Over the last year I had several blood tests that showed increasing liver enzymes and blood sugar. None of it was diagnostic until after two more test many months apart it became clear my liver enzymes were rising significantly. My doctor sent me for an ultrasound which showed nothing significant on my liver. And then about two months later I did a followup liver function test that was more comprehensive than what is in a normal blood test and I can back positive with actin smooth muscle antibody (IGG) at substantially above the positive level of over 20 - I’m at 85. I haven’t heard from my doctor yet, but I know those results mean that I’m sick. What can I expect? I’m so scared.

Someone recently sent me a kind message checking in, even though I only had one post four whole months ago with concerns about how I had been treated at my first consult with a hepatologist.

I wanted to share an update because (I am mostly pleased to report) I was being misdiagnosed and don’t seem to have AIH. I don’t want to offer false hope, but it’s I think it’s worth reminding anyone stuck in healthcare hell that it is ok to ask questions and that you need to be an active participant in your healthcare.  

My GP referred me to a hepatologist in June after a series of blood tests (starting with my annual physical) showed elevated and worsening liver enzymes.  I had two mild positive ASMA titers but no other concerning clinical results or symptoms, and no other autoimmune conditions in my history.  

The hepatologist essentially “diagnosed” me with AIH, sight unseen.  When we did have a short office visit, she began explaining AIH to me right away.  She ordered a liver biopsy with instructions for me start high dose prednisone the day after the biopsy, i.e., before the biopsy was read.  She said taking the prednisone would be “no harm done” if it turned out not to be AIH.  I gave her my health history for the year, making sure to point out I had briefly been taking a medication known to be hepatotoxic in some patients.  I also had had some severe viruses/infections quite recently.  She seemed to dismiss these factors entirely.

Of course it took weeks to get scheduled for this biopsy, and it turned out it fell neatly between two additional rounds of blood tests.  Right before my biopsy, my levels finally turned down instead of up.  I told myself that as long as the biopsy results were not terrible, I could delay another week starting the prednisone until another blood test and a chance to discuss with my doc.

The biopsy results were NOT terrible!  As far as I could tell.  The pathology report was published within a few days, and final summary included this statement: “The presence of abundant ceroid-laden macrophages is consistent with ongoing resolution of previous damage and/or inflammation. The differential diagnosis engendered by this overall presentation includes mild autoimmune-type hepatitis and drug-induced liver injury.”   To me, this meant that while something HAD been wrong (obviously, my liver enzymes were very high) but it was RESOLVING and that it could have been AIH or drug induced.

I kept waiting for a call from my hepatologist to interpret it further, but no call came.  I did not start prednisone.  I took my next round of blood tests.  I was within a hair’s breadth of baseline liver enzymes.  I finally got a call from a nurse at the clinic acknowledging the blood tests and saying how pleased they were that I was responding so quickly to medication.

I told them I had not started medication.

Long pause.

“So these results are with no prednisone?”

“Yup.  I wanted to speak with the doctor about my biopsy before starting.  Why hasn’t she called?”

“She, um, was planning to review your biopsy at the end of the month at her next conference”.

This doctor was just going to let me hang out on 40mg prednisone daily for an effing MONTH, before even bothering to check if my biopsy corroborated her diagnosis. (To be fair, drug induced liver inflammation is often treated with prednisone as well)

So, a relay of calls and the doc agrees (via nurse) that there’s no reason to start prednisone if my levels came down so much on their own.

At the end of the month I do finally get a call from my doctor, saying yes, the most notable finding of my biopsy was evidence of hepatic repair, not ongoing inflammation or fibrosis, etc.  It could all, in fact, be a poor reaction to the medication earlier this year.

I’m still going for regular blood tests, and I’m happy to do so, as I do realize I can’t fully rule out AIH and my liver could flare again.  I’m establishing a healthier relationship with alcohol, and no longer take ibuprofen multiple times a week.  Enzymes are currently back in normal range.  I’ll be getting some more blood tests and a fibroscan next year, just to check.

Best wishes to everyone here.  Thank you all for talking to me/letting me freak when I didn’t know what was going on.

Have been diagnosed with AIH. Any thoughts about supplemental insurance or anything to do in open enrollment?

