Polycythemia Vera - Help getting Diagnosis

Posted by brandonndre @brandonndre, Dec 11, 2022

I’ve been getting treated for strange heart anomalies for nearly a year now and been consistently getting labs will elevated RBC, hemoglobin, and hematocrit levels. I can no longer take warm showers as my skin feels like it’s being raked with glass. I’m having phlebotomies done every 3-5 weeks to dispose of an over production of “thick blood” and over the course of a year have lost nearly 115 pounds and have have developed gout. Everything I’m finding points to PV but when brought up to my care team it’s immediately brushed off or discounted and I’m simply being told to stay the treatment plan. I’m 17 months into the plan, 33 years old and just had my 4th heart attack, can’t keep weight on have “vertigo”, I’m putting in quotes because the two times it’s happened this year I lost my eyesight for 5-10 days and have to undergo physical therapy each time to regain mobility in my legs. I’m now on state health insurance and don’t have many options. Any help on what to do or where to go would mean so much. I’ve attached results of most recent panels of any physicians are present to interpret.

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Here are results of recent panel for reference and context.

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You need to demand an Erythropoietin test (EPO), if this protein is low you have PV, as I do.
If they haven't diagnosed you with PV what are they saying this is?
Before they treat PV, hemotacrit needs to be about 45. It takes time to get there, but you may need to have blood drawn more frequently to see the result.

How is your blood pressure when you go in or if you test at home? Blood pressure meds?
Are you taking low dose aspirin? Have you had a JAK2 mutation test? Bone marrow biopsy?
Spleen and liver size normal or enlarged?

You need to be your own advocate, but in the meantime get more active, cut the highly processed foods from your diet or at least reduce consumption, and stay positive as possible.

I was diagnosed with PV, after finding an enlarged spleen, bone marrow biopsy, blood numbers spiking and EPO test. Hematocrit is now in line and deciding path of treatment if any yet beyond phlebotomy.

Good luck and be well.

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Are you by chance taking testosterone, either by injection or a topical preparation? Polycythemia (but not PV) is often secondary to exogenous testosterone treatments. Those who take testosterone tell me that their physicians often write their high labs off to secondary polycythemia and do not follow up with JAK2 tests, etc. Could that be the case here?

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@brandonndre, I’m checking in. Did you see the helpful posts from @mpplus3 and @buckaroobanzai ? Have you considered a second opinion?

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