Autoimmune hepatitis: I finally got the... - British Liver Trust

British Liver Trust

27,530 members13,895 posts

Autoimmune hepatitis

GrandmaDylan profile image

I finally got the confirmed diagnosis of autoimmune hepatitis today. It's not a shock as I have previously had at least one autoimmune disease and I don't drink. Unfortunately the hepatologist I saw in early Dec has now left my local hospital so I'll probably be referred to Manchester royal hospital. Apparently the liver biopsy I had done showed no stetosis but I've probably had AIH for at least 10 years. Previous gp's have just written my constantly high inflamitary markers.

8 Replies

Hope you get the right treatment soon and you have a decent consultant. Sending love and hugs Lynne xxxx

Wow Debs that was a long wait from early Dec. ☹️.

Also why did it take 10 years all in all - I don’t understand these things - I know that I know very little medically except my own experiences - but being undiagnosed for that long doesn’t seem right?

What is the way forward, or don’t you know yet?


Trust1 profile image

Hi Deb,

You probably already have this, but in case you don't, here is the link to our publication on Autoimmune Hepatitis;

Wishing you all the very best with treatment,


Hi Debs, hope you get the right treatment very soon, and get back to some health.

Finally you have confirmation, but once again your losing the consultant who has got you diagnosed! You ill be an expert in different hospitals at this rate. There is a big multi story car park there and its a big place,like Salford. I know all my ills are down to a do its own thing immune system, T cells etc. I dont do alternative stuff but there has been some promising research on oxygen therapy, similar to treatment for divers suffering from the Benz. There is a place in Manchester , a charity for MS. They accept people who have other conditions that cause fatigue and chronic pain. Getting round to it eventually, but we both have enough on at present lol This keto diet is working. I have lost my craving now for naughty stuff! A stone gone in 3 weeks, I know some of its fluid, but I know its working so well. Hazelx

Well done on the weight loss😄 I'm seeing the dietician on the 10th as the diet for liver disease and the diet for diabetes are different so I want proper advice from an expert. I had my thyroidectomy surgery at the MRI but that was in 93 and it's totally different now. I've taken my mum for angioplasty at the MRI and have used the multi story but it's a bit of a hike so we had to get her a wheelchair. I'm taking her to get a rollator (a 3 wheeled walking frame) she's not happy about it but she's worrying me by her unsteadiness. I want her to use it in the house too but she's refusing to. She has changed quite dramatically in the last few months, she's suddenly become quite frail. She's 85 but she's always looked smart and wears make-up but I think she's depressed. My step dad has Alzheimer's and refuses to even go on a short coach holiday so she's decided that I should go with her 😱 quite frankly I couldn't manage her, I don't feel up to it. It's difficult when an aging parent needs your attention when you just want to have someone look after you. I look after my grandsons a couple of days a week after school, there are another two grandma's but neither of them help out. I'm anxious about being on immunopresants and catching whatever they want to share...they're little germ factories 😄 sorry for the long rambling moan 😳

Hi Debs, glad you've got the correct diagnosis at long last and I hope that you're treatment goes well. All the best. Alf

If you dont mind me asking Grandma Dylan what blood test were consistantly high and how high were they?

You may also like...