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

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

Comment from: Elaine, 65-74 Male (Caregiver) Published: December 20

My husband's polycythemia was due to high platelet count, and he was found to have kidney cancer. The kidney was removed with no chemo or radiation. He is on hydroxyurea and has blood drawn periodically. He is 73.

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Comment from: 45-54 Male (Patient) Published: February 06

I am a 45 year former pro athlete who was recently diagnosed with polycythemia. My hematocrit was higher than my doctor has ever seen, and I'm lucky to be alive. I had a DVT and a Pulmonary Embolism, but survived both of those 4 years ago. I am awaiting my first trip to the hematology doctor to get some blood taken.

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Comment from: Sad Mom, 35-44 Female (Patient) Published: May 04

My Polycythemia has been found after having a number of miscarriages. Blood tests have revealed my Haeomocrit being high. I have been a lifelong smoker and this may have contributed to my condition. I'm pregnant again, and have had to quit smoking and go on Aspirin products to reduce my blood count in order for this baby to (hopefully) survive.

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Comment from: Disgusted, 45-54 Male (Patient) Published: April 12

My red blood cell count shot up due to my receiving testosterone shots. I'm a 47 year old man who was feeling tired, anxious, and was advised by a 'Testosterone" specialist that my "T" level was low. A few months after taking the shots, the RBC shot way up, I had to donate blood to lower my level, needless to say, I've stopped receiving testosterone shots...Be wary people, it's not for everyone.

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Comment from: lisag323, 45-54 Female (Patient) Published: February 25

I have just been diagnosed with polycythemis as a result of smoking.

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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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Polycythemia - Experience Question: Please describe your experience with polycythemia.
Polycythemia - Symptoms Question: What were the symptoms of your polycythemia?
Polycythemia - Treatment Question: What was the treatment for your polycythemia?

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