AIH diagnoses with asymptomatic patients, questions and my story

[SKPike]

Thought I'd write here, I've been googling for a few weeks now about AIH and it's pretty hard to find support group forums other than this. I'm not from the UK, but cant find anything in my own country. I'd love to hear some stories how one got diagnosed with mild lft elevations and how long it took to diagnose?

Anyway, my story is this: I'm 35 years old active male. 2 years ago my GGT and Alt was 30. I had elevated lft's 6 weeks (june 2020) ago in a health check up. Alt was 153 (should be less than 50 for my age), GGT 281 (should be less than 60). After that I've had countless blood tests. In 5 weeks my Alt came down to 98, GGT to 151. 3 days after that blood test doc had scheduled another set of blood tests. I felt a bit off that day and had a sore throat and generally feeling unwell, like a flu. No fever, no coughing, only sore throat and feeling unwell. Alt had jumped back to 151, in 3 days. I felt off and had sore throat for 4 days, 2 days after feeling better alt was 132. Next blood tests are in a couple of weeks. So far, Ast has been only mildly elevated, highest was 60 (should be less than -45), last time it was 52. Alp was at highest 136 in june (should be less than 115), last time it was 90. Bilirubin, albumin and everything else is normal. Hemoglobin, white blood counts etc also normal.

I also had an ultrasound in june in the beginning of this journey, and doc said it was clear. Everything was normal in size and looked normal.

Positive ANA & SMA and IgG was somewhat elevated, 19 (should be less than 15). Doctor suggested autoimmune hepatitis. Every viral hepatitis, celiac disease etc has been tested.

I am now in a queue for a ct scan and a biopsy to confirm AIH. No idea how long it will take, so I'm stressing out about this quite a lot. I havent had any symptoms, or very mild symptoms. Some fatique, but I am a father of a small baby, so it might be because of that.

Other info about me, I have been drinking alcohol with modest, less than recommended maximum amounts per week. Maximum around 6-10 units per week. And alcohol has been excluded from possible reasons. I did take early summer a few pills (2 or 3 times on separate occasions) of cetiritzine for allergy, like I have been taking every early summer. Also been using diclofenac gel for back pain during the spring and early summer. Also I started taking vitamin supplements this spring(vitamin d, c etc), bought from a supermarket. I stopped all medications, alcohol, vitamins when I found out about elevated enzymes.

My questions are:

1. Is there any chance that this is not AIH? Considering my Alt was coming down before my flu (or some bug). And that it started coming back down when I got better. Can flu or throat viruses elevate Alt?

2. If this is AIH, I guess the maximum time I could have had it is 2 years. Cause all was normal 2 years ago. Is it possible that there is already cirrhosis in my liver despite normal liver function and normal ultrasound? Or should ultrasound pick up AIH related cirrhosis? What about fibrosis?

3. Is there any possibility this is drug related and not AIH? From cetiritzine or diclofenac gel? Cetiritzine can rarely cause elevated lfts and diclofenac pills also, although I used diclofenac gel. Doctor thought its unlikely, but would love to hear other opinions also.

4. I read somewhere that one doesn't even need medication if only mildly elevated lfts? Is that true?

5. Does mildly elevated Alt mean lower infection, meaning lower damage in AIH? What about Ast, low levels of Ast equals low damage?

6. Can mild AIH turn into severe suddenly? Can Alt fluctuate without medication? Or does Alt and inflammation get worse without medication over time?

7. Biopsy.. what risks does it carry? I realize that theres a bleeding risk, does the radiologist check for bleeding with ultrasound after biopsy has been taken?

This was a pretty long text, so thanks to anyone who read through. My diagnosis is ongoing, guessing maybe a month until biopsy and a month after that to hear the results. It's a long wait, and I'm really stressing about this, so thanks for any replies!

[AyrshireK]

Howdy SK, welcome to the forum.

I'll see if I can answer some of your points.

