u/DMar85

I (40m) was recently referred to a hematologist on a PV suspicion. For the last few years, my CBC has yielded elevated RBC, Hemoglobin, and HCT levels. My WBC and platelets have always been in the normal range.

I just received my results of the JAK2 V617f test and it came back negative. My EPO was 6.5.

The hematologist who is also MPN specialist here in Arizona, said that if my JAK2 test came back negative that I very unlikely have PV. He said the next steps would be to get me in for a sleep study and to get a CT scan of my kidneys and liver. But I’m reading my test results and it says if PV is still suspected, to test for the other JAK exon mutations. My doctor said nothing about more JAK testing. Should I advocate for the additional testing? I’m just confused about this whole process.l want to make sure I’m asking the right questions for my follow up appointment. Thank you!!

I (40M) just saw a hematologist today to discuss a potential PV diagnosis. Since 2022, I’ve had slightly elevated RBC, Hemoglobin, and HCT levels. My previous primary care doctor told me not to worry about the numbers (sigh). I got a new primary care doctor earlier this year and when my CBC results came back, he referred to a hematologist. I did the CBC in March and my WBC were 6.5 and my Neutrophils were 4.

The hematologist wanted me to draw blood immediately after the appointment. I did not fast, wasn’t that hydrated, and I was under tons of stress/anxiety. Well my results came back at my WBC were at 20 and my Neutrophils were at 17!!!!!! It seems like such a drastic jump over 2 months. I saw that WBC and Neutrophil levels can increase due to extreme stress which I had. But now I’m just worried. My doctor has not gotten back to me on this. I’m waiting on my JAK and EPO results as well. Just wondering if anyone has experienced this.

The doctor said that he doesnt suspect I have PV since my WBC have been normal previously. But right after he said this I go and test through the roof with my WBC. He felt my spleen and said it felt normal size.