Newly Diagnosed with Auto Immune Hepatitis


I have just been diagnosed with auto immune hepatitis after developing jaundice. It's all a bit scary as I am only 28.

It's all very new to me and I am not sure if anyone out there can offer advice or relate to the symptoms I seem to have experienced?

Unfortunately not much seems to be known about the cause. Does anyone have this condition too, that I can speak to about it? ( re symptoms, looking after your liver, what could cause flare ups, research into the condition etc.)

I've been told it could be genetic? My aunt & cousin have another auto immune disease (rheumatoid arthritis), that could be caused by the same thing. Does anyone have any similar stories of auto immune diseases in the family, or what they think could have caused their condition?

Has anyone had any underlying health problems prior to their diagnosis?

I had gum disease, meibomian gland dysfunction (dry eye syndrome) & what was believed to be IBS for the last two years.

Just before developing jaundice, I had extreme tiredness, was very low in energy, overemotional & depressed. Did anyone experience any of this too?

Has anyone else had IBS like symptoms with their condition? No matter what I tried eating, it always made me feel worse, so I rarely ate. I got terrible pains & discomfort after eating anything. I lost lots of weight over 2 years. This flared up again just before I was admitted to hospital.

I'm concerned the IBS like symptoms could flare up again & affect my eating & deteriorate my health. Has anyone experienced similar problems to this with auto immune hepatitis & do you have any helpful advice on how to prevent it coming back?

I still don't feel 100% yet, I get easily tired and feel discomfort in my side at times. Is anyone with auto immune hepatitis working full time? Do you find it difficult to cope and get easily tired, or is it manageable?

Does anyone know what kind of research is being done into auto immune hepatitis and if anyone suffering from the condition can be kept updated on it, or even get involved with helping research into the condition (besides fundraising)?

If anyone can give any helpful advice or information, it would be much appreciated. Many thanks :)

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7 Replies

  • Hi Sah27, can I point you in the direction of yet another support forum this one is the AIH one and there are loads of very nice folks on there who might be able to answer your questions really well, they have also just set up a closed Facebook page and all the folks on it are fairly expert on the condition.

    Although I am supporting my hubby who has an auto-immune liver condition, we only found out about his once it advanced to full blown chronic cirrhosis so we can't offer much advice on your questions but as I say the folks on the AIH site might be able to help more fully.

    All the best, Katie xxx

  • Hi sah, the website Ayrshire gives you a link to is really good. I have AIH and I joined it soon after diagnosis. There are 100's of members and the moderating team are really knowledgeable. Your GP may not know much about AIH, but try to get referred to a hepatologist who does.

    There is also lots of information on the British Liver Trust website here: that will help answer some of your questions about looking after yourself. Scroll down to the bottom and there is a leaflet you can print off for free and two patient story's you can read.

    In answer to some of your questions: tiredness goes with the condition I'm afraid, but with good medication and management you can live a long and health life, just learn to pace yourself and listen to your body.

    The IBS may be unrelated, it may be not. Have you tried gluten free or dairy free to see if you have any food allergies that are causing your discomfort with eating.

    Sjögren's syndrome is an autoimmune condition that causes dry eye, yes sometimes people do get more than one autoimmune condition.

    I don't work full time (I'm a lot lot older than you!) but I manage 20 hours a week. You will find full time mums and full time workers on the AIH forum, they just work out how to deal with the fatigue when it hits.

    I'm sure there's lots of research, there are some clinical journals you can get free over the internet, such as "Clinical Liver Disease" and read articles each month on the latest research publications.

    Rather than ponder the unknown, i.e the cause, work now on understanding the condition and managing it. Best of luck, there are many like you out there!!

  • I have been diagnosed with AIH for 3 years. At first I received steroids & Azathioprine for 6 months and with a good reduction plan I was off the steroids after 9 mths. I still take Azathioprine and have been advised by my consultant I will be on them for a total of 5 years. The hope is there will be more research and I will be able to reduce the Azathioprine without any problems. I have been advised the condition is genetic in women & my sons are free from it. I have 2 monthly blood test to check the condition & have for the last year only seen my consultant twice a year for a chat. I reduced my working hours from 18.5 to 15 over 3 days and try to have a sleep for I more than 20 mins which has helped and I believe kept me at work with no days off sick for 3 years. Always ask questions when you see your consultant and accept you will have one liver biopsy to confirm the condition together with regular blood tests to give you peace of mind. Look after yourself and no drinking of alcohol or fizzy drinks. Hope this helps and take care of yourself.

