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

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

Comment from: GG, 65-74 Female (Patient) Published: July 12

My mother had PC and now I have been diagnosed with it. She passed away at age 83 after having it for five years. She was on Hydrea the last few years. We think that she quit taking the hydrea the last few months and she passed away with a massive blood clot. I have been undergoing phlebotomies for the last three months and seem to be doing well. From all I have read it seems that it is much better to do the phlebotomy rather than the Hydrea.

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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: 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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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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