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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taylorep 01/07/2018

Hi, I am really freaked out because I travel a lot since my boyfriend lives in Florida and this is the 4th time my ankles have set off the TSA alarm. I’ve never broken an ankle nor had surgery..... I wore different pants every single time I went and it still went off. It’s just my ankles too and it’s without shoes on. I’ve been researching for hours online and the only thing I can find is an iron overload. I do have very swollen ankles but I thought it was just water retention.... does anyone have any advise or ideas as to what this is?

Pudding80 01/08/2018

taylorep.

I have HH (Homozygous C282Y) and different times throughout my life I have had problems with setting off alarms, watches stopping working and getting electric shocks off of cars and electrical equipment when nobody else did.

This has stopped since my serum ferritin level has been below 50.

The only way that you could find out if you have HH is by having blood tests, and, if HH was considered a possibility, a genetic test.

Cap6 01/16/2018

Hadn't thought about it until reading this - I too have had weird electric shocks from odd things. Others have looked at me like I was crazy. And I was stopped at the airport just last week. Had to have the body scan and they asked me three times if I had something in my pockets. Strange!!!

Pudding80 01/20/2018

taylorep & Cap6,

I have noticed that I am also much more sensitive to our ceramic induction hob than my partner.

I can always feel the hob itself humming if my fingers are close to it or touch it. I can also feel it through the handle of the pans.

My partner says he does not feel these at all. I know they are not safe for people with pacemakers but I hope they are not unsafe for people with HH.

MoFe 01/21/2018

I have iron overload (692 ferritin), I am waiting to get my genetic test back. I saw something like this somewhere else, and it surprised me. I just flew back from Florida and I set off the airport alarm. She only wanted to pat down my left ankle. At the time I thought it was odd, but didn’t think anything really of it. But now reading this I’m kind of curious. I too get shocks from things other people don’t. I’ve looked it up and some sites say this is impossible, but on the other hand I experienced this and having other people experiencing it I kind of wonder if it could be possible.

Pudding80 01/21/2018

MoFe,

People can say it is impossible but that doesn't negate the fact that I was always getting little electric shocks from cars in particular throughout my life until my serum ferritin level has been mostly below 50.

It would be preferable for people to say they do not know why this happens rather than say it is impossible.

Cap6 01/23/2018

Wow. Love reading these responses. Explains why I have felt little zingers when no one else does. I finally just quite saying anything cause of the strange looks I'd get. And now that I think of it - my mom used to get weird random little shocks.

MoFe 02/03/2018

I agree, it’s more likely possible with all of us having experienced it. It’s shocking!

JacquelineV 03/04/2018

I was diagnosed a few years ago in my mid-30s. None of my family has gone through testing but we all have weird unexplainable ailments. I finally convinced my parents and my sister to get tested. My mom's sister also couldn't wear watches because the always stopped. It'll be interesting to see if all this is connected to HH.

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