Iron deficiency and ME/CFS

  • Iron deficiency is quite common (especially in people who menstruate, vegetarians, and anyone with digestive issues that make it hard to eat meat and/or absorb nutrients). I recently saw something that said poor iron absorption is common in POTS as well.

    As it's known to cause fatigue, it's not surprising that iron levels are often one of the first things investigated in our condition.

    How many of you have had the entirety of your disease attributed to iron deficiency? Do you think it plays any role? If you've had low iron levels, did you manage to get them back up to normal?

    Oral iron supplements can be hard on the stomach and IV iron infusions can have side effects remarkably similar to our existing symptoms. I've had low iron for much longer than I've had ME/CFS, but had trouble tolerating supplements and am terrified of infusions. I'm trying again now a variety of different supplements slowly building up the dosage, and going ok, but who knows if I'm absorbing them. I wonder how long I should wait before getting my levels checked again.

  • @river Interesting post: Having blood tests for iron levels, can show it's ok but that's all relative to the time of the test. If I suspect or feel I am lacking in iron, I do try to eat iron enriched foods. I tend to feel a little better but only after a day or so. Juggling and balancing nutrient levels for a body with ME/CFS is always hit or miss with me. I haven't had ME/CFS attributed to iron deficiency but I had a hemochromatosis gene test done. It is a mutation in my family. One family member has the mutation and stores too much iron, ( has to give blood to get rid of the excess iron) I have the two faulty genes for hemochromatosis but a different type. I am a carrier of the faulty gene and my iron levels can fluctuate dramatically. Another family member cannot store or maintain iron levels and has regular infusions. If I can recall, in the very early days of my illness, I was often told that my iron levels must be low, or it is my thyroid. Testing soon dismissed these as possible causes along with a barrage of other tests. I'm wondering if there is any research on iron deficiency in ME/CFS patients. It would be interesting to see if there is data to support a correlation. Emphasis here on correlation, not cause. (effect not cause). How do we distinguish whether iron deficiency can trigger or exasperate PEM? Is it even related? soooo many questions ... 🤓

  • Community Moderator

    Just a quick (and very sorry if this is stating the obvious, but just-in-case, better safer than sorry and all that) mention that iron is one of those things that I'm fairly sure it's possible to have too much of as well (and that the consequences of having too much can be quite serious), so if people are taking iron supplements it might be an idea to make sure they don't overdo it.

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