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Can autoimmune hepatitis go away without treatment? Should I be concerned anymore?

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HealthSavvy
HealthSavvy

Female, mid 20's. In late March I developed horrible upper right and lower sternum abdominal pains. At first I thought it was gas pains. However, I noticed the pains were not getting better and the pains worse. It hurt to breath. The pains would go and come throughout the day and got worse at night. I had this issue for maybe 3-4 days before going to the hospital. Also, the same day BEFORE those abdominal pains started I developed a rash on my arms and feet, a persistent cough (asthmatic) and was passing dark urine. Eventually the abdominal pains had gotten so bad I was sweating, having chills/ tremors, and looked very sickly (skin got darker). My ribs felt like they were compressing something that was combusting at the same time. It hurt like hell!!

When I got to the hospital I was given an ultrasound.

Kidneys normal, liver normal, pancreas normal, gallbladder normal. I was given a blood workup. Viral hEpatatis A-C negative, STD negative, and HIV negative. However my LFT test came back as "a bit elevated" and had "non viral hepatitis" as well as "mild jaundice". I was kept overnight and was given a autoimmune test. It came back ANA negative, Mitchondira Negative, but Smooth muscle antibody positive with 1:40 titer. I was discharged from the hospital because my pains had eased from initial arrival and was stable.

My LFT test was (AlK Phos 264, ALT: 89, AST: 174, ESR: 74) upon discharge.

I followed up with a different doctor for a 2nd opinion about 3-4 weeks later because the hospital wouldn't answe my questions. As of April 17th my liver function returned to normal and I am no longer testing positive for that Smooth muscle antibody test. It is now undectable. Leading my new doctor to believe I don't have that disease. As happy as I am to hear everything has mostly gone back to normal except my ESR which still slightly elevated but decreased. (Alk Phos 108, ALT: 22, AST 32, ESR: 32) I'm still having upper right abdominal discomfort. It's not as bad as it was the first time, but I'm still having some mild discomfort. Why? I told my doctor about it but he didn't seem worried. I don't respond to pain when he feels around. I can't tell him where the pain is specifically either because it's a dull discomfort. I can't pin point it.

I was never diagnosed with it as I never had a liver biopsy. My liver function returned to normal before I could. It was just a working diagnosis the hospital gave me because they didn't know why it was elevated, but the GI team said a UTI can sometimes cause an elevated liver enzyme. Yet never treated me for the UTI to see if it would make a difference. It was told to just check back in 1-3 months to make sure everything is ok and that o probably caught some kind of virus that's not hepatitis. What virus could cause that? I'm hEpatatis A-C negative. I was vaccinated for A.

0 likes, 13 replies

13 Replies

  • g93095
    g93095 HealthSavvy

    Posted

    My friend had all the same symptoms, tests and negative results.  Finally she has been diagnosed after more than 30 days of sufferring and multiple scopes & colonoscopy with Autoimmune Hepatitis.  This was diagnosed based on blood results.  She is about to start treatment with pregnisone.  This isn't the same as hepatitis A-C.  It's an autoimmune disease that attacks the liver.  Google it. 

    Good luck.  

    • HealthSavvy
      HealthSavvy g93095

      Posted

      Thanks for sharing ur story. Just seeing this now. I forgot I posted this awhile back. At the time I was still learning about it and that's what the doctors put on my discharge paper a possibility. However, I quickly sought a 2nd opinion and my liver enzymes returned completely normal and I was no longer test positive for the ASMA test. I'm doing much better compared to when I first posted this. I'm still going to check in with a GI specialist as I have a mildly elevated lipase. I'm sure I have to change my diet and watch what I eat. I cause was never found, but I'm not complaining. That's a heavy diagnosis for anyone. I'm glad I did learn about this disease though. I never heard of it before. Certainly expanded my mind and has changed me.

  • HealthSavvy
    HealthSavvy

    Posted

    I can't believe I forgot I posted this question! So far my liver function has been remaining within a normal range and I haven't been having any problems since. Just the occasional pain here and there, but I found out it was diet related. Sometimes spicey food can irritate my liver and bit, and since my diaphragm and liver are close and I am asthmatic having breathing issues tend to trigger pain a bit too. Also, I learned I possibly had mild pancreatitis. My lipase level was mildly elevated. Up to his day the doctors STILL don't know what caused it and so they attributed it to a "virus".

    I even requested my medical records from the hospital that handled the case and GI specialist that saw me wrote in my notes that he's r/o autoimmune hepatitis because my case wasn't significant and I was starting to show signs of improvement. Yet he was telling me something different whenever he visited my room. Something seemed rotten in Denmark. Of course, I will continue to monitor my liver function and will be visiting a new GI specialist this week just as a precaution. I've already had a CT scan done about a month or two ago and I was told everything came back normal. They saw NOTHING wrong with my liver. No inflammation, nothing. Assuming this good news since I was hospitalized in March for elevated liver enzymes and he CT scan in May or June showed nothin wrong? I'm going to be honest it has been a very scary time, but at the same time I glad I learned about this horrible disease. Before I never heard of it.

    • HealthSavvy
      HealthSavvy

      Posted

      Just to be clear I was NeVER officially diagnosed with it as everything returned to normal and mic showing continuous improvement in enzymes. It's back to numbers I'm use to seeing.

