So confused : Hi all. I posted a while... - British Liver Trust

British Liver Trust
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So confused

Est7
Est7

Hi all. I posted a while ago about my hepatologist not being able to confirm whether I have fibrosis or cirrhosis.

I have now had an MRI scan and have been told that they still don’t know but as I have 2 small varices they say it’s probable cirrhosis.

Have an appointment with hepatologist next month to talk about a liver biopsy. She doesn’t think I should have one.

I have no idea what to do, if anything.

Can I please ask for your thoughts on this?

Many thanks x

11 Replies
oldestnewest

Id probably do what the specialist says.

On the other hand i may opt for the biopsy just to be sure of what youre dealing with.

Difficult decision .

Hidden
Hidden

If they are scratching their heads I can't answer that. It seems extreme MRI Biopsy but that's maybe down to past history.

Mine was simply alcohol abuse. No acute symptoms. Ultrasound, Bloods & Fibroscan. The US was described as "no abnormal lumps or bumps." I knew my bloods were through the roof & the Fibroscan score fell into Cirrhosis catagory. Dec18 to June19 from start to finish before I was told. I dare say Bloods & Fibroscan in Apr19 the Consultant had his diagnosis. 🤔

Ps Sorry he only told me June just after the Throaty varicies Cam test which was clear. 🙄 I had to e-mail him much later in Oct to find out what stage for Insurance purposes. (Mild, compensated)👍

B3nnen2015
B3nnen2015 in reply to Hidden

Do you know if you have alcoholic fatty liver or hepatitis first before cirrhosis?

I read somwhere that >50% of people dont know they have it until they are admitted to hospital with a decompensating event or ts picked up on tests for somthing else.

Hidden
Hidden in reply to B3nnen2015

Well we did know we were drinking too much, if in denial. Mine was never described as fatty prior to. They did mention heamacromatos at one stage but then it was just lose the alcohol. Guess who didn't. 😵

Yes re your vid. Starvation diet Doc Mo called it. I thought crash diets were a no no. If ya don't eat ya don't s..1t then ya die. 🙄

B3nnen2015
B3nnen2015 in reply to Hidden

Lol, iv not heard that in years.

I trying somthing similar to that video but alot more calories so it may take longer, we will see what happens. :)

Hidden
Hidden in reply to B3nnen2015

I thought it was a joke an old friend quoted years ago. Just Googled it there now and there it is. 🤭

Hidden
Hidden in reply to B3nnen2015

Hi

I'm sorry you aren't feeling great. I would go for the biopsy. I was diagnosed with Nash in November 2016 after id had a biopsy. This was caused by meds from my drs over the years. Hope you get the right treatment soon. Pm me if you need to. This forum is fantastic, you will get loads of support on here. Xx

john110865
john110865 in reply to Hidden

Ofeckman

Question as I still have no clues as to my diagnosis.

Background.. moved to UK 2017. Reg at doc March 2017. Fatty liver diag April 2017. June cyanosis. Ecg bubble .. done by 2 morons.. I cannot rely on results, but they say it showed hps. Dec 2017 on LTOT. 3l at home. On exercise unable to meet required sats I.e. 10L sats 80% still. Given 6 months in late 2018 with ukmeld of 61. Still here, still strong ...ish. Can we chat as insurance co not paying out on terminal illness I.e. 12 months to live is not being paid! My e mail is best on John at johns page dot co dot uk. Appreciate your views and experience. John.

Hidden
Hidden in reply to john110865

Reply via PM. 🤫

Biopsy is gold standard test for diagnosing what liver disease is present, it isn't the best for staging. As a biopsy sample only gets something like 1 : 50000 of the liver, so it may show all stages of the affects, but this may not be consistent throughout the liver.

I'd go with whatever the Dr advises, its a simple procedure but it does have some risks, as does any invasive test.

You could ask for an ELF test, this is a blood test, which using an algorithm can give an accurate reading of stages (according to research).

Good luck with finding answers.

Best wishes

XWassX

Trust9
Trust9Administrator

Good morning Est7,

I have attached the link to Liver Disease Tests explained

britishlivertrust.org.uk/in...

This may help to guide your consultation.

May I also suggest that you have a full and frank conversation with your specialist and ask what the difference in the management plan would be should you choose to have/not have the biopsy?

Best wishes,

Trust9

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