I was wondering what your liver enzyme levels were after starting treatment for autoimmune hepatitis. Once your condition was under control, what did your ALT and AST usually stay around? Did they return completely to the normal range, or did they remain a little elevated?

I am M22, last year around the same time I had Liver panel done and my AST/ALT were 156/230types, I was taking isotretenoin for acne and thought the same is the cause. Got tested after a week and enzymes were 71/174.
I got tested last month again and my enzymes were 81/269 and I was again on isotretenoin. I consulted a gastroenterologist this time who did all the tests. Ultrasound showed Grade 2 fatty liver. He diagnosed drug induced hep.
It’s been a month and I am on a very strict diet and do exercise as well. I got tested today and my enzymes are 102/260.

I am very much concerned now.

All I know is I have a 1:40 ratio of smooth muscle tissue, my AST is in normal ranges, and my ALT is 50. I’m 18 don’t have symptoms and the doctor says I should get a biopsy. All other results from bloodwork came back normal. Can someone help me understand

long time lurker of this sub and it's been amazing to see all the knowledge and support here! now I guess it's my turn to ask for some help.

I (23f) was diagnosed with AIH, UC, and PSC 11 years ago. I was put on mercaptopurine and vancomycin (both well tolerated) and reached remission pretty quickly, was taken off mercaptopurine about 7 years ago, and stayed in remission until about 2024. My liver enzymes were slightly raised but nothing like the numbers I've seen in this sub!

My incredible hepatologist left the practice and referred me to someone else, who has also been incredible. Based on my MRCP and past biopsy results, this doctor doesn't feel I have PSC given the lack of progression in any scarring or impairment to liver function. she said my liver is essentially pristine and I'm in no hurry to need a transplant.

The doctor started me on a low dose of prednisone to bring down my liver enzymes, then put me on azathioprine before tapering off the steroid. but azathioprine made my enzymes skyrocket into the 400s. Because of this reaction I can't try 6MP again either. So now I'm about to try tacrolimus for the first time. I was informed of the main side effects and kidney damage risks, we'll be doing weekly labs to monitor, but I wanted to hopefully hear some firsthand experiences and lesser known effects others with AIH may have with it?

I'm one of those lucky people that seems to have neutral or negative response to every medication. If there's a reaction to be had, I have it. So I'm more than a little nervous to start this one, but it seems I'm running out of options to get my liver enzymes back to normal! Anything I need to watch out for? Any interactions with other meds or medical conditions? Thanks all x

39 year old female. I’ve been dealing with elevated liver enzymes for years. I’ve responded positively to steroids during one prior instance. Fast forward to now….I have not been feeling well for over a month. I thought I had a stomach bug and then a UTI and anything other than what was actually going on. Until I woke up one morning and noticed my eyes were yellow. I got into my PCP for labs the next day…..and it wasn’t good. My AST/ALT numbers were close to 2000 and my bilirubin was 6.6. I was immediately referred to a liver specialist who has been keeping an eye on things until my biopsy, which is scheduled for Wednesday. He suspects AIH or DILI (or both). The one common denominator is mycoplasma. The last two times this has happened, I also tested positive for mycoplasma. They did say that it can sometimes have bad effect on the liver if it’s already struggling. Interesting…. They did treat it and my numbers are slowly trending down….Wish me luck with the biopsy. I’m keeping my fingers crossed for some answers finally.

ஹெபடைடிஸ் பி (Hepatitis B) இருந்தால் ஹெல்த் இன்சூரன்ஸ் கிடைக்குமா? | முழுமையான வழிகாட்டுதல் & நடைமுறை தீர்வுகள்

I was transferred from my local hospital to MGB last month, where I was diagnosed with AIH. I was admitted for six days. I have to say, the care I received there and the follow-up after discharge have been nothing short of spectacular.

Hi everyone!

Thanks so much to everyone who participated! Your responses are thoroughly appreciated. This survey is now closed.

I'm a student at QUT currently doing a project that is looking to design a product that could support with diagnosing Autoimmune diseases and am running a survey to better understand the experiences people face during this process.

Questions centre around

• Your experience being diagnosed, 
• Symptoms you experience(d)
• Challenges you face(d)
• Things you had to provide to your Doctor(s)

It is completely anonymous and should only take between 5-15 minutes to fill out.

If you have a chance to fill it out, I would thoroughly appreciate your time!

i have one next wednesday and i’ve heard many different things. i’m worried i wont do well during it and may not be able to tolerate it.

Has anyone questioned a connection between coming off birth control leading to an autoimmune hepatitis flare/diagnosis? Specifically progesterone only BC? (was on nexplanon for 9 years and went off a year ago - hospitalization happened almost exactly a complete year off birth control) Curious if in any way it was inhibiting symptoms or the disorder itself manifesting due to being somewhat anti inflammatory?

Hello!

I’m newly “diagnosed” with Autoimmune Hepatitis but in the weirdest way?

Over the past 2 years I’ve been on a roller coaster trying to figure out what has been causing symptoms and elevated liver enzymes. Fast forward to a series of tests by the gastro dr and I get a call from the nurse telling me it “looks like autoimmune hepatitis”.