    • Evie1963
      Evie1963 HealthSavvy

      Posted

      I had hep c (treated with the new drugs) and liver cancer. Before I was diagnosed I was having episodes of excruciating pain under the breast bone radiating through my back and atrial fibrillation episodes. At the time my lipase was elevated.

      Lipase and amylase are enzymes produced by the pancreas and when elevated can indicate pancreatitis. I noticed u mentioned elevated lipase.

      Once I had hep c treatment and cancer treatment I have not had that pancreatic pain or elevated enzymes. Just a thought for your quest in diagnosis.

  • denae14404
    denae14404 HealthSavvy

    Posted

    ANA smooth muscles can be elevated for viral infections. If you had an infection at the time this probably would've been the reason. I would say viral hepatitis!!

  • FinnTheHuman
    FinnTheHuman HealthSavvy

    Posted

    I have severe AIH. It doesn't go away without treatment (usually corticosteroid and immunosuppressant), and a liver biopsy is normally the only way it's 100% confirmed as AIH has very specific histology. Sufferers can be seronegative and show no antibodies. Some people are lucky and only have mildly elevated LFTs, but mine for example often reach nearly 1,000 and over and my liver would be seriously damaged, requiring a transplant in a few weeks without treatment. Sometimes viral infections can cause a small increase in LFTs, but not often jaundice!!

    • trudy98661
      trudy98661 FinnTheHuman

      Posted

      HI FinnTheHuman,

      may I ask: how last ng ago were you diagnosed and what symptoms do you have?

      I was diagnosed 6 months ago through a blood test : ANA+ elevated Img

      my liver specialist does not seem too concerned; just monitor blood every 6mths Meanwhile I take a very long time to recover from a cold . Get tired very quickly and have developed oral lichen planus. Meanwhile i have had a full work up; my  blood work is all within normal ranges . This is frstrating because nobody seems to have much in terms of answers like what to expect - will I be we'll enough to gack to work? Etc

      any advice/ info/ experience would be much appreciated.

      thank you

    • FinnTheHuman
      FinnTheHuman trudy98661

      Posted

      Hi. I was diagnosed Christmas Day 2015, séronégative at the time (antibodies picked up on later testing), but with specific patterns of liver cell destruction only seen with AIH on the biopsy.

      My symptoms of flaring are:

      -Deranged Liver Function Tests: High ALT (usually >20x top lab value), high bilirubin, raised GGT, sometimes raised ALP and AST. Deranged blood clotting- high INR. Also at the moment experiencing low albumin levels and severe anaemia despite blood transfusions

      - Swollen liver and spleen on ultrasound (splenohepatomegaly)

      - Yellowing of the skin and whites of eyes (sclera). I'm nearly always some shade of yellow.

      - Vomiting, nausea and lack of appetite. This can last weeks or months.

      - 'Unexplained' weight loss (3 stone since October).

      - Pain in upper right abdomen, under ribcage, which is constant.

      - Fatigue, which can be debilitating.

      - Very dark frothy urine (looks like

      'real-ale'wink and light yellow or clay coloured stools. Very oily/fatty poop.

      - Cessation of periods

      - Intense itching all over body, especially at night.

      It's good your blood is at normal ranges. Is that without immunosuppressants/steroids? You're slightly more likely to get ill with taking immunosuppressants etc, if your white blood count is low but the real danger is with infections like pneumonia and sepsis which are harder to fight off- rather than viral (Aa far as I know). Being tested every six months is pretty standard really if you're in biochemical remission (bloods aren't deranged).

      Being able to go back to work is a pretty big question. I used to go to work yellow and being sick for months on end. Then I developed brittle diabetes. I've been in hospital over ten times last year. Employers were not happy, but the only reason I left work was due to being in hospital and having to take constant time off.

      Unfortunately, with autoimmune diseases it seems common that people generally experience fatigue and stuff like joint pain regardless of their blood results.?

    • FinnTheHuman
      FinnTheHuman

      Posted

      There's a group on FB called AIHOrgUK which is great for asking for advoce and speaking to other people without AIH etc. It's a highly 'personal' disease and no two people seem to experience it the same way.

    • FinnTheHuman
      FinnTheHuman

      Posted

      WITH AIH, not without. Stupid autocorrect. Sorry.
    • trudy98661
      trudy98661 FinnTheHuman

      Posted

      Thank you x 100000 Finn

      That's more info you have given me than 4 doctors over the past 6 months have done!

      I understand it's a highly personal/ individual condition. It's just nice to have some idea of the whole picture.

      I am also peri menopausal so I don't know if weird symptoms are hormonal, relating to aging (I'm 49), AIH related, psychological or something completely new?Oh joy ; )

      So I thank you for sharing your particular situation/experience AND the website!

      Autoimmune conditions seem to be on the rise yet western medicine does not seem to understand it well. I am going to try eastern medicine or at least a natiropathic (wholistic) approach),

      I wish you well and keep fighting spellcheck!!!!!

  • trudy98661
    trudy98661 HealthSavvy

    Posted

    HealthSavvy

    I too have AIH. I was diagnosed when I was being treated (successfully) for hep C.

    I live with a compromised immune system (constant colds in winter; take a lot of vitimin supplements) and have developed oral lichen planus (not fun)

    I don't know that you can ever make Autoimmune Hepatitis

    'go away' (as much as I would love that).

    After all it does s an autoimmune disease.

    You can control it by the use of corticosteroids etc...

    How long ago were you diagnosed?

    How did it manifest or show itself?

    All the best

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