Petrified of long term damage from NAFLD - British Liver Trust

British Liver Trust

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Petrified of long term damage from NAFLD

Jaygee87 profile image

Good morning all!

I just wanted some insight into my latest appointment with Hepatology which has terrified me.

I was diagnosed with fatty liver about 3 years ago due to PCOS and weight gain. All I was told was to lose some weight and nothing more, which stupidly made me think it wasn't a big deal. I have now gained even more weight and my results are even worse and now classed as severe.

I spoke to Hepatology yesterday and the consultant said he needed to take bloods to check for scarring, and if they come back bad I will need an endoscopy which is my worst fear. He scared the life out of me saying the scarring is irreversible and could go on to become cancer!

I came out an absolute wreck as I'm only 33. I now fear I'm going to die an early death because of this. When I have Google cirrihosis it comes up with terrible statistics on life expectancy.

I am on a strict diet and doing exercise but I am worried its too late now and I've damaged my liver too much.

If anyone has PCOS could you please let me know what course or action you took ?

15 Replies
Trust1 profile image
Trust1Administrator

Hi,

Firstly let me start by saying you are NOT stupid, as patients, you can only work with the information that you are given by healthcare professionals.

Hopefully with information and support you can safely lose some weight and start some gentle exercise. Have you been referred to a hospital registered dietitian?

Here is our publication on NAFLD;

britishlivertrust.org.uk/in...

NAFLD can have different stages so you are quite right to want to find out more.

NICE (The National Institute for Health and Care Excellence) have devised guidelines with the British Society of Gastroenterology (BSG) that state people diagnosed with NAFLD should have further testing to assess for their risk of fibrosis- stiffening or scarring in the liver.

The specific blood tests are Fib-4 score blood test or an Enhanced Liver Fibrosis (ELF) blood test. A specific scan called a FibroScan also estimates fibrosis. Your hepatology team will be able to advise about his.

If you are in the UK, why don't you call our nurse led helpline on 0800 652 7330 10am to 3pm, we would be happy to have a chat. Remember, deal in specific facts, everyone is different, and don't google! :)

You are not alone. Keep us all posted.

Warm wishes

Trust1

Jaygee87 profile image
Jaygee87 in reply to Trust1

Thank you for replying. No not been referred to a dietician at all.

I am waiting on some more bloods but they haven't mentioned a fibro scan, only endoscopy which scares the life out of me

I am hoping to hear off them soon and in the mean time I am taking as many steps as possible with this. I just wish I had done something sooner.

Trust1 profile image
Trust1Administrator in reply to Jaygee87

Do call us for a chat on the helpline and we can talk through your concerns.

Obviously PCOS doesn't help your situation but if you can follow a much better diet and do more exercise you will help your liver a lot.Even early cirrhosis is now deemed reversible so even if results have gone the wrong way it doesn't have to be all doom and gloom, if you can get a grip on things you can slow/stop progression and even reverse damage.

It's such a pity they didn't discuss things better 3 years back for you but the advise was there about loosing weight. Sadly some doctors still brush NAFLD off a bit too lightly when it is now the fastest growing cause of liver damage in the Western World and has already over taken alcohol as the main cause of liver disease in the USA with the UK not to far behind seeing the same.

If your results come back showing advanced liver disease even that isn't the end of the world. If you can slow or stop progression even a damaged liver can carry on doing most of its 500 functions for many years. (My husband was diagnosed with decompensated cirrhosis in April 2012 due to an auto immune condition and all these years later he is stable and still living the best life he can - ok I won't say he's 100% well but nor is he knocking on deaths door).

Scarred liver tissue can slightly increase chances of developing liver cancer BUT protocol for the management and monitoring of patients with cirrhosis is that they are scanned every 6 months to check for changes, such regular and routine monitoring should pick up changes early enough for many successful treatment options to be used to get rid of tumours.

Leave Dr Google alone, you are not at deaths door , you don't describe any advanced symptoms, you have it in your power to make some differences to your lifestyle and help prolong the life of your liver. My hubbies consultant has patients on his books who have had a diagnosis of cirrhosis for 20+ years and are still going strong.

