Hemachromotosis

Bottle_of_Smoke

Mum's doctor almost sure she has it. So gonna have to get tested myself. Have no symptoms but only I'm only 24 and they don't normally show until middle age. Did have a previously unexplained liver function abnormality, so if i do have i'm hoping there's not too mucg damage done.

Pretty common in Ireland so not all that surprising.

Any sufferers on the board? what's bloodletting like?

psycho-hope

hey bottle, my gran has hemachromotosis, the only thing she finds bout getting blood taken is that she can be a bit dizzy and very tired for a day or two but other wise she finds it easy enough, your probably safe enough, my iron levels are on the high side of normal( im 23) so ive been told to stay away from food with lots of iron in it and any multivits with iron and just need to get my iron levels checked every few months

hope that helps

Risteard

I'd say definitely get checked.

I was 16 when I was diagnosed which the doctor said was very unusual.
It was only caught because she was looking at my results from a coeliac test and noticed my iron was very high.

Bloodletting's alright. It doesn't hurt save for a small pinch when the needle gets put in and even that doesn't hurt all that much. I definitely notice a difference after I get blood taken.I was always wrecked tired no matter how much sleep I got. I'm not down to normal levels yet though.

locum-motion

It's just the same as giving a blood donation, so if you've ever done that then you'll know what to expect.
It makes my blood boil (excuse the pun!), though, to see my blood just going in the bin afterwards instead of being used to help people.
L-M.

luckyfrank

Hi how are you, i have hemochromotosis im only 27 and found out by accident i had it i had papitations for years ( still do ) went to see a cardiolgist who sent me for bloods results should my ferritin level was sky high i then had the gentic test done and it showed i had it. My famlily all had the test done also but they came back clear

Got the liver bioposy done and that came back fine im starting the blood letting soon that will bring my ferritin levels down to normal

Bottom line is hemochromotosis is very managable just watch what you eat try only have red meat once a weak and avoid vitmin tablets with iron in them

Bottle_of_Smoke

Cheers for the replies.

Appointment booked for monday. Have never donated blood before but had tests before so there's no issues with needles etc.

Why do they not accept blood for donations given its not infectious? Could it have a bad effect on some patients who need blood transfusions? Maybe it should be given to anaemics

Diet should be alright, only meat I eat is chicken and the odd bit of fish. Gonna have to cut down on drinking though, apparently that increases iron uptake. Another problem is I smoke, and cigarettes appear to have iron in them!

luckyfrank

Bottle_of_Smoke wrote: »

Cheers for the replies.

Appointment booked for monday. Have never donated blood before but had tests before so there's no issues with needles etc.

Why do they not accept blood for donations given its not infectious? Could it have a bad effect on some patients who need blood transfusions? Maybe it should be given to anaemics

Diet should be alright, only meat I eat is chicken and the odd bit of fish. Gonna have to cut down on drinking though, apparently that increases iron uptake. Another problem is I smoke, and cigarettes appear to have iron in them!

Might be best to get the hep B shot just incase you come in contact with it chances are you wont but if your travelling to tropical countries you might run the risk of getting it, as hemochromotisis mainly affects the liver having hep b would be a double whammy the doctor advised me to get it the shot

gmf1024

http://www.independent.ie/health/case-studies/real-life-fighting-the-celtic-curse-haemochromatosis-1720639.html

also check out
www.haemochromatosis-ir.com

gmf

enda1

A teacher in school's husband died with this when they wrongly diagnosed it as anaemia! So he was prescribed iron supplements...

Yeah get yourself well checked all right.

nahboisk

all the older members of the family where tested for this as we found out my grnadparents where both carriers. some aunts and uncles are carriers but no one actually has it... none of my generation have been tested as far as i know as we were told its not exactly urgent yet. ive always been anemic anyway but must remember to have it checked when i have my next blood test. and thats for the info on the hepo b will remember to ask about this.

JackReacher1980

My father has it, so most of the family have been tested. I'm a carrier. Unfortunately, they only found out about his about 2 years ago, when he was in his late 60s, and the damage had been done. He was diagnosed with liver cancer a few months later, after a biopsy. But, on a good note, all treatment since then has been very successful, and he does the bloodletting thing once a week too. Doesnt find anything bad about it.
As far as I know, once caught, its really easily managed, and obviously, caught early enough, should have caused no damage. Common enough in Ireland, so I'm surprised my family only heard of it 2 years ago