Welcome to the forum. My first question is how were you diagnosed, what tests were done to come to the conclusion you have HH?

DON'T eat ANY raw seafood while you have high levels of iron as it may contain a bacteria called "Vibrio vulnificus" that can KILL you! It's actually quite common in shellfish (e.g. I think something like 40% of shellfish in the Gulf have it) & the sea so take precautions to avoid cuts on beach etc. Your bodies high iron levels allow it to overwhelm your bodies defences. Once your iron levels are down to normal levels you can eat raw seafood again.

Birkita, I am one of the rare cases that was found by my medical doctor because she is young, has had other cases in her office and is alerted when blood work comes back abnormal. I see my medical doc regularly because I suffer from debilitating back issues and problems- I have had some heart issues too...at the age of 35 I had a very fast heart beat and it had to be fixed...blah blah. Anyway, February I saw the doc because I was fainting and feeling strange. So we thought that I might be anemic. Wrong, Iron levels were high - so rather than freak then, she waited another ninety days, then I retested and she tested for HH. It came back positive and since I am reading these books and online forums I am finding this is a miracle - that I was diagnosed this way, with little or no effort on my end...and little or no symptoms. However, I am a sushi eater, but already read about the seafood issue (FeralFerr) so I am being extra cautious not to eat any crab oysters shrimp etc. I love salmon that seems to be my fish of choice right now. No appetite tho...does anyone else have that issue...weight loss...I have lost about 30 lbs and am steady now...but I thought it was due to the recent stress of loosing my mom to cancer...oh well such is life right? Thanks for all your responses...I do appreciate all everyone has to say and add to my journey here.

I'm with feral...........

No sushi of ANY kind! No shellfish (cooked OR raw, either) I'm not taking any chances b/c it just isn't worth the risk. And I wear beach shoes, now, too. Hawaii is the same beautiful place even while wearing them and without eating sushi:) Been there a few times and plan to go again:)

zzzzzzz

welcome, noone has mentioned phlebs yet. i hope your doctor is sending you for regular phlebs to lower the iron level. this is the only way your iron will be reduced. diet will alone will not accomplish this. most individuals will do phlebs weekly until there in the normal range.

Responding to Mike 1126- yes my regular doc told me I would need phlebotoies. She also told me she hpneeded to send me to a specialist because this is not her area of expertise. Birkita- many bloobpannels were done and lastly my blood was screened for HH (to the best of my knowledge this is my answer ). I see the hematologist/oncologist on Monday. So more will be learned. I hope to go for genetic testing in order to avoid a liver biopsy but that information I garnered from the IDI-Guide to Hemachromatosis. Today is another day. I am in e midst of moving to Az from CA by the end of the month.

Feral- I re read your post and will beg off sushi altogether. Thank you!!! So far I am still alive. OMG.

Wow. I didn't know about the sushi thing. I just had it a week or two ago. Guess that was a bad call! Of course my Ferritin is down to almost normal levels (346 just yesterday, yeah!), so I guess I dodged that bullet!
Good catch by your doc! Stick with the phlebs, and all should be OK.
My doc actually doesn't worry too much about what I eat. He basically says that if you're having phlebs, the amount of Iron taken out is vastly higher than anything you could injest, so I'm not really watching what I eat yet. Probably will change a bit after I'm done with the weekly phlebs (hopefully in a month or so... I hope!). I am refraining from alcohol, though, as my liver doesn't need any more stress.
Good luck, glad they caught it!

@thinking,,,
My doc wasn't concerned about my diet, either. He said the phlebs would basically take care of the overload and/or new dietary iron intake. However, I rarely ever eat breakfast cereal. TOO much iron!! You can ck You Tube and watch what happens in the experiments done on a bowl of soggy cereal and a magnet. Scarey!! I sorta dodge other 'fortified' foods like bread, too.

Also, Why would he want to do a liver biopsy? My doc said he has my HH genetic confirmation and biopsy results wouldn't change his treatment plan for me.... phlebotomy. Only IF something was suspected or something else happened would he do it. There are risks with a liver biopsy, as there is with any invasive procedure) (I did end up having a biopsy because my ferritin was skyrocketing & we needed answers) Liver biopsies aren't necessary to determine a diagnosis of HH. Maybe there is a question about the health of your liver because of the past hx of alcohol, etc??

Congrats on 15 yrs of sobriety:)

zzzzzzzzz