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.
Hi all
Im not new to the site, Ive been by the wayside reading the posts, but now I have a question. But first let me give a little background. I was Dx with HH in Sept 09, my ferritin was 4200 and saturation level was 93%. I went for a routine check up for diabetes which was diagnosed in March 08. (I was in Vietnam and operated in areas where Agent Orange was used. The VA has determined that spending one day in country during that time predisposes a person to getting diabetes.) Based on this there is no reason to suspect iron overload.
During the routine exam the Doc said he thought if felt my liver was enlarged I went in for a bunch of tests and I was referred to a hematologist who did DNA testing and found that I had both copies of C282Y. He referred me to a gastroenterologist who did more testing and found I have decompensated cirrhosis - all of this from iron overload.
I phleeb weekly. Last week was # 24 and my ferritn was at 2189. My question is - in the last three weeks the ferritin has been going up. On #22 the ferritin was at 2002, although its not much its not the right direction. I watch my diet so I dont think that is an issue. I exercise regularly and Im in pretty good shape except with all this going on! So Im a bit confused/disappointed that the ferritin is increasing? So my question is: Has anybody else experienced this - ferritin going up after phleebs?
When I talk to people about this, I use the analogy that HH is like a forest fire, until its under control its going to destroy whatever it touches.
Oh well, #25 this afternoon!! Maybe itll move downward -- like uh, 500. I can hope!!!
Im not new to the site, Ive been by the wayside reading the posts, but now I have a question. But first let me give a little background. I was Dx with HH in Sept 09, my ferritin was 4200 and saturation level was 93%. I went for a routine check up for diabetes which was diagnosed in March 08. (I was in Vietnam and operated in areas where Agent Orange was used. The VA has determined that spending one day in country during that time predisposes a person to getting diabetes.) Based on this there is no reason to suspect iron overload.
During the routine exam the Doc said he thought if felt my liver was enlarged I went in for a bunch of tests and I was referred to a hematologist who did DNA testing and found that I had both copies of C282Y. He referred me to a gastroenterologist who did more testing and found I have decompensated cirrhosis - all of this from iron overload.
I phleeb weekly. Last week was # 24 and my ferritn was at 2189. My question is - in the last three weeks the ferritin has been going up. On #22 the ferritin was at 2002, although its not much its not the right direction. I watch my diet so I dont think that is an issue. I exercise regularly and Im in pretty good shape except with all this going on! So Im a bit confused/disappointed that the ferritin is increasing? So my question is: Has anybody else experienced this - ferritin going up after phleebs?
When I talk to people about this, I use the analogy that HH is like a forest fire, until its under control its going to destroy whatever it touches.
Oh well, #25 this afternoon!! Maybe itll move downward -- like uh, 500. I can hope!!!
Have you tried taking calcium? It's great for preventing absorption.
Welcome!
My doc told me good rule of thumb is when drinking or eating fruits high in vitamin C, eat nothing else, and wait a few hours after to eat anything else.
I was taking my vitamins individually, because I was scared of the C. Then I found these.