autoimmune liver disorders

[Baffledmummy]

I’ve had elevated liver function tests since at least 2005...possibly earlier. No symptoms however after 2 bouts of obstetric Cholestasis with my pregnancies. Dr is now pushing for a liver biopsy as he thinks it could be some kind of autoimmune liver disorder. So I started googling and oh my god I wish I hadn’t. Anyone got any experience of liver related autoimmune diseases or persistently high LFT’s?

How high are your abnormal results? AST? ALT? GGT?
I have worked with children with auto immune liver disease, the majority of whom live perfectly normal lives with medication and regular monitoring. Fingers crossed for you .

I know they are outside of range and have bounced around a lot during and after pregnancy. To be honest, because it doesn’t impact my life in anyway (no symptoms) and various doctors have just treated it as a curiosity rather than a serious problem, I’ve never been too worried about it. I have a new specialist now who is actively pushing for biopsy. I’ve had ultrascans in the past which showed no scarring but I’ve to have another soon and decide from there. I’m thinking a biopsy is the way to go now.
Are the children you work with taking immunosuppressants? I’ve been reading up on these as it looks to be the first line of treatment and the side effects worry me, especially with two little kids of my own to look after.

I was diagnosed with primary biliary cirrhosis in around 2009. At first they just kept an eye on my bloods, then after a few years I was started on ursodeoxycholic acid. I then basically had no issues for years. I got pregnant last year and was advised to come off the meds. My bloods were better than ever during pregnancy, then shot up after DS was born. Now I’m back on the meds, and my consultant is considering whether I have an overlap with autoimmune hepatitis. I am also being investigated for vasculitis due to a recurring skin problem. The result of which is that i’ll probably end up on a course of steroids and/or immunosuppressants in the new year.

Those are the facts. Now for the personal side of it. At first when I was being investigated for a variety of liver disorders, I was very worried and upset. But I was surprised by how quickly I got my head around it and stopped worrying about what may or may not happen in the future. I have remained asymptomatic (unless the skin issues are in some way linked to the liver condition, though it’s not an itching problem and therefore not very likely). I have generally responded well to the urso and had no adverse affects from it. And I know that it’s definitely within the realms of possibility that the right medication will keep me well for many years to come, and that I may never end up with cirrhosis.

I’m struggling a bit more with the investigations for vasculitis (emotionally), because it’s another unknown. But I’m hopeful that once it has been correctly diagnosed, it can be treated, and will become another condition for which I am monitored regularly but which doesn’t cause me significant problems.

I know it’s hard, but try not to worry, and definitely try not to google too much, or at least stick to reliable websites like the NHS. It is definitely possible for conditions like this to be treated effectively and managed so as to prevent you from getting poorly.

isshoes thank you so much for sharing. I was put on urso during both pregnancies...first time it seemed to work, second time it didn’t make much noticeable difference to my bile acids.

It is a relief to see that it can be controlled effectively. Have you given up alcohol or changed lifestyle as a result? I have a couple of glasses of wine a week so not much but wondering if I should just knock it on the head altogether. It’s so difficult when you have no symptoms at all to imagine that real damage could be being done.

Awaiting a detailed liver scan next...may take a couple of months for an appointment apparently. It’s a long time to wait when I could be unknowingly be continuing to destroy my own liver in the meantime!

I did give up alcohol. I wasn’t told to - in fact I think my consultant at the time said alcohol should be ok in small doses. But I just thought ‘what’s the point’? I also used to get terrible hangovers and post-drinking anxiety, so it just seemed a good idea all round. I now don’t drink at all.

Diet-wise, I’ve not been so good. I was then and am now overweight. I’m trying to overhaul my diet now because with this new condition on the horizons, plus the likelihood of steroids, it seems like a no-brainer. But it’s easier said than done...

I have autoimmune liver disease. Mine is an overlap condition with features of PBC and AIH but one of the markers for PBC is absent so I am an even more unusual case! My LFTs were tested in my late 30s and found to be abnormal. Liver biopsy and a later scope of my bile ducts found not a lot wrong but they strongly suspected it was this. I had several years of not needing treatment, also had my last child with no major changes developing- autoimmune conditions often do clear up or go into remission during pregnancy.

Then in my early 50s so around 6 years ago I had my annual bloods done and it showed a problem - very high levels of everything really. A biopsy was done and found quite far developed fibrosis (which is really inflammation and scarring of tissue - in liver disease it’s a step before cirrhosis). Treatment began, initially high dose steroids which they reduced fairly quickly. I was on them a year I think but for most of that time I was on a fairly low dose. I then had an immunosuppressant started but had a reaction to the first two we tried. Now I’m on one that suits me, havebeen for a few years now, and the steroids are history. I hope for ever as I found them awful. The immunosuppressant is okay, I have minimal side effects, they do their job and the fibrosis has settled and I am on a stable dose. I get blood tests monthly, have had a few infections (several skin infections, also shingles). Some people have a trial without meds once the levels in their blood have settled. That’s not an option for me at present as I have a high risk of relapse but everyone’s different. I suspect too the view of doctors might vary and there’s not a huge amount of research of the specific variant I have.

