Can you be misdiagnosed with autoimmune hepatitis?

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Tmphipps
New Member


Date Joined Nov 2016
Total Posts : 9
   Posted 11/1/2016 6:12 PM (GMT -6)   
Hello, I am new here. My dr just told me I have AIH. Part of me is wondering (maybe denial..) if this is true. My history... 5 years ago I had some pain, went to dr., elevated liver enzymes. (AFT and AST were in the thousands, high bilirubin also). Had MRI and liver biopsy. They said looked like "drug-induced" (I had taken a supplement that contained black cohosh which they said was prob the cause). It took a cpl years but everything normalized without treatment.

In September I had some pain again. It lasted a cpl weeks then when I went into the dr the pain was basically gone. Tests showed elevated liver enzymes (approx 400). Had a cat scan. Showed a "likely benign lesion". Referred to a GI. More blood tests. Several diff ANA tests done. One came back positive. Tested for various viruses since I am a 3rd grade teacher and could have been exposed to something. Chicken pox and mono were mentioned as not being within normal range. Possibly due to previous infections. (Had chic pox as kid, but never diagnosed with mono). Liver biopsy done on Friday. Dr called yesterday. Results back already. Said looks like AIH but there is no definitive test to say yes or no for AIH. This dr has been saying since my first visit with him that he thinks it's AIH and I can't help but feel that he is so set on this that he isn't ruling out other possible causes for this elevation.

He is also not very personable at all and on the phone last night I felt very overwhelmed with all the info especially about the side effects of steroids. When I told him I felt hesitant to start steroids right now bc of this (plus liver enzymes dropped - went back up but not all the way then down and back up a little.. trending down overall I think/hope). I asked about monitoring and he told me that I don't have to followhis recommendations that I could just shove them! So he is unapproachable and I don't feel comfortable asking questions.

Sorry this is so long, I guess my main questions are could this be a misdiagnosis? What other reasons could cause elevated numbers? Could extreme stress cause it? What are your side effect experiences with steroids?

Thank you in advance,I'm feeling very overwhelmed right now!

ppm guy
Veteran Member


Date Joined Apr 2010
Total Posts : 1080
   Posted 11/1/2016 8:21 PM (GMT -6)   
hi tmphipps and welcome,
when liver enzymes are in the thousands, aih, acute liver toxicity are suspected. less common causes could be hep A or B. then you had a 5 year remission. im sure your GI checked all these possibilities. steroids are the go to drug for AIH flares. You will find out. Or it can make you feel worse, if misdiagnosed. one of our moderators has AIH. I will ask for her to follow up with you.

I have MS also a autoimmune disorder. so I also use steroids during flares. im energized while on them, then feel fatigued both physically and mentally, for4 or 5 days after..but when it works, the few days of blahs are worth it.. also, I reduce salt intake on steroids, because they can make you hold water.
best to you,

Tmphipps
New Member


Date Joined Nov 2016
Total Posts : 9
   Posted 11/2/2016 4:32 AM (GMT -6)   
Thank you ppm guy for your reply. Right now I have no symptoms. Steroids would make me feel bad if it's not AIH? In what way? Just fatigued?

Thanks again!

ppm guy
Veteran Member


Date Joined Apr 2010
Total Posts : 1080
   Posted 11/2/2016 7:21 PM (GMT -6)   
If it's not AIH, the steroids would make your alt/ast rise again. Steroids are not good for the liver, unless you have autoimmune(aih).

I would ask for a different dr.. A dr that you can't question comfortably, would get me upset. You do have a difficult type of hepatitis to diagnose. a hepatilogist would be a better option. They are the experts.

Drug induced hepatitis doesn't take a couple years to resolve. And the only positive hepatitis test you've had is ANA. Did your dr tell you if you have any liver damage? Hopefully your liver healed during your remission. Let me know what your told.

ppm guy
Veteran Member


Date Joined Apr 2010
Total Posts : 1080
   Posted 11/2/2016 7:29 PM (GMT -6)   
Can I get a moderator to alert DGinSD for AIH ??s. Her email is not working for me

Tmphipps
New Member


Date Joined Nov 2016
Total Posts : 9
   Posted 11/2/2016 8:44 PM (GMT -6)   
Thank for your reply. I made an appointment with another doctor. I have Kaiser and my pcp referred me to another GI Dr (at another location). I had asked for a hepatologist but maybe there isn't one within Kaiser here... My original GI called tonight because the pathologist didn't comment originally on the chronicity/scarring so my Dr asked about it. He was told there is some scarring but not extensive from what I understand..again he is difficult to understand and I don't feel very comfortable continually asking for clarification/explanation.

ppm guy
Veteran Member


Date Joined Apr 2010
Total Posts : 1080
   Posted 11/3/2016 8:52 AM (GMT -6)   
I have Kaiser in Southern California. They do have hepatologists. They are usually located in their surgical centers. I do have to drive 50 miles. My liver is stable now, and just use their email(Kp org), to ask questions

Let me know what the new GI says.

