Shocking Blood Test Results Reveal Autoimmune Hepatitis Not a Moment Too Soon

I started feeling more fatigued and my appetite had been waning.

I saw the doctor and she figured I had a bit of a sinus infection, sent me home with some antibiotics and said she’d call if any blood work came back funky. I got a call a couple days later to come in – the lab had screwed up my liver tests. The day I was going to go in, I kept rubbing my eyes – because they were YELLOW!

I got into the Dr’s office and I had the nurse practitioners in there, the aides who took the blood and finally both docs! All convinced that truly, my body had to have been jaundiced when the labs were taken. I assured them all that no – I turned yellow that morning. Finally, the crowd removed themselves and I was left with the doctor.

The doctor knew immediately what was going on. I didn’t find out until much later how fortunate that was.

He knew immediately that I had Autoimmune Hepatitis. He had seen it before and concluded that the blood work confirmed it– he was certain. What he couldn’t believe is that my levels were so high before I went jaundiced – I was in the 6000s. He did more blood work to be certain and told me what to expect. He took me off most of my drugs, it would be easier on my liver.

He explained what it was, that it was the luck of the draw that I got it – or bad luck of the draw, and that it was a lifelong thing.

Other than that – he said a GI would be doing a biopsy to see how damaged my liver was and from there – we’d just continue to check on me.

My liver biopsy showed the damage done was minimal and that the condition of my liver would improve – and it has. Eventually I was put on 40mg prednisone – and that made me nuts. My body apparently could handle the hepatitis but not the steroid. I was up 4 hours, crashed for 4 hours etc. They lowered it to 20mg and it was much more manageable.

This was all before the internet – once I could get out of bed for longer than a few minutes – which was at least 6 weeks after diagnosis, I went to the library and did as much research as I could. I didn’t find out much that was good – you get it, you’re on steroids and eventually, your liver becomes cirrhotic and you die. Literally – that’s all I could really find out.

My fiancé went to the doc with me and asked if I would survive until our wedding in December or should we get married immediately. He assured us I’d be around for a while, so, it was okay to wait.

That summer, I recuperated, began swimming to gain some muscle strength and energy back and we got married in Dec on New Year’s Eve, just as we planned. Eventually I had to find a new GI. We were fortunate that we were just outside of Philadelphia and there were some good hospitals there. I found a terrific GI who showed me a clipping from a trade magazine – They had begun using Imuran – an immune system suppressant that they had used on transplant patients with good results – the clipping was 6 months old. We began to wean off the prednisone and on the Imuran right away.

From there – I was good for another year or two when the fatigue began to set in. Eventually we moved back home (Maryland) and I began working part time for few more years.

Eventually, the fatigue began to become severe and I had several months where I was sick – in and out of the emergency room. I applied for disability in August 2001 – I was unable to work the 2 days a week I was working at the time. We moved in with my parents because my mom’s health was failing and it was easier to keep one house in order than two and that was in August of 2002. I was approved for disability in Jan 2003. In July 2005 I found The Spoon Theory and “The but you don’t look sick” message boards and Christine Miserandino.

I became a member, moderator and admin on her message boards. When they crashed, I began helping her with other social media projects and becoming what I consider to be an advocate for the chronically ill community.

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Global Genes Comments

  1. Janet Lewis says:

    Hi, I have had AH forever. When it is dormant they tried to tell me I don’t have it, and never did at the VA. Now that I am on Medicare I have a Gastroenterologist who knows better. Other Doctors have tried to take me off my Azathioprine in the past and I have fought them on it. I was told that if I quit taking it, AH would come back with a vengeance and could possibly kill me. I’ve been on it for well over 10 years now.
    I just had a Rumatoligist tell me to stop taking it and see what happens, the nerve of some Doctors is appalling. Now I have to find another Rumatoligist.
    If you have medicare, the medicine doesn’t have a copay. It is a low tier drug. If you are unemployed go get on Medicaid, and apply for disability. Even if you find another job, you can still get disability started while you are working you just have to quit once the disability starts. You should file immediately so you get back pay. It is not a lot of money depends how much you paid in. You can get state help too. What is bad is that Medicare doesn’t start for 2 years. Which is really stupid.
    I have other Autoimmune problems as well, and may have Lupus. Hang in there, live and learn. The biggest part is learning to deal with fatigue, and weight gain. Good luck

  2. Kathleen
    Did you have labs that were out of whack? I had an abnormal ultrasound of liver, normal liver enzymes low total iron, low total iron binding capacity positive ANA and waiting on liver biopsy results

  3. I suspect I may have AIH. I have been having pain in my right upper quadrant and it has taken on several forms. On a regular basis, it feels like a dull ache but from time to time, the pain will get severe and my upper right quadrant will get rigid, like a charlie horse, then when it relaxes, i get that ache as if the area were bruised. Has anyone with AIH experienced pain like this?

    • Yes, I have AIH and the pain upper right is shocking, but since I was diagnosed with the disease I’ve contracted IBS and Fybromalgia, diet is one to watch, certain foods can upset your tummy and I’m about to have my second colonoscopy since I got AIH, maybe ask to have a poo sample tested, you may need one, hope this helps cheers 🙂

    • Yes, dealing with this now. I Have Charcot Marie Tooth 1A, and Chronic Lyme . ANA test positive , ALT 35, CHOLESTEROL 258, HDL 113, LDL-CHOLESTEROL 128, TRIGLYCERIDES 86, NON HDL CHOLESTEROL 145, CHOL/HDLC RATIO 2.3. Last August Gallbladder removed and was feeling better after. But the last few months the right side pain, ouch! Can feel it thru the back and sitting up is hard. With Lyme I am having a lot of problems with eating things. Seem as meet is the only thing safe. Just gave up and eating all but meat for a week. This is the only way I feel better… Allergies Milk, aspergillosis, penicillin. No, sugar, yeast, starchy things and night shade plants. Lord help me… any help out there please respond. Thx you

