Hemochromatosis Support Group

Hi Tiffany,
Please have your husband ask his gastrointerologist about Milk Thistle. My husband was diagnosed about 5 years ago, and his ferritin levels have dropped to the normal range without phiebotomies, just the milk thistle, but each case is different.
Good luck!
MountainQueen

Hi Tiffany,

I'm sorry to hear that your husband had such a high ferritin count, I'm happy to hear he has started doing something about it.

I was diagnosed about 4 months, ago, since then I've had about a dozen sessions with the phlebotomist and my ferritin has dropped from about 1900 to about 1100, my % saturation has dropped from 94 to 77, and my unbound capacity has increased from 19 to 74.

Would you mind saying what your husband's % saturation and unbound capacity counts were?

I believe that the ferritin count itself is an incomplete measure, it must be considered along with the other things reported in an iron studies test and I think we could all benefit if someone could expound on that topic.

Curiouser and curiouser...

Hi Tiffany,

Sorry about your husband. I was 3,500 with a 100% saturation rate, a badly swollen liver, chrosis, and billiary duct disease. I was de-ironed in 1994.

The de-ironing (theraputic phlebotomies) process will take as long as it is going to, to get him down to normal levels. After he gets down to normal he will need to work with the doctor to schedule the amount of phlebs he is going to need to keep the saturation rate low and the ferretin down for the rest of his life.

The milk thistle mentioned is wonderful. I have been on it for years and my liver is functioning well.When I forget to buy it I'll end up with liver pain in a few weeks. I highly recomend it, I use Alvita bags and soak them a long time. But with most genetic mutations of "hereditary" hemochromatosis, one must phleb the rest of your life.

Haveing phlebs every week may be too much so I wouldn't worry about the hemoglobin. If it goes down below 11-12 he needs a break anyway. This website is great; www.americanhs.com

I phleb every 10 weeks and avoid ferretin enriched breads, cereals and pasta. I hope you are ok and not worrying too much, with proper treatment he is going to be just fine. Good luck.

I just was diagnosed in early July with a ferritan of over 1000 and saturation of 94%. It had gone up from 800/55% in two months! I have been having weekly phleb. and find that I am a bit wiped out for about 24 hours after, but then feel pretty good. I just feel better knowing that the iron is finally leaving my body! It has been really helpful to read the book put out by the Iron Disorder Institute. (got it on Amazon) and I also got a book about a Liver Cleansing Diet. My husband joined me on this diet a few weeks ago and we really do feel better. I don't follow it 100% because I am cognisent of making sure I don't overdo the vitamin C and iron intake. My hemoglobin went down a little the first week (13.8 to 13.1, but has inched back up to 13.3 now.) I think eating healthy makes a big difference. I would be careful not to just rely on herbal supplements without talking to his dr.