I've spent a lot of time pondering my appointment today. I still continue to confuse, but what else can you expect from me.
Basically what it comes down to is I have polycythemia, but it doesn't meet guidelines for primary or for secondary.
Hematocrit, hemoglobin, white and red counts, and neutrophils are still high. Those 5 are all above the number to be considered as positive for polycythemia.
I'm JAK2 negative, which a positive would be 100% definitive for PV, but 5% of people with PV are JAK -.
My erythropoeitin(EPO) levels are solidly in the normal range. Low would be a pretty solid indicator of primary PV, high is a definite for secondary.
My iron levels are fine.
Red cell mass is normal.
My liver is fairly enlarged with fatty infiltrates.
My spleen is slightly enlarged.
Kidneys and gallbladder are perfect.
No tumors or abnormalities on the ultrasound.
We discussed doing a bone marrow biopsy but we have decided against that for now. Mainly because my labs are stable. For five years they have been slightly elevated. They have never been massively elevated. With that stability, the EPO and JAK2 being negative my doctor doesn't feel there is a need to rush into more testing or treatment at this time.
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