Diagnosed with autoimmune hepatitis - British Liver Trust

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Diagnosed with autoimmune hepatitis

Time4care profile image

Hi this is my first post on this site so please forgive if I sound naive, have been having trouble with my liver functions showing very high readings, I thought it was down to the fact that I had my gall bladder out, however not been able to get over the op or I thought I wasn't, having hot sweats,joint pain very tender tummy and right hand side, headaches and feeling very sick, GP kept sending me for blood tests, he called me back on Tuesday to say I had tested positive for autoimmune hepatitis and was arranging an urgent referral to a liver specialists! I've been able to go back to work since the 11th September, I had never heard of AIH and I'm unsure what to expect I've got a scan this week and had more blood tests done! Any advice would be appreciated as I don't have a clue what to expect? Many thanks

28 Replies

a) What are the numbers?

b) Have they indicated any degree of fibrosis or cirrhosis?

hepatitis is when your liver is inflamed - from any number of causes. Fibrosis is the scar tissue in your liver resulting from the damage from the inflammation. Cirrhosis is when there's lots of scar tissue.

Auto-immune Hep is when your immune system attacks your liver causing inflammation (hepatitis) and fibrosis.

It's usually treated by giving you corticosteroid and immunosuppressant drugs to tamp your immune system down and stop the damage, allowing the liver to function and regenerate. The treatment has a good success rate in controlling AIH - the idea being to prevent it going as far as cirrhosis, but even with cirrhosis the treatment is the same.

Main thing is it's not the end. AIH can be controlled for entire lifetimes.

To start with read this....


and stop drinking - drinking causes damage to the liver so no need to make it worse.

Best of luck.

Time4care profile image
Time4care in reply to MisterX

I didn't even know there were more things you could have as GP just gave me the "you have tested positive" chat and as I had never heard of it I just replied "oh right"

Time4care profile image
Time4care in reply to MisterX

thank you so much, I'm finding the whole thing worrying I'm 60 and had never heard of it! I'm trying to keep open minded about it , but you input is appreciated

Firstly your gp will probably not know a lot about Aih other than the basics and all treatment will come from your consultant and gp will act accordingly. I was advised not to drink alcohol or take any supplements of any kind. Your Aih can be controlled and good quality of life will continue with a few adjustments to how you take care of yourself.

You will most likely have the treatment mentioned by mister x and regular bloods to check your liver function.

I would advise making a list of questions before your appointments. And ask if you dont understand anything. Also mention all your symptoms even if you dont think they are relevant as they could be linked.

Lastly your liver is going to be working hard so try to be aware of what 'toxins, you may be taking in and reduce them to help your liver. Good luck and stay well .

Time4care profile image
Time4care in reply to chris2591

Thank you so much for your help

Hi Time4. There is no single blood test for AIH, so your GP is jumping the gun a bit. AIH has to be diagnosed by a number of different tests, including a liver biopsy. I would wait to hear what the hepatologist (I hope its a hepatologist not a gastroenterologist you are being referred to) diagnosis. In the meantime, as other have said, no alcohol and a good diet. Without your gallbladder you should already be on a suitable diet, i.e. limited amounts of fat and sugar, not too much dairy, small frequent meals not few large meals etc.

There is treatment for AIH as Mister X says. I suggest you read up on AIH before your next appointment, so that you understand what the specialist is talking about!

Time4care profile image
Time4care in reply to Bolly

Thank you, GP mentioned biopsy and scan, so am I right in thinking the blood test is only part of it? Sorry to sound thick

MisterX profile image
MisterX in reply to Time4care

Much better to ask than not. Everybody here will have some understanding of what you're going through having been through it themselves. Do keep posting and asking.

The two aspects to separate in your mind in all this are the AIH which is the inflammation and the fibrosis (or cirrhosis) which will be how much scarring has taken place...

The blood tests tell you something is up with liver function, depending on the detailed results the doctors can often narrow down the cause. In the case of AIH there are a couple of antibodies which will indicate an autoimmune cause (ask me how I know :) ). Once the blood tests point that way, a scan or scans will show indications of the degree of fibrosis and a biopsy will show both the degree of fibrosis and the level of hepatitis (inflammation). The biopsy can also definitively confirm if it is autoimmune as there are specific markers that are different from say damage caused by alcohol.

So yes blood test, scans and biopsy. The blood tests can give your GP a pretty good idea that it's AIH but the biopsy will give definitive confirmation of the diagnosis.

