Liver Help

[BulbaGirl]

Hello everyone,

I am new to this forum, and I am looking for any insights and answers as I feel I am constantly hitting a brick wall with getting any type of answer.

I am a 34 year old female (caucasian), I am 5'4 and 12.7 stone- I could probably do with losing 2 stone but I am not significantly 'overweight'.

When I was 19 (weighing 9 stone), I had pain in my stomach, and after blood tests and ultra sounds, I was diagnosed with an inflammed Galalbladder containing 'sludge'.

They removed it (They tried Key Hole surgery, failed because my cystic duct was too small, so had to open me up).

My ALT remained high (300+) . I had a few reoccurrences of what I now refer to as 'Gallbladder pain' but this comes and goes.

When I was 22, I became pregnant, and after insane itching at week 14, I was officially diagnosed with with Obstetric Cholestasis.

My liver enzymes were 600+, even with Ursodexycholic (spelling?) acid. I was insanely itchy, pregnant, and miserable- the only thing that soothed the itching was cold baths. I did not have a nice time.

My son was born (after induction) he was healthy (thankfully!) my liver enzymes came down, but remained above normal range (100+).

I had several blood tests every 3-6 months, still high ALT's, Ultra sounds, MRI's again- no luck, they have no idea what is causing it.

Then 4 years later, another 'Gallbladder Attack'- I had a gallstone stuck in my tiny cystic duct! Removed via tube down the throat, through the cystic duct- had mild pancreatitis afterwards.

Back to the specialists, still high ALT and no idea so discharged.

In February of 2024, I had blood tests (after going to my GP about bald spots on my head).

ALT still high (257) positive ANA (this was new).

and to today, met with the Hept specialist- and he still has no idea whats causing my liver damage, or even how damaged my liver may be.

I only learned today that I have had a positive ANA before, but they don't think it is autoimmune as they did a double ANA (I think that is what he said) test and that came back negative years ago.

The Dr today said the only tests left to try and find the cause would be a density test and a liver biopsy.

Does anyone have any advice as to why this could be happening?

What happens if I have the liver biopsy and it still doesnt show the cause?

I am very frustrated with the whole thing, knowing something isn't right, no idea why, or the damage, or the long term damage.

If anyone has any advice, I would love to hear it.

Thank you x

[Lurcherliver]

hi and sorry to hear about your frustration. It can make you feel really anxious. The biopsy should tell the doctors everything they need to know to get a diagnosis. I had one 4 weeks ago and am still waiting for the results. The procedure is ok and nothing really to worry about . I would definitely push for a biopsy

[Readlots]

It might be worth ringing the BLT nurse helpline. They may be able to give you some advice. Sometimes you just have to take things one step at a time. It’s frustrating if, like me, you like to have a plan and know what comes next, but sometimes it’s a process of elimination and you can end up worrying about things unnecessarily.

[BritishLiverTrust11 Moderator]

Hello

If you are in the UK and would find it useful to talk things over, our nurse-led helpline is open Monday to Friday from 9am to 3pm on 0800 652 7330 (excluding bank holidays)

Best wishes

British Liver Trust

[Doddiedog]

The frustration struggle is real!

If it was AMA-M2 that was positive then it's a big marker for Primarily Bilary Cholangitis which is autoimmune. I thought I might have that as those areas of my bloods are still high and I'm still decompensated after a year of graft! But the consultant said all the autoimmune tests were negative, assuming AMA was included. Hopefully they find out what mine is at my t/p assessment at the start of Feb.

Waiting and not knowing isn't a fun place to be, just have to do as we are told 😭

Hope you get to speak to your specialist soon, please do let us know how you get on.

Heather