Hereditary hemochromatosis, Crohn's disease and chronic fatigue
The last two years I have had a host of issues and my labs were everywhere. My liver enzymes were low but my liver was saturated with iron at 75%. Finally called the Mayo because the 6 different doctors I have don't communicate. Chronic fatigue and brain fog have been the two most difficult things to deal with. I took a 23andMe test at 27, and it came back with 2 predispositions, Chrons disease and HH on the HFE H63D gene. I got it from both parents who were carriers. I tried finding solid info on HH but feel more lost. My biggest problem is fatigue, it never goes away. Hoping the Mayo has a better understanding and solution to the problem. I can not do phlebotomy but there is a medication my Dr mentioned. Have not seen a hematologist oncologist yet due to a 6 mo. wait.
About two years ago I was really ill, with a high fever, dehydrated, and couldn't eat plus body aches. A year after that my Dr.did labs and my liver enzymes were out of control and my body had too much iron. I remembered that 23andMe health report and showed it to my doctor. She sent her own test out and that's what it was. Since then a bunch of other issues have come up. My hormones are everywhere, low RBC’s for a year, high CO2, low glucose, and just found out that my thyroid has a large cyst on the right side, and is inflamed. Constant bladder infection back to back, body aches. There is not a lot of info on HH, just hoping that the Mayo can help.
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@koref, good to hear that you have reached out to Mayo Clinic. At Mayo Clinic, experts in hepatology, radiology, laboratory medicine and pathology, oncology and liver transplant work as a multidisciplinary team to create a personalized treatment plan designed to meet your needs living with primary, or hereditary, hemochromatosis.
Do you know that the Florida campus of Mayo Clinic has a specialized Hereditary Hemochromatosis Clinic? It provides state-of-the-art diagnostics, treatments and education to patients who have hereditary hemochromatosis or who are at risk of developing it. This includes tests to identify the specific gene mutation that's responsible for your hemochromatosis. Knowing the exact mutation or mutations responsible is helpful in treating the condition and screening family members who also may be affected.
Which Mayo Clinic did you submit a request for an appointment to?
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5 ReactionsRochester, I live in Minnesota.
I know Florida has a unit just for HH. My biggest problem is finding out what is going on and why I feel like crap everyday. My liver is 75% saturated, I get back to back UTI, s with pure blood. My joints hurt and I have a low fever.
I am also dealing with a family who doesn't think HH is a big deal or that it makes one ill. I have looked for information and resources but don't get very far. My wrists and ankles always hurt so do the muscles in my lower arms. Hopefully the Mayo calls tomorrow.
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