Important to remember a few things.

The liver is the only major organ that regenerates itself.

You can live normally with a huge amount of liver tissue out of action - 80-90%

AIH responds very well indeed to the usual drug treatment

Keep on posting here as you get information.

Good luck.

Time4care profile image
Time4care in reply to MisterX

Thank you for your kindness and information I'm starting to understand it now ! Can make you feel very thick! Lol

MisterX profile image
MisterX in reply to Time4care

Well you shouldn't, I'm awash with degrees and I didn't know any of this, nor just how much the liver does. It's very very complicated.

Keep your chin up.

MisterX profile image
MisterX in reply to MisterX

Oh one more thing that occurred to me. When you had your gallbladder out one might have expected the surgeon to notice if your liver was cirrhotic or even had significant fibrosis, so whilst not a guarantee I'd say that's something to be hopeful about at this stage as the earlier it's caught the better.

Wendy29 profile image
Wendy29 in reply to MisterX

I've just done a free online liver disease course at futurelearn.com run by birmingham university - it was great!

Bolly profile image
Bolly in reply to Time4care

This link takes you to a typical 'scoring' system to diagnose AIH. napervillegi.com/contrivanc...

You can work it out pretty much yourself, but need to have the results of recent blood tests to hand. Even if you dont have access to your blood tests, you will see that a GP who says you have tested positive on the basis of one result, is making only an educated guess and not making a definite diagnosis.

lola800 profile image
lola800 in reply to Bolly

Bolly's right. It takes more than one test to determine AIH, along with a liver biopsy.

Time4care profile image
Time4care in reply to lola800

Yes it does take more than one blood test!!! As I now know but my GP in this instance was spot on! So thank goodness for his not one but several blood tests and his quick referral! So thank you for your input Lola but as you can see I haven't posted anything on this site for some time, so I'm quite amused this just popped up 😃 as it happens I can say the prof I'm under asked lots of questions, lots of blood tests scans and agreed with my gp so hooray for a GP and an educated guess? 😃

lola800 profile image
lola800 in reply to Time4care

That's great. I have de novo autoimmune hepatitis as a result of a liver transplant I had in 2011. I am taking 10 mg prednisone, 75 mg azathioprine daily, which is protocol (at least here in US) for management of AIH. Best of luck.

Don't despair - not the end of the world and certainly not the worst diagnosis you could have. Depending on how severe your AIH is at, it's possible they need a liver biopsy (no biggie), treat with steroids (recommend budesonide), on their own or with azathiaprine an immunosuppressant. I find one of the most irritating things is being the nominated driver all the time as its best to avoid alcohol. Eating low fat helps me too and exercise. It's scary at first I know

bam1993 profile image
bam1993 in reply to Wendy29

Hi Wendy...I too have just been diagnosed with AIH (after a long wait!!) I had a biopsy in Sept and got the result in November and have now been sent to another hosp as the first one I was under only had a 'Gastro' dept-not Heptology. I also suffer from Lupus (diagnosed in Jan 2012-but had suffered for years before this)...At the moment I am just on Pred (10mg/15mg daily), but my question is how did you get Budesonide? I have looked it up and it seems like a much better option than Pred, which gives me awful side effects. Did your consultant suggest it or did you have to ask for it? My liver results are now going down-but my Lupus symptoms are still really flaring and I am hoping that the new consultant might suggest Budesonide and perhaps Aza...looks like this combination gives good results. Julie

Wendy29 profile image
Wendy29 in reply to bam1993

Meant prednisolone - anyway I have some side effects but these are not too bad and much better than the alternative!

Hello Bam - I used to go to the lupus clinic at St. Thomas' but decided one lot of hospital appts at Kings was enough as most blood tests were doubled up and I believe it's all under the AI umbrella! I was advised to go with bude by a hepatologist in Kings whilst having tests in hospital (not my consultant) - so I just told my consultant that I was advised this - my consultant would have gone for predict as his drug of choice - anyway has worked well for me and was my decision not to go with the AZA. I believe it doesn't work for everyone.


this is my first time on the site too and I am waiting for blood results to see if I need a biopsy for suspected AIH. I have seen liver specialists since september and at my last appointment was told that the biopsy will be reviewed in january as there has been an improvement in my liver tests. I was diagnosed with an auto immune condition 2 years ago which I have probably had all my life. My question is this, none of the specialists have advised any "liver care" although I have asked if there is anything I can do to help my liver improve. I drink alcohol maybe twice a week not a great deal and I just follow a regular diet. Should I be following a special diet? I have read many posts which advise low fat, low sugar, no alcohol etc. All my other tests have been normal until June of this year. I feel so fearful about the future but gain a lot of perspective when reading how others on this sight have coped and are still able to remain positive. Best wishes

