I'm new - worried about auto-immune he... - British Liver Trust

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I'm new - worried about auto-immune hepatitis

DomBr profile image
DomBr

Hi everyone

A month ago I went for a routine blood test which found my liver functioning was abnormal. My GP and hepatologist confirmed it is not any form of hepatitis or glandular fever, which they originally thought it would be.

Given that my mother has rheumatoid arthritis, they are now testing from auto-immune hepatitis. My consultant thinks it's a 50/50 chance it could be this which worries me.

I'm going to be completely honest that I'm very frightened about the prospect of having this for the rest of my life. I'm 28 and worried about my life expectancy. My consultant has been fantastic, thorough and has told me even if it is this that it will simply be a case of managing it, but I'm still very worried.

However, if anyone out there has any experiences to share that would be appreciated. I'm having a liver biopsy in a couple of weeks to confirm if it is auto-immune.

Thanks

Dom

9 Replies

Dom,

I don't have AIH, but there are a lot of people here that do. Apparently there is a FB page that is great. I know from experience (liver cirrhosis, portal vein thrombosis and blood cancer) that you can definitely live a 'normal' life besides the odd hospital appointment. Don't fret too much and try not to Google stuff....This page is far better than Google!!

Good Luck x

DomBr profile image
DomBr in reply to Chelle_

Thank you for the reply. I've already had a look at the Facebook page, so I'll try to join it.

Unfortunately Googl'ing a lot! Just very worried about having this as a burden and changing, lifestyle and diet in order to fit in with this. And ultimately worried about liver transplants and death. My dad passed away from prostate cancer last year, so I could have done with a break from hospitals for a while. All just a bit depressing...

AyrshireK profile image
AyrshireK in reply to DomBr

The Facebook page at:- facebook.com/groups/AIHorgU... has over 1400 members all of whom either have AIH or like me are loved ones of family members with the condition. You'll find a warm welcome from people who have been exactly where you are now and they are supported by some of the top medical boffins in the UK on managing the condition.

All the best, Katie

Hi Dom Br. I too have AIH so I can relate to your worry before confirmation. I started to feel ill towards the end of 2015, tired, lethargic and nauseous. I struggled getting through my work. A blood test showed I was was slight jaundiced and referred through to a specialist, although this took a while. I was eventually rushed into hospital looking like a member of the Simsons, totally yellow and yellow eyes. My blood results were all in the red. This was in January this year. I must have gone through every test available and a liver biopsy, this confirmed AIH and cirrhosis. Up until last week I was on steroids and now take Azathioprine which both lower your immune system right down as the white cells were attacking my liver thinking it was a foreign body. Now, I'm feeling so much better than I was, gone is the jaundiced and most of my bloods are back in the black. All my worries have been mostly put to rest. I spent a lot of time googling my symptoms which didn't help me one bit, if anything it made me worry more.

I've been asked a couple of times "how have you caught that" it isn't something you can catch as the consultant told me, alcohol can bring it on or like myself toxins.

Two of my daughter's have been on the fb group which they got a lot of help from, they've asked me to join it numerous times but due to the sudden loss of another daughter I'm not ready to go back on fb just yet. From what they've said, it seems a good area to start for answering any questions you may have.

I wish you the very best and hope my story might give you a better glimpse of AIH

Hidden profile image
Hidden in reply to Suzyq0391

I'm so sorry to hear about your daughter. You are all in my thoughts and prayers. Please take care. Lots of love Lynne xxxx

Suzyq0391 profile image
Suzyq0391 in reply to Hidden

Thank you Lynne for your kind words and prayers. It was a difficult time as I was really poorly and discharged myself from hospital.

I wish you all the very best in your health. Love and hugs Sue x

Hidden profile image
Hidden in reply to Suzyq0391

Thank you so much xxxx

Please don’t worry, there are plenty of people who can help you with advice on FB. Depending on where you live there are also a catch up meetings which you can attend. All are announced on FB.

I have AIH for just over 6 years & am lucky to have a good gastroenterologist & after 6 mths on steroids & AZA, I am now only on AZA.

Blood test will always be part of checking you are ok. All the best

I'm worried about AIH myself after being on prescription medication for a year with Tylenol. I got really sick, when I stopped the medication my labs got worse instead of better. Now they spike once in a while. I feel much better, but still don't know exactly whats going on.

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