Hemochromatosis Support Group
Hemochromatosis is a hereditary disease characterized by improper processing by the body of dietary iron which causes iron to accumulate in a number of body tissues, eventually causing organ dysfunction. It is the main iron overload disorder. Hemochromatosis is notorious for having symptoms that are often initially misattributed to other diseases.
Hello all,
I'm a male in his early forties, just diagnosed with Hemochromatosis, had 2 phlebotomies so far. My ferritin level is not too bad (~400) and it doesn't look like I have any liver damage, although I do have some iron loading in my liver (MRI results). Anyway, I also have IBS which, in my case, mostly involves (nearly constant) abdominal pain. I'm wondering if my IBS may be linked to the hemochromatosis, but I've had trouble tracking down any information. If anyone knows whether there may be a link, I'd be really greatful to get some info. The IBS is really impacting my quality of life and if my de-ironing might help with the pain that would give me a bit more hope!
Since being de-ironed and now on maintenance the IBS has totally gone and the doctors have finally confirmed that I didn’t have asthma either.
It took several years before I was finally diagnosed with HH, I think my original doctor was beginning to think I was a hypercondriact.
Luckily I saw a different doctor when I had a chest infection that I could not shake for 3 months and he did blood tests to get to the bottom of the cause he didn’t know much about HH before he investigated me.
That’s the trouble with HH it manifests as so many other conditions.
Take care
Good luck Steve
New to the forum but I stumbled across your IBS relation post. I had been diagnosed previously with IBS and was trying a prescription, which was barely working so when I returned to my Doctor to discuss further. They ordered some blood work and this is when they noted my high iron levels, shortly after I was diagnosed with haemachromatosis. I’ve had venesection sand got to a good level, I now do blood donations, but the stomach ache varies from day to day. I was also curious was this actually IBS or related to the Haema!?
I also have HH and IBS. I've been wondering the same thing, if there is any connection between the two. My levels aren't high enough just yet to start phlebotomy treatments but I'm getting closer. Please keep us posted if your stomach gets better with treatments!