I had a DILI episode Dec 2020. Overnight in hospital. ALTs 2162. ALTs dropped to 135 & was normalising but went up to 372 in Mar 2021. Care was great. Got transferred to con who is vile. He arranged a biopsy. Said I had sero negative AIH. Refused to show me any results or give me any info (???). Hes put me on pred 15mg and wants me to start 6mp (tried azathioprine & was bad) but need more info about it.
On Dec 22, 2021 I saw him for face to face app. He was an hour late then told me 'you could die tomorrow or sometime in the near future'. Previous visit said I was fine & my liver would return to near normal. Yesterday he phoned my mobile 5 times, then my landline for a chat. He told me I could have liver falure & be dead in months. I think hes nuts. But he's terrified me.
I've since seen private con who was lovely, calm & reassuring & he is transferring me to another nhs con.
I have no symptoms apart from right side dull ache. Feel fit & healthy for my age. So I'm baffled. Could I be seriously ill & not be aware of it?
I have 'severe hep' according to Dr Mad. I'm baffled. Help
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Bigbluemonkey
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Well it seems you have diagnosis Aih confirmed by biopsy. You are treated with steroids. I think the main problem is poor comunication with your doctors.
If you had acute liver failure, I think some liver function tests like INR, albumin, bilirubin would show it. Maybe ask about them your current doctor? Only dr can tell you more seeing all tests and your symptoms. He should explain all your results.
Not bad albumin and bilirubin in normal range. As you said dropping trend is a positive sign. You said you had a liver biopsy. If I were you I would ask if some fibrosis was found. But this is some possible future concern in fact you can have none.
Hi Bigblue, you need to find out the staging of your liver injury - was it an acute DILI which has left you with liver inflammation in the form of Auto Immune Hepatitis or has it actually caused damage? (fibrosis/cirrhosis).
My hubby has full on cirrhosis due to AIH, he was diagnosed in April 2012 with decompensated cirrhosis symptoms (bleeding from varices). He was assessed for transplant in 2014 and listed but ended up improving so much that he was delisted after 10 months.
He is now at the watch, wait and monitor stage with symptoms of cirrhosis being treated. He is only on 5mg pred as a maintainance dose because his liver injury happened without obvious signs of AIH, may even have been drug induced as he was on long term antibiotics for adult acne for years (without proper monitoring). He has no ongoing inflammation and his immune system isn't still in over drive so hasn't needed an immune suppressant.
This doctor who has scared you does sound a bit callous in his approach - hubbies consultant constantly tells us he has patients on his books who have had cirrhosis for 20+ years without being either at deaths door nor needing transplant. Hubby now approaching 10 years.
Key thing in hubbies case is keeping an eye out for any signs his condition is getting worse and taking action urgently.
Looks like your inflammation markers are all going in the right direction, maybe when they get low enough to not influence the results of a fibroscan you might get one of those to look at staging any fibrosity (no good doing it too soon because inflammation might inflate the figure for kPa and give a false high result than accurate).
As I undestand Bigblue has already had the biopsy. In this case I think the fibrosis stage (if any) can be checked (the status of the time of biopsy). Am I right?
Private consultant managed to get some details of biopsy:
'severe hepatitis: bridging & pan-acinar necrosis indicative of a florid immune driven injury with some features to support a sero negative AIH (DILI to also be considered)
Collagen deposition in the portal tracts was found but think related to hep
They are doing fibroscan in 6 months when its come down otherwise false positive
Thanks for all your help & advice. I think I'm getting anxious about it all.
It seems as I found all about inflammation not fibrosis but I am guessing only. Maybe ask your current consultant? But as you said fibroscan can tell you something later.
I think I had a massive DILI (thats sounds really weird) that triggered AIH.
Did your hubbie have any other symptoms other than what you've listed? I've had a dull ache lower right ribs and just below. I was told I havnt got ascites or liver flap.
I think I'm just in denial about it. Cant process it. It came out of the blue.
I really helps talking to people about it. Thank you 😊
If you are feeling generally well then hopefully there isn't too much damage, with AIH under control the inflammation should go down and the bridging fibrosis in your scan possibly reverse.
My hubby never had any symptoms of typical AIH - sadly he never had any bloods taken so we don't know if he ever had any obvious inflammation.
By the time he started with symptoms they were those of cirrhosis (though we never for once considered the potential for him to have liver disease falling into the camp of many that as a t-total chap all his life, fit and healthy generally - long distance walker, working hard in heavy engineering). From about 2008 he was suffering horrendous nose bleeds, tummy trouble - irregular bowel habit, bad indigestion, loss of sexual function, clubbing of finger tips, clawed fingers. His GP told him he had anxiety and depression because at this time he was caring for his Dad who had alzheimers and dementia.
