I kept track of my results and found the numbers would go down by 10% per blood draw. I started at 3400, so at first the numbers were going down in chunks, then when the numbers got lower it was going at a slower rate. it took me about 11 months to get down to 25. and that's going once a week.

Thanks Mike. Last week my Fe was 456, so I'm experiencing the same thing. Fortunately, its heading the right direction. I'm doing weekly also.

I have had 5 treatments, so far my iron levels have not gone down. I am concerned. The diet has been very confusing for me. No red meat shellfish got it! The vegetables confuse me every web site gives different info. I need the doc to be more specific.

Hi Barbara
with the iron in food, the iron in Red meats is a different type of iron to that in plants, the iron in meat is more readily absorbed and should be avoided as much as possible but as my doctor said you have to live so if you fancy a steak once in a while go ahead, but don't have it regularly.
White meats are better.
The vegetables, he said to eat as you don't absorb this iron as much as red meat and you need the vitamins that they contain.
Avoid anything that has been fortified with iron such as bread, breakfast cereals etc as these are a no no to us with HH, also do not take iron supplements,
The issue with shellfish is that there is a bacteria in some shellfish, cant remember its name that thrives in iron rich environments like someone with HH and can kill you!!, so no shell fish, and also if like me you like to walk on beaches you should not do this barefoot as you may pick up this bacteria from something like a sharp shell that you tread on, so get some beach shoes if you fancy walking on the beach or in the surf.

Hope this helps
take care

Steve

I had a level of 950 when I started the weekly phlebs. After about 6, iron really started to come out, my feritin went up to 1350. I had to have 8 months of weekly plebs to get it down to 50, where I keep it with a pleb about every 12 weeks. My liver enzymes don't show anything unusual, but I can't eat gluten or dairy now or else the inflammation is so bad in my ankles I can hardly walk. I think that is liver damage as I can't digest those anymore.

It is interesting how different this disease manifests in everyone. There is such a variation of damage/symptoms seemingly only partially related to the ferritin level.... As far as diet, I thought it was only uncooked shellfish (aka: raw oysters). I'm avoiding red meat, sushi, alcohol and breakfast cereals. Basically, just watching the labels.

I am a fan of the "Claushaler" brand of Non Alcoholic Beer. :)

Met with the Hemo doc yesterday and she figures in another couple of months I can transition to maintenance. Still doing weekly. #13 today.

I found out I had Genetic Hemochromatosis in January. Ever since I have had weekly Phlebotomy with the exception of a few weeks that my hemoglobin levels were too low. My ferritin has been erratic. from 1200 to 1600 to 1400 to 1200 to 900 to 1200 to 1179. Has anyone experienced anything like this. My transferin saturation has been up to 98% but then went to 40% then up to 96% again....