So I (M23) went to a hepatologist because I was having light stools except when I skipped my t4 medication (I have hypothyroidism and it's not hashimoto, so far as I know but my mother has hashimoto's), when I skipped it the stools were normal colour but since I do bodybuilding or try to do it at least I ingest a lot of oats which contribute to a fast passing through the intestines

(Note:I abused levothyroxine in the past, did some party drugs but nothing much, I do not drink ever, I took vitamins daily but stopped like 3 or 4 months ago)

Aside from this the relevant indicators were some sort of permanent slightly above average ALT and AST and what I thought were high bilirubins but I was wrong, the markers were: ALT: (U/L) (7-52 normal range) -42 (2018), -47 (2023), -49 (08/24), -78 (09/24), 66 (10/24 after consultation) AST: (U/L) (13/39) -33(08/24), -39(09/24), -42 (10/24) Total bilirubin at 1 the two times I checked IgA:301 (66-433) IgG:1452 (635-1741) IgM:120 (45-281)

Gama GT fluctuated between 33,29,33,35

Negative for viral hepatitis FibroScan at 4,3kPa (no fibrosis) CAP(dB/m)(liver fat I guess) at 136 (non fatty)

Ultrasound total abdomem (everything nice and normal, liver with normal size and nothing wrong)

Yesterday we had a virtual appointment to conclude the exams, she said although it's physically normal I still show signs of ongoing inflamattion in the liver and I'm too young to do nothing about it and wants me to have a biopsy and send to doctor in another city to see if there are signs or confirm suspects of autoimmune Hepatitis or some genetic factor idk she said doesn't have to be now but like in 3 months, quit everything and avoid everything but levothyroxine

My stools are very normal and dark now that I bought a bad and nasty oat so I'm avoiding eating it, some days is lighter but it never went white just pale yellow, i ingest very little to no fat generally

I usually ask a lot of questions but our consultation lasted 22min cause I was in shok, I was expecting some yeah man don't worry your liver is physically fine, maybe is just a tendency to show some high ALT here and there but we can check it again in a year or some months but you're good to go don't worry

There was no SMA or ANA in the exams, learned about this here

Like I would check my ALT and AST regularly and would be down to fibroscan and ultrasound once a year or once every 2 or 3 or even 5 years or in case of jaundice or such...

It weighted heavily in my mind, even if I do have and autoimune hepatitis isn't it TOO SOON to know? Do I really have to already know it? I can't imagine already starting a steroid and immunosuppressive treatment and staying in imunosupressants

Am I wrong for that? Is she wrong?

Is anyone on Sirolimus for AIH? Would love to hear how you ended up taking it and also what your experience with it has been in terms of efficacy, side effects, etc.

It's been a while since my diagnosis, and I'm curious about other people's experiences. Is it okay to ask about how long people have been diagnosed and the stage of their liver damage? Did AIH lead to other diseases?

I'm almost 3 years diagnosed and I have Stage 4 Cirrhosis.

About 5 years ago I (38 M) had slight jaundice during a doctor visit and some bloodwork was done a few times over 4 months. Bilirubin was slightly high and trended up over 3 tests; a smooth muscle AB test was also at the lower threshold of high. Ultrasound of the liver showed numerous small structures which notes said to be likely hemangiomas (doctor if I recall said or it could be cirrhosis). The doctor concluded overall I probably just have Gilbert’s syndrome (high bilirubin) and no cause for concern (which in hindsight I think would be more likely if it was just the bilirubin but maybe less likely given other autoimmune condition history and the structures seen on liver imaging). I did not pursue more definitive imaging with MRI.

I have another autoimmune condition myself (vitiligo) and hashimoto thyroidism in the family (mother). I’m still at times jaundiced 5 years later and wondering if I should re-pursue a more definitive ruling as I establish now with a new primary care. I am wondering if anyone else had similar testing results which was at the time thought not concerning but later found to be AIH. Perhaps this is consistent with very early detection.

Here are the testing results which were of concern from 5 years ago. Everything else was within normal range at the time.

9/2019 bilirubin 1.5 10/2019 bilirubin 1.8 1/2020 bilirubin 2.4 (Normal range .9-1.2 mg/dL)

1/1/20 Smooth muscle AB titer 1:20 (normal <1:20)

Ultrasound: “Throughout the liver there are numerous hyperechoic structures with smooth margins as follows:

In the left hepatic lobe there are multiple homogeneous hyperechoic structures measuring 1.5 x 1.0 x 0.9 cm and 0.8 x 0.9 x 1.0 cm and 1.1 x 1.0 x 1.3 cm and additional subcentimeter structures with similar internal characteristic architecture.

