Quote:
Originally Posted by marmab
My natural EPO level is 396. My doc said that there was "room" (a count under 500) to try Epogen. Is it worth giving it a try? Seems like my kidneys are doing their thing, trying to stimulate the cells. Does natural EPO get as high as 500? Assuming my EPO stays around 400, maybe I should see if my Hgb holds at 9, or even increases.
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Marmab,
Two answers for the price of one! That other answer was so long, I thought I'd better contribute what little I know about EPO in a separate answer.
My EPO level has been tested twice, about three months apart, at two separate labs. One test showed a level of 1551, the other 1096.
My favorite doc, Matthew Olnes, who just left NIH for Alaska, told me when I was asking about ESAs (synthetic EPO), that they work best in folks with EO under 100, but sometimes work for folks in the 100-500 range. But I don't have the actual data that led him to say that. I'll go look for it.
My kidneys seem to be screaming for more blood, whereas yours are just mildly annoyed, but my HgB was 6.2 when I was first diagnosed, so they had more to scream about. I'll let you know if I find that research.
BTW, I know your HgB is around 9.0 now. You may have already answered this question; if so, pardon my asking again. Do we know how long your Hgb has been sliding? For example, based on old blood tests from annual well patient visits, etc. I know that my Hgb was 13.9 in 2005 and 9.2 in 2009. Then it hit 6.2 in 2010. And I was not falling over, but I was moving kind of slow.
My thought is that I had a long slide, which made me a little more tolerant of low Hgb. I am not quite the heavy-duty aerobic person that you are, but, with my HgB in the 8s or 9s, I can work in the yard or garden all day, run a chainsaw all day, ride my bike for ten miles, etc. It may be that, if you're recently in the 9s, as others have said, your body will adjust. But everyone is different, so it's hard to predict.
Take care!
Greg