoping will keep it down, it's funny but I feel a lot better at the moment and all my symptoms have eased, but I was told when my levels were at the highest , my symptoms were not polycythemia especially the dizziness, so how does it explain that my symptoms have gone and my levels are lower?
vicente06432 julia15874
Posted
Primary Familial and Congenital Polycythemia (PFCP) is a non-malignant pathology of the erythroid lineage, characterized by an isolated increase of the red cell mass without evolution into myelofibrosis or acutisation. Around twenty constitutive non-sense and missense mutations located in the exon 8 of the erythropoietin receptor (EPOR) gene have been described so far.
Maybe you have this illness.
julia15874 vicente06432
Posted
Thank you Vincent, it makes a lot of sense if it's a type that fluctuates, I was not getting along with my heamotologist so I wrote to Clare Harrison in London, I sent her a copy of all my blood results going back two years, she was fantastic as she wrote back and recommended I see a MPN specialist in Hull, so if my bloods were to rise again that's where I'll be going, at the moment I'm happy been monitored, but those two years my blood was high it was awful, now I'm lower I'm going to say I really feel for you guys with PV it's a no going challenge. Thank you Xx