Patient Comments: Polycythemia (High Red Blood Cell Count) - Cause

What was the cause of your high red blood cell count (polycythemia)?

Comment from: David, 55-64 Male (Patient) Published: February 23

As a child my body did not make enough Testosterone. My testicles were under sized and my breasts were larger than a normal boy should have. My childhood doctor thought I was failing my classes for attention. I failed the 4th grade and the 6th grade; I never graduated high school. I passed the GED test and joined the United States Navy. When I got out they told me I needed Testosterone injections for the rest of my life and that I would never have children. I began medication and I went to college. I graduated with honors. Testosterone also helps with brain function. I am now 64 years old and I have Polycythemia; a condition of long term hormone useage. I have been phlebotomized 14 times. I'm hanging in there.

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Comment from: 45-54 Female (Patient) Published: October 04

I was having daily headaches and increased sweating and lethargy, then I experienced two episodes of splenic infarct. The hematologist tested me for leukemia and any other related disease, found elevated platelets and hemoglobin and the JAK2 mutation. I am a 45 y/o female diagnosed with primary polycythemia vera who has never smoked a day in her life. I am adopted and do not have a family history, but I have been told this disease can run in families.

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Comment from: reedy888, 55-64 Female (Caregiver) Published: August 16

My husband has Polycythemia Rubra Vera. He was diagnosed in January 1994. He now has severe chills, high fevers, and extreme pain in his knees and arm bones. He has Leukemia but we don't know how far. We don't hear much about the final stages of this disease. Thank you.

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Comment from: Donna, 45-54 Female (Patient) Published: November 18

As a student in a Medical Assistant program, I started noticing spikes in my blood sugar and elevated HCT levels, along with an aching kidney pain. I already have been diagnosed with osteoarthritis, so I thought that would be the primary reason for my joint pain. Diabetes is hereditary in my family, so I am going to get checked by my Dr. as soon as possible. Thankfully, we learn basic lab tests on each other in school with a Dr.'s supervision, so the results are accurate and can be used by the physician.

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