Bolly profile image
Bolly in reply to krysty

Hi krysty - if the autoimmune condition you have is autoimmune hepatitis, then you should be put on a specific treatment regime for it, once the diagnosis is confirmed. yes cutting down on or cutting out alcohol will help, as will a healthy diet with only limited amounts of sugar and fat (but that goes for everybody!). There is no 'special' diet required, though its sensible to listen to your body and cut out anything which gives you say, indigestion or a feeling of nausea or upset stomach. What is the autoimmune condition diagnosed 2 years ago?

Hi thanks for replying, I have antiphospholipid syndrome or Hughes syndrome and have been taking warfarin for almost two years, with lots of bad side effects, which are also being scrutinised. I had abnormal liver results diagnosed in june and never had them before in my life, but guess thats how it is for all of us..

Bolly profile image
Bolly in reply to krysty

I'm not sure if a biopsy would be recommended if you are on Warfarin, its normally done via a needle through the abdominal/rib cage area. It may be that you will have to have a transjugular biopsy, due to your clotting issues. Not sure if Warfarin can mess with liver enzyme results, have you asked your doctor if this is a reason for your abnormal results?

krysty profile image
krysty in reply to Bolly

Hi interestingly I have raised this with the liver consultants a couple of times as my results have only been abnormal since i started warfarin. Prof G said he had never heard of warfarin causing inflammation but then he googled it to apease me and was surprised to find this could be the case, similarly when i was told to identify if there had been any other changes since the abnormal results i said that i had asked for a sleeper in June of this year as i was due to start night working and subsequently i was prescribed temazepam and this was the only other medication apart from warfarin that i have taken consistently. i said that i had looked into whether benzos could affect the liver and again this could be the case. So i cut out the sleepers and had to reduce my warfarin by 1 mg anyway due to elevated inr results and my next appointment showed a decline in the abnormal results. I will see what happens when i go in january for my next appointment but at the moment i am trying to eliminate other causes and hoping to avoid a biopsy and steroids but am not that hopeful it might all be coincidence. Thanks for getting back to me ...and yes my APS consultant has already had the chat about me having to come off warfarin in order to have a biopsy if required best wishes...

Bolly profile image
Bolly in reply to krysty

If your liver enzymes are coming down as you reduce your medication, I would be very cautious about accepting a diagnosis of autoimmune hepatitis too quickly. Medication can trigger AIH, but if you can normalise your liver function yourself, it would be great, as once you start on meds for AIH it could mean being on them for years and may be totally unnecessary. Steroids are not nice and if you can avoid them, great. Biopsies are not nice and if you can avoid one, great! And yes paracetamol is well known for causing liver damage over time.

Hidden profile image

I have autoimmune hepatitis. When I was diagnosed I was in hospital with acute jaundice and liver readings in the thousands. Diagnosis followed scans, a raft of blood tests and a liver biopsy. I was put on high does of prednisolone then transferred to azathioprine, then subsequently to mercaptopurine as the azathioprine made my white cell count plummet. I have continued working full time apart from 3 weeks off work when I was in hospital (although I felt pretty awful for a year).

My liver readings have now returned to normal and my bloods are checked every 3 months. I now also have a diagnosis of mild lupus, but there is so much overlap with autoimmune disorders and I am so immunosuppressed (mercaptopurine, hydroxychloroquine and topical pimecrolimus for skin issues, not to mention long-term erythromycin for skin also and vitamin D supplements) it is hard for them to know really, they just say generalised autoimmune symptoms in addition to AIH. Blood results for AIH include anti smooth muscle antibodies and raised iGg. I also have other antibodies but I'm not sure what.

So to sum up, this disorder is treatable and controllable although currently not curable, although it is a life sentence it is certainly not a death sentence. Just make sure you have a sympathetic GP and a good consultant.

Good luck!

Thank you I am trying to rule out everything else as a causal factor before the biopsy (if it has to happen). i don't tolerate medication very well, never have done but since my diagnosis of APS almost two years ago I have had so much paracetamol for residual pain from a dvt in my thigh and warfarin for life and I think medication has to be considered when looking at reasons for changes in the liver. i think your story is very inspiring!!

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