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Please describe your experience with polycythemia.

One percent to five percent of newborns can have a high red blood cell count (neonatal polycythemia).       Polycythemia is an increased number of red blood cells in the blood. In polycythemia, the levels of hemoglobin (Hgb), hematocrit (Hct), or the red blood cell (RBC) count may be elevated when measured in the complete blood count (CBC), as compared to normal.Hemoglobin levels greater than 16.5 g/dL (grams per deciliter) in women and greater than 18.5 g/dL in men suggest polycythemia. In terms of hematocrit, a value greater than 48 in women and 52 in men is indicative of polycythemia.Production of red blood cells (erythropoiesis) occurs in the bone marrow and is regulated in a series of specific steps.One of the important enzymes regulating this process is called erythropoietin (Epo). The majority of Epo is produced and released by the kidneys, and a smaller portion is released by the liver.Polycythemia can result from internal problems with the production of red blood cells. This is termed primary polycythemia. If polycythemia is caused due to another underlying medical problem, it is referred to as secondary polycythemia.Most cases of polycythemia are secondary and are caused by another medical condition. Primary polycythemias are relatively rare.One percent to five percent of newborns can have polycythemia (neonatal polycythemia).
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My experience is limited. I received the results of my lab work 2 weeks ago and polycythemia was listed as a diagnosis. No call from my doctor explaining anything, all the papers said I am to be re-tested on 4-23. So naturally I looked it up, now the more I read the more I feel like should have received at least a phone call to explain the results of lab tests, to come to this conclusion as a diagnosis.
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My hemoglobin is 16.9, I wonder if this is because of polycythemia.
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I am a 37 year old female and I just received confirmation of the polycythemia vera diagnosis. I am currently on 172 mg of aspirin and am scheduled for 3 phlebotomies. I initially thought I was iron deficient because I have had anemia in the past but the doctor noticed some abnormalities and referred me to a hematologist. I tested positive for JAK2 gene and my hematocrit and hemoglobin are moderately high, as well as my liver enzymes. I have a scheduled bone marrow biopsy next month. My symptoms started with extreme fatigue. I was tired all the time and had to stop working out. I have shortness of breath from just walking short distances or doing housework. I have cold hands and feet almost always. I am hoping to create more awareness about this rare disease especially for people within my age group.
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I was diagnosed about 3 years ago after blood clots in my lungs put me in intensive care in the hospital, with a procedure that knocked out the clots; further tests produced the polycythemia vera (PV)  diagnosis. The worst effect of PV in my case is the itching! My whole body can be affected by the itching, but mostly the chest, the back, the tops of the legs, and the backs of the arms. It can come upon me sometimes after my body is wet, but also, if I am agitated by watching the news!
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I was diagnosed with polycythemia 3 weeks ago during a routine blood work. My doctor immediately set me up an appointment at the cancer center. That's all that was said. I looked it up online, big mistake. Now I wait to see cancer doctor on December 4th. I am nervous. I don't know what to expect or what to tell my family who also looked it up and saw the worst.
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