waiting to be diagnosed.

Ive been really unwell for 8 weeks now ( jaundice, fatigue, nausea, dark urine, pale stools, pain under my ribs on the right side and just feeling generally very unwell ) ive had high bilirubin and alt levels, i ended up in hopsital twice, my doctor and the doctor in hospital both thought it was hepatitis a, all my tests have come back clear for hepatitis. Ive had a scan and that was clear. Im waiting for results of a full autoimmune screening, autoimmune hepatitis has been mentioned but now my bilirubin and atl levels are starting to go down they think its unlikely, is it possible for the levels to go down without treatement? its driving me crazy not knowing what has been making me feel so ill.

Hi Sarah,

I have AIH (autoimmune hepatitis).  I had all the same symptoms that you're having...including some teeth chattering chills. 

It is possible for your levels to come down on their own.  Were you on any antibiotics or pain relievers that you are no longer taking?  Some can cause the same symptoms and when you stop taking them, the liver heals.  Sometimes though, drug-induced hepatits can trigger AIH.  Once your blood work comes back, even if your autoimmune antibodies are negative, I'd speak to the doctor about a liver biopsy.  Some AIHers don't have positive antibodies, some develop them later but a biopsy would determine extent of damage and will also help diagnose the type of cellular changes.  That can help pin point a diagnosis as different liver diseases cause different types of change.  Did they also run an AMA blood test?  That's for PBC (primary biliary cirrhosis)...another autoimmune liver disease. 

What were your levels, if you don't mind me asking?  What "scan" did you have?

thanks for the reply. They have tested for all strains of hepatitis and all have come back clear. They havent given me any medication. Ive had an ultrasound scan which came back clear and im having regular blood liver functions tests, my bilirubin went up, came down a little then went sky high, i looked like a character out of the simpsons the alt levels have been up and down at the moment both are the best they have been in 6 weeks but are still higher than normal. I live in the UK, i havent heard of lyme disease, again thankyou for your reply, its really good being able to chat to other people about my symptoms.

 

Hi Sarah

I too am in the UK - and also had a weird history with this disease. (Yes my readings went down twice without treatment before some years later finally having some test results that indicated AIH). I do remember that on one occasion people came from all over the hospital to look at me because I was so yellow. Great for the ego that!

By the way 'hepatitis' means inflammation of the liver - often caused by a virus (the classic ones are A, B and C but there are others) but can be caused by an autoimmune reaction. It can get difficult as many people (even medical people) get confused with the term and think it must be caused by a virus.

The ultrasound scan will have been to rule out bile duct/gall bladder problems.

A biopsy may give a definite diagnosis (although not always) but is not a risk free procedure so it can be difficult to decide whether it warrants it. Also some docs would say that even if it is AIH you may or may not need treatment (again the treatment carries risks). As you may have gathered things are far from clear with diagnosing and treating AIH or other autoimmune liver diseases.

There is lyme disease in the UK but not much. Unless you have been out in the country in areas frequented by deer (it is their ticks that carry it) it is unlikely to be that. But it could be a reaction to meds such as antibiotics or statins.

Where do you live and where are you being treated?

By the way just to let you know that I have lived very well with AIH for many years now. I found the steroids (the initial medication) horrible (although there is a newer steroid that many docs are starting patients on that is much better) but then started on an immunosuppressant which agrees with me and I have been fine. I know via the Internet loads and loads of people with AIH and the vast majority get on very well with treatment and some are able to come off it. So if that is the final diagnosis don't panic!

Ann
PS There is some good info on the British Liver Trust website.

Hi AIHer and Sarah,

Just though I'd chime in on this one as a UK healingwell member with chronic Lyme disease and coinfections which has resulted in liver symptoms such as pale and variable stools, elevated anti smooth muscle antibodies (often associated with AIH), upper right quadrant abdo pain and elevated ALT. in my case these symptoms were primarily related to the coinfection Bartonella and have largely resolved following treatment with rifampin and clarithromycin. FYI Lyme disease is not rare in the UK, instead grossly mis and under diagnosed and I certainly wouldn't rule it out without investigating it further, especially if all other roads are inconclusive. If not Lyme other stealth infections like bartonella (or cat scratch disease) which can have far more vectors for infection can be responsible for such symptoms.

Just sayin don't rule it out IMO.

All the best to the hep forum.

Not big ones like the ticks found on dogs? Interesting.

Hugs,
Connie

Sorry if I was too dismissive about it being Lyme disease. Its just that unless you live in the country you are unlikely to get tick bites and in my experience medics in the UK are very aware of the possibility of Lyme disease (although it is much rarer here than in the US) and will test for it early if you have had tick bites and show any strange symptoms. But perhaps thats not typical!

Connie - yes the ticks here (and I assume its the same in the US) go through a number of stages and at the larva and nymph stages are really tiny. We do live in the country and have deer around and my other half has had loads of them. I have only had 3 or 4. They really do look just like tiny pinpricks but if you look carefully you can see the legs move (yuk). If they actually lock on and start 'eating' they will swell up - and thats usually what you see in dogs I think.

Carol - my first liver episode was after a bout of glandular fever (I think its called mononucleosis in the US) which is caused by the Epstein Barr virus so they just put it down to that. When it didn't resolve they tested for everything else but it then got better on its own. Who knows if that was the start or trigger for my AIH diagnosed 9 years later.

Sarah - my guess is that your doc is testing for everything under the sun. Some of the more esoteric tests do take a bit of time. Your doc in Blackburn is probably a gastro. Some gastros know a lot about liver disease - especially if they spent time as a registrar in a transplant unit - but others know less. Most consultants are very good at liaising with their local hepatologists (which are probably in Manchester or Liverpool for you) or the heps at the nearest transplant unit (probably Leeds or Birmingham for you) on difficult cases but do remember you can ask for a referral to a hep at any time.

Ann

AIHer, thanks for the tick explanation. I thought mono and Epstein-Barr were 2 different diseases.

Hugs,
Connie

Thanks, Ann! I know they used to be considered separate diseases, but I hadn't kept up to date on it.

Hugs,
Connie

Everyone who has liver disease, regardless of what kind, feels fatigued. I have hep C and have been "tired" (putting it mildly) since '91. It seems to get worse every day, no matter how much sleep I have. Thank goodness I don't have a young child, but I have a young cat which is almost the same at times!

I know you just want to know what is wrong, but it does seem like it is an autoimmune disorder. If this is the case, you can live a normal life with the correct medication.

Hugs,
Connie

Sorry to hear you are feeling rough. Can you bring the blood test forward to Monday do you think?

I confess I can't think what autoimmune tests take this long (Dany - can you?). I thought it was some of the more esoteric infections that took a long time to get results for. But it was so long ago that I was diagnosed that I can't remember all the details.

If it is an autoimmune disease then most can be controlled as Carol says. The symptoms are brought under control with a steroid - normally prednisolone here in UK (for reasons I don't understand some countries use prednisone and others prednisolone - it is almost the same and works in exactly the same way). But many docs are now starting patients with AIH on a steroid called budesonide. This seems to work just as well with far fewer side effects. So if it is AIH at the end of the day (and i know you don't know this yet) then do ask your doc about starting on budesonide.

Carol - yes I can relate to the not sleeping! When I was on pred my house was so clean it wasn't true. And I was cleaning kitchen drawers out at 2am. Hope at least it is working on the COPD.

Ann

Roux-maker, I copied and pasted your post into a new topic, as that's where it belongs as a new member. That way, more people will see it and be able to respond to you.

Hugs,
Connie