DGinSD
Forum Moderator


Date Joined Apr 2007
Total Posts : 844
   Posted 11/7/2016 9:43 PM (GMT -6)   
Tmphipps,

Sorry, I'm generally incognito but this year has been worse than usual. Anywho, yes, it could very well be AIH. And while it would be awesome if it could go back into "remission" - we generally call it being stable - bouncing back and forth with inflammation is actually pretty bad for your liver. I'd want a concrete response on whether or not you have scarring/cirrhosis. If you do, I wouldn't hesitate getting on the steroids and following that up with an immunosuppressant. Then they'd slowly wean you off the steroids.

Please really focus on getting to a hepatologist. Don't fear the 'roids as scary as they seem. They are a life saver and a life extender. On the plus side, since you do seem to hit lower levels, budesonide might be fine to start with. It's a steroid but it acts differently than prednisone. Less side effects!!!

I'd also like concrete answers on which antibodies were positive. As ppm guy said, if it is AIH, you'll have a response with the steroids and none without. your biopsy should've been the definitive test as that is considered the "gold standard" for AIH diagnosis. So if they aren't 100% sure from your biopsy....press the issue of testing you for PBC (Primary Biliary Cirrhosis) or PSC (Primary Sclerosing Cholangitis).

Shoot more questions my way...I'll see if I can figure out why my email link didn't work for ppm guy...
Dany
Co-Moderator - Hepatitis
___________________________________________________
AIH Jan 2007
CMV June 2008
Raynaud's February 2010
Meds: Azathioprine 100mg & Ursodiol 250mg BID

Tmphipps
New Member


Date Joined Nov 2016
Total Posts : 9
   Posted 11/8/2016 9:55 AM (GMT -6)   
Thank you for your response. I have my appointment next week and will add these questions to my list to bring. My most recent test (last Thursday) showed my ALT at 196 and AST at 81 (not taking anything).

I don't totally understand the antibody tests, but looking at my test results/test names, this is what I see:

ANA EIA -- negative
ANA IFA -- positive
ANA TITER AND PATTERN (NUCLEAR AB, SER, QL -- 1:80; ANA PATTERN -- homogeneous)

As far as the scarring, my other GI said that the level was 2 (whatever that means).

What are your experiences with side effects to steroids?

How susceptible are you to infections due to the immunosuppressants? (I am a 3rd grade teacher and am around germs alllll day :-) )

Thanks again!

DGinSD
Forum Moderator


Date Joined Apr 2007
Total Posts : 844
   Posted 11/10/2016 8:28 PM (GMT -6)   
I was wondering if they tested more specific antibodies...ASMA (anti-smooth muscle), ALK-1 (anti-liver kidney), and less commonly; anti-soluble liver/liver pancreas antigen (anti-SLA/LP) or atypical perinuclear antineutrophil cytoplasmic antibodies (atypical pANCA).

Also, they can check for AMA antibodies that would show up if it's PBC.
So you're sure they said scarring and not fibrosis?

As per steroids, I had all the physical and mental side effects. The only one I didn't have was steroid induced diabetes. So hyperactivity, moon face, leg swelling, hump on upper back (that was awesome!), acne, back-ne, irritability, a little spontaneous rage, emotionality...good times, good times. I was on 40mg for 5 weeks though, then 30 for 4, 20 for 3 (I think) 10, for a couple... I cleaned the garage in the middle of the night and the freezer. Had I known, I would've used that sleeplessness more productively and painted. I was super sick when they diagnosed me so they hit me up hard. As I said, Budesonide has less side effects and my hepatologist said if I ever flare, they'll put me on that. I didn't get sicker than normal. My daughter was 8 at the time so the usual school germ magnet. My mom was diagnosed with lung cancer a couple of months after my diagnosis and I flew home to spend a couple of weeks with her and go to chemo appts and didn't get sick. I like to say my cracked out immune system had a good balance with the meds. It kept fighting off the bad but stopped trying to kill me :-) I had started immunosuppressants the week after I started the steroids and after about a few months I actually piggy-backed two immunosuppressants waiting for the azathioprine to kick in (it takes two months and since I was so ill they had originally started me on CellCept).