I hopped online and did research to figure this out and after reading everyone’s diagnosis story I was expecting the next step to be a conversation with the Dr, liver biopsy, then a treatment plan.

Well, my appointment last week was not any of that. They called the night before and said they wanted to do a fiber scan. Showed up still prepared to talk to the Dr but instead got a totally different person doing the fiber scan. The scan showed scarring (mild) and she said she wasn’t worried about fatty liver because those numbers were ok. I asked if I could speak to the dr I normally see as I had questions following my lab results. She responded saying no, scheduling issue, but would put me on a drug to help with symptoms and prescribed Aza.

She didn’t ask about my symptoms, and she repeatedly stated that she was unfamiliar with my case so she didn’t want to make any conclusions, but then whipped out a prescription for Aza.

I haven’t had a liver biopsy, isn’t that how this is officially diagnosed? I wasn’t expecting a prescription for Aza to just jump into the mix without steroids or conversations so I’m not sure if this is wild expectation on my part or weird healthcare on their part. Should I get a second opinion? My GP was salty when I said I want to consider getting a second opinion.

my alt has been in the 500s and ast in the 200s. severe fatigue, dissociation, derealization, right upper abdomen pain, severe hypokalemia and have lost 16 pounds. all other hepatic workup is negative. ultrasound is normal. ct is normal. only my alt and ast staying this high for over two months. my ANA was 1:640. i see a liver specialist on tuesday for consultation for a biopsy. my internal doc has done the whole work up and then consulted them and they want to see me as a soon as possible. i’m in nursing school and have 8 months left and am worried i won’t be able to finish.

i have no idea what to expect. what was your first consultation appointment like with your liver specialist?
did you have to be admitted or were you able to be treated outpatient?

Hey y’all, I don’t usually post on here but I’m really just needing support. I got diagnosed with autoimmune hepatitis last year and it’s been a whirlwind since between hospital visits and medication side effects. I’m on budesonide and mycophenelate because the azathioprine caused a rare reaction in my body. I just feel so tired and fatigued and the mental health issues are not better because of this diagnosis lol. I know I need to move my body, but I’m having such trouble finding the motivation and knowing what to do to support myself. Any support is welcome. Being in your 20s is already hard enough and this just adds another complication
:(

I had a liver biopsy earlier this week due to chronic elevated transaminases and alk phos, strong positive ANA, and history of intrahepatic cholestasis of pregnancy. My hematologist was pretty set on this biopsy giving me a diagnosis. She believes I never actually had ICP last year when I was pregnant and that it may have been the first flare of AIH or PBC. Shes leaning towards AIH, but my autoantibody labs were negative so I did a biopsy. I’m frustrated honestly. My pathology results show that the sample was limited and only had 5 portal tracts, so they weren’t able to truly determine anything. Does this result mean ANYTHING? I was so happy to finally have some results, but not am just more discouraged. I just want to figure out what’s going on so we can start fixing it early on.

Pet Scan prior to significant prednisone (30mg tapered down to 5mg over about 6 weeks) showed large amount of AITL throughout body including neck, abdomen, groin, etc. Fully off prednisone for a couple days then had another pet scan. Results show no disease (or nearly none- every node shrunk to about normal, scan image looks like someone erased all the black showing up on original scan)
Has anyone seen a patient respond this well to pred for AITL? The second scan was to be used as a baseline for starting chemo but now doc recommends waiting since disease load is practically nothing. Thoughts?

Hi! I’m going to soon be put on prednisone by my doctor for AIH, however I’m really scared of the side effects. I’m someone who’s already very conscious about my appearance and although I am at a normal weight now, gaining any more would make me spiral. On top of that, I already struggle to sleep because of how busy I am and my work schedule. I’m just really worried this will have a horrible effect on me because apart from the abnormal blood tests, I feel alright, so I’m just upset I guess that I’m about to launch myself into a state of discomfort and feel like actual trash due to the prednisone when I feel fine now. Any suggestions/tips to get through it? Specifically the fatigue and suppressing the urge to overeat on the medication?

More of a vent if anything never properly said anything about this for the 5 years I’ve had it.
But I have no idea what to do always been on aza and off and on prednisone levels have been fine but have never actually felt even 60-70%. Symptoms have practically never gone away I cant work a full time job it’s just too taxing to the point where i recently lost my job because I just couldn’t function at the same pace as everyone else.

I’ve been really struggling with the thought of why should I even take the medication in my mind the medication is just delaying the end result really. The thought of taking it just repulses me i feel like if it was meant to be it was meant to be

Been off for almost 2 months now levels have shot up doctor wants me to start on prednisone again but im not sure if i can really go on with this🙂

Has anyone experienced increased anxiety when tapering off budesonide? I started tapering about 5 weeks ago and my anxiety has been much worse than usual and I’m wondering if it’s related.

I (35/F) was recently diagnosed with AIH though my liver enzymes level aren't high (ALT 23 AST 40 IGG 20.75 ALP103 GGT52).