      • I’ve been in remission for two years, it’s terrible fighting this AIH at the beginning, my thoughts go out to you all. I now have fybromalgia and ibs, a shocker!! Please feel free to email me when you need 🙂

  4. K Wilkinson says:

    Can you tell me which blood tests your doc initially saw that convinced him/her that you had auto immune hepatitis? My liver enzymes have been steadily climbing for over a year. I went off Xeljanz in the hopes that it was the culprit, six weeks later my AST and ASL levels are even higher. I am also out of range on Ferritin and GGT. I emailed my rheumatologist, but felt his response was like a hand-slap. He said that he had already checked for that and to go to my PCP. After ignoring the increasing enzyme levels for a year and only ordering another CBC when my nephrologist became alarmed – well, I have lost a bit of faith in him. What test would he have run to rule this out? I don’t see anything obvious other than Sed Rate, but I am also only as good as Google. Any help is appreciated.

    • Hi there, my autoimmune hepatitis was diagnosed via a liver biopsy, I hope this helps.

      • K Wilkinson says:

        Thanks – I am pretty frustrated with this year long process. Hopefully they will figure this out soon.

    • Hi there K,
      This is my first time posting and have congratulate the author for starting to raise awareness about this condition. In relation to your blood levels I remember my doctor say that my “Bili” levels were very high Bilirubin. I to had to get a biopsy to confirm the condition

  5. Some people diagnosed with autoimmune hepatitis actually have toxic hepatitis, as a result of ingesting diet/energy drinks containing green tea extracts. The health food/supplement industry is trying to cover up the incidence of the toxicity of green tea extracts.

    If any of you, who have been diagnosed with “auto-immune hepatitis” were using diet or energy supplements before you got sick, would you post it here?

    Diet/energy drinks and green tea supplements are not FDA approved. There’s a whole article in Consumer Reports magazine documenting the toxicity of green tea extracts.

  6. i was dignosed AIH 3 months ago i m 24 yrs old and married..plz share some information about AIH ..
    is it effects on my married life??

  7. It sure is scarey stuff eh! The steroids nearly drove me insaine lol I have to laugh or pack it in sometimes, still in remission and took em 4 days to find my disease, coping is the hardest part!

  8. Feel free to email me, I’m happy to help 🙂

  9. You can find my blog on Word Press, it’s an Apple app, cheers.

  10. Hey all, Kathleen, From up top there, please free to email me about auto immune hepatitis, I would love to help anyone who needs to talk about it, and keep smiling, we can do this.

  11. Melissa McGinnis says:

    Thank you! I was diagnosed in autumn of 2014, I’m on Imuran and 5 mg prednizone, was laid off from the three days/week from a combination of not enough work and calling in sick so often. I thought there was something wrong with me, but to see someone else who’s gone through the same thing is…well, not wonderful, but it helps. A lot.

    My diagnosis was somewhat different, I had been throwing up, sick for about a week. Thursday I was yellow, Saturday, the 22 of September I went to the ER and was admitted to the hospital that night. MRI and Ultrasound…either that night or the next day? I was in there for 10 days, blood tests twice a day for a week, then once a day. On the 29th I had a biopsy, it showed pretty major damage, but then they put me on, like I said, Imuran and Prednisone. I have days when I don’t even want to get out of bed, or when I’m stuck in the bathroom. And no one understands this!

    • Hi there, you can find me, Kathleen Colman in a blog to do with this disease on Word Press, an apple download, be great to be friends, my name on there is… remission, cheers.

  12. Hi there, I was diagnosed with autoimmune hepatitis 3 years ago and felt so alone. I was scared I would die but even worse, I had and still don’t have anyone to talk to who shares the same disease. I’m currently off all drugs for my disease and in remission, so far, so good and fingers crossed. I would love to meet others who suffer with this disease due to the fact I’m now suffering from something else which makes me more lethargic than ever, please help me understand more about diet, exercise etc and thank you.

  13. How is it I can find nothing online about others with Hepatitis C? I have it and have had to postpone treatment for a year to try and save money for what I’ve only heard is a Horrific year. I know I am not alone. I want to hear from others and hopefully take away some of the fear of the unknown. I’ve looked into all sources of aid to pay for this but evidently the fact that the treatment costs what my spouse makes in a year, we make too much! Ludicrous. I feel I have to save money to pay for my life.
    The drug Incevik is supposed to be good in the treatment of Hepatitis C but costs a great deal per month but comes packed with some of the nastiest side effects that I have ever heard of. The people I have found that we’re cured of the Hep C only took the interferon which is bad enough with it’s own side effects and Ribivirin.
    Why does everyone hide this disease? Why hasn’t someone informed most of older baby boomers that there is quite a possibility of them having the same? Is this why it’s called a Silent Killer? I am not going to give up this fight but by damned I’d like to share with others.

    • Melissa McGinnis says:

      Okay, try to get a no name brand of imuran. I’m taking Teva-Azathioptine 50 mg (1 per day)
      And 1 prednisone 5 mg per day.
      It’s around 50 dollars per month for both of them. This isn’t the same as Hep C, I had that ruled out quite early on by blood tests, and sadly it’s not even the older people, I was 30 when I was diagnosed. If they give you morphine, oh dear god, even if it’s just a half of a tiny pill, do not, for all the sanity in the world, take it with even a quarter of a gravol. I made that mistake, and had THE WORST nightmare that night, I woke up sobbing, and shaking.

      If you do find the medication is too expensive, try talking with the hospital, your hepatologist. They can often find you financial aid. (Something I need to do too. I lost my job, so scraping up even that much is difficult right now)

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