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

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

Comment from: DBoe, 55-64 Male (Patient) Published: May 01

My polycythemia has pushed me into thrombocythemia, too many platelets. I have had a blood clot and a stroke and I am thankful I can still work and live. This is also due to a Jak2 defect that causes my bone marrow to make too many red cells and the platelets try to keep up. When I had my stroke 14 years ago, my blood was thicker than Karo syrup.

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Comment from: Chuck, 45-54 Male (Patient) Published: April 01

Jak2 gene mutation was the cause of my polycythemia. I have flushed face, headache, red eyes, dizziness, hard time concentrating, fatigue, double vision and a pain/weakness in left arm. First diagnosis was migraines but treatment didn"t help. After further blood tests it was found that I have elevated red and white blood cells. Tests revealed it was primary polycythemia vera due to the Jak2 gene mutation. Interesting fact about that gene is its proper function is to turn your bone marrow on when you have a trauma like a loss of blood to quickly make up the difference of lost blood cells that"s why it produces both white and red.

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Comment from: Shanna, 45-54 Female (Patient) Published: October 15

My polycythemia is secondary to Sleep Apnea. I now use a C-PAP machine and oxygen at night and my RBC stays pretty normal.

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Comment from: Barb, 55-64 Male (Caregiver) Published: March 28

The doctor found too many red blood cells in my husband"s last physical. It is due to excessive alcohol over decades of abuse. The doctor says it can be reversed if my husband stops drinking. He also smokes. Does he care? No. Did he stop? No.

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Comment from: minna, 65-74 Female (Patient) Published: May 09

I have been diagnosed for a couple of years with primary PV with the Jak2 mutation. I at first often had very red, bloody eyes. If I wiped the corners, the tissue came away with a bit of blood. Anyone out there with red eyes to the extreme should be tested with a CBC. I now know, that was one of the first symptoms of PV for me. Also, my tan was very reddish all over my body. Now, if my blood count goes too high, it is sometimes caused by some med I've been taking for pain, or an antibiotic; cause the meds sometimes cause a urinary tract infection, and this makes my blood count get too high. It happened last month, and now my eyes are red. I am going for a phlebotomy today. I've learned that red eyes are a sign that I need a phleb. My right eye is worse, and is entirely red, to the extreme. Hope this helps others.

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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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