Have a read at the BLT page on NAFLD, they also have one on cirrhosis if you feel you want advice on that, in fact the whole BLT website is a goldmine of useful information.

Get the tests doctor wants to do and take it from there, but, do make some lifestyle changes and get on top of this thing a.s.a.p.

britishlivertrust.org.uk/in...

britishlivertrust.org.uk/in...

Katie

Jaygee87 profile image
Jaygee87 in reply to AyrshireK

Thank you for your reply.

I am glad to hear your husband is doing well! When I looked on Google about cirrhosis it said 2 years life expectancy and I nearly cried!

I am praying that I can do as much as possible to make my liver as healthy as I can but I'm worried that its too late now.

AyrshireK profile image
AyrshireK in reply to Jaygee87

It's never too late, even with cirrhosis you can make significant improvements - my hubby was listed for transplant in 2014 but because his condition stabilized he was delisted after 10 months and in 2021 is still here, going strong, walking daily (yesterday we did 4 miles together).You can always improve things.

Leave Dr Google alone, it will always convince you of worst case scenario, a 2 year life expectancy may be the case if you were full of ascites and bleeding internally, bright yellow and ill. But even from that stage with life changes and/or treatment that can be extended.

Do what you can now with lifestyle changes and even by the time you get your follow up tests results might be on the better side of things.

Katie

Please contact the British liver trust their advice will be so helpful.

Four years ago I was diagnosed with serious NASH due to obesity & a v unhealthy diet dominated by sugar.

Had a fibroscan & a liver biopsy & I was told I could turn it around but I had to make changes.

I have just had a fibroscan & bloods & my liver function is normal & my liver healthy.

I lost 6 stone cut sugar out of my diet & I exercise 3 - 4 times a week & due to the weight loss I’m much more mobile.

I was so depressed & frightened but with support & good advice I haven’t been this well in decades.

Please get good clear informed advice about the way to proceed. & good luck.

Jaygee87 profile image
Jaygee87 in reply to Gordes

Thank you! I am scared to death its too late to stop anything too serious but I feel like I need a confirmed diagnosis about how bad this is. How long did it take you to lose the 6 stone? I would say I need to lose 5 for sure.

Gordes profile image
Gordes in reply to Jaygee87

The first 3 stone fell off in 6 months because I stopped all sugar cold turkey. The last 3 were harder work & frankly the healthier I got the more tempted I was to cheat a bit with sugar. I think they took nearly 2 years but I got much fitter during that time swimming regularly, hydrotherapy & Pilates. Lock down has been hard as it’s difficult to be active.

I can’t comment on your exact medical condition but I know my liver was in trouble & I felt so ill & I couldn’t believe that I could ever be well again - although my liver specialist said very clearly to me you’re at a cross road keep living like you are & you’ll get cirrhosis change & you could lead a normal life.

Hi. So sorry to hear your news. Like you I have PCOS amongst many other things. I was told I had a bit of fat on my liver several times over the last 16 years whilst being scanned for other things, but never had a formal diagnosis. I am also overweight and due to other conditions I have very limited mobility making weightless even harder. (Also on several meds that cause weight gain!). However I saw a gastroenterologist last year due to suspected gallbladder problems, she said she would like to do a fibroscan before discharging me completely as all symptoms had now cleared. Long story short, at fibroscan my fatty score was off the chart and I have cirrhosis. I then had to wait 2 months for an appt with consultant to discuss he results. In that time I researched and found recommendations for diet and have followed it and have lost 2.5 stone since diagnosis I July. My Dr said if I continue like that it will help to stabilise the liver. Like you I am waiting for endoscopy (never look forward to them) and have to have annual cancer check. I have come to terms with it now although it took me a couple of weeks to get my head around it. Just remember you are not alone and there are things you can do to help. I just wish more of a deal had been made about the nafld rather than just being told that 'you've got fat on the liver but we'd expect that given your weight, you could do with losing some but we know that will be really hard for you). I would lose some put on some, you know how ot goes but stupidly didn't realise the seriousness of it. Take care and stay safe.

