Looking for BARB C....re: Hemochromotosis!!!

I posted this on the main forum, and Andrea directed me to NC board to find  her for information on this, seeing as it is rare, esp. with RNYers, and ESP since I have had NO FE SUPPLEMENTATION!!!!



But I got my year labs done (actually I'm 16 months out now), and my iron and iron sat. are VERY HIGH....which (through research on my own) explains my fatigue, and debilitating (sp?) exhaustion. Then, I find out through my aunt that Hemochromotosis runs in my family!!! So I called both my PMD and my surgeon, left MANY MANY messages mentioning this, and begging to have my phone calls returned because I CANNOT FUNCTION because I am sooooooooo weak and tired. I'm mean come on!!!! I'm in bed by 7pm every night, I'm up at 6:30, and SLEEPING AT WORK by 11am!!!! WTF???  The doctors have not called me back, and if you know anything about Hemochromotosis, left untreated, it's DANGEROUS!!!!!!  I'm talking organ damage and eventually failure!!!!!!

Has anyone had any experience with any of this???

You sound like your serum ferritin is very high. If you are taking iron supplementation STOP immediately!! While, it does take some time, too much iron is toxic and my dad died of complications of his own hemochromatosis. This is nothing to mess around with. Your symptoms make me think that you have a pretty high serum ferritin count. With hemochromatosis, unfortunately, not too many Dr's seem to have experience with it.

You need to see a hemotologist as soon as reasonably possible. They will likely start phelbotomies to get your serum ferritin down into a normal range. I used to have phelbotomies on a weekly basis before RNY. When I was first having my phelbotomies, my blood was literally 'thick' with iron and it made them somewhat difficult. Make sure that you are VERY hydrated. Initially, you may feel more tired... I know, that almost seems impossible... but, soon after a phlebotomy you'll start feeling better. Since, I had my RNY I have not had to have a single phlebotomy and my iron levels are fine. While RNY is not a 'cure' for hemochromatosis, it's fabulous at managing it. I keep my serum ferritin in the upper mid 20's and that's fabulous for me. Your doctor will work with you to get it managed. Your doctor may run some tests to check on your liver function as well. While we can't take nsaids anymore,  you'll need to be very careful about acetominophen because it is known to cause liver damage and those of us with hemochromotosis often have compromized liver function. Also, be VERY careful with alcohol... again, your liver is more fragile. Other than that, I have to say that having my RNY has been a wonderful 'cure' for my hemochromotosis.

When managed, this is absolutely benign, however, if not managed, the consequences are literally lethal.

Please let me know how  you are doing.