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Polycythemia Vera: Just been diagnosed
Blood Cancers & Disorders | Last Active: 22 hours ago | Replies (399)Comment receiving replies
@simple27 -- Agree that my anemic hematocrit points AWAY from PV. I wish I could convince my oncologist of how ridiculous this diagnosis is. Almost like saying "you are obese because you weigh 80 pounds." I suppose it is POSSIBLE to have masked polycythmia vera, but that's usually only true if there is substantial, consistent bleeding. But, in any case you cannot DIAGNOSE PV BASED on a low hematocrit-- it makes no sense.
My EPO levels also point away from PV, as they are high. So, yes, my brilliant oncologist diagnosed me with PV based solely on the JAK mutation, while I am the OPPOSITE of two of the other criteria, and have never had a bone marrow biopsy.
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I just hope this isn't preventing you from getting the correct treatment/relief. I would imagine it does and understand your frustration. I have the exact opposite situation. High hemoglobin and hematocrit, low EPO but no JAK2 mutation. According to a DNA report that I just ran the other night, I do have variants in my JAK2 genes so I emailed my hematologist to ask if that would be helpful in a diagnosis. I'm pretty sure he doesn't like me much because I am VERY proactive in my healthcare. Have to be. I'm just a number to these doctors.