I wouldn't worry about an ANA of 1:80...that's barely positive. Have they repeated that? Mine initially were either 1:640 or 1:1280 (I can't remember as I may be mixing them up with my daughter's, I'm pretty sure she had a 640 or maybe hers was a 1:320 and mine was the 640...and yet she hasn't been diagnosed with an autoimmune disease yet so fingers crossed :-)). I'd ask to have that repeated too.

And wait a min....I know you were tested for a bunch of things...was one of them CMV (cytomegalovirus)? Since you're a teacher, I wouldn't be surprised if you are positive. It causes jaundice...and other things. I contracted it after diagnosis so for me, it caused hemolytic anemia - it only lasted a couple of weeks but it can be nasty in the immunosuppressed.

They said your gallbladder is fine? Wondering if the "likely benign lesion" is anywhere near a bile duct and is restricting flow at all. Ever have pain in your right shoulder blade? Trouble with greasy foods?

Are you seeing a different doctor than the dictator?

That's a lot for now, I'll let you digest a minute :-)
Dany
Co-Moderator - Hepatitis
___________________________________________________
AIH Jan 2007
CMV June 2008
Raynaud's February 2010
Meds: Azathioprine 100mg & Ursodiol 250mg BID

Tmphipps
New Member


Date Joined Nov 2016
Total Posts : 9
   Posted 11/11/2016 6:01 PM (GMT -6)   
Thank you for all this information. I'm going to apologize in advance for all the questions I'm going to fire at ya! :-)

I have not had any of those other antibody tests. Should I ask for them? What would they show?

He did say scarring, not fibrosis. What would be the difference?

Thank you for sharing the side effects you experienced. I've never heard of the hump on the back! Did you have weight gain as well? Are you still on steroids? If not, did those effects reverse--did you essentially go back to "normal"?

If Budesonide has less side effects why wouldn't that be the first course of treatment? Is it less effective? It's good to hear that you didn't appear to have extra sickness due to the suppressed immune system. Sorry to hear about your mom. That must have been rough for you.

The ANA was 1:40 and then 1:80. They haven't repeated it since then. (Oct 14)

These are my results for the CMG:

CYTOMEGALOVIRUS IGG,SER,QN 4.11 standard range is <=0.90

My dr said that this may be because I was exposed to mono at some point. I have never been diagnosed with mono...He also mentioned something about my varicella test but said that this could be because I had chicken pox as a kid.

They said my gallbladder is fine. They did see a kidney stone on the right side (something to look forward to I guess...) but my dr said that would not cause this.

I don't remember having pain in my right shoulder blade...maybe? What would this suggest? But I've had pain (not often...very seldom) in the front of that area...my chest area on the right side directly in front of where my shoulder blade is (if that makes sense).

I don't really eat greasy food, so I haven't noticed any issues (you mean pain I assume?). Maybe I should try and see :-)

I had another liver test yesterday. Numbers went up a little ALT 230 AST 133.

Dicatator LOL Yes, I have an appointment with a new doctor on Tuesday.

Thank you so much for sharing your experiences. I appreciate the questions you are asking as I am adding them to my list to bring Tuesday.

ppm guy
Veteran Member


Date Joined Apr 2010
Total Posts : 1080
   Posted 11/11/2016 10:27 PM (GMT -6)   
Hi tmphipps,
I was just catching up your thread. The difference between scarring and fibrosis, is scarring doesn't heal. Fibrosis can regenerate. I see where you stated, that your dr. Said you were at level 2. That would be fibrosis. Scarring would happen at late stage 4.

