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.
Hey folks, thanks so much for this site and your great posts. I just found this and it makes me feel like I'm not alone in this.
So, here's the story, I'm a 40 year old (young) male.
I was diagnosed with diabetes about 2 years ago, and since I'm fairly heavy (about 300lbs at 6ft height), the doctor didn't think anything but weight was the cause. I had also been having problems with my gall bladder for about a dozen years (1-2 attacks per year, but nothing terrible - milk thistle would help). Metformin was controlling the diabetes well, and then the numbers started to creep up (5.6 A1C went to 6.2 in 3 mos). The doctor suggested that I have the gall bladder taken out since it may be causing the sudden rise in blood sugar numbers with no other changes.
So... I had the gall bladder out, but while I was in surgery, the doctor noticed that my liver was enlarged and looked cirhotic, so he took a biopsy. The results came back that I had too much iron in my liver.
The doc sent me to a hemo guy who did the genetic testing. This came back negative, but he did an iron study anyhow. This showed ferritin levels of about 3200. He suggested that I had hemachromatosis since he can't figure out any other reason for the ferritin levels to be so high (a liver specialist concurred). I've had phlebotomies since Dec, 2011 now, and the numbers were slowly falling for the 1st 4 or 5 weeks. Now, for the last 4 or 5 weeks I'm at about 1400 +/- 50 and am wondering what's next... chelation? I haven't changed my diet, but I've started working out at the gym to get the weight down (can't hurt!).
Any suggestions?
So, here's the story, I'm a 40 year old (young) male.
I was diagnosed with diabetes about 2 years ago, and since I'm fairly heavy (about 300lbs at 6ft height), the doctor didn't think anything but weight was the cause. I had also been having problems with my gall bladder for about a dozen years (1-2 attacks per year, but nothing terrible - milk thistle would help). Metformin was controlling the diabetes well, and then the numbers started to creep up (5.6 A1C went to 6.2 in 3 mos). The doctor suggested that I have the gall bladder taken out since it may be causing the sudden rise in blood sugar numbers with no other changes.
So... I had the gall bladder out, but while I was in surgery, the doctor noticed that my liver was enlarged and looked cirhotic, so he took a biopsy. The results came back that I had too much iron in my liver.
The doc sent me to a hemo guy who did the genetic testing. This came back negative, but he did an iron study anyhow. This showed ferritin levels of about 3200. He suggested that I had hemachromatosis since he can't figure out any other reason for the ferritin levels to be so high (a liver specialist concurred). I've had phlebotomies since Dec, 2011 now, and the numbers were slowly falling for the 1st 4 or 5 weeks. Now, for the last 4 or 5 weeks I'm at about 1400 +/- 50 and am wondering what's next... chelation? I haven't changed my diet, but I've started working out at the gym to get the weight down (can't hurt!).
Any suggestions?
I was with Kaiser at the time of my diagnosis and they did a lot of research on HH, so having been out now for a couple of years is a new experience for me..I was spoiled with a great doctor who just took care of everything..
We need a place to go that patients can list the doctors who they have that deal with all their conditions who are familiar with HH.
Here's another wrinkle in the story... I was told that if I had HH, then my siblings should also have it. My brother got tested, and his Ferritin level is "normal" at 186. I didn't have the genetic markers and he doesn't either (as expected). So, do I actually have HH or something else? and if something else, what the heck could it be to cause Ferritn levels of 3200 or so at diagnosis?
Since you probably have an unknown mutation, it would be hard to tell if your brother is a carrier.
Wish there was a place to list the good ones!
Can't list the bad ones or we'd prob get sued even though it could save time/money/frustration for others:)
zzzzzzzzz
Other things that inhibit absorption to varying degrees are: phosphates (sodas, but the sugar content may negate sodas as a good option), polyphenols (red wine [OK once deironed], purple grape juice, coffee, tea, spices, some fruits, some vegetables), wheat bran, phytates (phytic acids found in legumes, whole grains and brown rice can decrease absorption by 50%), tannins (teas, coffees), egg whites, manganese, cobalt, copper, calcium, legume protein (soybeans, lentils, black beans, mung beans, and split peas), lignin (fibrous tissued vegetables) and soy protein. Note, nonheme iron (from vegitables etc) is more affected by the above inhibitors than heme iron (from meat).
Vitaminc C, citric (fruit), malic, tartaric (tart fruit and baking powder) and lactic acids, alcohol, sugars (fructose, sorbitol), all increase absorption of iron. Also meat, fish and poultry will increase iron absorption from nonheme sources like vegetables.
It has been shown that the effectiveness of some of these, like calcium, can wear off as the body compensates so it's possible a good idea to alternate every few months e.g. swap calcium for tea. Furthermore tea will also block other essential nutrients e.g. Vit B12 so if you drink tea with every meal you may become lacking in one of these other nutrients.
Great to hear your levels are dropping again.
Ferritin of 1000 is the cut off point doctors use for likelyhood of liver damage etc. but don't think of it as being a tipping point. The difference in danger between 900 & 1000 would not be much. It is not a linear relationship, as far as I know, so if your level doubled to 2000 you might have a 4 or 5 fold increase in the chance of cancer. Also it is time dependant, having a high level for many years would greatly increase possibility of damage while a short time at the same level would have less possibility of damage occuring.
Yes physical activity can help reduce iron slightly, though it has to be very intense endurance type activities, from what I recall, e.g. they found marathon runners shed extra iron. Lifting weights has had mixed results e.g. one study said yes for men who had high ferritin but no for all other people.
Thanks for the great info Feral!