In the right hepatic lobe there are multiple homogeneous hyperechoic structures measuring 0.7 x 0.7 x 0.8 cm and additional subcentimeter structures with similar internal characteristics and architecture.”

like in the title. diagnosed as AIH by my gp based on several blood tests and a ct. waited for the specialist for two years, and finally saw her last week.

got told to not eat breakfast, not snack/space out meals, and focus on making lunch and dinner complete meals. she also told me to go on the mediterranean diet. that’s basically it.

i am a bit overweight but not obese. it really seems like this gastro specialist is just trying to get me to lose weight? i’m happy to do the mediterranean diet but it seems strange to me to be skipping breakfasts, so i wanted to see if anyone had any insight here? i go back for a new set of bloods after making these changes, in about six weeks, so i guess we’ll see but im feeling a bit uneasy about this doctor seeming to solely focus on my weight, which i was under the impression had very little impact on AIH.

ETA: posting on behalf of a friend, don’t look to my post history for further info as im not the relevant party :)

Hi everyone, I got diagnosed with AIH last year. Was put on Wysolone for 6 months which was eventually tapered down. I left my job in January this year since it became impossible for me to go to office and there was no work from home facility in my field.

However, after giving myself to calm down and gather my thoughts amid brain fog, I started preparing for MBA. I had an interview on 13th Oct with one college and they asked about my gap and why I want to go for June 2025 intake and not Feb 2025 intake.

I was very confident till the time they didn't ask about my health. However, I paused and gathered my thoughts to explained the entire scenario. I told them that I will be ready to go on campus and work my ass off (in formal tone) till June since the official medical treatment lasts for 2 years. I said a lot but now that I think back, I may have stumbled because my health was a weak point. I had a very good profile which was perfect for the program.

I haven't heard back from them. Do you think they won't take me in because of my health? Because I may be seen as weak candidate? I think I ruined my interview with AIH talk

Currently, doctors have stopped steroids and I am on immunosuppressant Azoran 50 with calcium and ME12

I’m wondering if anyone had a similar experience and/or if you would recommend a second opinion.

I originally went to my primary care doctor with migrating joint pain (classic Palindromic Rheumatoidism). During work up they noted I had high liver enzymes and referred me to Hep.

My liver enzymes kept creeping up (got as high as 300/400), but I didn’t have elevated globulin or immunoglobulin. Negative smooth muscle, and barely positive ANA.

Liver ultrasound was normal. Liver biopsy showed very patchy “mild activity” and was pretty vague, but did note mild to moderate fibrosis. At that time, my ALP and GGT rose, and my bilirubin went up to 1.3.

My Hep said she wanted to treat as “mild AIH” but with the standard treatment. I asked for repeat bloodwork (this was about 3 months after my original blood test) and my liver enzymes were almost normal, bilirubin/GGT/ALP all back to normal. Two months later, everything including liver enzymes were completely normal.

I declined steroids (my Hep agreed with this approach), and I just repeated blood work today. GGT, bilirubin and ALP are even lower now….but ALT/AST are very slightly elevated (juusssttt over the range). I did my FibroScan and - although I’m no expert - based on the numbers I was seeing in the screen and from what the tech told me, it looks like I’m a F3 score (waiting on doctor to confirm).

I’m torn here because all my levels look good so I don’t want to do steroids. But I’m also not sure how my biopsy could seem so mild and then I have months of perfect levels, only to find out I’m actually at fibrosis stage 3 (wouldn’t the biopsy have shown this?).

I did ask if I could be put on a low dose of Cellcept (that’s what she wants to put me on now) and she said that’s not the standard of care. And I agree with that, but if I have mild AIH” then I would think that warrants a milder dose.

I’m just so confused and feel a little blindsided. Having a relatively mild biopsy and months of perfect levels, to now be told I’m F3 and need full blown treatment even though my levels are good….its just confusing me.

Hi Everyone!