Tmphipps
New Member


Date Joined Nov 2016
Total Posts : 9
   Posted 11/12/2016 7:42 AM (GMT -6)   
Thank you for explaining that ppm guy :)

DGinSD
Forum Moderator


Date Joined Apr 2007
Total Posts : 844
   Posted 11/12/2016 6:24 PM (GMT -6)   
I'm on my phone
All my side effects whent away or started going away when I got down to 10mg of pred. I was on pred for a total of 22 months. Budesonie wasn't approved for use with AIH. It was primarily used for Crohn's. They started trying it since the side effects were less and are using it more and more as the resutls proved promising.
The other antibody tests are specific for AIH (although not all patients with AIH have positive antibody results). Except AMA, that's specific for PBC.
I'm hopeful new doc will be better. The virus that is associated with mono is Eppstein-Barr so for that point, and not that one alone, I would lose faith in your current doc. Your CMV is high. You may want to ask new doc if your liver levels could be due to that...and maybe also see an infectious disease doc. There is an anti viral for CMV (gancyclovir) but it isn't the greatest drug. So they may not pop you on that if they don't think the CMV is the culprit.
Also ask this new doctor, nay, demand that this new doctor refer you to a hepatologist. You should not be casually awaiting liver levels to climb for action. It is not good to keep your liver inflamed.
Oh...are you drinking any alcohol? Please do not drink ANY! And if you get a cold, take no cold medicine containing alcohol. There are some cough syrups that have zero. Alcohol is the worst thing for your liver especially when already inflamed.

I think that's good for now :) Oh, the shoulder blade and greasy food questions were concerning your gallbladder but if it's fine, don't worry.
Dany
Co-Moderator - Hepatitis
___________________________________________________
AIH Jan 2007
CMV June 2008
Raynaud's February 2010
Meds: Azathioprine 100mg & Ursodiol 250mg BID

Tmphipps
New Member


Date Joined Nov 2016
Total Posts : 9
   Posted 11/13/2016 2:31 PM (GMT -6)   
Thanks Dany. So the other antibody tests can be negative even if you have AIH?

I may be mistaken...When my dr said I had been exposed to mono at some point, he could have been referring to the Eppstein Barr test. I don't remember. However, that doesn't explain why he didn't acknowledge the CMV I suppose.

I am not drinking any alcohol or taking any medications at all. I was a social/occasional drinker, but since the pain started in September, I have not had anything.

Thanks again for answering my questions.

AIHer
Regular Member


Date Joined May 2012
Total Posts : 196
   Posted 11/16/2016 3:33 AM (GMT -6)   
Hi

I too have AIH - diagnosed in 1999. Antibodies in AIH can be complex (lets face it most things about AIH are complex!). I have never tested positive for ANA but do for SMA - but then so do lots of people without AIH. So it is like putting pieces of a jigsaw together. My first biopsy didnt even confirm my diagnosis although later ones plus the fact I have responded to medication did.Which is why if there is any doubt I would also advise seeing a hepatologist ideally one experienced in autoimmune liver diseases.

They usually do a huge work up initially to exclude viral causes. Indeed I am in a flare at the moment (which is most likely actually the start of PBC or PSC to add to the AIH but that is a different story!) and even though I have long standing AIH my hep did not assume it must be a flare but tested for many viruses - again. And we went through possible medication links.

In general people on immunosuppression do very well. I am a member of quite a few AIH Facebook groups and whilst some people do get a few more infections than before many of us don't. We have teachers, nurses, and others who work around kids, ill people who do fine and dont pick up infections.

Good luck and keep asking - I am in UK so apologies for any Brit speak you don't understand!

Ann

Tmphipps
New Member


Date Joined Nov 2016
Total Posts : 9
   Posted 11/16/2016 4:00 PM (GMT -6)   
Thank you Ann for your reply. They did do a bunch of tests for different infections.

I had my visit yesterday with the other doctor. She stated that everything together suggests AIH. She also said that I do meet the minimum criteria to start treatment. However since my numbers are low and liver damage is not severe she said it would be ok to watch my numbers for a couple weeks and see what happens. I've been reading a lot about the possible connection between autoimmunity and gluten and dairy. Have any of you gone gluten and dairy free to see what happens?

AIHer
Regular Member


Date Joined May 2012
Total Posts : 196
   Posted 11/17/2016 8:41 AM (GMT -6)   
I did try it once - got very bored and it did absolutely nothing for my bloods or how I felt. So I stopped.

Tmphipps
New Member


Date Joined Nov 2016
Total Posts : 9
   Posted 11/17/2016 12:18 PM (GMT -6)   
May I ask how long you did it for? Did you eliminate all gluten and all dairy?

What about the Paleo diet--had anyone here tried that?

AIHer
Regular Member


Date Joined May 2012
Total Posts : 196
   Posted 11/20/2016 11:16 AM (GMT -6)   
I honestly cant remember how long I tried it for. Usually I give things 3 months unless there are clear signs it isn't for me. Ann
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