Hemochromatosis Support Group

Hemochromatosis is a hereditary disease characterized by improper processing by the body of dietary iron which causes iron to accumulate in a number of body tissues, eventually causing organ dysfunction. It is the main iron overload disorder. Hemochromatosis is notorious for having symptoms that are often initially misattributed to other diseases.

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tammyrad 01/12/2016

Hello, I am a 48 year old female and was newly diagnosed with Hereditary Hemochromatosis in November after 8 years of elevated ALT and AST levels and 4 ultrasounds results showing fatty liver. My PCP finally sent me to a Gastroenterologist and he ran some bloodwork . My Ferritin level was 2188 and my saturation is at 90%. I have had 8 phlebotomies done now one every week and just had bloodwork done again, my ferritin is now at 1781 and saturation is still at 90%...Does it take this long to go down? I also just had a liver biopsy done at end of December. No fibroids or cancer, but doctor said I had between stage 1 and II liver damage, but what concerned him most was the amount of iron in my liver. He has referred me to a liver specialist at Georgetown University. I have an appointment in early February. I am kind of scared....is this normal?

noironco 01/19/2016

I have a similar story, and was also diagnosed in Nov. My ferritin was 2182 and fortunately my biopsy showed no damage, only inflammation. In my case after about 4-5 phlebs, my ferritin went down to ~1000. However, from reading a lot of these posts, it seems like everyone sheds the iron differently. In fact some people have had it increase while they de-iron. The good news is that you don't have cirrhosis and the liver can heal with fibrosis. You are on the right track!

tammyrad 01/19/2016

Thanks, I just had new bloodwork and was shocked to find my Ferritin level has increased. Liver Enzymes are still increased too. I don't understand and I am frustrated. Also my glucose numbers are rising. My hematologist is having me to phlebotomies twice a week now.

battlemountain 02/05/2016

The same thing happened to me. I had one pint taken off and my number jumped from 919 to 1070. In my tiny little mind, I could see lots of feritins sitting on the shelves of my liver and when I had the bloodletting, more jumped off their shelves and into my blood stream. Eventually, (next phleb. is Monday) I should get it under control. When they test your blood, they are only testing what is in the blood that day. It's fluid. Am curious, what is your blood type? I am a B + non-secreter. Pretty rare.

tammyrad 02/09/2016

I am O+ I have my levels checked again tomorrow and see the hematologist Friday. Fingers crossed the numbers are lowered and I can go back to once a week or better yet every other week.

kenneang 02/10/2016

I am also recently diagnosed and started phlebotomies last October. I was diagnosed by chance after having a mineral panel completed and my Ferritin levels were only 550 when I started. The genetic testing confirmed I am Compound Heterozygote for this condition.

What I have learned is, unfortunately, this is not a linear condition in regard to reducing your iron levels or the rate at which they go back up. I found that my numbers dropped very quickly at first, but it took several more sessions to get it below the 100 that is recommended. Please continue this type of treatment until your numbers are in the target range. And please make sure you have the genetic testing to absolutely confirm this is the cause of the high iron.

That being said, what I do not hear enough about is the holistic approach that must be taken with this condition. This involves not only managing your supplement regimen (NO vitamin C, but Plenty of Calcium, just as an example), but also food pairings that help REDUCE or STOP the absorption of iron in your system (check out what to do for anemia and do just the opposite).

I highly recommend the website hemochromotosishelp.com . to help guide your decisions in your diet on a daily basis. It is a great thing that this condition is treatable through phlebotomies, but it is a daily condition we must manage.

Some nutrients to make sure get incorporated in your diet:
Calcium & Magnesium
Polyphenols and Tannins
Oxylates and Phytates

I agree you are on the right track, I just encourage this holistic approach since this is a LIFE LONG condition that we have to take control of managing.

kenneang 02/10/2016

would help if I spelled it correctly :-)
http://www.hemochromatosishelp.com/

barbaracabrera 02/22/2016

I just found out I have hemochromatosis a couple of months ago. I am learning about the diet...very frustrating. No vitamin c.....watch got iron additives in food...drinking tea with meals and also coffee. The greens have me confused some web sites say green vegetables are good others say no. I love my salads and I feel very deprived. I have had 5 Treatments and my numbers are not going down, so how long does this take. Any suggestions on diet or anything else?

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