British Liver Trust
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First Post - possible Auto immune Hepatitis (AIH)

First Post - possible Auto immune Hepatitis (AIH)

Hi All

I've been reading this forum for a while to try and get some insight into liver disease but this is my first post. background is I recently moved to live in spain but not completed residency yet, so i have a foot in each country and am not covered by the spanish healthcare system, nor am i insured. Went to a private (english speaking) doc here for an unrelated issue and she took my blood pressure, which was very high. Prompted by that she asked how much I drink.. and I was honest .. for the past 10 years or more I've drunk about a litre (sometimes more) of lager most evenings.. habitually... sometimes more if we've been out during the day. Rarely drink spirits or wine. She said...oooh... that's a lot... can cause liver issues in your age group (I'm 57) so we'd better do blood tests.

First test was GGT 240, ALT 78, AST 81. Doc told me that indicates liver issues.

I should say here that I've never had any symptoms of liver disease... no pain, no jaundice, itching etc. Nada to indicate anything going on.

She said I need to stop drinking for 3 month & come back for tests.

Next tests 3 months later alc free was GGT 209, ALT 110, AST 75.

She also did tests for hepatitis, bilirbin etc. All those were fine.

Also did an ultrasound which showed inflamed liver but not to a huge degree. that showed no evidence of fatty liver. (I'm pretty fit and not at all overweight, eat healthily and exercise - walk a lot, ride bike, swim etc).

I also have vitiligo so she said that it could be autoimmune hepatitis as autoimmune conditions go hand in hand so she suggested I do a further 3 months alc free to see if that makes any difference before going on to expensive autoimmune tests (I'm paying for all this privately and it's costly!)

So last lot of tests were a week ago and results are still high.

ALT 94, GGt 144 and AST68.

So after that she suggested I see a liver specialist who also did an ultrasound. She said the blood results were not hugely worrying although on the high side she says my liver is functioning fine. The ultrasound showed signs of early cirrhosis and her view was that I've probably had liver disease for many years. She thinks likely auto immune but it's yet to be diagnosed. However, she said it will more specific blood tests, probably a liver biopsy and she also recommended endoscopy (to check for varices) . Treatments are now getting expensive and I'm back in UK in april so I'm going to see my UK doc to see what he thinks.

In the meantime we are applying for residency in spain as my husband is now 65 and we will then be able to get treatment on the Spanish health system as the UK repay it... I can also be treated in the UK under the same agreement. I don't have any qualms in getting treated in the UK because I have always worked and have a full 40 year National insurance record.

I guess my question really is... how long does it take to get a diagnosis.....is there anyone here who also has vitiligo and AIH (I read that vitiligo can be a symptom of liver disease.. I've had vitiligo for 23 years or so.. would that indicate my liver issues are 20+ years too? ) Also has anyone experience of the practicalities of being treated in UK when you live abroad.? At the moment, the tests I need are expensive in spain and I think I'll have to have them in the UK...but is that practical?

It's odd - I really feel very healthy but my liver tests show there is something amiss.

If it hadn't been for the doctor in spain doing a blood pressure test and lab bloods, then I wouldn't even know that there was anything wrong...

thank you for reading this far!

3 Replies
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Firstly, whilst your bloods seem high to you, they are not really high enough for you to have developed jaundice. Secondly, in the UK, the only way that they can confirm auto-immune hep is by biopsy. The usual route here is to take bloods and look for certain key indicators, then they start to rule out all the other possibilities.

It is not possible to state when the liver issues started generally as you can function well in life with a liver that is not fully operational, so as far as I know being able to say when the liver started to incur damage is not something the docs will be able to tell you.

Once they have ruled out other causes of possible liver damage, (viral Hep A,B,C etc; Fatty liver, alcohol/ drug induced) only then will they look to do a biopsy to confirm the AIH. Since I am not medically qualified I cannot say with any certainty that your liver function levels are actually high enough to give them any cause to do a biopsy. Only a hepatologist/gatroenterologist will be able to tell you that.

I have AIH and my ALT was around 1000 at diagnosis and I didn't feel ill up to that point either! This is what I mean about having quite a lot of liver damage and you wouldn't know. I did develop jaundice fairly quickly after bloods were taken and was treated in hospital straightaway. Only after leaving hospital did I develop itching.

I didn't need an endoscopy for diagnosis and in fact didn't have one until I had AIH for a few years, so this suggestion seems a bit premature. According to my notes, they would need to be looking at your platelet count to ascertain whether you are at risk of varices.

Anyway, hope that was helpful. Good luck:)

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thanks so much for taking the time to reply and for such helpful comments.

I've had the hepatitis tests (negative) and the scan shows no fatty liver. As i haven't had alcohol for 8 months now, the doc said it probably wasn't alcohol related as she'd have expected the results to have fallen faster (although she said to stick to not drinking)

By the time I see my UK doc in april that will be 9 months alcohol free. I'll see what my UK doc says.

Thank you so much...at least I don't feel so worried now.

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Only too happy to help. Also glad to be able to lessen the worry. Just expect to be asked a lot of questions if you do come for treatment here as I had to answer repeatedly how much I drank (I drank very little- maybe a glass of wine a month) since they want to be certain of ruling out other causes. When I say drug induced, it is known that certain medications, that have been prescribed in the past can cause AIH, so not necessarily recreational drugs, so that is something that they will consider too.

I hope it all works out well for you. All the very best :)

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