Autoimmune disease?

[Farfield]

hello,

Looking for advice/reassurance just need somewhere to unload really.

It all started off with upper right sided abdominal pain which took me to the doctors back in February. Dull ache burning sensation not unbearable but I’m aware of the pain. Ultrasound scan on upper abdo normal. Bloods showed mild elevated enzymes (ALP , AST , ALT ). Dr then ordered further bloods to rule out hepatitis auto immune diseases etc. All normal except one of my autoimmune bloods has come back positive.

Hep-2 cell autoantibody - positive (potentially abnormal) ?!!

Dr not helpful and almost felt like I was a nuisance to be honest.

I am awaiting referral to the gastro team but this is a 5+ month potential wait. Have been waiting since April so far. I have two young children and I’m terrified I have an autoimmune disease and I’m just sat here with no treatment potentially getting worse? Or am I jumping ahead slightly? I still have abdominal pain maybe slightly worse no other symptoms at present.

Anyone else had a similar situation?

[AyrshireK]

How many 'out of range' sets of bloods have you had? Commonly you'd have the blood tests repeated after a few weeks to see if this was a blip or indeed whether there is a pattern of ongoing derangement which would then require follow up investigations.

I think before you edited your post that bloods weren't particularly scary high - they can go into their hundreds or even thousands before they start doing damage and as you've nothing obvious just now the wait time shouldn't cause you any issue.

The liver itself has no pain receptors so technically you can't have liver pain. The liver though is contained in a capsule called the glisson's capsule and sometimes if the liver is particularly inflamed or enlarged it can put pressure on this and it can be niggly. You are obviously now mentally aware of them investigating liver issues which is potentially why you are more focussed and aware of a niggle - try and take your mind off this and hopefully you'll be less aware of it. It's amazing how the mind can trick symptoms into being when you are focussed on it.

I take it they investigated whether you had potential gall stones, this is the most common cause of pain in that area rather than automatically jumping to the conclusion of liver disease - although having gall stones can also elevate liver blood numbers.

More tests will be needed to establish whether the potentially abnormal antibody has any relevance in what is going on with your liver bloods - you can have antibody markers without any liver issue and vice versa have auto immune liver issue without the markers. It's what makes diagnosing these conditions a bit of a prolonged effort - lots of pieces of a jigsaw puzzle (lots of tests) need to come together to confirm a diagnosis.

Hopefully you don't have too long to wait to get to see hepatology and get more of these tests rolling. I would be reassured at the moment that your liver isn't showing signs of damage based on your scan, bloods are only mildly elevated so hopefully they will get this all under control for you very soon. You arn't going to go from zero to irreversible damage in the space of a few months when your bloods are only mildly elevated.

Do all you can to cut out any other challenges to your liver in the interim so it isn't having to deal with too many risk factors at once i.e. cut out any alcohol, fatty foods, eat a good balanced diet, potentially increase exercise etc.

Katie

[Farfield in reply to AyrshireK]

Thank you so much for your reply I really appreciate it! I deleted the numbers but I will add them to this.

My bloods were repeated and had increased.. Although the ALT has gone up and down again hoping that’s a positive.

These are over a couple of months

ALK 154 then 172

ALT 43 then 68 then 56

AST 43

I had a baby 7 months ago and have had this on going problem ever since. LFTs all normal end of last year (normal after giving birth)

They are going to repeat them again in 6 weeks as I feel I’m just sort of sat waiting to see the hep consultant.

Gallstones ruled out on ultrasound and liver looked normal which is great and they keep referring to this and felt more positive until I got this autoantibody result this has thrown me into a bit of a spiral (although pain still there).

I am reasonably fit (attend the gym) and healthy I’d say don’t get me wrong I do love a bit of chocolate!

Really appreciate your positive reply thank you for taking the time to respond 😊.