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.

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Gastrointestinal System
/ Hemochromatosis Support Group

Stomach Cramps

Irony
Irony
I started getting bad stomach craps back in june of last year and was diagnosed with HH in November. At the time my ferratin level was 6855 and I was sent for phlebs twice a week. In February, my ferratin level was down to 52 so they stopped the phlebs and I am on a 3 month break to see how I load up again.
The problem is that the stomach cramps never went away. They are almost a daily event and are so severe that they take my breath away. Has anyone else experienced these? When I go to by GP, he shrugs and says "I can't find anything" and offers me painkillers. I don't want to just treat the symptoms, I want to find the problem. Ideas?

Thanks,
Don
deleted_user
deleted_user
Try to get in with a Gastroenterologist. I have a lot of stomach pain and have a sluggish gallbladder. Works most of the time but when it flairs, it is painful.
Irony
Irony
I am seeing a Gastroenterologist at the end of this month, he is the one that diagnised my HH. According to my GP and the tests, my gallbladder is fine.
deleted_user
deleted_user
Glad you are seeing a gastro. They seem to be better informed about HH.
Irony
Irony
The test results are in and my ferratin level is 177. Not as bad as I thought but the bad news is that my liver numbers are 2-3 times what they should be. I'll be booking a phlebotomy tomorrow.
deleted_user
deleted_user
Irony, have you been tested for hep?
Irony
Irony
Yes and I'm fine
deleted_user
deleted_user
Irony, I'm sorry, refresh my memory. How high was your Ferritin when diagnosed?

I'm concerned. Liver enzymes elevated 2 - 3 times higher than normal - something else is going on besides the HH. Glad you are seeing a Gastro, they will find out. Were you a drinker?
Irony
Irony
On diagnosis, my ferratin was 6855 but there didn't appear to be any organ damage. My liver numbers are what made them check for HH and once my ferratin went down, my liver numbers went down
too.Now that my ferratin is up, so are the others.

The odd glass of red wine and an even odder single malt scotch are about all I drink.
deleted_user
deleted_user
That is really strange. HH affects everyone differently I suppose. I have liver disease and HH has not affected my numbers in the least.
In fact, liver enzymes are normal, have been for years. Now my viral load which shows the amount of virus (HepC) I have in the liver is in the 10 millions and my alkaline phosphate is elevated which is a good indication of liver disease.

Having lived with liver disease for 25 years, I wouldn't be so quick to blame it on HH. Stay on top of it - make sure your gastro runs every test there is on the liver. If you've not had a biopsy, that might be a good place to start. It will tell you exactly what is going on.
deleted_user
deleted_user
Hi Irony,

I am not sure that your stomach cramps are caused by or even related to HH. Could be a completely different mechanism causing the problem.

Did you try tinkering with your diet to see if you have any food allergies/insensitivities?
deleted_user
deleted_user
Irony ,there is another guy in this group that has the exact same problem as you and also the same treatment ,pain pills ,but I do recall someone saying at one time that it could be caused by the excess iron being pulled from the liver ,hope there is an explanation for you soon ,I wish you the best of luck ,Queenie