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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Gastrointestinal System
/ Hemochromatosis Support Group

blood test

langlois
langlois
Recently diagnosed with hemochromatosis; recent lab work show most iron levels high but something came out very low. It is: UIBC, results of 36, norm of 145-358. I see the Hematologist Thursday, but it is a new one for me and I'd like to be more informed about it.
Also - is an hematologist the right MD for me? I also have essential thrombocytocis so I see a Hem regularly. Or would a gastro MD be better? Or family doctor?
Thanks for any information,
Langlois
deleted_user
deleted_user
My family doctor referred me to the hemotololgy/oncology department in a hospital so thats where I receive care and treatment .
GidgetD
GidgetD
I saw a hemotologist to get information and get my schedule set for Phlebbs, but know I only see my General.
bronxpreston
bronxpreston
I was diagnosed with HH in 1998 and have been to four hematologists and one gastroenterologist. Two out of the four hematologists weren't that informed about HH. The gastroenterologist was knowledgeable about HH but had only one nurse for doing the phlebotomy who used the blood bank's equipment (bag, needle and tubing). That's OK if you have great veins. I don't.
Going to a hematologist/oncologist works better for me because there is more than one nurse and they have access to smaller needles (for chemotherapy patients) and vacuum bottles to phlebotomize. I've already been through the port and PICC route (which I don't advise).
So it's your call. You might consider a consult to the GI doctor if you find you don't feel comfortable with the hematologist.
deleted_user
deleted_user
I see a Gastroenterologist, he diagnosed me in Jan. 2008. he's the only one I see,,he knows his stuff. After going to many docs and having lots of tests, he is the one that figured it out! I feel he saved my life.
I don't have the phleebs there though, I donate at a donation center.