  • Hi Sah27,

    I'm sorry to hear about your diagnosis. I am 27 and was diagnosed with AIH age 13 so have put up with it for quite a while!

    As the others have said, there is some great advice out there and you need to make sure you have a good herpetologist. Also make sure that your GP becomes clued up on AIH- if you get an infection you will need to see a GP quickly to stop it getting worse as you are likely to be on immosuppressants and your immune system won't be able to fight off infections as easily.

    Also, fatigue is definitely linked to AIH. I worked full time up until very recently. You'll need to be a bit picky about the kind of work you do- retail and hospitality or work where you are standing up a lot of the time is not going to be easy.

    Look after yourself. Try and eat a healthy, balanced diet and take advice from your consultant when it comes to alcohol. I was told at diagnosis not to drink so never have but understand just how difficult it must be to give up. Exercise is very important but don't push it too much- I love swimming as it doesn't put too much strain on the joints (mine get very very painful). When I was diagnosed, I was told that I would probably need a transplant in my late teens/ early twenties. I still haven't had one and that is mainly from staying as healthy as possible. Take your meds and you will be at less chance of a flare up. They might or might not happen but you will learn to feel when they are coming on and rest up.

    IBS is a difficult one. I had a lot of IBS symptoms for many years but was hospitalised in January with an infected gall bladder. As Bolly suggests, try finding out if you have any food allergies or intolerance's.

    If you ever want to ask any questions, feel free to message me. AIH affects everyone differently but there are lots of people who have different experiences that you can draw upon. The best people to ask though, are the medical professionals- they may not know the answers straight away but have the resources to find them (you might need to keep bugging them!)

    All the best

    Jenni x

  • Hi Sah27 I too have AIH I was diagnosed some years ago after years of thinking I had IBS or something similar I now relate a change in my LFTs to a change in bowel habits etc. I am under the care of a gastroenterologist who has a special interest in liver disease. He tested me for coeliac disease which is an inabity to process gluten in the diet, this can go hand in hand with other autoimmune conditions so it's probably a good idea to get tested for this. I am in my 50s and work full time but am changing my job to a less stressful one to help me cope with fatigue. I have recently joined the AIH group referred to in an earlier reply and it's good to be in touch with others with this condition as we are are rare bunch!

    Sending you kind thoughts and best wishes

    Yvette x

  • Hi,

    Thanks everyone for the above links, I really appreciate it :)

    Also thanks to you all for the above information, it's very useful.

    Sorry to hear about your stories too, it's sad to hear but nice to know I am not alone! Hope you are all keeping well.

    Thanks Yvette, I'll see if I can get checked for coeliac disease.

    I am with a gastroenterologist, I'm very happy with my consultant, they have been with me since being admitted to hospital and throughout the diagnosis. I am getting regular blood tests and consultations so they are monitoring me closely.

    Some people have mentioned a herpetologist though, is this different to a gastroenterologist?

    I have had a liver biopsy, which confirmed my diagnosis and assessed liver damage, but going forward I need biopsies once every couple of years.

    Thank you so much! :) xx

  • Yes a gastroenterologist is different to a hepatologist. Gastro is latin for 'stomach' and hepato is latin for 'liver'. A gastroenterologist is a trained doctor who has gone on to specialise in the diseases of the stomach and whole digestive system and its disorders, so in theory from the top of your oesophagus to the bottom of your ... ahem .. bottom! A hepatologist is a doctor who has trained in liver disease.

    More NHS hospitals have gastroenterology departments than have hepatology departments, so many of us get a first referral to a gastro simply because there is one in our local hospital and we would have to travel outside our NHS area to a hepatologist.

    As you may have other issues apart from the AIH, ie the IBS or other digestive problems you may be best to stick with your gastro doctor to begin with, unless you sense they know little about AIH in which case go back to your GP and get a referral to a hepatologist who specialises in AIH.

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