Posted , 4 users are following.
I've had 6 venesections and my levels are not coming down much is there anything I shouldn't be eating I don't eat a lot of red meat don't really drink much alcohol.
1 like, 4 replies
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irene50060 Tina_72
Posted
My consultant told me to carry on eating as normal apart from breakfast cereal as they contain fortified iron it does take a while to come down I started weekly venesection so on the 1st July 2016 but this January I developed anaemia so he put me on daily folic acid and I changed from weekly to fortnightly it is coming down but, very slowly the people on this site are lovely and all very helpful as it is only people with hemachromatosis know how we feel you will always get support on this site. Take care and good lick for the future staying positive helps.
Kind Regards
Irene
bruce97898 Tina_72
Posted
It will work. Many of us start off slowly as our bodies adjust to the venisections. There are theories as to why, one could be that the ferritin in organs is returning to the blood as the levels drop, so there is improvement, but not visible initially. The other is you're creating more ferritin from available iron as iron drops. Also an improvement, but the improvement doesn't show in the initial lab tests.
Regardless, the treatment is effective and you are improving and you will see it. It's natural to want to see it right away, but you'll just frustrate yourself watching it closely.
If you're getting weekly venisections, diet won't matter much. If you get them monthly, I would say maybe look for opportunities to minimize iron intake.
Tina_72 bruce97898
Posted
Thanks Bruce for info I was on monthly venesection as it wasn't really coming down they have changed me to fortnightly so hopefully see a difference soon I go back Wednesday so will see then I'm trying my best not to get too stressed out as I know it will be a long process I just feel sorry for myself 😄.
bruce97898 Tina_72
Posted
It's slow though it seems like all of a sudden you have made progress. I remember starting out and wanting so badly for the darned iron to just go down. I always likened it to starting a diet. You feel deprived but don't see results for a while. Many of us see slow starts and even see it jump up at first and your first thought is "what if this doesn't work?" But don't worry, you are already making progress. ??