[Flibbertigibbert...]

I have a referral for a Haematologist and need to make an appointment to confirm the diagnosis, it is something my doctor has been looking into for me for a while, it has dragged out mainly because I'm a bit (very) slack getting blood tests done and making follow up appointments.
So once I have a diagnosis what happens next? My doctor mentioned venesections, do you donate that blood? I don't know if I fit the criteria for donating, I will look into it.
She is concerned about my liver, will that repair itself once my iron levels go down? I don't drink, have never had hep A, or any other illness that could affect my liver.
What sort of diet are you on?
I will be asking the specialist when I go to see him, but not sure how long that will so thought I would put the feelers out.
Any advice you have would be much appreciated.
TIA

Edited to add, what about your children? Have they been tested?
thanks

This post has been edited by unicorn: 10/07/2012, 10:28 PM

[ubermum]

Are you female? Women don't tend to have as many issues due to losing blood monthly.

My ex boss had it. he used to give blood once or twice a month (I think) and that was about it. He definitely wasn't on a special diet and he drank quite a bit.

[Le-a]

My dad has it. He has blood drawn every so often, but no special diet and no liver problems. He reckons the blood doesn't get donated, which is a bit of a shame.

[Flibbertigibbert...]

Yes I am female, my period is usually quite light if at all, I can go years without one (PCOS), that is why she mentioned possibly needing to give blood.
thanks

[creepersgonnacre...]

not a goood news story ut my DH great aunty died from liver cancer from long term Hemochromatosis I gues back in the old days they didn't treat it/know about it and it lead to liver damage

[PrincessPeach]

Sorry, just saw this thread...

I was diagnosed last year with it, my dad has it & my aunt (other side of the family) has also recently been diagnosed.

I have to have blood tests every 12 months to monitor my iron levels, but my dad goes 6 monthly.

Vennisections are dependent upon the results of the blood tests.

Stating the obvious, but stay away from any multi-vitamins with iron or vitamin C in them.

Not sure about your liver repairing itself (though i think it might), but another thing to watch for is diabetes, as the conditions are linked, my GP also checks my BSL at the same time as my iron.

[Regular Show]

My ('adopted') mum has it. She is in heart failure from the long term effects of it. She is on a low salt diet. She has blood taken often.

The long term effects of it (being un-diagnosed and untreated) is when the damage occurs to the best of my knowledge.

Her daughter doesnt have it but carries the gene. You need two carriers to pass it on I think (male and female). It is genetic.

Pretty sure thats right.

Goodluck

[mummy.to.one]

Hi, dh biological father found out he had it a few years ago. 1 bil has it quite badly, he has blood taken monthly and it has affected his liver. He no longer drinks I'm not. Sure about diet changes. Other bil has it but not so seriously he is checked every few months I think. Dh was tested but his dr confused him and he hasn't gone back to another dr to be tested. Yes I know he should be tested again.

[rjflc69]

My DH has this, was diagnosed about 18 months ago. His iron levels were sky high and he has been having fortnightly blood donations to try and reduce his levels. Luckily he has no obvious liver damage at this point but is on 6 monthly check ups with his heamatologist. He visits the Red Cross and donates his blood but it can be done at a pathology centre (but obviously doesn't get used for good). If the case is you need to have regular venesections the specialist will complete a form which needs to be given to the Red Cross/Pathology lab and needs to be renewed annually.

I was also tested after his diagnosis and have one of the genes (he has both) which means that all our kids will need to be tested when they get older.

Fiona

[i-candi]

DH found he was a carrier after having high iron levels.

We were told to have DS tested and as we were having other bloods done we tested for hemochromatosis. DS has the disease, can't remember if I was tested or not.

Right now it's a wait and see as it doesn't effect you until you are older. I just make sure DS doesn't have multivitamins with iron. Funny enough when he was preschool age he had low iron and we had to give him iron supplements!

From what I understand there are two genetic mutations (? is that the right word?) one is a more severe form, lucky for DS he has the milder disease of the two.

We'll get DD tested if she needs bloods done in the future.