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Looking for advice..hemochromatosis

Posted by Nothing Helps @oliverlaurena, Apr 27, 2014

Looking for advice...I am 37 years old. For the last two years I have been experiencing food intolerances and mouth sores. The doctors have run all the lab work possible, allergy tests, and have done a colonoscopy. Nothing has been found. The only thing that seems to help is not eating gluten. But, even with that I still have really bad diarrhea around my period. This month the diarrhea is so bad I have had bleeding hemorrhoids for a week now. Taking my breath away pain.....Please HELP...

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psumom | @psumom | Mar 15 5:24pm
In reply to @microcos "I was diagnosed several years ago. I had intermittent fatigue, joint pain, hemorrhoids, I seem to..." + (show)
Profile picture for microcos @microcos

I was diagnosed several years ago. I had intermittent fatigue, joint pain, hemorrhoids, I seem to be getting sores from biting my cheek, although some were not from a bite injury because they weren't on my inner cheek.. I constantly had digestive noises. One day I started having difficulty with my eyesight while reading. I'm probably missing other issues

I tested high ferritin, very high saturation, slightly anemic. I went out of town to get genetic testing because I was told I had to wait, with no timeframe, to get an appointment in town.

I did a year, 1 unit of blood every 2 weeks. Now yearly I do 1 to 3 donations. My saturation can still be very high. My ferritin target is 50. I still have intermittent joint pain. I bite my cheek stil occasionally which results in a blister. Intermittent fatigue, I woke up freezing a few times even though it's not cold

And more that I am forgetting, ....... Oh.. brain fog .....

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Good to read your much better. I especially noted the eyesight issue. Lately I have some problem but then I’m old and maybe cataracts.

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psumom | @psumom | Mar 15 5:29pm
In reply to @microcos "I was slightly anemic when I was diagnosed. You've been genetically tested ? If not, you..." + (show)
Profile picture for microcos @microcos

I was slightly anemic when I was diagnosed.

You've been genetically tested ?

If not, you should, regardless,
if your brothers have it.

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My mother was from Ireland. Ireland tests for hemochromatosis because it is extremely prevalent in that population. By chance my GP put in a genetic test because he was stumped by why I have essential vibrations. Bingo. This was just discovered and I’m 77.

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