I've heard Hemochromatosis called the hypochondriac disease once! Hemochromatosis can be the blame for so many different things. It affects your iron in your body which can throw your whole body out of whack! The reason you probably feel better after your cycle is that it is lowering your iron levels. As your body builds it back up, it causes you to feel bad again. Have the drs been checking your hemoglobin levels along with your iron/tibc/ferritin? If not, they should be monitoring all of it regularly.
Are they having you do phlebs along with your monthly cycles?

At this point my doctor told me to donate blood every 2-3 months. Then they will check iron level in March. My first donation was Friday. I didn't notice much change. My cycle started Sunday and as usual I'm beginning to feel better

Women usually don't learn that they have hemochromatosis until after menopause when our cycles stop and iron begins to build up. You remove iron from your body with each cycle. I went many years without a cycle and I believe that's when my iron started accumulating. My cycles are back and now I'm actually low on iron. Haven't had a phlebotomy since last March and then they only took 1/2 pint. I now have a standing order for my bloodwork to be checked every 3 months unless I feel the need for it to be checked sooner. I can usually tell when my levels are low. I start getting extremely tired and headaches.

Please make sure they keep tabs on your levels. You don't want it getting too low.

Hello najarra,

During the 46 years that I had periods, I always felt brilliant (energetic) once they got going. I was told over and over again that this was hormonal but now I believe if was because of HH. The other times I felt good was when I was pregnant or breast-feeding.

I was diagnosed post-menopause which for me was age 57 and I was diagnosed at age 59, by which time my ferritin was 387 and my transferrin saturation was 89%. I never felt depressed or lethargic and always had very high energy levels - much more than most people I know but I have read this happens with some people with HH. I did have other symptoms though and having read the posts on this site I can link them with having HH. I have always bruised easily and I have always got electric shocks off of a lot of things - until my ferritin levels were reduced by venesection treatment.

I hope that your venesections reduce your pains, exhaustion and digestive difficulties.

Christine

That's funny you mention getting shocked a lot! I use to get shocked quite a bit. Since my phlebs, it isn't as bad. I never would have thought it could have been HH!

Zappy1,

I got them frequently from cars when I touched them and some electrical equipment. Just as I was about to touch a car I would get a little sharp bit and a slight crackle which really made me jump as it hurt. My friends sometimes thought I was kidding.

Watches never lasted long with me - about a month and they failed. I have gone through so many watches in my lifetime and I am someone who keeps things until they are well and truly worn out. My last watch, post-treatment is still going strong and I have stopped getting shocks from things.

Christine

Hi Najarra

I haven't been on this site for a while as they changed its format and I don't find it that easy to use any more.
Back to your questions, before I was diagnosed with HH my doctor told me that I had mild IBS (irritable bowel syndrome) it plagued me for many years then after a chronic chest infection a switched on doctor investigated the cause and I was diagnosed with HH.
I read up on HH and many things I had had over the years were talked of as being part of HH, I had joint pains, muscle pains and IBS.

Almost as soon as I started with phlebotomy the IBS began to ease, my joint pains eased ad did many other things I had suffered with over the years.

I have been on maintenance for almost 2 years now and my IBS has completely gone, I still have joint pains but that is because the damage caused by HH is permanent.

In fact I saw my liver specialist yesterday and they said that my last scan showed that my hips have so much wear that I need to see a specialist to discuss the possibility of one or two new hip joints, and have arranged a scan for early next month to confirm the extent of the damage as my last scan was a year ago, and I am now suffering a lot of pain and am taking Tramadol pain relief tablets.

So your issues are consistent with Having HH, by the way I too suffer from static shocks and have bad tinnitus most of the time.

Take care
Regards
Steve

I was diagnosed in December at the age of 33. According to my dr. blood donations wouldn't be enough at this point due to my levels. I am currently going for phlebotomy every other week, and hoping I can switch to blood donations soon.