Very High stored iron levels..any thoughts/experiences?

Discussion in 'Fibromyalgia Main Forum' started by debshomeed, Dec 10, 2008.

  1. debshomeed

    debshomeed New Member

    Hi, this is a first time post, though I've been lurking and been a member since 2006 - the year in which I came down with CFS after a virus. Recently I've a had a big relapse in my health with my gastrointestinal tract being hit pretty hard. I lost a lot of weight (and didn't have much in reserve to begin with) due to nausea, pain, diahorrea and not being able to digest food. I'm very slowly improving (I'm thankful that I'm able to eat and digest some foods now) but still housebound most of the time.

    Anyway the Gastroenterologist specialist ordered blood tests and he was quite concerned with my stored iron levels (164) and low albumin. He said that this is probably do to an inflammation or infection and will retest my blood in 4 weeks time. If it hasn't gone down then he will do a colonscopy for possible inflammatory bowel disease. Has anyone had this happen to them and did your levels go down? Thanks

  2. Juloo

    Juloo Member

    Wouldn't he also be concerned that you have hereditary hemochromatosis? I don't know what your age or genetic background is, but this is most commonly diagnosed in midlife in those of caucasian/northern European heritage. Even those who only inherit it from one parent (who are essentially carriers) can have higher iron levels than people who are not carriers.

    Do you have parents or siblings with a similar problem?
  3. debshomeed

    debshomeed New Member

    And they were in the normal range. My parents and siblings don't have issues with high iron levels.
    My doctor thinks it is probably due to infection or inflammation. But I'm not sure how it works, wouldn't iron be used up when fighting an infection. The only thing I can think of is that somehow my iron levels keep accumulating because there is some blockage to it being used??
    The puzzling thing is I haven't been taking any extra iron in the last 2 months nor have I been eating much red meat at all (can't digest it well anyway- in fact undigested meat fibres were found in a stool test some 3 months ago). I would have thought that I would be anaemic by now because I have had serious food absorbtion issues the last few months cumulating in an almost total shutdown of my digestive system.
    Thanks for your input and any further thoughts would be appreciated.

  4. gapsych

    gapsych New Member

    My BIL who is an oncologist, says he likes to see at least a ferritin level of 50 and does not adhere to the incredible range unless medically necessary.

    Right now mine is 27 which is in the normal range so I am going to start iron, the other option is to eat more red meat but I am mostly vegetarian and now have a hard time digesting it.

    Hopefully, this will bump your post to get other's opinions and that this gets resolved.

    Take care.

  5. Juloo

    Juloo Member

    I'm really curious what your dr. will find with further testing. Could you keep us updated?

    Ever since I first heard of hemochromatosis so many years ago, I've always had it in back of my mind that I'm at risk. I certainly fit the profile, and now I have no immediate blood relatives that might tip me off to the possibility of it being in the family. Although I've had my iron checked periodically with okay results, I remember my obstetrician actually took me *off* iron supplements. All the ones I tried were making me sick, but when she saw that my numbers were actually 'good and high' (I believe is what she said), I was excused from having to down them every day.

    I read somewhere that taking vitamin C can also increase iron storage.

    Anyhow, I really hope you find out what is causing this -- the digestion problems you describe sound very serious. I know that the genetic disorder isn't diagnosed until (usually) midlife, but I don't know how fast someone can go from a normal iron level to excess.
  6. debshomeed

    debshomeed New Member

    I'm almost 40 so perhaps it maybe a genetic disorder, I'm not due to see my specialist until 13 Jan.

    I do actually take a fair bit of vit C (about 3000mg/day)and more when I feel like I'm coming down with something.

    When I was pregnant I actually was a bit on the low on iron and needed to work hard to keep them up.

    My digestive issues are slowly resolving, the major turnabout came about when I added LB17 probiotics. It is such a relief to have almost normal bowel motions (after many months of alternating diaohhrea/constipation), to be able to eat almost normally, not to have intestinal spasms and cramps and not to feel nauseus most of the day.

    thanks again for more input