If you do Facebook at all there is a fantastic AIH support group on there, it's UK based but has members from all around the world and it's supported by some of the top doctors in the UK who are working in the field of AIH research and treatment. You'll find it at:- facebook.com/groups/AIHorgUK/

My hubby has cirrhosis due to AIH, he never had any symptoms right up until he was displaying symptoms of advanced, decompensated cirrhosis. His LFT's are usually normal other than when he was first admitted to hospital when they were classed as deranged. His cirrhosis was evident on ultrasound and by symptoms present.

There is also information about Autoimmune Hepatitis on the British Liver Trust page at:- britishlivertrust.org.uk/in...

As regards some of your other questions :-

1. Is there any chance that this is not AIH? Considering my Alt was coming down before my flu (or some bug). And that it started coming back down when I got better. Can flu or throat viruses elevate Alt? When your body is fighting an infection then ALT can indeed be elevated, I am not qualified to say whether your levels do or don't indicate AIH and diagnosis is based on a mixture of tests with biopsy being the most definitive as it looks at the liver on a cellular level and can indicate where the hepatitis/liver inflammation is and whether or not that indicates AIH.

2. If this is AIH, I guess the maximum time I could have had it is 2 years. Cause all was normal 2 years ago. Is it possible that there is already cirrhosis in my liver despite normal liver function and normal ultrasound? Or should ultrasound pick up AIH related cirrhosis? What about fibrosis? Ultrasound would normally indicate if there were changes in the liver shape and texture which would indicate whether there was cirrhosis present. Another scan called a fibroscan might be useful as it identifies the level or degree of stiffness/fibrosis in the liver. Again, if fibrosis or indeed cirrhosis is present it should be picked up in your upcoming biopsy and CT scan.

3. Is there any possibility this is drug related and not AIH? From cetiritzine or diclofenac gel? Cetiritzine can rarely cause elevated lfts and diclofenac pills also, although I used diclofenac gel. Doctor thought its unlikely, but would love to hear other opinions also.

Certain drugs have been identified as possible triggers for AIH but it's usually things like some antibiotics & some over the counter supplements (green tea supplements), it is also possible to suffer drug induced liver injury. You do though have positive results for ANA/SMA which indicate something auto immune is going on but I don't have enough expertise to comment on exactly what.

4. I read somewhere that one doesn't even need medication if only mildly elevated lfts? Is that true? That would be entirely up to your doctors - some may adapt a watch and wait scenario, usually when there is inflammation present they use steroids initially to bring down the inflammation numbers and then introduce an immune suppressant to keep the immune system from flaring and causing more damage. In my hubbies case his damage is already done and his liver injury is no longer occurring so he is on a maintenance dose of steroid only and no immune suppressant.

5. Does mildly elevated Alt mean lower infection, meaning lower damage in AIH? What about Ast, low levels of Ast equals low damage? ALT and AST are both inflammation markers (and are not purely liver related), the lower the number the less inflammation is present. In some folks with AIH, when they have an uncontrolled flare it isn't unusual to see numbers into the many hundreds and even thousands and at this level there will be liver damage occurring.

6. Can mild AIH turn into severe suddenly? Can Alt fluctuate without medication? Or does Alt and inflammation get worse without medication over time?

AIH is a lifelong condition, it can be controlled with medication but uncontrolled AIH, (especially if there is ongoing liver inflammation) will eventually lead to liver damage. Some people do manage to go into a sort of remission but there is a risk of flaring.

7. Biopsy.. what risks does it carry? I realize that theres a bleeding risk, does the radiologist check for bleeding with ultrasound after biopsy has been taken?

Biopsy is the gold standard test for working out what is going on at a cellular level in the liver, it is usually a fairly quick and relatively painless procedure. The entry point is numbed with a local anaesthetic. It only takes minutes to obtain the samples and after that there is usually a few hour period where you need to lie down to prevent bleeding and you are closely monitored with regular checks to ensure you are not bleeding internally. My hubby has had two liver biopsies - one via the traditional route through the side and also one(because he had low platelets and a high bleeding risk) where they went in via the jugular vein. If your platelets are normal they usually do the one on your side.

