Hi Julia sorry about your confusion. Question what's an EPO level? We don't use it or call it that in the US. Just wondering Linda
It's the protein called erythropoietin from your kidneys, that tells your bone marrow to produce more red blood cells, in PV it's usually in most cases 3 or below, if you have a high level you usually have secondary reason for your Polycythemia, however I've learned that there's an illness called VHL that's considered primary but it's the protein from your kidneys that at fault it sends a wrong signal to your bone marrow and usually your epo is high with this condition. Apparently there is a lot of reasons and the JAK 2 and JAK exon 12 is just one of them and there's quite a lot more mutations that can do it apparently.
Thanks Julia I haven't seen that on my blood tests. But I will look again. Linda
They might not of tested for it if you are JAK + but you could ask them if it's necessary to at your next heamotologist meeting x
I was planning on asking alr already. Thanks again
Your welcome xx
Good news!!!!! Today is your birthday so have a wonderful day!!!!!! Keep us posted!
Hi Ellen, thank you very much. I saw GP, she wanted to ask what I'd done different because polycythemia does not drop that dramatically, she said I should speak to my heamotologist. So I phoned his secretary and filled her in, this evening my heamotologist rang me back so promptly, he too said the same that he is very skeptical that it's dropped like that so dramatically, he thinks it's a false reading he wants me to have a blood test in December then January, I told him I'd not eaten red meat and iron rich food only because i had felt all dithery when I eat rich iron food and he said the same as my GP he needs to check my ferritin levels, thinking heamocromitosis, so I've to have a iron test, ferritin and a full blood count December and the same Jan, if my readings are high for my full blood count I have to go ahead with the red cell mass test, if the irons high he's also going to test me for heamocromitosis, he was actually really helpful and nice tonight. He was saying that he's sure I have polycythemia and the last reading is a result of something I've done that's made the difference but we will decide after the next two full blood counts, he thinks my blood still has a disease is how he called it. He was grateful I rang and he also said dizziness is a symptom of polycythemia and he was only surprised I had that symptom because your levels are usually a higher for u to feel dizzy. So the waiting continues x
Thank you for the reply! I know know that feeling dizzy is a symptom of Polycytemia. I get it from time to time. My Polycytemia was diagnosed as secondary. Now I know it's related to COPD. I had a sleep apnea test that my Hemotologist ordered as this can be a cause. The test revealed very mild. My respirologist was not satisfied with this so had me wear a spirometer on my finger while I slept. That test showed my oxygen levels were very low at night and I stopped breathing 8 times. I am now on a machine to where I have a mask on but just at nighttime. That test came back very mild. (Sleep apnea). Will keep you posted how this goes. Will know if I need this machine December 15th.m