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British Liver Trust
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HELP! Please!

Can anyone help me: I'm 36, normal body weight, fitness, eat well etc. I had a problem early last year and jaundice and alcoholic hepatits. after stopping drinking and some prednisolone and b vits etc I got an ultrasound saying I had a little bit of fatty liver and although my biopsy was to rule out autoimmune hepatitis which it did I thought I was ok. I had a blip with drinking this summer but have stopped completely and all my LFTs are normal now.

I was just chasing up paperwork about my biopsy and although they were not supposed to test for it at the time, the medical secretary just told me on the phone that it says I have 'ESTABLISHED CIRRHOSIS'!!!! BUT I have normal LFTs!

HELP! The consultant is going to call me when he is back from his holidays but I am like major panic stations here. Am I going to die? Please help :-(

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BLT have a leaflet on blood tests and what they mean. They have a few others that may be useful to you too, so the link below takes you to the page where you can download from.

britishlivertrust.org.uk/pu...

It is possible to have cirrhosis and normal Liver Function Tests (LFTs). The LFTs your GP generally does, ALT/ALP (occasionally AST/GGT) , detect enzymes produced in the liver when damage is occurring or has recently occurred. If you have stopped drinking then what is probably happening is that you have stopped actively causing injury to your liver. No active damage = no enzymes = normal LFTs. Basically, you have taken the first steps to ensure that your cirrhosis doesn't continue to progress to a stage where your liver no longer functions.

The liver is pretty resilient and it can function pretty well even with quite a bit of damage, so the fact you have cirrhosis shouldn't necessarily mean that you will progress to a stage where it no longer functions and you will need a transplant. Stop damaging it and it will be quite happy to tick along minding its own business for the rest of your life.

The fact that you have cirrhosis should though be a warning. When you see the consultant he/she will probably tell you to stop drinking alcohol full stop. As you've done that already you're ahead of the game. DO NOT start again. Your future is entirely in your hands here.

Your consultant may already have done other tests too that look at how well the liver is actually functioning, some of these come in the CBC (Complete Blood Count) and the U&Es (Urea and Electrolites) tests. They may also have done some immunology work too, given the autoimmune hepatitis suspicions. All of which will paint a picture, together with any symptoms you have, of how your liver is working.

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Thats fantastic help!!! I have potassium which is 3.0 now, is that my liver?

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I couldn't really say. It may be normal for the lab that did the test as each have their own reference ranges. Electrolyte imbalances can result from cirrhosis, but can also result from many many other things so i wouldn't jump to any conclusions. The "lab tests on line" page explaining this test doesn't even mention the liver.

Their pages relating to the potassium test:

labtestsonline.org.uk/under...

Their pages on Electrolytes:

labtestsonline.org.uk/under...

Alcohol can lower potassium, but, so can not getting enough in your diet as well as many other things.

I think we are always in danger when we do internet searches that we latch on to the worst case scenario and ignore the majority of the alternative possibilities. We go from "diagnosis by google" to "death by google", lol.

It would though be a very good question to ask of the consultant when you see him/her as to what your potassium levels mean. Indeed, they'll be happy to go through all your results with you and will highlight any that are out of range if you ask. They'll also provide better advice than any one here could as to whether you need to do anything about them. They may just be happy to monitor them, which isn't unusual either.

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Thanks, I have to go for a fibroscan, do you know what this will be or tell me after a biopsy said cirrhosis?

Doesn’t a biopsy only check a part of your liver? What are the chances and how can you get better if at all from cirrhosis? I h.just don’t know what to ask or expect

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Hello Charleeeeeee :)

The advice given above is the best. You should ask your doctor to give you an idea or at what stage the cirrhosis is. Cirrhosis is not normally reversible but if the liver suffers no further damage, it'll continue to do its work, especially if you support it by not using alcohol or unnecessary medications, with a good diet and with controlling your weight.

You really mustn't assume the worst. Many people have cirrhosis for years without any symptoms at all and they don't stop drinking which means that when they get diagnosed, they have symptoms that are life-changing.

You should focus on improving your health, looking after your liver, having a fibroscan which might give a clearer picture of how your liver is, develop a relationship with a specialist and then you get checked every few months and live your life.

Also you spoke to somebody who wasn't a clinician so you really don't know what the test shows. I think that doctors must tell you if you have cirrhosis... because it means you have to change many things.

Stay off the booze and look after yourself and have a proper chat. There are many people in this forum with cirrhosis who have lived healthy normal lives for years and who don't need a transplant.

This is your new beginning, whatever the diagnosis, not the end.

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Usually, the biopsy is the gold standard of test used to determine cirrhosis. However a fibroscan is a helpful non invasive tool to try and get a better picture of the degree of fibrosis or scarring in your liver. Yes the biopsy is only a sample, and therefore can miss areas of scarring, but it can be the most reliable way of ascertaining the cause as well as confirming it is there.

It is possible to get better from cirrhosis if the cause relates to lifestyle. You will always have scarring there. But if you stop doing the thing that causes it injury then the damage shouldn't continue to progress. I am no expert on AIH i'm afraid, so don't know what the treatment is for that, but i do believe that it can respond to treatment. AIH can though continue to progress and continue to cause damage to the liver. However, your biopsy sort of ruled that out so that should be seen as a good thing.

I think the best thing to do at this stage is have that chat with your consultant and take it from there. Whatever the diagnosis there is much that can be done to manage either its progression or its symptoms, so its not all doom and gloom.

