Scared that I have PV..
Posted , 5 users are following.
I'v done the jak2 test and it was negative but the values of WBC RBC HGB and HCT are still high.
These were the values of my last examination:
WBC 16.0 (4.4-11.3)
RBC 5.90 ( 4.20-5.50)
HGB 17.3 ( 14-17)
HCT 52.1 ( 37-50)
Does these indicators means that I have PV or does someone with these values and jak2 negative was diagnosed with PV?
0 likes, 25 replies
julia15874 anna71665
Posted
Your levels are high, I would ask for a JAK exon 12 first before excluding PV also ask for your epo checking, like everyone says we're not doctors but it would be my suggestion Anna. Let us know how you get on x
anna71665 julia15874
Posted
Hi julia thanks for answering.
I've done the jak2 it was negative..actually i dont have a lot of information about PV just I know that these levels shows that I maybe have PV and that terrify me a lot. Any help or information from you will help me a lot to have a clear understanding about PV or secundary polycythemia.
julia15874 anna71665
Posted
There's two mutations Anna one is jak2 and JAK exon 12, have you been tested for both?
anna71665 julia15874
Posted
Hi julia I've been tested just for jak2. Thanks for telling me a should ask my doc about that😉
julia15874 anna71665
Posted
Anna are you in the U.K.? Basically this is what I've learned about PV and I'm no doctor or anything so if anyone disagrees then let me know as I don't want to give Anna the wrong information. PV there's about 95% of people with it are JAk2 + then the other 5% most of them have another mutation usually it's JAK exon 12, if you have no mutation the criteria is that your epo is usually low around -3 so there's a very very small chance that you can have PV without the JAK mutations, however that more rare that PV itself. Then there's a type of polycythemia that is still primary that is your epo gene that to blame your epo is the protein that sends a signal to your bone marrow but it doesn't stop sending the signal so your epo is usually high, there also the Von hipple gene that's another mutation (that can present in younger people) again a primary polycythemia, then there's secondary courses from smoking, over weight, tumours, liver problems, heart problems, sleep deprivation, stress. Then there's a polycythemia that they find no reason for, that's when every test has been done and they are all okay, this they treat like it's a primary (even though it's not proven to be primary) because they now say that other mutations will eventually be found and they say that they want your heamocrit to be below 45 so it doesn't bring a stroke or heart attack. I hope this helps but again I'm no doctor and I might not be totally right it's just my interpretation with what I've read, if you look up the WHO criteria for polycythemia Vera and the WHO criteria for polycythemia. Do you have any symptoms? What took you to the doctors in the first place? Good luck xx
angela_o..o julia15874
Posted
Anna sends greetings from Albania...
anna71665 julia15874
Posted
Hi Julia thank you very much..
I wish to live in UK but unfortunately Im so far I live in Albania..
Regarding to your questions. No I don't have any symptoms that cold indicate me to PV. I've done the blood test cuz I was sick I had a flu and my doc wanted to be sure if there is any infection when I've done them my doc noticed that the levels of WBC.RBC.HGB and HCT were also high a year ago but no like now..(now are more higher) and told me that is important to see a hematologist immediately