It sounds like you are in good hands and that your doctors are doing all the necessary tests to put the pieces of the jigsaw together to hopefully get you a diagnosis so you know one way or another.

You'd be made most welcome on the Facebook page if you wanted to head over there, what country are you in because I also know there is a US based AIH facebook page too.

Hope that helps a bit, forum rules means we can't answer specific result based questions but hopefully i've given some insight and pointers.

Katie

[SKPike in reply to AyrshireK]

Thanks for your reply! It did make me feel a bit better.. Especially the part about ultrasound should pick up cirrhosis.

How old was your husband when he was diagnosed? How long has he had it?

But yes, CT scan and biopsy will confirm any damage done to my liver, but it could be 2 months before I have any answers.. It's a long wait. I'm fearing this will worsen during the wait and possibly do more damage. And around 2 more weeks till next blood tests to see are my levels coming down or going up.

But my main fear is that what if this is something else (even worse, like tumor)? Everything points to AIH, plus nothing was seen in US. Doctor even assured me that it's not my biggest fear Still, human mind can do all sorts of tricks. I am also listening to every bit of my body now, for example my right shoulder has been hurting pretty badly today, even though it feels as if muscle pain, still I'm thinking it's because of my liver (because I googled shoulder pain & liver connection).

And googling just seems to make me feel even worse, but I cant even stop it. Cant work, cant sleep, cant eat. I have no appatite and some nausea because of this stress. All these symptoms started when I heard about my elevated lft's. I actually thought I was in the best shape of my life until that phone call I got.

[AyrshireK in reply to SKPike]

My hubby was a super fit, long distance walker who never took a day off, either working at his job (welder in heavy engineering) or out walking (silly distances). He probably first started feeling unwell in 2008 (age about 47). He started getting unstoppable nosebleeds, disrupted sleep and chronic fatigue. At the time he was trying to balance work with looking after his dad who was suffering from alzheimers and dementia so he had major stress going on. He moved in with me in 2010 and had all of the above symptoms still plus tummy troubles, no libido or function and just generally under the weather. A GP told him he had anxiety and we just put it down to that and the stress of the situation with Dad. No one ever investigated him for anything physical.

In early 2012 so approaching 50 he started to notice blood in his stool which as a typical bloke he ignored or put down to a rectal tear. Over night April 23 2012 he wakened in the night and was vomiting blood so I rushed him to A&E and he spent 3 weeks in hospital where he was eventually diagnosed with cirrhosis due to autoimmune hepatitis, portal hypertension, bleeding varices and portal hypertensive gastropathy of the fundus and stomach lining.

Try not to stress, I know that is easy to say but with anything auto immune it is thought that stress can actually be a trigger and can make symptoms worse. I know on the days surrounding my father in laws eventual death hubby was really unwell, his pallor changed and he had pain in his liver area which he doesn't normally have.

Wait and see what test results come up with. One thing with AIH is that when caught early it is treatable and controllable. In hubbies case it had already done it's damage before it was caught and in his care he has a rare diagnosis of burned out AIH so at least at present he has no ongoing inflammation and it might be that his liver may remain stable.

Katie

[SKPike in reply to AyrshireK]

Thank you for sharing your husbands story. Good that he's doing ok now!

One thing I cant find, is how fast AIH progresses if left untreated.

And cant find anything on mild versions of AIH. It seems that every story I find, they had very high levels of Alt and other symptoms.

I am trying not to stress about this, even my wife keeps telling me that I'm stressing too much. "If it is AIH then you just start taking medicines for it, thats it" etc.

[AyrshireK in reply to SKPike]

He's doing ok in the grand scheme of things in that he has stable cirrhosis at the moment but he is far from well, sadly various side effects of cirrhosis prevent him from living a 'normal', 'fully fit' life.

