http://www.endocrinology-online.com/Content/For%20Patients/Hemochromatosis.htm

That link says that it's hormone levels being out of whack. The iron messes with hormone secreting glands.

So it sounds like the excess iron caused my hypothyroidism. I had wondered about that.

Thanks for the info.

thyroid problems are very common with advanced hemochromatosis, I'm surprised the doctors didn't tell you that.

I was diagnosed with HH eleven years ago and not one doctor ever mentioned that to me. Quite frankly I think I know more about HH than any of my doctors. I've been to two endocronologists and they never mentioned that. Unreal.
I also belong to a HH group on Yahoo and only a few women there mention that they are hypothyroid.
Thanks.

Not every one that has HH has thyroid problems.

That's true, GidgetD. I guess everyone with HH is different. I don't have heart symptoms nor Celiac disease. I suppose it depends where the iron is deposited the most.
I should mention that my SF was 369 on diagnosis. I was fortunate that it was "caught" early.

I think you are right, it all depends on where the iron deposited in the body. I was diagnosed because my liver function was off. my ferritin was over 2400, My worst symptoms were joint pain, heart palpatation and badly discolored skin. I tend to load iron quickly but some load much slower, We are all very different but we understand all the different effects HH can have on a persons body, it is nice to be a part of this group.

I have HH and am so tired most of the time. Some days I have to drag through the day to function and those days particularly my brain function is slow. I've been to an enodchronologist and he said my functions were normal; which is hard for me to believe. I've gained weight which is a first for me. In addition have digestion problems. Isn't life a peach? LOL

I too am always tired. I have gained weight and I can't shed it.

When I have to go to bed it's not like "Oh I think I'll retire to bed tonight." It's more like "Zap."

I passed out on the recliner the other night and could barely walk to bed. Yeesh.

I guess I am fortunate when it comes to fatigue. I have so much more energy than I did before I was de-ironed, I used to just work and sleep, nothing else, I had no idea how bad it had gotten until after a year of weekly phlebs. I am 42 now and I feel like I have gained some of my youth back, I am doing so much more now and having fun with life.

What blood tests did you get and what were the results? If it's only TSH and not Free T4 and Free T3, it's a waste of time. My primary was only testing TSH and T4. I asked her to test T3 and it was way below normal. It proved I wasn't converting the T4 into the T3.

I've been to two endocronologists and they were useless. The first one took me off of Cytomel (T3) saying it doesn't help. This was two years ago. Now I'm taking both Levoxyl and Cytomel and I feel much better especially after getting phlebotomized yesterday.
The second endo only tested TSH (which is useless in my opinion) and then handed me a diabetic food exchange list!
I think most endos are focused on diabetes and haven't a clue on how to treat hypothyroidism especially those of us who don't convert the T4 to T3 (that's what gives you energy, T3).

Hi GidgetD,

I felt great the first year (1998) of phlebbing and then the fatigue came back (1999). Some days I would have loads of energy but other days I needed a nap.

Bronx, I still get phlebbed every three weeks, I do feel fatigue on those days and sometimes the next day but that is it. Do you have other problems that cause extra fatigue.

Other than the HH and hypothyroidism? Yes, I do have sleep apnea. I use a c-pap for that.

I have not had any thyroid problems and my thyroid function is fine - but I had horrible fatigue until about my 7th venesection (plebotomy). Now that I haven't had a venesection for three months, the tiredness and fatigue is coming back with a vengeance!

My Hemochromatosis nurse says they don't yet actually understand fully why the raised/stored iron causes fatigue, but she did also mention that it is something to do with the thyroid. She also mentioned that it may also be due to other parts of the brain...