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Inability to maintain Ferritin levels even with a good diet and oral supplements. Any Advice??

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IndieHannah
IndieHannah

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??

 

0 likes, 4 replies

4 Replies

  • patricia86015
    patricia86015 IndieHannah

    Posted

    I have had similar problems but not lucky enough to get an infusion. I have taken Spatone liquid iron supplements, which I got direct from the pharmacy, helped a bit. However they did not help dehydration problems. Now I am on loperamide capules that slow down food output and help my hydration. My weight has gone up a bit since which is an indicator that nutrients are being absorbed better. I eat plenty of asparagus as I cannot eat spinach due to OFG. My levels are not as high as they should be but at least I can lead a fairly normal life be as active as I was before. I think the cut off levels for infusions are too low but have not found a solution to that.

     

    • IndieHannah
      IndieHannah patricia86015

      Posted

      Thanks for your response.....I take IronOrm Liquid supplement but still my levels fall!!  I use Questran (Cholestyramine) to reduce diarrhoea and bile acid which is as much about the loss of bowel as Crohn's symptoms.  Loperamide gives me terrible pain so cannot use it.

      I suspect that its the loss of bowel that is the cause of my problems.......and I find it hard to accept that its better for a person already struggling day to day with malabsorption to allow their ferritin/iron to get to a ridiculously low level before anything can be done.  

      Can i ask, what is your ferritin and hb level??

      My weight has been stable for a few years now but that hasn't been reflective of my ability to absorb certain things.  In fact, my deficiencies have only really occurred since my last two surgeries.

      And I've stabilized my weight in that time!!

      Oooh, it's a complex world this Crohn's business!!

  • patricia86015
    patricia86015 IndieHannah

    Posted

    Last figures I have are for Nov 14. Ferratin 12 and Hb 10.9 Should have mentioned I get B12 injections like you. When my ferratin level was low GP referred me to the hospital as infusions cannot be done at the surgery, but hospital said my level was not low enough. I was very weak at the time and ended up with kidney failure due to dehydration although I was drinking 1.5 - 2 litres per day. I was told to check in at A&E due to potassium level of 7. Hospital put me on saline drips and after that on loperamide and sodium bicarbonate. I feel so much fitter now although ferratin was never addressed. I mention all this as your symptons are much like the kidney failure symptoms I had except that I also felt very nauseaus. If you think that may be your problem get your creatin and potassium levels checked. Another sympton is low blood pressure which causes the dizziness. Best of luck.
    • IndieHannah
      IndieHannah patricia86015

      Posted

      Hi Patricia, thanks for your respononse.  And blimey, your levels are super low. There's so some indecision around the bottom line for ferritin. Some say 10 some say 12.....but really, who cares when its that low it needs a boost.  You need a boost.  I know that the infusion is a risky business, but they keep a very close eye on whats happening and how you respond and the benefits are amazing.  Do you have a GI Consultant or specialist nurse that could help with a referral.....you are iron deficient anaemic!!

      And thanks for the heads up regarding the kidney failure.....my blood pressure is always low...but I'm not sure creatin and potassium have been checked.  I'm in for a blood test soon and back at the hospital on the 4th Feb to see the nurse/consultant.

      I'll let you know how it goes.

      Thanks again.....and I hope you get your iron deficiency under control soon

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