r/Hemochromatosis

Hi all.

52M. Recently diagnosed with HH.

Extreme fatigue, brain fog, anxiety, irritable bowel, gut pain all culminated in finally getting this diagnosis.

First test

TSAt - 90% Ferritin - 680 Iron 44.6 Transferrin - 1.97

Second test after some blood testing and diet change

TSAt - 66% Ferritin - 509 Iron - 33.2 Transferrin 1.99

Has been over a month since I was last tested and I finally saw a hematologist today.

He suggested weekly phlebotomies, and we settled on starting at every two weeks and seeing how that affects my level of tiredness.

I want to get my numbers down, but I’m a little worried about giving every week is gonna wipe me out.

So just wanted to hear some feedback on weekly versus biweekly phlebotomies.

Right now I’m suffering from extreme fatigue as well as brain fog that is like almost a pain in my frontal lobe.

I did manage to donate blood a couple of weeks ago and I did feel better for a few days.

I am also curious as to when people do reach maintenance if they really do feel a lot better than when they began the journey. I realize that it will be different for everyone, but just looking to hear some positive stories.

Thanks.

Hi everyone!

I was just diagnosed last week and have to have a cardiac and abdominal MRI to search for iron deposits in my organs. I am terrified. I’ve had a neuro MRI before but i was young and didn’t have all of the anxiety that I have now!!

Is anyone able to share their experience with the cardiac mri specifically? Were you claustrophobic? How did the contrast affect you? Any side effects from it? How far into the machine were you? I am just such a nervous person and I am trying to be calm about it but I think hearing other’s experiences will help me settle down a bit.

Thank you!

I am a 21y/o male with weird symptoms that started from stress, namely panic attacks and extreme fatigue that has almost ruined my life. I’ve seen a lot of specialist MDs and all say I am totally healthy (heart, emerg). I am of Mediterranean and eastern euro descent.

I am being assessed for sleep-disordered breathing at this time, but I’m wondering if any of my symptoms could also be somewhat attributed to iron overload? My results are as follows;

Test 1 (2026 JUL 20);
hsCRP: 0.7 (normal)
Iron plasma; 31 umol/L (high/borderline)
TIBC; 61 umol/L (normal)
TSAT: 0.51 (high/borderline)
Ferritin; 359 (high)

Test 2 (2026 AUG 10);
Ferritin; 422 (high)
A full iron panel is about to be repeated.

Iron and high cortisol/ACTH were the only abnormal findings on any of my bloods. Liver and kidneys normal as well.

Recently diagnosed hh 40 yr old female. Just curious about liver damage and results. I have done one phlebotomy and am currently at 280 ferritin, tsat normal and all liver and kidney blood tests have come back normal. My doctor had me do a liver mri to check for iron build up. I’m still waiting on results and a little nervous, just wanted to get feedback on how common it is to have liver damage when caught early. Ferritin has never been above 500.
Of course I’m in contact with my hematologist and doing regular visits and testing just looking for some feedback.