Jaygee87 profile image
Jaygee87 in reply to sheperd86

I cant believe that for 16 years they didn't look any further into it! Have your bloods got any better since losing weight? Can I ask how bad the cirrihosis is?

sheperd86 profile image
sheperd86 in reply to Jaygee87

They've said at the moment it is compensated but I get the impression it is very close to tipping over. I think the only reason it was checked was because of one of the meds I have been on long term. That has now had to be changed. I have bloods every 4 weeks for another condition and my alt/lst is always borderline but gp said hospital wouldn't accept referral unless over 100 and mine would go up to 90+ then back down etc. The diagnosis came as a huge shock and I am hoping the weight loss will help. My levels are still higher than normal but not by much so hoping it will stabilise.

Jaygee87 profile image
Jaygee87 in reply to sheperd86

I'm really sorry to hear this. I'm only really starting to learn how severe this all is. When I was told fatty liver my GP didn't really say much at all. If I had known back then how it can go I'd definitely have listened more. It is my fault but nobody ever takes the pcos serious either.

Would you become a candidate for a liver transplant ?

Hey :)

I don't have any advice that hasn't already been given, but just wanted to let you know I'm hoping for the best outcome for you.

Dr Google has a way of condemning us all to an early exit from this world, but that's a lot less likely than it would have you believe.

Well done on making lifestyle changes. Keep going with that.

I was told two years ago that I had a fatty liver. I also had the "Just eat more healthy and move more, it's really common nowadays". That was the extent of advice or care my GP gave the whole situation. I have PCOS too, and had no clue it was risk factor for fatty liver. My GP didn't even consider it. I have slightly raised cholesterol too, but again, no reason for concern in their eyes.

Like you, I thought it wasn't that big of a deal and didn't really commit to making changes. I tried to diet a few times, but would put the weight back on if I was stressed. In all honesty, I sometimes forgot I had a fatty liver.

On top of that, I took paracetamol daily for chronic pain and migraines, and I'm pretty sure I wasn't doing my liver any favours with that either. I'm pretty terrified that they have damaged it extensively now, despite my GP saying it's perfectly safe.

The more posts I read on here, the more it seems that doctors really need to improve their approach to informing patients on what a NA fatty liver can progress to. They do it for heart disease, why not the organ that has 500 functions?

I've recently started feeling more symptoms, and am convinced I've tipped the scale from fatty liver to cirrhosis. I too have completely changed my lifestyle just from sheer panic. Waiting on a GP appointment to get the ball rolling on seeing the state of my liver two years later.

One thing my extensive panic reading has shown me is that the liver is an amazing organ. It really really really tries to regenerate wherever possible. I know when extensive scarring is in place, it's there for good, but even the early stages of scarring can potentially be reversed or halted. So, if you give the liver what it needs, you can slow down any further damage, or if you're at an earlier stage, stop it altogether.

Try not to be afraid of the information the hepatologist gives you. It doesn't mean they are sure this will happen to you. The good thing is that they are being really thorough, and you'll know exactly where you stand once they carry out their tests.

I've read encouraging stories on here where people were sure they had gone too far but it turned out to be something they could address and reverse :) Even people with advanced disease have seen results with lifestyle change.

PCOS and diet is such a struggle, I'm sure you can empathise. I'm currently eating a mainly plant-based diet with some chicken and fish. Small amounts of complex carbs like brown rice and quinoa are helping with the energy crashes that PCOS can sometimes bring. I've reduced sugar A LOT. That seems to be the culprit for most things, and it really messes with PCOS. Any sugar I do eat is from small amounts of fruits like berries, bananas, and apples.

Staying hydrated is really important too, it really helps your metabolism as you lose weight. I try to aim for about about 2 litres daily, in small amounts during the whole day.

I hope your tests go well. Keep us posted!

🤍

I’m here in the US with cirrhosis from another problem. Right sided heart failure has damaged my liver. Never knew it could happen but it does. It’s called cardiac cirrhosis. My heart is literally killing my liver. But I have lost weight...35 pounds and that has helped me feel better. I’ve had two endoscopies and here, the drs give you a light anesthetic and you don’t feel or remember anything. Just like taking a nice nap. The hard part for me with all of this waiting for results. Praying you do well. The biggest hurdle is learning what you need to do, asking questions and then trying hard to follow your drs’ advice. It seems you are well on your way!

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