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I've looked before posting but I can't find much about this..I got my latest results today.8 weeks and 4 treatments ago they were: SF 486,TS 65%.Today SF 408,TS 86%.I haven't had any infections that I know of and I know that the amount you drop goes down when you get lower.But can anyone account for why my TS% should jump back up like that?
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sheryl37154 eric89660
Posted
Hi eric, I think we have discussed this before. I have the same problem although I my ferritin has been <50 for years. I personally spoke to Prof Pierre Brissot of Rennes, France who I have found is the only researcher who addresses TS% to any degree.
I was worried because Prof Brissot refers to high TS% as being toxic. I came away none the wiser really, although Prof Brissot suggested I have more frequent venesections with a lesser quantity draw. He did speak on TS at the conference explaining that the TS% does not reduce till ferritin has been reduced to <50. He demonstrated that with a graph by showing ferritin line coming down at a diagonal line, but the TS% stays horizontal at the top till the ferritin values were completely at the bottom of the graph.
Not that we stay at a straight line for either of course. As our TS% is the result of our serum iron divided by our TIBC, then really the cause is behind those two results. E.g. I have a result recorded wherein my serum iron was 47H and my TIBC was 44L resulting in a TS% of 107%H and my ferritin was only 57, another result in same order: 25 - 50 - 50H - 67, and another 30 - 58 - 52H - 24.
So it just does not seem to make any sense. The only thing I can think of is that I had 9 years of severe symptoms before I was diagnosed and treated, and not all damage done by that is reversed.
My notes show that the lowest TS% I had was when I was being venesected 2 monthly after bad results when haemotologist tried 4 monthly. I had two results of 42% and 44%. Everything was low then except for the TIBC which rises when the serum iron is low.
For curiousity, they read in the same order as above:
27 - 63 - 42 - 18
26 - 60 - 44 - 36
eric89660 sheryl37154
Posted
Thanks Sheryl.You're a mine of information.The only irony is that after 6 months of fortnightly venesections I have started to feel slightly less fatigued in the last few days.I know from the past,however,that this seems to be a cycle and the tiredness can come back just as bad.
sheryl37154 eric89660
Posted