AIH: Hi All, Didn't know where else to... - British Liver Trust

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AIH

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Hi All, Didn't know where else to go to ask for advice but I've stumbled across this site.

Basically, I was seeing a consultant who believed I had NAFLD. He did some blood tests back in 2010 which were very slightly raised. Went back this year and had the same testes repeated (Blood and Ultrasound) and all came back normal apart from elevated enzymes. He stated on his letter 3 times that of what they were reading back in 2010. The figure he gave was 193 (Not sure what unit of measurement that is.

Now he wants to discuss a liver biopsy to check for Autoimmune Hepatitis.

When I've been to see him, I've always kept some things quiet, as I didn't think they'd have anything to do with my Liver and that I'd just need to see a GP at some point (Which I never got round to doing)

- Blood in Stool every other week

- Rash all over body (With Whiteheads)

- Unbelievably itching legs (Only after ive had a shower in the morning for about an hour).

Will any of this be related? How bad is the reading of 193?

I really have no idea, and no one that I can really ask for help/advice other than the consultant, but that appointment isnt for another 3 months.

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AyrshireK profile image
AyrshireK

Hi Jipper, can I suggest you another group where there are far more AIH sufferers from around the world and they can share their advice and experiences with you.

They are on Facebook at AIHorgUK and have a separate support website and forum at :- autoimmunehepatitis.org.uk/ They are a brilliant and supportive bunch and have a wealth of personal experience on the condition, the tests and the treatments & all are going through the AIH journey too. They also arrange regular get togethers and an annual 'conference/seminar' where leading doctors in the AIH field have presented sessions.

Wishing you all the very best,

Katie

p.s. my hubby has chronic cirrhosis which has been put down to AIH - his though had been and gone, doing its damage before he even knew he was poorly. Good thing with AIH is that once they've firmly established that's what it is and the correct medication balance for you then it can be somewhat controlled.

elevated enzymes means the Liver is being damaged. It is being inflamed and Liver cells are being destroyed, they then leak into the blood and the blood tests pick them up.

With fatty liver the Liver fills with fat slowly and swells, this causes the leaking enzymes. AIH is where the body is attacking its own Liver, again cells are destroyed and leak into the blood.

What he is trying to do is to find the cause, if the cause is stopped them the Liver can repair itself over time.

Bolly profile image
Bolly

The blood in your stool could be something straightforward like piles/haemorrhoids or it could be something sinister like bowel cancer. I'm guessing you know this already but like many people are probably frightened by thoughts of 'what if' its the worse case scenario. The reason docs want people to go to them as soon as something like this happens is that the earlier the diagnosis the earlier anything sinister can be dealt with. I'm afraid you have to pluck up the courage, go back to your GP and tell them about the blood. Hopefully its something really simple and easily dealt with, but you wont know until you get it checked.

Its not that likely to be anything to do with your liver, unless you have very advanced liver disease.

Itchy legs, - gosh this could be so many things, from an allergy to your shower products, to eczema, to a skin infection, to dermatitis etc etc. Again unlikely to be liver related unless it was over more of your body and didnt come and go with showering. Again, it cant be diagnosed and dealt with until you go ask.

The rash could be connected to your itchy legs, rashes are notoriously difficult to diagnose without the rest of the patients medical history - go to your GP.

Is the 193 one of your liver enzymes, ie ALT (Alanine transaminase) in which case yes its high as the upper end of normal is around 50. Or is it GGT in which case yes its high as normal range is up to 51 I think.

How many other tests for AIH has the consultant done? He should have tested your iGg and your ANA or SMA before going to a biopsy which is invasive and not without risk.

in reply to Bolly

Hi thanks for the reply. I'll go to the GP about the rest. And yeah it's the ALT according to his letter. I'm not sure what other tests have been done but I had the ALT tested back in 2010 and it was 60 odd. He says that it's 3 times more than what it was previous.

Bolly profile image
Bolly

They dont usually test ALT in isolation. Usually the blood sample is measured for levels of ALP, albumin and bilirubin at the same time as it gives a bigger picture of what might be going on. A raised ALT like yours indicates inflammation in your liver, which over time, whatever the cause, will lead to fibrosis and then cirrhosis. If its NAFLD that is causing the inflammation then you should have been doing something about it back in 2010 and from then on. Dont drink, that is the easiest thing to do quickly to start giving your liver TLC. Dont smoke, lose weight if you are overweight, improve your nutrition.

Read up on the condition britishlivertrust.org.uk/li... and then act.

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