1. < Digestive Health

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...

Interested in more discussions like this? Go to the Digestive Health Support Group.

forserco | @forserco | Jul 17, 2023
In reply to @joejan "Hoping to connect with others with this diagnosis. My husband was diagnosed with mild dementia in..." + (show)
@joejan

Hoping to connect with others with this diagnosis. My husband was diagnosed with mild dementia in March and prescribed 2 meds. Primary symptom was memory issues. He has recently also been diagnosed with Hemachromatosis which can also affect memory. Am now wondering whether he does actually have dementia and am hoping for guidance from others with similar experience. Thank you.

Jump to this post

The usual treatment for iron overload is to give blood at local blood bank every other month until the iron saturation level get to below 50% and ferritin gets back to within normal limits. I have been a blood donor for 65 years, not knowing that I had iron overload. Would have been dead long ago if by chance I hadn't been a donor. Get a simple iron panel blood test

REPLY
1 reply
twinnotes | @teinnotes | Oct 23, 2024
In reply to @forserco "The usual treatment for iron overload is to give blood at local blood bank every other..." + (show)
@forserco

The usual treatment for iron overload is to give blood at local blood bank every other month until the iron saturation level get to below 50% and ferritin gets back to within normal limits. I have been a blood donor for 65 years, not knowing that I had iron overload. Would have been dead long ago if by chance I hadn't been a donor. Get a simple iron panel blood test

Jump to this post

What were your iron levels when you got your blood work?
Maybe the highest. My daughter blood work just came back. 166 ug/dl

REPLY
1 reply
Mentor
Lori, Volunteer Mentor | @loribmt | Oct 23, 2024
In reply to @teinnotes "What were your iron levels when you got your blood work? Maybe the highest. My daughter..." + (show)
@teinnotes

What were your iron levels when you got your blood work?
Maybe the highest. My daughter blood work just came back. 166 ug/dl

Jump to this post

Total serum iron levels typically range from 26–170 mcg/dL in women. Your daughter at 166 ug/dl is within the range.
Is this up considerably from previous years?

REPLY
1 reply
twinnotes | @teinnotes | Oct 23, 2024
In reply to @loribmt "Total serum iron levels typically range from 26–170 mcg/dL in women. Your daughter at 166 ug/dl..." + (show)
@loribmt

Total serum iron levels typically range from 26–170 mcg/dL in women. Your daughter at 166 ug/dl is within the range.
Is this up considerably from previous years?

Jump to this post

I think last year was 150.

REPLY
psumom | @psumom | Jan 5 10:33am

Newly diagnosed and have had two sessions giving blood. Have others had follow up labs afterwards? I don’t seem to get guidance from my PA and seeing doctors takes months. It is my understanding you give blood week or weekly until numbers are good. What has been others experience? Also, any suggestions on getting a dietitian versed in iron overload.

REPLY
klgs | @klgs | Jan 9 12:58pm

Have you been diagnosed with hemachromatosis?

My father passed from it. They had to do audopsy. He was at 34 hospitals with no answers.

My brothers were tested and have it. They have to donate blood every month to keep iron down. It’s weird because I’m anemic.

Too much iron sits on organs and eats them.

REPLY
View MoreView Less
Please sign in or register to post a reply.