In 2010 when he moved in with me he was suffering sleep disruption and more. In 2012 he started seeing blood in his stool and put it down to a rectal tear then in April 2012 he started vomitting blood and the result was his hospitalization and diagnosis of cirrhosis. It certainly came out of the blue.
No ongoing inflammation showing on either of the two biopsies he's had and he's never had a fibroscan - no point in his case as we already know he has cirrhosis which sadly isn't going to reverse. His condition is now stable and he lives every good day to the max - cycling lots and back enjoying his walking though not quite to the degree he was before his illness.
Hopefully the fact that your biopsy shows bridging fibrosis and patchy necrosis it means your condition is still controllable and even potentially reversible.
Ascites, liver flap and such like are symptoms of a severely struggling liver - by that stage you wouldn't feel generally well.
My hubby has never had ascites (thank fully) nor suffered liver flap - he does have a diagnosis of mild HE but this mainly affects his sleep pattern, concentration and cognitive function - understanding and making himself understood etc.
I am not sure but bridging is not only for fibrosis. Here "bridging & pan-acinar necrosis indicative". Please see here.:
"Bridging necrosis"
(...)
"Necrosis is a common denominator in acute and chronic liver diseases and it is usually followed by progressive fibrosis, with persistence of the underlying cause"
But I think is more complicated. I think only hepatologist can explain this.
I would request copies of your medical records (free of charge) and after each consultation/scan/ blood test ask for copies of those notes also. My consultant let me down several years ago and forgot about me for 3 years (I chased up appointments regularly but didn't get anywhere), now I am cirrhotic. I always want to see everything in black and white. Consultant wrote a letter to GP and didn't copy me in, only saw what she had to say after requesting copy notes, and it was very interesting to say the least. Was told bloods were okay, saw the results and found this was not the case, queried it and was put on more meds.
Thats the problem with the consultant I'm with now. Before him I got copies of everything. Even the hospital gave me a copy of all the test results. He just shuts me down. I even asked for copy of blood test after months of no information and he said 'I'm afraid not, no'. Very odd. The new consultant I'm moving to sounds lovely.
Big part of my problem was the diagnosis. Initially it was drug induced liver injury but now saying its AIH. Even now he doesnt seem 100% sure. I paid for half hour with private consultant for 2nd opinion and he was excellent. He thinks the DILI triggered an AIH response which sounds very plausible. Before I make a decision to take meds for life I need to be 100% committed so need all info to make an informed choice.
Totally agree about doctors/consultants. There are some wonderful ones and some that are hopeless. It's a total lottery.
I'm sorry to hear your story. Your treatment sounds shocking. That sounds like negligence to me. 3 years? That's horrendous. Hope you are feeling ok now. How bad is your cirrhosis? I may be heading in that direction myself. Take care 😊
He phoned me up out of the blue on Thursdsay. The conversation was like this:
'You shouldnt have said I could drop dead any minute, it's really made me anxious & upset'
'I've got to tell it as it is. Theres no point sugar coating it'
'Theres no evidence I've got cirrhosis'
'Its not cirrhosis that's the problem - its liver failure. You could drop dead any second'
'How many people die of AIH?'
'Not many. It can be successfully treated with medication'
'So its statistically unlikely I'll drop dead?'
I was raging at this point but I kept calm & didnt swear.
This was Thursday 10th in the morning. Saturday 12th I get a letter telling me I have a telephone appointment on Thurs 10th at 1605. The envelope was dated 11-02-22.
There is cleary something wrong with the man.
I've just found out my appointment with new NHS consultant is not until May but department sound really lovely. A liver nurse is phoning me to chat about my meds and any problems next week. I've also booked another meeting with private consultant I saw before just to talk through everything and reassure me. This present consultant has really unnerved me.
(The phone conversation is accurate. I've got this weird knack of remembering conversations word for word, even the shit ones😎)
In addition to sounding sadistic, he is also flat out mistaken about your disease. Rapid onset of complete liver failure, i.e. fulminant hepatic failure (FHF), is only seen in acute presentations of AIH in patients with no history of liver disease and is presaged with jaundice prior to hepatic collapse. FHF is not a concern in chronic presentations of AIH which seems to be your situation. See the link below to article in the 28 April, 2011, World Journal of Gastroenterology. Hope it helps!
It seemed odd that the consultant talked of liver failure when there was no evidence of it. I look fine apart moon face & puffy eyes from the steroids.
I've transferred to new consultant who wants to do regular fibroscans. No-one can check for liver damage until the inflammation has come down. I think there will be fibrosis but I dont think I'm as bad as the old consultant made out. I think he was just nasty.
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