Hi Readhead7.

I was holding off replying hoping that someone else with issues that more closely match yours replied first. Well. since as of now no one has, so I will throw my 2 cents in.

I have what I believe to be the more standard form of hemochromatosis where the body stores iron in many places a person's body, which causes high ferritin levels. Once iron is stored, the odd part is that the human body has no way to drain the iron out of the organs, so it just sits there causing all kinds of problems. For example, all my iron tests are normal, but my ferritin levels averaged around 600 before action was taken (phlebotomies). Therefore, I am not sure how closely our conditions match. So, I will comment about a couple issues you mentioned.

One is phlebotomy, a terrible sounding name for what is exactly the same as a standard blood donation, but at an accelerated rate (instead of every 56 days minimum per the FDA, a person can have a phlebotomy every 5 days). I wish that they (medical community) would drop the name "phlebotomy" and just call it blood donations. Since our conditions are different I cannot say exactly how many, or number of per month, will compare to my experience.

I gave 5 donations in four weeks when I first started in February. Since blood tests confirmed that my ferritin level is now in the high-normal range, my doctor has reduced my trips to the blood center to once every 4 weeks until my ferritin level drops below 50. After that, my guess I will have to continue blood donations a few times a year to make sure that my ferritin level remains normal.

As for the actual phlebotomy it is exactly the same as a standard blood donation. If you have ever given blood, you know the procedure. Takes about 10 minutes, and then you can eat a snack for a few minutes before heading home.

As I mentioned earlier, I gave as many as 5 donations in 4 weeks and did not have any noticeable side effects at all. The only thing that I noticed is that I sleep better the night after the donation for some reason.

If you read other posts on this Board you will read that some people have very difficult problems every time they give blood. I do not understand why different people have such a wide range of reactions to giving blood. However, I would think that most do not have a problem unless it is with the high number of donations per month. Just hope that you have no side effects!

As for food, my doctor told me not to worry about it. That may be due to my response to date. There are wide range of things you can do to reduce iron absorption. The most obvious is not eating any meat, but that is sooooo boring. I am sure that you have searched around the Internet for information, but one site that I found that is written by a naturopathic doctor who has hemochromatosis so he writes from personal experience, He also covers food issues that you may find helpful. He also sell a few supplements at the site. You may want to signup for his newsletter, which has good information and is not a "flood your email inbox" newsletter, more like once a month.

That is all I can thing of at the moment. Good luck!

Hello,
I have just learned that my iron is high in the past few months. I am 51 and have had one phlebotomy and I go in for another one tomorrow. I suggest drinking a lot of water and eating a good meal before you go. The first time, my blood was thick and slow and I started getting dizzy. I had to have fluids pumped in. My procedure and the fluids took two hours. I felt much better afterwards! I felt a brain fog lift. I am taking supplements that I bought from Sprouts - milk thistle, alpha lipoid Acid, vitamin E, multivitamin with no iron, and turmeric. I bought the book from the doctor you mentioned. Drinking green tea frequently. My ferritin dropped 20 ng from 204 to 184 after the first phlebotomy. Based on the posts I guess 50 is the goal. I am going every two weeks. Only taking 300 ml per draw. I hope I can manage this through supplements, wishing you the best! Debbie

I was also lucky to have learned I had this condition early. Fifteen years ago, I had genetic testing done, and it was positive for HH. But I was 45, as a woman having extremely heavy monthly periods, so I was not overloaded....until I had a hysterectomy shortly thereafter, and then my ferritin started to climb. My gynecologist said he could not believe I wasn’t extremely anemic, until I reminded him I had hemochromatosis, and he said, “Well, of course.” This is one of the most common genetic defects, and probably survived throughout evolution because it actually helped people survive when food was scarce or during plagues and illness when an extra shot of iron was a good thing.

Year and a half after my surgery it was time to start phlebs. I’ve always felt fortunate that I learned about this before real damage was done, so I can’t complain.

It’s really not practical to try and control it through diet. Iron is pervasive in our food supply. You’d be denying yourself other nutrition as well. But always read the labels. Virtually everything made with flour, and cerials are all fortified with iron. I do avoid certain obvious foods, like liver which I love, but it’s way too high in iron. But I still eat spinach. I find that cooking with my cast iron cookware makes my ferritin spike. For vitamin supplements, look for those marketed towards seniors, like Centrum Silver, which tend not to have any iron in them. But always check the labels. Best to just keep up with the phlebs as needed than to expect you can control it through diet.

I always recommend people check out the American Hemochromatosis Society website. It has a lot of good information.

Good luck with your treatment.

My GI told me those of us with hemochromatosis, stay away from milk thistle and liver cleanses. Just limit alcohol, salt and processed sugar.

Turmeric pushes iron into the organs.

Just eat good food.

brucekingfield I am very interested in what you say about turmeric pushing iron into the organs. I have never heard of this before. Do you have a link to some research on this?