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Rational for polycythemia Vera test?
Bit of a complicated case. 37f beta thalassemia minor, hereditary hemochromatosis via H63D homozygous (high iron&sat/normal ferritin) Hepatosplenomegaly which I am waiting for an iron MRI.
Been studying my blood levels and noticed consistent increase in RBC, hemoglobin, hematocrit, MPV (at times above normal with giant platelets), neutrophils for past ten years.
RBC is always high and hemoglobin/hematocrit low due to thalassemia but has risen from RBC 5.25 to 6.68 (ref 3.8-5.1), hemoglobin 9.1 to 13 (11.7-15.5) hematocrit 30.6 to 42.3 (35-45). WBC (neutrophils) are at highest of normal, % above @ 78.5, used to run low end of normal.
With spike in CBCs I’ve experienced increased dizziness, vertigo, syncope (diagnosed dysautonomia), bruising and Petechiae, nosebleeds, weight loss, sudden onset of skin discoloration of red and purple in hands and feet (doctor suspects raynauds despite no correlation to temperature and no white presentation), pink/red itchy skin after showers, and extreme fatigue. I suspect an MPN, polycythemia Vera maybe and would like to request a JAK panel. Would this be a reasonable request? Or are my numbers ok?
Been seeing an oncology NP who has no answers for me so has referred me to MD, also oncologist. Hard to find hematology in my area in my network. I’m afraid thalassemia could be masking larger problem, and the providers I’ve seen are unfamiliar with it.
Been studying my blood levels and noticed consistent increase in RBC, hemoglobin, hematocrit, MPV (at times above normal with giant platelets), neutrophils for past ten years.
RBC is always high and hemoglobin/hematocrit low due to thalassemia but has risen from RBC 5.25 to 6.68 (ref 3.8-5.1), hemoglobin 9.1 to 13 (11.7-15.5) hematocrit 30.6 to 42.3 (35-45). WBC (neutrophils) are at highest of normal, % above @ 78.5, used to run low end of normal.
With spike in CBCs I’ve experienced increased dizziness, vertigo, syncope (diagnosed dysautonomia), bruising and Petechiae, nosebleeds, weight loss, sudden onset of skin discoloration of red and purple in hands and feet (doctor suspects raynauds despite no correlation to temperature and no white presentation), pink/red itchy skin after showers, and extreme fatigue. I suspect an MPN, polycythemia Vera maybe and would like to request a JAK panel. Would this be a reasonable request? Or are my numbers ok?
Been seeing an oncology NP who has no answers for me so has referred me to MD, also oncologist. Hard to find hematology in my area in my network. I’m afraid thalassemia could be masking larger problem, and the providers I’ve seen are unfamiliar with it.
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