Reducing TS% in maintenance
Posted , 3 users are following.
My TS shot up to 73% when I began maintenance with my ferritin at 51 on 1st March. My latest blood test shows TS at 74% and SF at 50. I understand that as ferritin rises the TS is likely to come down. However, there has been little movement in the SF for 12 weeks. I was wondering whether to get some liver to get me loading again. I have already been eating red meat to no avail.
Just to be clear, I don’t necessarily want to load iron. I want to find a way to get my TS down. Over 75% is considered to be toxic by many professionals and I feel like I’ve got a hangover every day.
0 likes, 16 replies
zach76568 eric89660
Posted
eric89660
Posted
zach76568 eric89660
Posted
eric89660 zach76568
Posted
zach76568 eric89660
Posted
i feel ya, i have been on maintenance for 10-15 years and i'm 41. for whatever the reason is, my saturation stays high. i feel like normal when my ferritin is around 70. but everyone is different. there are studies and people on this forum that have evidence or proof that our high saturation is toxic. i have taken all of the info and studies to my doctor here in ohio. they are part of a group of hematologist, he said that they all agree - that as long as our ferritin stays within normal renge, not to worry. i am not symptomatic with a high saturation. but congrats on getting to maintenance stage, your veins will finally get a break from those 16 gauge needles!
sheryl37154 eric89660
Posted
Hi Eric, I have been out of touch for nearly 3 months but back again. I had the same problem of still having high TS% while on 3 monthly maintenance for years. I have persisted in having venesections every 3 months even when my ferritin is now about 24-27. I don't feel any the worse for having such a ferritin level.
I have noticed that my ferritin level does not get much less with 3 monthly venesections, although it has been down to 13 when I was having 2 monthly venesections. 4 monthly venesections were a disaster and my levels rose and I found I was having chest pain and arrythmia when my ferritin hits 80.
But finally this year, after persisting with these 3 monthly venesections even though my ferritin is in the 24-27 range, my TS% has finally come down to normal levels.
And you are right, Prof Pierre Brissot of Rennes, France who does a lot of research on haemochromatosis has found that continually high TS% for more than 6 years is toxic. I have spoken to him personally and showed him my spreadsheet of test results and he suggested that I have smaller amounts taken more often. But my veins have had enough of venesections and I don't want to increase frequency.
But I have become successful in reducing the TS% another way. A dr would reduce the frequency of venesections of such low ferritin but my haemotologist is happy with what is happening because I feel better for it and I have been dealing with this since 1998.
Prof Brissot's team also suggest using CoQ10 and Vit E to improve the health of the mitochondria which are damaged by high TS%, I have also found a great improvement to how I feel after I started taking 100 ml aspirin a day.
Drs and haemotologists don't know enough to be concerned about continually high TS% so we have to do our own homework and be strong about the knowledge and experience we have gained.
Good luck.
eric89660 sheryl37154
Posted
eric89660 sheryl37154
Posted
sheryl37154 eric89660
Posted
That's right. Venesections should be regular, maintenance at 3 monthly or if you are loading slowly, then at least four monthly. Generally it is best to get your ferritin down to <50 first then allow it to raise to your optimal level, where you feel best, if you are not comfortable at <50.
Optimal levels are individual. Mine was about 34 for a long time but I still had high TS%. Regular 3 monthly intervals have eventually brought my TS% down and you need to aim for that after getting down to <50.
When you get that low, your ferritin levels will not go down in bit chunks like one expects given that we are supposed to drop an average of 25-30 per venesection. It will be small amounts and may even elevate at times. You have to be persistent.
Some drs or haematologists may tell you a high TS% is not important but if you still do not feel good, it is important to you. Perhaps find Prof Brissot's research on high TS% to support your case.
sheryl37154
Posted
"big" - not "bit" chunks.
BTW, this information relates more to homozygous C282Y, not H63D, which generally eventually stops loading, and you can get away with irregular vx only when your ferritin rises.
eric89660 sheryl37154
Posted
I was expecting some people to tell me not to do it at this level so I’m glad you have done it and it has worked out all right.
sheryl37154 eric89660
Posted
Check on it but I think I read that 100mg of aspirin daily does not cause those problems. I am prone to duodenal ulcers and I can't say that the aspirin as aggravated that issue.
eric89660 sheryl37154
Posted
miller.jones eric89660
Posted
if you have been checked out for other problems liver so on it is nothing to worry about (if you have not been checked out and your numbers are like this get them checked to rule out any problems)
A fair few people with this tend to have low vitamins in some areas which can cause this.
eric89660 miller.jones
Posted
Yes,thanks. My liver,vitamins and other bloods are all right. If anything,my ALT and AST are the lower end of normal (17 & 15), up from 12 each last time.
sheryl37154 miller.jones
Posted
Actually, I had a personal conversation with Prof Pierre Brissot, a well known and respected haemochromatosis researcher, showed him my spreadsheet of numbers indicating a constant high TS% for years after reaching ferritin <50, and he has no explanation for those of us that confinue to have high TS%, except that it is not good for us. This often happens with those with an aggressive homozygous C282Y.
During his keynote address, he described that the TS% is the last element to drop. On a graph, while our ferritin level reduces with venesections on a diagonal line, the TS% is more or less continues as a horizontal line until the very end.
For those whose TS% levels do not behave themselves and drop at the very end of de-ironing usually continue to feel much like they did at diagnosis. A couple of days ago I told my dr that I am feeling good (I don't think she hears that very much), and at the same time, my TS% levels have finally dropped to normal. I have had two 3 monthly tests prior to venesections with normal TS% levels now. My ferritin levels are in the 20s.
Of course, I have to say everyone is different but one can only keep trying and ignore the text book results.