Hemochromatosis Support Group

Welcome babywoo,
I can't remember exactly how long it took to get my results back, I was really not even considering the possibility of having this disorder. I do remember it took awhile. My first symptoms that kept me running to the doctors, was arthritis..I have bad hands, knees, toes,an artificial joint in my thumb, I got at age 42, a wrist fusion..and so on. many surgeries!. Then it was noticed by one of the docs, that my liver enzymes were elevated. It has taken me over a year and a half to get my Ferritin down to 50, I started at 1050, I done bi-monthly for a year, and 7 months of monthly Phlebotomies..it takes awhile, but as the #s come down, you do start feeling better, and most of the joint pain has lessened, I already have damage to some of the joints, that wont "go away"but the damage, I've read, should stop, at least that's what I'm understanding. I know myself, I feel the best I've felt in so many years that I cant even count. I will get my Ferritin checked next Friday, I'm excited. If your husband is diagnosed, please be sure to encourage him to keep with the Phlebotomies, you have to be aggressive with the treatment, get those #s down as quickly as possible! There are a lot of nice,informed people here, in my opinion, you just did for him almost as much as a doctor can, by trying to get more informed. Research, and learn this stuff. That's how most people have done it, including me. Most people have never even heard of this. We are all here for the same reason, you are not alone!
God luck and tell your husband the same.
Patty

babywoo, it took me about a week to get my test results back but with his numbers you can be pretty shure he has HH. My ferritin started at 2400 and I phlebbed weekly for a year. It made a huge difference im my life, I was 38 when diagnosed, and it was scary but now I am as healthy as could be and now at 43. This is a very treatable disease and we live long normal lives if caught in time. I hope they start him on phlebotomy treatments Asap, his numbers are high. good luck and keep us informed. Gidget

what was his ast /alt??

Gidget You should have been a Doctor:) you are so Good at this iron stuff

Hi Mike, I think I will stick to fire fighting, everybody loves a firefighter, :-). Have you got your maintenece schedule set in stone yet or still trying to figure it out? from the looks of it (on facebook) you are doing well. Ilove those E-mails keep them coming.


Babywoo, Mike had a good question about the AST and ALT. Those numbers are what alerted my Dr to further testing. You should call and see if the test results are in yet, 3 weeks seems like a long time. imo gidget

Hi everybody, thank you so much for your replies.. I feel more at ease talking to people who have personal experience with this. His "liver enzymes" I did not get the exact counts, but his rheumatologist and GI specialist said they weren't too high, about 3 times what was normal. He's had a chest x-ray, which was normal and an EKG, which was normal with the exception of a low heart rate at 49. He's just so incredibly tired and his joints are swollen in his hands and knees... he walks around literally like he's an old man versus 41. I have high hopes that after the phlebotomies he will hopefully regain some energy. He is totally phobic to needles, so not real keen on the treatment, but obviously will do it. I want to be as informed as possible, as it looks like every symptom is pointing towards this. Thank you guys again! I'm sure I will have more questions as we go : )

Hi babywoo,
My father's brother died of hemochromatosis 50 years ago. Anyone with Hemochromatosis is related back to a common Viking relative.

re your husbands arthritis & other issues. He needs to be on a gluten free (GF) diet. Hemochromatosis is often associated with gluten intolerance/celiac. Not so bad, he will just have to quit eating wheat, rye, barley & oats & maybe dairy until his system heals up.
here is a link to the GF forum where I post http://glutenfreeandbeyond.org/for...

there is also a gluten free forum on this board.

I have found it interesting reading about the "Celtic Curse".

I am sure your husband will be better soon. Did he also get gene test done for Hemochromatosis? You will want to get all your children tested for the genes & any other of his family members.

oops, I did not see an edit feature. I meant to say that the gluten free diet is forever, even after he heals. But he might be able to add in dairy after he heals - 50/50 chance he will be able to tolerate dairy.

Hi gf~

Thanks for your input. It almost seems like he is intolerant of dairy actually, but also craving a ton of sugar lately. If the kids have been asking why dad is eating so much sugar...very odd. He has been tested, more than 3 months ago and we find out on Wednesday. once we find out his results, I will definitely get my kids tested (ages 13 adn 10).

I have never heard of any HH patient being advised to be on a glutin free diet. Are talking more about celiacs?