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Hemochromatosis anyone?
Newly diagnosed sort of

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#1 unicorn

Posted 10 July 2012 - 10:27 PM

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.

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

Edited by unicorn, 10 July 2012 - 10:28 PM.

#2 ubermum

Posted 10 July 2012 - 10:33 PM

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.

#3 Le-a

Posted 10 July 2012 - 10:38 PM

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.

#4 unicorn

Posted 10 July 2012 - 10:40 PM

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.

#5 whydoibother

Posted 11 July 2012 - 10:02 AM

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

#6 PrincessPeach

Posted 07 December 2012 - 01:10 PM

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.

#7 FizzlingFireboxes

Posted 08 December 2012 - 07:04 AM

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.

#8 rjflc69

Posted 14 December 2012 - 12:22 PM

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.


#9 i-candi

Posted 15 December 2012 - 10:08 AM

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.

#10 Lim Lam

Posted 15 December 2012 - 10:19 AM

My Aunt ( mums sister) has it and has blood drawn very month, hers is actually used by the Blood bank as its so iron rich.
My other aunt (mums brothers wife) so no blood relation also has it and gives blood monthly.
They both a big drinkers and only my mums sister follows a strict diet as she has diabetes too.
My Dr said I dont need to be tested yet.
Goodluck x

#11 olikat03

Posted 15 December 2012 - 03:17 PM

Last year my doctor thought i had it but it turns out i was eating too much tuna, one of those small tins every day. So i guess if you are after diet recommendations stay away from tuna LOL. It probably wouldnt help you if you had Hemochromatosis

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