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Primary Polycythemia (polycythenia rubra vera)

bigbrian58

New member
Newbies
Joined
Oct 26, 2003
Messages
38
Guys,I was wondering if there was anyone else out there that is suffering from this illness ?
 

ChisledFat

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Registered
Joined
Jan 3, 2005
Messages
52
Not suffering from polycythemia but my hematocrit does get a bit elevated on occasion. I give blood every 2-3 months to keep RBC count in check.
 

traveller

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Newbies
Joined
Jul 30, 2006
Messages
1
I was diagnosed with secondary polycythemia. My ENT and my hematologist both think that I don't get enough oxygen when I sleep despite my use of a CPAP machine. When I first was diagnosed, my primary care physician stopped my HRT because the testosterone could elevate red blood cell production. After several months he let me go back on at 2 mg/day instead of the previous 5 mg day. After 6 months of reduced HRT, I decided to supplement my dosage by other means. Oddly, for me, the testosterone increase has not affected my hematocrit which increases at the same rate without or without HRT.

I get bled (phlebotomy) about once a month so that my hematocrit is maintained at ~45. Since I polycythemia, my blood is thrown away instead of being used elsewhere. Wasting the blood is a shame since there's nothing wrong with it, i.e., I have no communicable diseases, and I don't have undesirable behaviors/habits that could endanger potential recipients.
 

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