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I have had all of my Terminal Ileum and Illeocecal valve and appendix removed over the past twenty years due to severe stricturing Crohn's disease...the last of the surgeries leaving me with the inability to absorb B12. I have had B12 shots ever three months since. The problem I have is absorbing iron and folic acid. Folic acic supplements work really well in keeping that level up but keeping my ferritin on track is a different story.
Since 2007 I have been battling with this and in 2009 was finally given an infusion. My level was at 11 and my symptoms were many...severe heart palpatations, painful boils, acute tiredness and weakness, dizziness, fainting, confusion, lack of concentration, forgetful....depressed etc,etc. Four days after the infusion it was like I was reborn!! Suddenly I was the person I hadn't been able to be for years....it was fantastic. But sadly it didn't last. a few months later the levels were down again and for the next two years I was left to wait until my levels were sufficiently low enough for another infusion!!
Now I find myself with an ever decreasing ferritin level, even though I take regular prescribed supplements, and I am now told that a ferritin infusion is absolutely out of the question unless my levels are below 'normal' (10). Apparently the protocol has changed and it is regarded as too dangerous!!
So now I am left with an overwhelming sense of defeat as I know how this goes. As the levels drop my life will get smaller and smaller and my ability to deal with the everydayness of the Crohn's and the submeging effects of low iron will drown me out!!
I don't want to go down this path again. Is there anyone out there can give me some pointers on how to boost my ferritin?? Or any advice on iron infusions and if they can be obtained privately or through other NHS Hospitals??
Thanks for reading
What do you think??
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