Autoimmune Hep

[se31]

I am really concerned now...

Originally I had an elevated ALT of 80.  Was tested for ANA and SMA and have come back positive for ANA.  SMA was negative.

Have now been referred to a liver specialist.

What can I expect?

[Bolly]

Hopefully a much more thorough investigation than anything your GP would be able to do.

[se31]

if i have tested positive for ANA i would imagine that means I have AIH??

[Bolly in reply to se31]

Not necessarily.  Most hepatologists would first want to rule out all other possible causes, as AIH is rare - only 1 in 17,000 of the UK population.  A positive ANA test means autoantibodies are present. By itself, a positive ANA test does not indicate the presence of an autoimmune disease or the need for therapy.  

Most hepatologists will run the following checks/tests before making a possible/probable or definite diagnosis of AIH

An ALT of greater than 3x normal

iGg globulins of more than x2 normal

An ANA of more than 1:80

Negative for viral hepatitis

Postive for SLA antibodies

Good response to steroids

Biopsy showing interface hepatitis or other definite tissue signs of AIH

Without most of these tests coming back diagnostic for AIH you should not start any therapy as there could be other reasons for your blood results.

[se31 in reply to Bolly]

Thanks for the reply Bolly...

I was tested for autoimmune hepatitis so I presume they would have checked for all of these?  That said my only positive result was ANA.

Out of interest I was taking Doxyciline for about 8 weeks. This is a  tetracycline antibiotic and I heard this can impact ANA and ALT levels (mine was 80). Anyone know or heard of this?

[Bolly in reply to se31]

There is no single blood test for AIH, so a GP would be unlikely to 'test you for AIH' thoroughly, thats why you are being referred to a hepatologist.  Without knowing what the other tests were that came back negative I cant say what they checked or what it means.

Lots of things, even exercise, can elevate ALT levels, and yes antibiotics probably would.

Not sure about the ANA though - a positive for this tends to mean that your immune system is responding incorrectly and attacking your own body tissue somewhere, but its not specific to AIH, so people with other autoimmune conditions (Lupus, Sjorgens etc) have a positive result too.  Thats why for AIH you have to score positive for lots of other things too.

[se31 in reply to Bolly]

Ok cool cheers Bolly

I know ten doc wrote in the blood test form that he wanted anti immune tests done so ANA, SMA and I think ESR.  Don't know if he tested for iGg and SLA but would have hoped he did.  Also tested me for other types of hep and all came back negative.

Annoyingly the doctor reception phoned to say there was nothing to worry about and booked me an appointment for a weeks time!!  It was only when I phone to speak to a doc that he hold me I was positive for ANA.  I sound have thought that was quite serious but hey..who am I to say

I will prob just pay for a fibroscan

[Bolly]

ESR is a quick cheap, non-specific test that has been used for many years to help diagnose conditions associated with acute and chronic inflammation.  I think it is elevated in conditions such as polymyalgia and fibromyalgia which mimic AIH in the fatigue/pain symptoms.  

The SMA is more specific of AIH than the ANA, so if yours came back negative that means its less likely to be AIH, unless of course all the other tests including a tissue biopsy confirm that it is.

Its just a massive jigsaw puzzle, and the hepatologist will be best placed to confirm or refute a diagnosis.  I know you have a parent with AIH and that is causing you extra worry, but its not often passed down parent to child.  However, having a relative with an autoimmune condition, any autoimmune condition, does make you more susceptible to autoimmune conditions yourself.  There are well over 100 autoimmune conditions, which is why its a slow and painstaking process using medical history, symptoms, test results, etc etc to get to the correct answer.

[se31 in reply to Bolly]

Thanks Bolly.... Really appreciate your time responding. 

[Bolly in reply to se31]

Oh, and a Fibroscan wont diagnose the cause, just assess the stiffness of your liver - and with some machines it can measure fat in the liver too.

[se31 in reply to Bolly]

Hey Bolly... I know you probably get  a lot of panicky people on here so I don't want to go on too much.  

Just thinking thought that if I do have AIH (apart from the worry of having it) I have also been a regular drinker (not a heavy drinker but most weekend and glass or two in the week.  Do you recon i would have had some serious symptoms if I was drinking while having AIH?

[Bolly in reply to se31]

What symptoms were you suspecting?  A combination of AIH and alcohol would put more stress on your liver.  But we have members on here with experience of being tee-total all their lives and yet still being assessed for transplant!  

With or without any liver condition, there is nothing beneficial to your liver in an alcoholic drink.

[se31 in reply to Bolly]

just worrying probably .... i don't have any symptoms but thought that if I was drinking and had AIH then it would have made me ill.

[Bolly in reply to se31]

If you had acute liver inflammation at any point and were drinking at the same time, i would suspect the alcohol would make you feel a bit nauseous or your liver would let you know in some way that it didnt like the drinking.  

However people can have liver disease (Hep C or autoimmune or whatever) without knowing and drink for years and years before the liver starts to find it difficult to compensate, that's why they call it the 'silent killer' as our liver is capable of taking quite a beating before it holds up its hands and says 'HELP'.

[se31 in reply to Bolly]

yeah I guess there are symptoms that you wouldn't even know were related  to liver damage.... 

[Bolly in reply to se31]

Thats why we go to hepatologists in preference to GPs as they have specialised in the hepatobiliary system.  GPs get very little time on the liver and biliary system during their training, they have to cover so much at a more 'general' level.

If you google random symptoms, like 'fatigue' or 'nausea' you will come up with a multitude of diseases that has you at deaths door as of this morning.  None of us on here are medically trained, we can only comment on what we have experienced as patients.

[se31 in reply to Bolly]

yeah I just wish I could know if I have it or not  I am symptom free and don't have any physical signs so hoping I am ok.  The GP doesnt have any urgency ether which dent help.

[Bolly in reply to se31]

The lack of urgency is probably because none of your results or your presentation are screaming out 'URGENT', maybe just 'investigate further'.  .... which i think they are, albeit slowly....

Try to be a patient patient, difficult i know, but dont let your frustrations affect any relationship with your medics or they may consider you 'difficult' and smile at you less

[se31 in reply to Bolly]

yeah - I would have thought a + ANA would have done but clearly not.  I guess I haven't seen the complete results and they will put it into context along with the physical exam.

[Bolly in reply to se31]

A ++ ANA with something like acute jaundice would push you up the queue.  But not a pretty much feeling not too bad ++ ANA.  Hang in there. x

[Newengland01]

Hello, I have AIH and was diagnosed 4yrs ago. I had a +Ana and +muscle smooth. Although in the beginning the Ams was low and still is.AIH usually exists with another autoimmune disorder which I do not have any other disorder. My treatment started with Predisone but eventually I was weaned off because my doctor didn't want me long term on steroids that can cause other problems from side effects. I started Imuran with a small dose of Predisone and eventually Imuran took over. I have been on Imuran for 2 yrs and I am in remission as the doctor calls it. I have a tiny bit of liver scarring but in 4 yrs it has stayed the same. I get ultrasounds every 6 months to make sure all is good and blood tests every 4 months to check liver enzymes and so forth are in normal range. No one in my family has ever had autoimmune or liver problems. So I will never know how or why. That drove me crazy for the first year. But the key is to catch AIH early and I think if you do have AIH it is very early as mine was. Just FYI AIH has nothing to do with Hepatitis a,b, or c. In AIH it refers to unspecified liver inflammation from the bodies immune system. Hope this helps.