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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sandrac2000 10/08/2011

I am currently in maintenance, have been getting a Phleb every 3 months. My Hemotologist wanted to keep my Ferritin Level around 50. 2 months ago my Ferritin had dropped to 23. Last week my Ferritin had dropped to 13, without getting a Phleb. I feel so tired, I struggle to go to work every day and all I do on the weekends is stay in bed. This past Thursday when I started to get up to get ready for work I was so dizzy I could hardly walk. So I had to stay home from work. Anyone have any suggestions.
Thanks,

NicolaToms 10/09/2011

Sandra, it sounds like you could be anaemic. Are you still having periods and if so are they heavy? X

GidgetD 10/09/2011

Have a nice fat juicy Rib-eye steak and enjoy every bite. Sounds like once every three months should be changed to once every four months and keep track of what your ferritin does then.

YREKADC 10/09/2011

sandra i was bled down to 11, and you most likely are anemic. i passed out cold, have no energy. i only work part time and after my shift i have to lay down, i just am totalled . i have been eating all the stuff we avoid to get my level back up to 50. some folks feel fine with levels in the 20's-30's. it hasn't been determined what i should be at. yet. just because we are normally high on iron don't mean we can't become anemic. i even had breakfast cereal, those are loaded with iron. so far it doesn't look like i load real fast.
i am back up to 23 at present. am still pooped all the time.
what are the rest of your labs like. the cbc tests. the red blood cell count etc. if those are low you don't want to give blood. that can be very hazardous to your health.
try to keep copies of your labs , so you can keep track of your own stuff, docs seem to forget to bring that pesky chart with them,.
i usually have my test results before the doc and take copies to her.
well have a steak on me, enjoy it while you can... but don't get too crazy now...lol

deleted_user 10/09/2011

Sandra, Not sure what to think about the drops in Ferritin. What does your hemo say?.... I LOVE dark chocolate and I miss it. Maybe you could have a little dark chocolate. suzq. : ()

deleted_user 10/09/2011

It seems like the lower my ferritin level has dropped the worse I feel. Seems like I've had more bad days than good lately. So this afternoon, I'm going to grill a few big sirloins and shrimp. Maybe even drink a bottle of red wine on top of that! You know what? I'm already feeling better.lol

deleted_user 10/10/2011

I'm in maintenance also and have not had a phlebotomy since December 10. I have labs ran every month and ferritin stays below 50 but two months ago it dropped from 48 to 23 and this last lab it was back at 45. I don't have any answers. My hemotologist/oncologist told me I would probably only need one phleb a year, and it's looking like she's right.

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