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

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

Comment from: petero, 45-54 Male (Patient) Published: May 19

I found out that I had polycythemia more than 10 years ago. I am nearly 50 now, but my blood count is erratic. It can be fine for a few months and then escalate rapidly. It varies weekly and quarterly. I used to smoke, but apparently this is unlikely to be the cause. I do get really tired at times, but I just have to live with it. No one else in my family suffers from this condition, but both my parents died from heart attacks. That might be a connection, my consultant says; maybe, maybe not. I wish I could avoid all the hospital appointments.

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Comment from: Ian, 45-54 Male (Patient) Published: September 08

My problem was discovered during a search for the cause of severe back pains. The doctor and even a neurosurgeon had exhausted all the obvious. A blood test then revealed a highly elevated red cell count and when questioning me about my lifestyle, we found that I had many symptoms of secondary polycythemia. These included disturbed sleep, fluctuating blood sugar levels, bronchial infections, etc. At 48 years old, I was really glad this was found, as I have lost most of my family to chronic heart disease.

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Comment from: couldbfishin, 55-64 Male (Patient) Published: August 15

I am a 57 year old male who has never smoked. About three years ago my doctor told me the reason I was tired was that my testosterone (T) level was 26, the lowest he had ever seen. After a few months of rubbing cream on my shoulders, my T level had gone up only a few points, and remained way below normal for my age (600-700). After about a year of testosterone injections, my T level averaging about normal for my age, but I was tired once again. Blood tests showed I had high hematocrit and RBC counts and I was diagnosed with secondary polycythemia. I have been undergoing therapeutic phlebotomies for about two years and it seems to help. I started three times a week, then twice a week, then once a week, now I go every 3-4 weeks for a CBC and phlebotomy if my hematocrit is over 50. I felt a little sorry for myself a couple of times, but meeting people with cancer at the oncology clinic where my hematologist practices, cured me of that. Now I see my phlebotomies as a chance to meet some real nice people and to make them laugh for a while.

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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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Polycythemia - Symptoms Question: What were the symptoms of your polycythemia?
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