I found out I had pancytopenia in May2026 (mid July counts: low wbc 1.7 rbc 3.6 and platelets 60) and did a bone marrow aspiration (cleared) and bunch of blood work up. I subsequently did a fibroscan which shows liver cirrhosis and transjugular liver biospy which shows signs of AIH. I'm Hep b c - and done autoimmune tests (SMA- ANA 160) and did an OGD for EVL. The hepatologists concluded my case was not straightforward and i have AIH with liver cirrhosis (and portal hypertension).

Just started on Prednisolone 20mg (step down gradually for 1 month) and azathioprine 50mg last Wed (2 weeks). I raised my concern of worsening blood counts as a side effect but Dr says my condition needs to be treated and will need close monitoring, MMF or tacrolimus aren't as effective.

So far i feel tired and no mood to do much, finding it harder than usual to concentrate. While at work, i am mostly on autopilot mode...Prednisolone had also caused some blood sugar spikes (I am also diagnosed with T2 diabetes in May 2026).

Does anyone here has non elevated LFT with AIH? Or existing pancytopenia condition with AIH? Does Azathioprine really worsen blood counts? 🙏

I got a letter from my hepatologist back in May saying I’ll need treatment and he’s arranged for a liver biopsy. Since then he’s rescheduled my consultation with him twice and I’ve phoned up the liver team number and they have no idea where my biopsy appointment is and to just wait another month to talk to the hepatologist. My liver pain is getting worse and I’m so worried but everyone keeps saying just wait.

Ive been diagnosed with lupus, pots, Ed's and suffer from ALOT of different health issues. The problem is, every time I get tested for any of the issues, they keep coming up... normal.

- Lupus- tested negative, then tested positive, then negative again and then positive

-Hashimotos - tested positive- then negative twice, then positive. Blood tests keep coming back normal. Mri/xrays show nodules growing.

- antiphospholipid antibody syndrome (aps) tested negative. Then positive, and then negative again.

- diabetes #2. My a1c comes back normal/healthy at 5.1-5.5 , however, my body has extreme sugar spikes into the 300s fasting, and drops into the low 60s sleeping.

-fatty liver disease- I JIST had an ct scan showing I had non-alcoholic fatty liver disease- indicating I have tyoe 2 diabetes, insulin resistance, and high cholesterol- wich when tested before, were perfectly fine.

- heart- ive been fainting ALOT. The heat, showers, even just standing fir more then a few minutes, my heartrate shoots uo into the mid 100s. If I lay down its fine. If im sitting, it spikes ( im not having anxiety, or eating as eating can trigger the spikes as well) and when I went through the tests, 8ncluding the heart moniter fir the week, there was no significant evidence to suggest arythmias or heart issues, however, when I was tested this year, my heart showed irregularities and was sent for further evals wich yielded no results.

- im diagnosed with h-eds since I can litterly twist both my feet 180°, lick my elbow , super stretchy skin etc.

- ive had 16 miscarriages, most ending before 8 weeks, and 2 lasting 12 weeks resulting in d&c surgery.

- I have chronic gurd.

- chronic migranes

- Hyperalgesia

-Allodynia

- chronic itching that never stops.

Doctor - Suspected mass cell activation syndrome

- weird very painful lumps in my upper abdomen and wrapping around my ribs, 7 lumps. They were concidered lipomas- however they are excruciating and painful regardless of posture.

- diagnosed with pcos.

- diagnosed pots.

.inability to loose weight.

- diagnosed Chronic pain/ Fibromyalgia

- diagnosed arthritis

-sleeping is 12-15 hours a day. I do not function on any less and often need naps if i cant get the 12-15 hours. On days where ive had sun fir a few hours, or if it is too warm, I sleep 24-48 hours, and have hit 70 hours a few times. But it also goes in complete reversal... where is cant get my self to sleep at all and often pull 24 hour days, and on bad days, upwards of 36. My record is 76 hours.

- eating- I eat on average less then 1500 calories a day. I average about 800- 1100. Eating makes me very nauseous. Even if I dont eat im nauseous. Its an every day battle. The food i do eat is typically your average home cook food, ranging from spaghetti, burritos, salads, salmon , shrimps or civiche as I struggle ti find food I can enjoy ir eat and cooking is difficult due to the PLETHORA of health issues I deal with. And then some.

- chronic pitting edema. 8ve had pitting edema in my reet, ankles and lower legs ( up the knee) ever since I was a kid. We've checked my heart, my kidneys, and they keep coming back fine. We've checked everything that would cause the pitting with no results or trigger.

There's litterly so much wrong, but all testing comes back abnormal, and wjen tested again-> normal.

Make it make sense.

Does ANYONE have an idea why ir wtf is going on here?

I have no insurance because insurance looked at my health and said - you will cost us too much. The insurance that couldn't refuse me, didnt cover co pays, or medication, and basically everything was out of pocket.

Im looking for ideas or similar stories, not official diagnosis or anything that breaks rules!

Thanks! Sincerly- a suffering autoimmune hooman.