Toxic Hepatitis? Becoming desperate for answers

We are in Korea and dealing with Korean doctors. My wife is also Korean.

My wife, who has been in pretty good health, delivered a healthy baby girl back in August. The pregnancy went fine with no complications. She went to the hospital to have her achalasia treated, where they insert a balloon into the esophagus and expand it so she is better able to swallow food.

The hospital did a blood test to check her before she had the achalasia procedure done and found that her AST/ALT levels were in the 500 range. They decided obviously not to do the procedure and advised her to stay in the hospital for observation of potential liver problems. She could not stay at that time because we had no child care plan in place for our 3 month old daughter (I work full time.)

A couple weeks later, she developed Jaundice, and promptly reported to the emergency room (2 weeks ago). The doctor has since administered several blood tests, a CT scan, and a liver biopsy. All hepatitis tests have been coming back negative, no gallstones or anything abnormal on the CT scan, no autoimmune disorder, and biopsy revealed nothing that they could attribute to any known cause. Her AST/ALT levels have been up and down between 500 and 1100 and her bilirubin has been rising steadily since, obviously accompanied by the jaundice. The doctor is now saying that there is a potential for liver failure. It looks like she is going to be in the hospital for awhile.

All the doctors can say is that it looks to them like it is "toxic" hepatitis, although my wife has not taken any pain medications whatsoever. They now insist on experimenting by administering her steroids, hoping that may improve her liver condition. This seems weird to me because if it is not an autoimmune disorder then steroids seem like they would be more of a problem than a solution.

I am extremely lost as far as what to do and its rougher knowing that these doctors are somewhat clueless as well. She is supposedly at one of the best hospitals in Korea right now. I am trying to keep my sanity through this; at the same time being a new first-time and now single dad and working full time. Does anyone have any idea if this protocol would be considered normal for someone in her condition? Or perhaps anyone stateside that could give some better advice based on all of her test results? There are not many second opinions available to me here, and few of them even speak much English.

Thanks,

Brian

Hi Brian

Sorry you and your wife are going through this. I can't help that much but would make a few suggestions/observations.

Firstly you can get reactions to many different medications not just painkillers. I've known a few people get hepatitis (i.e. inflamed liver) from antibiotics and statins. It usually resolves gradually once you withdraw the offending medication.

I had a couple of bouts of acute hepatitis with everything testing negative but then suddenly my readings resolved on their own (it was some years before I tested positive for AIH). When I asked the gastro what he would have done if they hadn't dropped he said he'd have given me steroids. His logic was that steroids are great anti inflammatories. They are also immunosuppressants so he'd want to be as positive as he could be that I didn't have viral hepatitis first but they should have reduced the readings. (I am in UK by the way so practice here may differ).

Incidentally when I searched for any articles about the use of steroids with toxic hepatitis I came across one report following some 47 people and all resolved with steroids. Interestingly the article was written by a Korean.

Have they ruled out any link with the pregnancy? It just strikes me that so much is happening after birth that there could be a hormonal link.

It is worth repeating tests for autoimmune problems - although mine tested negative in my first two bouts of acute hepatitis. It can be notoriously difficult to diagnose autoimmune problems in some people. Responding to steroids is one of the signs they use for diagnosis.

Hope things improve.

Ann

Brian

This is the link to the summary of the article.


http://www.ncbi.nlm.nih.gov/pubmed/16565608

You often need a paid access to get the full article which I don't have but I hope it gives you enough information.

I am not sure that the phrase toxic hepatitis is used in all other countries. Here in UK they tend to use the phrases 'drug induced hepatitis' or 'idiopathic hepatitis'. The latter means they don't know the cause and seems to apply to a worrying number of cases. I always think in this day and age they could find the reason but obviously not!

Ann

Brian, I just wanted to welcome you to the forum. AIHer gave you good info. In my non-expert opinion, it does seem that your wife may have an autoimmune disease.

