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

I feel as if I’m doomed to suffer

cloudone
cloudone

Still going through phlebotomy but instead of 3 weeks now it’s 6. I have an enlarged liver and stenosis and fibrosis.They found a growth on one of my kidneys along with the usual bowel. The headaches seem to be increasing again and my gut pain continues. After dealing with this for 2 and a half years and not getting much relief I feel as if I’m doomed. You go to doctors and more doctors and you don’t seem to get very far. Between my back being screwed together and the hemochromatosis the pain is becoming unbearable. All anyone can say is maybe it will get better. They don’t know. It really does suck.

brucekingfield
brucekingfield
That sounds like a lot to deal with. Sometimes one organ not operating right starts to drag on others. Was your ferritin high?

Do you have adjustments that you can make that can tip things the right way? A good dietician with knowledge of your problems could be helpful. Reducing salt and sugar made a big difference for me. Alcohol could also be a factor if you still have some.
cloudone
cloudone
It was over 1200 in the beginning that was 2 years ago. My gallbladder failed and they removed it. My GI track is just not working. I have diverticulitis also so I’m loving it.
denwhynot
denwhynot
I had a kidney growth too! Renal cell carcinoma caught early. Had robotic surgery and all is well. Just today I googled kidney stones and HH- and someone said stones are a symptom of HH. Maybe one more mystery solved? Comments welcome!
FPgal
FPgal
Hang in there. My ferritin levels were 2980 a few months ago (thanks mom and dad...). Now I am down to 400. I am on my 9th weekly phlebotomy. Some times I am fatigued but it's working! I eat almost nothing with iron in it. Check all the packaging labels and research which foods to avoid. I also take Milk Thistle which really supports the liver. I was having GI issues too but now they are going away. Eliminate alcohol and red meat. Crab is excellent as it is one of the few foods with zero iron. Also never eat anything with vitamin C in it if you eat anything with iron. Good luck to you and don't give up.