I (30F) have been in the ER two times over the past week for symptoms related to liver issues (mild jaundice, itching, pale stools, darker urine). My LFTs and bilirubin are quite high — AST-324, ALT-693, Total Bilirubin-6.2. Thankfully, my abdominal CT and ultrasound are both normal. This all started with what I thought was a stomach bug and then morphed into, well, this. 😬

After my second ER visit yesterday, I was referred to a GI doctor, and I’m currently being tested for different types of viruses, as well as autoimmune diseases, that could affect the liver. I will be following up with the GI doctor early next week. He felt I could be safely discharged from the ER, so I’m back home now.

This has been quite a shock for me as I’ve never had liver issues in the past. I enjoy the occasional alcoholic beverage, but I take pretty decent care of myself. I was diagnosed with PCOS a couple of years ago, and I cleaned up my diet and developed a consistent exercise routine.

I’m not really sure what I’m asking…it’s just comforting to post here while I’m waiting for results. It’s been tough knowing something is wrong but not having answers. I’m not sure if my symptoms point to AIH, but I’m prepared for just about anything at this point.

Thanks for letting me share. 🩷

I've had bad stomach cramps and GI issues, without going into too much detail I had a GI bleed that was much more severe than I was used to. I now know that no GI bleed is normal but previously it was very small. I frequently get stomach pains, diarrhea, and now more bleeds. I never used to take blood tests but when I did it showed I had a 141 AST/200 ALT.

Still doing a lot more tests but what does this usually mean? My doctor was reluctant to tell me anything until more tests came in but I'd like to know the possibilities based on other people's experiences.

23M

My liver has been doing pretty great and I’ve been in remission for the last 6-9 months.

I am morbidly obese with mild fatty liver disease, and I’ve been managing autoimmune hepatitis. I knew that if I ever needed a liver transplant, I would never be eligible for a transplant due to my weight, so I decided to lose weight.

My results were far better than expected. I have lost 43 pounds in two months. I was concerned this was too fast, so I discussed with my PCP, and she said that it was fine at my weight (I started at 416.0), and that I would eventually plateau and slow down.

Last week, I had bloodwork done and my LFT were close to 600. Nothing had changed except my rapid weight loss. I googled rapid weight loss + liver damage, and learned that one can actually develop non-alcoholic steatohepatitis from oxidative stress to the liver.

My appointment with my hepatologist is in 6 days. Until then, I’m trying to be prepared. Has anyone here had any problems with their liver after or during the weight loss process?

Unfortunately I cannot help you with this, and I’m not saying it’s your fault or intention. There might be gradual adjustments you can make to your sleep / waking hours to bring them into a routine bit by bit.

wat? it's gotten worse i sleep 10+ hours a day or lay in bed doing nothing

My daughter, who is now 21, underwent a liver transplant 13 years ago. Today, her blood results from the autoimmune tests show the following:

• AMA-M2: Borderline Positive
• GP 2 10: Mild Positive
• SLA/LP: Borderline Positive

Can someone help me decode this autoimmune test report? Does 'Borderline Positive' mean positive, or something else?

My daughter’s blood tests today indicated positive autoimmune panels. As a result, her doctors have increased her Wyslone (Prednisone) dosage from 10 mg to 25 mg. They plan to review her progress after 5 days, specifically checking the liver function test (LFT) counts.

Has anyone here been on a high dosage of Wyslone (Prednisone)? What should we expect in terms of side effects or changes while on this dosage of steroids?

Her liver transplant was done 13 years ago.

My daughter’s blood tests today indicated positive autoimmune panels. As a result, her doctors have increased her Wyslone (Prednisone) dosage from 10 mg to 25 mg. They plan to review her progress after 5 days, specifically checking the liver function test (LFT) counts.

Has anyone here been on a high dosage of Wyslone (Prednisone)? What should we expect in terms of side effects or changes while on this dosage of steroids?

Her liver transplant was done 13 years ago.

Hey, I'm 21M . So here's my story -

I have had multiple episodes of chronic jaundice in my childhood. I lived in a very small city where the diagnosis couldn't have been done, kudos to my dad- he took the multiple episodes of hepatitis as a serious problem and took me to a reputed gastroenterologist in a bigger city.

Finally, I was diagnosed with AIH in 2015. Since then, I was on low dose steroids and Azathioprine. Everything was fine.

Last year, my doctor gradually reduced the dose and finally stopped both the drugs one by one. Then, I had relapse after 6 months and now I'm again on steroids and Azathioprine.

