Autoimmune Hepatitis - accepting diagnosis

Keep fighting. Be your own advocate. Clean up your health. If you are what you eat then work on your diet. Start exercising. It will take time but you can become stronger and healthier. There is an old saying that fits but hard to do for most of us. "accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference." I believe you have to reduce stress. Dont accept your condition fight back. Good luck.

Thanks but .... there's nothing else for me to clean up in my diet. It's been incredibly healthy for almost 20 years. I don't feel 'weak' - I actually feel fine. I already do a lot of exercise - swim, walking, I have a gym I work out in, again, been very active for many years - a few weeks ago I was cutting down dead trees in the garden and am still able to carry round 25kgs bags of cement for my various DIY projects (I turned 60 this year). Reduce stress - the only stress I have is being told I have a 'disease' which I don't believe I have and being filled with a load of medications that have given me horrendous side effects which are thakfully starting to diminish now I'm taking myself off of them.
Thanks for the response but my question was about how people have been able to accept a serious health diagnosis when they don't have symptoms and actually feel fine.

A liver biopsy would give you a diagnosis. A yes or no your crazy. Meaning heck no I don’t definitely don’t have it.

Hello 👋 may I ask what had occurred prior that made you decide to go to the hospital?

Hi,
I'd been feeling a bit under the weather, like I had a bug I hadn't been able to shake so I went to the GP as I thought I may need some anti biotics and he did a blood test. 2 days later I received a phone call saying I had to immediately go to A & E as there was a problem with my blood test. I didn't feel ill, just a little run down. When I got to A & E they told me I had to be admitted - but they didn't have any beds so they wanted me to stay in A & E, sitting in a hard back chair without sleeping, and no food, until a bed was available, which was 2 days later. No one was telling me anything - they took loads more blood on Day 1 and Day 2 and took me off for a scan (no one said why). On day 2 a cannula was put into my hand - again, no reason why given - and then was never used and removed in the evening. I took myself home late evening on Day 1 because I'd been vomited on by another patient in A & E and couldn't face having no sleep and staying in dirty clothes - doctor phoned half way through the night telling me I had to come back but I said 'no' as she confirmed there was no bed at the hospital for me and I said I had a perfectly good bed at home that I would use and go back in the morning if they wanted me to. Same happened the following night but after I left the hospital at 1am as I was just too tired to stay awake any longer, they called me back and said they had found me a bed. It then went from bad to worse when I got on a ward with still no explanations as to why I was there, just more scans and blood tests - day 5 I was told my liver would fail 'at any time' and that when this happened I would 'bleed out' and this was why I needed to be near a medical team. I still felt fine except I had problems digesting food (found out later my bilirubin was at 159). Because I looked healthy and had energy, I took a lot of stick from patients and nurses who were open in saying they did not think I should be occupying a bed as I appeared too healthy to be there - every day I asked the doctors if I could be treated on an outpatient basis but was told I couldn't as it was 'too dangerous' for me to be away from the hospital overnight. The whole time I was there it felt like I'd slipped into some crazy parallel universe where nothing made sense anymore. The doctors made it clear that they weren't happy with me asking questions - I think I was just meant to be going along with all their tests without asking why they were happening - especially when the same scan was performed 2 days in a row - and I was really sleep deprived. I pushed for early discharge the day after one of the nurses had shouted at me that I should self-discharge as I wasn't sick enough to be there and 'matron and the nurses had been complaining to the doctors about me being there'. I was then left just under a month - on 40mgs prednisolone which sent me high as a kite - with no one in contact with me or responding to my requests for help / info with some of the other side effects I was experiencing. I've been in hospitals a few times over the years for planned / unplanned surgery and a stroke but I've never experienced anything so awful as I experienced last year.

Thanks for your response - I had a liver biopsy last December and it said as I previously had hep B & C that the inflammation could be due to this - also questioned whether I had 'overlap syndrome' and suggested a second opinion be sought. It said 'suggestive of AIH' but this was based more on the info the drs had sent. I'm told the second opinion confirmed AIH but I've not seen this document for myself. I just don't trust the judgement of the doctors involved in making the diagnosis because they were really awful and told me a few things that later turned out not to be true.

Ask for a copy of your medical records. I got a copy of my liver biopsy through the hospital. I ate salmon and my blood work showed hepatitis. I am once again walking the hep b being positive. Last time bloood work showed positive but biopsy showed negative. I am having the same problem again. As an RN we have to take three hepatitis b shots where we don’t get it but it plays crazy in my lab work.

Yes, same for me. My enzyme numbers high so had a liver biopsy. Told I gave AIH. No symptoms, don’t drink, normal weight but do have Graves’ disease. I refused drugs. Apparently 80 per cent live comfortably for 10 years without medication. I prefer shorter life span with quality than longer on the drug side effects. Now a few months in my numbers are completely normal. Not agreeing with the diagnosis.

I have had slightly elevated liver enzymes for over 20 years and doctors dismissed it. Then in 2020 I had more symptoms like fatigue, enlarged spleen, low iron, etc. After surgery on my colon two years ago they said I needed a liver biopsy. I have AIH and will eventually need a transplant. Since finding a great team of doctors I am doing well and no need for transplant for now. Be an advocate for your health. Find a new Hepatologist that will listen to you. If you only have fibrosis and not yet cirrhosis, meds will help your liver. My daughter (age 35) also has AIH but with meds, her liver enzymes are great now and no cirrhosis. I am age 62 with this hereditary disease. I question everything with my team of doctors. Advocate for yourself.

Thank You - hearing that is like a breath of fresh air. Just wish I'd refused the drugs as they've caused so many problems - high blood pressure and high cholesterol so now I'm on statins for the cholesterol. Risk of adrenal insufficiency / adrenal crisis because of the steroid's impact so now I can't just stop them but have had to come off slowly to give the adrenal gland a chance to kick start itself. Thankfully, I'll be steroid free as of 4th July.
Then I will wean off the omeprazole as they also come with a risk of osteoperosis and from what I've read, weaning off can cause multiple difficulties - but at least I'm prepared. Then I come off the statins. I reckon this will take me to the end of the year so come the New Year I can make an informed decision about whether or not I continue to use the immunosuppressants. Side effects from these are pretty awful as well but I worry that where my body previously used to sort things out for itself, now I don't know if it will still have that capacity because of the harm these drugs will have done.
I was told I must not come off the steroids - I feel so much better now I am almost off - I'm like me again. My patience and feeling calm is back instead of me going off at the slightest thing and being worryingly erratic. My blood pressure is almost back to normal.
I was never told about any of the side effects despite my asking. I've never really needed any medication before so I was pretty clueless and quite frankly, frightened that they might try to force the drugs on me on the basis that they viewed it as 'in my best interests'. Once I get off these drugs I will never agree to using them again, even if this does mean my life ends up being a bit shorter - for the last 7 months I've had no quality of life, it's just been existing and trying to manage the body shakes when I woke up and during the day, muscle cramps, skin splitting at the slightest knock, nausea, constant headache, excessive thirst, intrusive thoughts, and on the high dose of steroid, only 3 hours sleep a night and every third night, no sleep at all, which would have taken its toll on my body. For me, I've lost just over half a year that I'll never get back - now I feel like I'm taking back control. I don't think I'll ever trust doctors again and I know I'll never seek medical help again.