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?
Some plateaus are normal I think, especially for those of us with high ferritin. Continue the weekly phlebs.
Have you read the side effects of chelation? I didn't even consider it (and my ferritin climbed to 10,363!) but my ferritin is now 40. Took me 19 months (and I phleb'd twice weekly for 12.5 months of that!)
You'll get there and it may not take too long since you are down to 1400. You'll probably find that you might also drop 200-300 between one ferritin & the next!
Good luck!
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Yeah, the side effects of chelation look bad, and I wouldn't use it unless it's a last resort. Thank the lord that it finally started dropping again last week, down to 1245 now. Got a little freaked about going every week and not making any progress.
So, about diet... My doc is basically saying that on the weekly phlebs it basically isn't going to matter much what I eat because the amount I'd be taking in would be vastly smaller than the amount taken out. Is this correct, or should I be worried about diet also? I have stopped taking the multi-vitamin that I had taken before due to the added iron, and have been trying to moderate my red meat and white bread intake and have been watching my Vit C intake. Any foods that help or hinder more than others in your experiences?
Yeah, the docs believe that it's probably a mutation. I really didn't have a clue I had this until I had the liver biopsy. Probably wouldn't have for a while until my liver started to give out. My liver enzymes are normal, I'm not overly fatigued (although I do have sleep apnea, and am treated for that too.), don't have arthritis as far I can tell, and don't have any of the other symptoms that are on-line.
Not a big fan of tea, and only drink coffee for breakfast, but I guess I'll have to start drinking it more often? I don't eat cereal often, so no problem there. I just bought a bottle fo Centrum Silver so we'll see how that goes. Is there a concern about the 100% daily Vit C in Silver though?
Just my $0.02...
Not sure exactly what the US RDI is for Vit C (60mg?) but it will be under 100mg, which should be OK. Most HH doctors say supplementing with up to 500mg is acceptable, but must NOT be taken with food. Most multi vits are recommended to be taken with food, so a multi with no iron would be best.
Tea should be taken with food or directly after, it has little to no effect between meals. This is true of all just about all iron inhibitors, e.g. milk, cheese, yoghurt etc. (250mg + of calcuim), eggs, coffee (not as effective as tea)
Also keep away from acidic foods cooked in iron pots, cast iron skillets etc. e.g. tomatoe sauces, balti indian currys etc. (home brew in iron containers)
I expect to be at 50 in about June, thats 2yrs from 2300 level (weekly phlebs only lasted about 15mths, presently going every 2mths)
Congrats on the low level! What is a good number to shoot for for Ferritin?
The numbers i have seen by some sites are that you will drop 30-50 points per phleb so I was approximately average. So it may take you up two years if all the ferritin is a result of iron storage.
The main thing is you keep with the phlebing and before you know it you too will be on maintenance rather than every week.
Hang in there
It seems that infection, inflammation, or stress to the body can cause the ferritin levels to go up..
As stated by others follow a low iron diet, some people seem to hold on to iron more than others even with HH..
After your are deironed you dr will get you on a routine that works just for you. I currently go every 4 weeks however they can only take 250 ccs at a time, or else my heart throws a huge fit....
But I don't eat too much beef weekly and always take calcium (I'm a bit dairy intolerant) before meals especially if I'm having beef, lamb or dark poultry meat.
My ferritin was only 369 at diagnosis but I think the first hematologist didn't know much on HH.