I just found this sub and wanted to share my story. How about all of you, I'll be glad to listen to your experiences!

Someone here to share tips and tricks on this one?

Do you guys think it is completely fine to manage AIH and nowadays corporate lifestyle side by side? How do you all manage it? I took a break from job to prepare for MBA but the pain that we experience during flare up is something which stuck in my mind and no matter how much I try, I'm not able to share it with people around me. I like to work. I don't want to sit idle at home but I also don't want to mess with my treatment.

people who suffer from autoimmune diseases, please write what it feels like!!!!!!!!!

HI folks, I am new here and also was diagnosed last year. Luckily, I was diagnosed early stage and my biopsy showed no fibrosis. Took steroids for 6 months, now trying to undo all the horrific body altering symptoms and have been put on Azoran 50. I want everyone who have been diagnosed for long time to share tips to maintain healthy lifestyle, work, food and other things a person can keep note of in order to tackle problems that are in our hands.

There are so many articles here and there about things we must or mustn't do but they cannot be as helpful as someone sharing the advice they have followed and have actually triumphed. I hope everyone present in this community shares useful tips that others can take note of. Thank you in advance!

I just started budesonide 9mg and am concerned about side effects i know they’re inevitable but i’m still just wanting to see what other people’s experience on it was. Did anyone gain weight or get moon face on it? I know it may sound superficial but I struggled a lot within the last few years to lose weight and am nervous all my progress will go down the drain. Doctors also want to start me on Azathioprine in a month depending on how I respond to Budesonide for something more aggressive treatment.

Hi there, I’m hoping that somebody with medical knowledge more than myself, I am a nurse can tell me what the results of this biopsy mean. I’m waiting on a callback from my doctor, but I’d like to have a little knowledge ahead of time. Here it is :

Histologic sections consist of markedly fragmented liver cores. Minimal portal inflammation is observed with focal rare associated eosinophils. There is a minimal focus of steatosis, less than 1% of the tissue submitted. The specimen is negative for iron on special stain. Trichrome and reticulum highlight no fibrosis and normal hepatic plates. There is no hyalin material highlighted on PAS-D while PAS demonstrates normal pattern of staining. Overall, the morphologic findings are non-specific. Differential diagnosis includes post-inflammatory changes and medication effect. Correlation with clinical and laboratory findings to clinically rule out infection and immune-related condition is recommended. Gross Description A. Liver, random: Received in formalin labeled with the patient's name, "ID: 1", and "random liver" are multiple tan-brown cylindrical soft tissue core fragments up to 1.1 cm. ES, Block A1. SM Special Stains I round, trichrome, reticulin, PAS, PAS-D

Thank you all…..

Does anyone experience changes in their cycles after diagnosis? If yes then how have you guys tackled the problem?

I've been consulting with MedSpas regarding laser facial treatment for sun-damaged spots. However, I was told by one MedSpa that the doctor did not feel comfortable going ahead with the procedure as it may cause some pigmentation that's not reversible. I asked my hepatologist and she never heard of this occurring before.

Has anyone with AIH gotten an IBL (broadband) Laser treatment and it turned out fine?? Or any type of laser treatment on the face and neck?

First, please try not to be judgmental as I am extremely hard worker and I have been working since the age of 14. This is by no way trying to get out of holding down a job. However, there’s a good possibility that I’m going to come up with a positive diagnosis for auto immune hepatitis. I have other comorbidities And I work full-time as a nurse. I’m currently holding down a nursing position in my local high school where I’m around sick people all day long, spread amongst children. I am curious with being on high dose, steroids and being immune compromised if I should be taking some time off of work during the initial treatment. As you know, school nursing is a petri dish of diseases and no matter how much you try it. Any suggestions from anybody that is currently battling this disease and how bad was your immune system suppressed. I’ve already battled Cushing’s disease and I am currently pituitary hypothyroid and hypo parathyroid. So add this to my list of stuff is no picnic. Like I said, I’ve been working since I was 14 and I’m 53. I didn’t even take off for the pituitary tumor diagnosis/surgeries. Concerned about being immune suppressed and I’m also concerned about high steroids and mood. I want to do what’s best for everybody.

Have anyone else experienced having horrible thoughts and feelings of hopelessness on steroids? Like having no hope, almost feeling suic**al? Im better now but i swear i felt SO LOW on budesonide and i have before of prednisone as well!!