Re-alcohol, I’ve mostly been told drinking in moderation is okay. I’ve never drunk much, at times a couple of glasses of wine one night a week to absolutely nothing for months. In the last year or two I’ve relaxed a bit, was at a wedding a few weeks ago and had 2 glasses of wine with the meal. That for me is pushing the boat out!! When my liver results (and hence my liver and bile ducts) were in a bad way I drank nothing for ages.

Beatrix thanks so much and glad it seems to be manageable for you. I guess I’m not sure on what role the steroids play... I’ve seen a lot of mention of steroids and immunosuppressants as treatment and I can understand the immunosuppressant role but steroids I’m not so sure.

My fibrosis scan came through for April so I guess there is no immediate danger. I have had ordinary scans in the past showing nothing but I understand this is a bit more focused on the liver and will determine whether I have the biopsy.
How did you find the biopsy Beatrix? It sounds pretty invasive and done under general anaesthetic as far as I understand.

My sister had primary sclerosing cholangitis.

My advice is, should your biopsy show something make sure you get referred to a hospital that is a centre of expertise for livers. My sister got stuck at a regional hospital, with consultants who weren't real experts in this area, and it nearly killed her. She had heptatic encephalopathy and it was still not suggested that she had advanced PSC - largely, I think, because there was no sign of jaundice.

Good luck for your investigations.

I’d have to look it up to be precise but I think primarily steroids have an anti-inflammatory role but it’s more rapid than with immunosuppressant meds. So they use steroids to get a quick result for a short period then the immunosuppressants have more of a preventative action. Fibrosis occurs where there’s been inflammation and scarring over a period of time and it can be reversed with treatment.

Liver biopsy can be done with sedation and local anaesthetic- I’ve not heard it being done under general. My first one was under sedation with a laparoscope for guidance. The second - I’d moved house so different place - was without sedation. It was okay. I had shoulder tip pain for a while after. By that I mean a few hours. Was given paracetamol. You have to rest after - I think best practice is 6 hours’ bedrest but hospitals vary. Many keep patient in overnight. Both mine did. Some seem to get sent home later in the same day. Ideally you lie on your front, the side you’ve had bx on, to exert pressure on biopsy area. For the first few hours. That’s what I did first time. By second biopsy I couldn’t lie except on back due to a frozen shoulder. They were okay with that.

Matilda, I assume your sister had a liver transplant? I hope she is doing well now. They thought I had PSC after the first biopsy. It was reassuring when they changed their minds! I’ve never had obvious jaundice either.

Beatrix, yes she did (Royal Free Liver Unit). Actually, she had two in the space of one month . Unfortunately, her body started rejecting the liver 9 years later, and she died waiting for another organ.

But she did a lot with those 9 years, including getting on to the paralympic archery squad, and getting to know my 4dc.

Sorry your sister died, Matilda. It must have been hard for all of you, probably still is, but good your children had a chance to get to know their aunt. It sounds like she achieved a lot in a short time.

Me same history as you . Loads of blood tests and a biopsy later they’ve still no bloody idea what’s going on but I’m totally fine .
Have you got gall stones by any chance?

So sorry about your sister Matilda.

When I had a liver biopsy, it was done without sedation and with just a local anaesthetic. I’d read horror stories online about it beforehand, but it was totally fine. I had to stay lying down for a few hours and then I went home.

matilda I’m so sorry your sister died. It sounds like she certainly made the most of her life.

isshoes and beatrix that is good to know about the biopsy. We’re you treated privately by any chance? I’d definitely opt for the local anaesthetic if that is an option. A lot of the patient guides I read from uk hospitals suggested it was done under GA.

wonkey hopefully we are just medical anomalies and there is nothing actually wrong with us . I don’t have gallstones as far as I know (I think they are very painful no? I don’t have any symptoms currently...just during pregnancy)

No I wasn’t treated privately

No, i‘m NHS through and through.

The local just numbs the skin area - the piercing of the liver is very quick, for a brief second, and it really is very transitory, it feels stabby and it makes a great clicking sound - it’s a special needle with an section that catches up the specimen of liver. They will talk you through the whole procedure, and you might be asked to hold your breath at the precise moment the sample is taken. Then you can have a kip!

I’ve had a liver biopsy and it was fine. Local anaesthetic, a weird quick 1 second stabbing feeling with absolutely no pain but I did have the shoulder pain overnight (they kept me in). This needed just paracetamol to manage. Out next morning.