Katie

[Scared3]

Hi SKPike. How did you get on? I am in a very similar situation to what you were in. I had an ultrasound for an unrelated injury and found my liver was fatty and enlarged. I tested positive for smooth muscle autoantibodies but my liver function tests are all in normal range and have been for the last 4 years +. I have been referred to a specialist but that was over a week ago and I don't even know which hospital yet let alone when my appt will be. My GP has suggested it may be autoimmune hepititis but when I asked about my LFT being normal he just said that was good but didn't know about the liver and autoimmune. I'm scared while I wait and like you can't stop searching for info. I have young kids and am scared. I don't do well on steroids so am scared of that prospect too. Can you please tell me what your outcome was? Your case is the closest to mine I could find. Thanks in advance!

[SKPike in reply to Scared3]

Hey!

I'll try to summarize what has been happening during the last 6 months.

So I had a biopsy and a CT scan in august last year. CT scan was all clear, nothing was found on it. Biopsy didn't show any sign of AIH, but it did show inflammation in bile ducts with eosinophilic compound, which according to the report would fit for a toxic/allergic reaction to something. It actually read "findings dont fit AIH in any case". And I was taking vitamin supplements for the first time in my life before my first abnormal bloods were taken. So I was diagnosed with liver inflammation of unknown cause, "it'll go away". Fast forward 1,5 months, it didn't go away. My alt was hanging around at 70-80 area, GGT was at 110-130. All others were normal. So in october diagnosis went to AIH. My doc gave me a choice, Prednisolone & Aza or Budesonide, pick your poison. I chose Budesonide. I started that on 20th of october, 6mg per day. It normalized my alt in 8 days. Then biopsy was reviewed again in november, and they found on 2/30 samples granylomatous infection in bile ducts, which would fit PBC, so diagnosis went to AIH-PBC overlap. But all PBC levels have been normal always and I'm AMA-negative (antibody test for PBC, which is positive for 95% of patients), so no meds for it. And biopsy still didn't show any sign of AIH.

Then suddenly in january my doctor said that "I think we can forget the whole PBC-thing" and "your case is so mild we reviewed your case again and and it still might be some passing phase". So the long term plan in january was to do monthly bloods and see if alt & igg still good in february, drop Budesonide to 3mg per day. They were good and I did drop it. Still bloods were good in march, next test in june. I just left a message to my doctor that could we add SMA & ANA antibody tests in the next bloods, if they are negative, I want to discontinue my meds. We shall see.

Anyway to your case, fatty liver can also cause positive SMA test. And some people do have positive even though they are completely healthy. I wouldn't worry about it too much, keep an eye on it. And if it turns out to be AIH, it isn't the end of the world. If your levels are good, chances are you have a mild case (like mine), meds keep inflammation in check and life goes on. I know what you mean about being scared with children. My wife just actually gave birth to our daughter 5 weeks ago.

[CarpeDiem11 in reply to Scared3]

The poster has written below that the test for PBC is anti LKM, but this is not correct. In 95% of patients, it is the AMA which is positive, but not everyone gets a positive result. Even if the AMA is negative, you can still have PBC, another autoimmune disease, which attacks the bile ducts.

Anti- LKM actually confirms Type 2 AIH. I have this, which is how I know. Also, been tested for PBC, hence the above info. Been diagnosed with AIH over 10 years. There are I think 4 types of AIH. Most people have type 1, type 2 is apparently more common in very young people.

[SKPike in reply to CarpeDiem11]

I edited and corrected my post.You are right, I got AMA and LKM mixed up. I havent been tested for LKM, only AMA several times and always negative.

[CarpeDiem11 in reply to SKPike]

I have to say I'm impressed you're so well informed so early in your journey. I had AIH for several years before anyone told me I had LKM & thus Type 2. Thanks for the edit, all these auto- antibodies can be confusing & I thought if others were reading, then they could go away even more confused. Glad you took it in the spirit intended. I hope things continue to be stable for you, especially now with such a young family to look after. Hope the baby isn't causing too many sleepless nights👼

Bud & Pred work differently in terms of how the liver processes them, which is why many prefer to use it.

Wishing you well.🙂