Hugs,
Connie

Well today went better. Strangely, her bilirubin levels have actually decreased slightly (17 down to 13), although I'm sure it has a lot to do with her getting the chance to rest well in the hospital and having IV fluids and good nutrition. It was enough for the Docs to back off on the steroid recommendation for now. I surprised her with a visit with the baby and that got her spirits up as well.

I guess we will just have to see what the next few days brings.

I am curious of how her symptoms fit in with autoimmune disorder; I guess I need to do more reading.

David, I am not sure if they do transplants here; I would assume that they do.

Yeah my wife said liver transplants are huge here. This is more due to alcoholism and heavy soju drinking running rampant in this culture.

Liver function tests are worse again today. Seem to fluctuate a lot. I am thinking that a course of steroids may be the best way to go at this point. In all logic it seems like an autoimmune disorder, though the doc's said it wasn't, although they have ruled out just about everything at this point.

Hi Brian,

Sorry to hear your wife is having liver issues.  It does sound to me that it night be autoimmune.  In your initial post you listed what was negative and said "no autoimmune disorders".  How was that determined?  Have they run any antibody tests?  They do come back negative sometimes though so it doesn't always give a diagnosis but with autoimmune issues, they take many different things into account.  There is a scale they use to diagnose autoimmune hepatitis.  I'm sorry if you already answered this but have they done a biopsy?  A response to steroids is also used to help diagnose autoimmune hepatitis.  There are a couple of other autoimmune liver disorders as well.

Half my stress has been not being able to speak with an English speaking doctor through most of this. The only words I understood from her Korean doc's horrible English were "toxic hepatitis" and "transplant." The rest my wife has translated the best she could.

Brian

I'm glad to hear some labs are lowering

Have they checked for pbc. Primary biliary cirrhosis? More women than men have this diagnosis. It affects the bile ducts and has pretty much the same symptoms of other liver diseases. They generally use ursodiol by mouth to keep the bile flowing.

I spoke with a woman yesterday who was hospitalized 20 years ago with crazy high liver function numbers. It took a long time to diagnosis and normalize her numbers. She has followed a Healthy diet and taken the ursodiol for the 20 years. And is retired and playing golf 5 days a week.

Keep us posted

Carol

Thanks so much for getting back to me. The AST ALT numbers went down pretty fast right after the steroid course began last week. The BIL numbers were originally 18 at worse and her jaundice has noticeably gone down accordingly as well with it now at 11. The INR just doesn't seem to budge much and today they were concerned about the white blood cell count being so high.

I will research and ask some docs about your Autoimmune diagnosis concerns, as well as the BIL scale, and report back. Still doesn't strike me as toxic hepatitis, based on what I have read, but I am no doctor and I haven't the slightest clue what resources or experience these doc's have.

Brian

She had a light course of steroids for a week, then they upgraded to a higher dose of injectables. Her numbers are not changing. As of today she was INR 2.05, BIL 10.8, AST 282 and ALT 243. They plan to reduce the steroid treatment, since no changes have come about. We were both really hopeful. I asked about the PBC and PSC and she mentioned it to the doc. They seem like they are willing to try anything at this point. They thought they ruled out much from the CT scan, but it sounds like they will consider doing an endo to look into things further. Her primary physician is a liver specialist and she has been in touch with every resource she has. My wife is at a university hospital, so there are plenty of international docs looking into her case. What she is going through must not be something common. By theory, her liver should at least be healing itself at this point, and based on the tests, it isn't.

Normal range for bil is up to 1.2 as far as what I gather from them. I was told by a Military doc that they look for .95 to 1.05. The doc said they checked for PBC and PSC when they did the blood tests. They are cutting back on the steroids today because they are not working at all and wife is having some side effects.

At this point the doctors are stumped and don't know what to do anymore.

Post Edited (Brian74) : 12/31/2012 7:18:47 PM (GMT-7)

Brian

The tests seemed right to me also.

Did the do a liver biopsy? I can't remember

Which hospital is famous for the tourist transplants? Maybe try there if they have the best doctors.

Best

Carol