Stage 3 liver disease : I have been... - British Liver Trust

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Stage 3 liver disease

Researchfreak profile image

I have been diagnosed with stage 3 liver fibrosis non smoker or drinker. Also have Barrett’s oesophagus with gave. Not overweight and female. Just in shock . Any advice

19 Replies
Trust9 profile image
Trust9Administrator

I wonder if the doctors have identified what has caused your fibrosis?

It would be helpful to point you in the right direction for information.

There is lots of info on our website.

britishlivertrust.org.uk/

Trust9

Almost all diagnosis is arrived at by ruling out what is not the cause of your fibrosis. So, firstly they can rule out alcohol as being the culprit. Other things to rule out might be to see if there are any of medications you might be taking, which can be rather toxic for the liver, long term paracetamol or ibuprofen can cause issues.

You may at some point need to have a liver biopsy carried out, this is so they can see at the cellular level if there is anything untowards going on.

Try and remain positive, it is better that they have identified an issue now, rather than further down the line when more liver damage could have occured.

Throw the problem back at your GP if need be. "This is what's wrong, where do we go from here?" Should be the next question.

Good luck

Richard.

Have most common fibrosis reasons been excluded by doctors? Aih, PSC, Wilson, HCV, HBV, hemochromatosis?

Going to see dr today armed with questions. Sorry I don’t know what Aih PSC ETC means new to all of this will have to look it up. Thanks for reply

They really need to identify what is causing your liver to become fibrotic so that steps can be taken to slow, stop or reverse the condition before it gets worse.

There are lots of reasons a liver can become damaged in the absence of booze.

My t-total husband has cirrhosis due to auto immune hepatitis (AIH as referred to above). There are other auto immune conditions that can affect the liver such as PSC (Primary Sclerosing Cholangitis) and PBC (Primary Biliary Cholangitis). Some of these may be picked up with antibody testing and/or liver biopsy.

During hubbies early investigations as to why he had liver damage doctor said he could still potentially have NAFLD - Non Alcohol Related Fatty Liver Disease even though he was in the doctors words "Built like a racing snake!".

There are viral conditions like the viral hepatitis's - A, B, C, E. These can usually be tested for by blood test.

There are also genetic and hereditory conditions and more - Wilson's Disease, Genetic Haemachromatosis and others can be tested for.

If you arn't already being seen by a liver specialist I would seek referral so they can get to bottom of this and get you on some treatment plan before it progresses.

All the best,

Katie

Thank you very much very informative.

Just been to see gastro Dr was very dismissive and had no idea why I had liver damage said I could go on for decades.he did not think 12.7 kPa reading was bad. He actually went poofh

I hope you had some tests to rule out some dieases. If not I would see some hepatologist. Your fibroscan result is the only indication of fibrosis?

Kakey profile image
Kakey in reply to Researchfreak

That's not good enough, I'm sorry to say. The reason for your fibrosis needs to be identified, so it can be dealt with. In a vaguely similar situation I went back to my GP, as I was getting nowhere with the GI, and I was re-referred.

That's a ridiculous response you've had from the GI doctor - firstly because without knowing what has caused your liver to score 12.7 kPa he can't tell that is is F3 - if for example it was NAFLD a score over twelve could actually reflect F4/cirrhosis. Different underlying illnesses have different scores where they jump up the metavir/fibrosity scale.

The BLT currently has a campaign ongoing about early detection and intervention in liver disease because far too many folks present too late in the day to actually do much to 'save' their liver. In your case they know there is an issue so it needs dealing with.

Perhaps push your GP for a hepatology referral because this GI doctor is doing you a massive disservice.

Just to demonstrate the fibroscan score differences for different condition here is the Fibroscan score/interpretation chart.

Katie

The support on this site is unbelievable I am so grateful. I was thinking I was making a noise for nothing . Thank you so much.

Here is the fibroscan score chart for the most common liver conditions.

Fibroscan score chart for most common liver conditions.

Fibroscan score chart showing some of the auto immune and rarer conditons

Fibroscan score chart including the AI conditions.

Thank

I think I need to see someone privately. Thanks

How did you come about getting a fibroscan in the first place? Was that on the NHS? You should absolutely NOT have to go private.

You need to be seen by a hepatologist (liver specialist) because you are being fobbed off by this GI doctor.

Here's the information on patient charter and your 'rights' and medical care you should receive with a liver condition.

britishlivertrust.org.uk/li...

Also, information on the Sound the Alarm on Liver Disease Campaign currently being run by the British Liver Trust. Perhaps your GP needs to be aware of that and refer you appropriately.

britishlivertrust.org.uk/so...

Stand up for yourself and make sure you get the care you need, pointless taking this GI doctors "poofh" and ending up with cirrhosis if you can get identify the issue and get it treated before it goes that far.

Katie

I have GAVE and apparently they go hand in hand with liver disease. I’m not in a very good place at the moment. Blood transfusions , iron infusions very breathless and fatigued. My husband is literally doing everything and this is not a good feeling. So to be fobbed off today makes you question am I not so I’ll . I will pick myself up and get out my boxing gloves. Tomorrow is another day.

Hope you get some answers soon. Im also in process of diagnosis so sending you best wishes, i am struggling with it all at the moment. Have been told I have fibrosis but don’t know the level yet and waiting for my referral to go through. There is lots of information on here that is helpful. It’s reassuring to read other people’s posts on this. ☺️

It’s just a minefield and so many disabling symptoms. When you’ve got other medical conditions it overwhelms you both physically and mentally. Hope your journey is a good one. I feel lucky that I have one of the top five liver hospitals on my doorstep.

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