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You have some pretty good advice there. You'd be well advised to take it.

As far as cirrhosis being reversible is concerned....

It depends on the cause and the extent. Cirrhosis is generally a description of the amount of scarring (fibrosis) of the liver. We usually use the term cirrhosis to refer to extensive levels of scarring which involve the entire liver.

It used to be thought that once a level of scarring consistent with cirrhosis was reached that the cirrhotic process was irreversible.

More recently the view is that fibrosis is a dynamic process. IF an individual can put an end to whatever is causing the fibrosis and the cirrhosis is in the earliest stages - which is not easy to tell - then over time the cirrhosis can in fact reverse as the normal healing mechanism of the liver works on the scar tissue.

After the earliest stages of cirrhosis the fibrotic material is replaced with more fibrotic material - ie scar tissue - so it is not usually the case that there is reversal of this process. That said, as long as the liver is managing to perform its functions and the cause of further fibrosis is removed it is possible to live a perfectly normal life for many years.

Best of luck.

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Thank you so much! I think (hope) its in the early stages. I’m going for a fibroscan but I don’t know what to expect in results.

What exactly is ‘many years’ is it worth me still saving my pension? I’m 36...

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Yes, I'm still paying in to mine. Actions of the government are probably more likely to affect whether you're able to draw your pension or not. The way its going we'll all probably need to live till we're 80 to draw any! But that's not an argument for here. Besides, pensions have other benefits with them so still worth having.

How many years is not a question anyone can answer i'm afraid. We're all individual. But, if you stop damaging your liver it should last as long as you do.

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Whooo, so I still have a hope of one day meeting a Mr Right, having a family and a normal life? I've felt so glum today like what's the point when I'm doomed. Especially walking round Ikea getting a Christmas tree with my mum.

I don't really think it was great to be told over the phone by the medical secretary where my old specialist worked that I have 'established cirrhosis' and that they could resend the letter to me since I have moved house and they can pass more info to my new, current GP. My current GP, who has now sent me for a fibroscan, but is not entirely sure why other than I had told him that I have a severely damaged liver and need to have ultrasounds and blood for the rest of my life and was under a specialist from gastro where I used to live...I've not spoken to anyone about this more.

Oh yeah, my currnet GP just put me on terbinafine tablets for a fungal nail infection...I did ask if they were ok for my liver but he said that since my LFTs were OK I should be. Does this sound right - are they OK?

I

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No reason why not. We're all going to pop our clogs sometime anyway, and that doesn't stop anyone else having fun and living life to the full. A disease shouldn't stop you doing that and nor should you let it. While your fit and able do whatever you want to do, just get on and do it. You cant change things on the assumption something may just happen some time. After all, that something may not actually happen and then what? What a waste that would be. Don't be a collector of regrets.

I can't advise on the terbinafine tablets i'm afraid. i've no idea what they are, lol. Read the advice leaflet you get in the pack and if any of the side affects show do what the leaflet says and speak to your GP again. You'll probably find it'll say don't take, or seek advice before taking, if you have liver disease, but i think almost all meds do, lol. Your GP will have been aware of that so don't let that put you off taking them.

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Cheers honey! I’m going to try and get an appointment tomorrow and ask. I’ll try and bear that in mind about not letting anything stop me and plan myself some wild adventures! Any recommendations??!

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Well, jumping off the side of a mountain in one of them wing suits seems quite adventurous, but that may be pushing it a bit far.

Not sure if you need another GP appointment just yet if they've already prescribed the meds. I'd only really make it if you notice some of the side effects. You'll probably only need to have one after the fibroscan results come back.

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Well I do love mountains and scrambling and hiking, so maybe bodygliding off the side of a mountain or whatever it is isn’t he next step! I’ll ask at my outdoors meetup group!

I need to see the GP to get a My fibroscan appointment hurried up so I’ll ask about those tablets anyway...😁

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Yeah love the mountains too. Can't beat a bit of hiking and scrambling in the lakes and north wales. Managed to get up a little mountain in September in N.Wales - that was 5 months post transplant so as you can see, liver disease is not an end to having fun. Just need to build up my fitness a bit more now to be able to do what i used to be able to do. I definitely do not intend to be jumping off any though, lol.

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Wow! Me too! Let me know when you are off!

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I’ve had no transplant but I’m not up to as much as I used to be, where do you live? Perhaps we could go do something gentle?

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Hi. I’m 36, was diagnosed 4 years ago with Cirrhosis of the Liver, portal Vein thrombosis & blood cancer....my LFT’s are pretty normal....13 months ago I was listed for transplant. I still work full time, drive, see my friends & family & live a pretty normal life where I can. I don’t drink nor smoke & haven’t since my diagnosis.

Please message me if I can be if any help....chelle x

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Thank you Chelle!

Ta! that is really just such a help to know its not just me! Maybe if you could tell me a bit about you that would be great xx

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Click on my name and you can see all of my posts. I was in the Royal Navy when I was diagnosed. A runner; half marathons 10k’s 5k’s very fit & healthy. But I developed a clot in my portal Vein at some point due to the blood cancer which I didn’t know I had until 4 months after finding out I had liver disease. The clot suffocated in effect my liver & I developed tumours....lots of tests & scans and here I am today. That’s pretty much been it. I just don’t exercise, I’m not in the RN however still work full time & just Live life!

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