NAFLD - Any Positive Stories Would Be ... - British Liver Trust

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NAFLD - Any Positive Stories Would Be Appreciated!

19 Replies

Hello,

I was diagnosed with NAFLD a year ago after an ultrasound scan following on from high liver function blood tests. Over the last year I’ve lost 3 stone in weight, steadily and consistently, but my LFTs keep rising (all 2,3,4 and even 5 times normal in the case of my GGT!) my latest bloods this week however have stayed the same as they were when last done in September which was something - no improvement still but at least no rise! However my cholesterol is high and has increased from 5 to 6 since October, as well as all of the other lipid blood tests. I am awaiting a phone consultation in just over a week with a GP to discuss as I’m basically fed up of watching my results get worse and worse, worrying about long term damage as this has been going on for the last 12 months, whilst being told this is nothing to worry about just lose weight (I’ve read 5-10% loss in body weight should help - I’ve lost 20%), and resembling a pin cushion because every time I ask for advice or information or plan of action they just take more bloods and nothing more gets done and no further advice or support. A fibro scan was suggested at one point but apparently I don’t meet the criteria!

So I was wondering if anyone else has NAFLD and has any positive success stories? How much weight loss and how soon after losing weight was there any improvement? Any positive stories would be much appreciated, thank you!

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19 Replies
QuietButBold profile image
QuietButBold

Hello Belle92, welcome.

Your weight loss endeavour over the last year is a positive achievement in itself.

With your quest for other positive stories in mind; on The British Liver Trust website I wonder if you might have yet found "Rebecca's Story":

britishlivertrust.org.uk/in...

You have worked so hard to improve matters from your side of things. However, 1 year on, with your GP conversation next week impending, maybe it is time (before then) to check-in with The British Liver Trust Nurse-Led Helpline?:

britishlivertrust.org.uk/in...

- as much as anything; to double-check: whether their experience suggests you are on the correct referral / non-referral to an Hepatology Clinic pathway?

I believe the Helpline will likely be able to help you with proactively understanding / then planning self-advocacy of applying national guidelines as appropriate - if there were to be any doubt about your lack of referral to date - to help you know what you might decide that you want to discuss with your GP (to aid a two-way conversation).

I have used the Helpline myself - it was good to feel someone neutral and objective, yet more knowledgeable, was supporting me in my learning and thinking (it can help to instill self-confidence when interacting with subsequent Clinicians - as you can be less blind-sided by concepts / terminology / risk considerations / asserting patient preferences - as your Helpline discussion can act a sort of "practice run" for a later dialogue with Clinicians involved in supporting your liver health journey).

in reply toQuietButBold

Thank you for your helpful reply, it's much appreciated. I have been reading some of the stories on the British Liver Trust website, it's so good to read others experiences and to feel like I'm not alone in this.

Thank you for your suggestion re the nurse helpline - I will definitely give them a call - I think it would definitely help me to understand everything a bit more and help me to make the most out of my GP appointment so I know what I need to discuss and ask about, and hopefully gain more advice and understanding rather than just having blood test after blood test.

Thank you.

Sunnyskies33 profile image
Sunnyskies33

Hi. I would definitely push for the fibroscan. At this point I'd consider whether there could be other causes for those blood tests (assuming you drink no alcohol) like autoimmune liver disease, a hepatitis virus like B or C, Hemochromatosis, exposure to chemicals through work or home, as a few examples. These can be assessed through further testing. If you are in the UK, a call to the British Liver Trust nurse hotline might be very helpful. Best wishes for answers and health.

in reply toSunnyskies33

Thank you. I did have additional liver bloods done over a year ago to check - will need to confirm with my GP but I believe it was hepatitis screening and were negative. I will ask about chemical exposure but I’m not aware I’ve been exposed to anything harmful?

Thank you, I definitely think a call to the helpline next week will be beneficial.

Thanks.

Jasper05 profile image
Jasper05

Hi what reason did they give for not giving you a fibroscan what was the criteria ?

That sounds like you have just been pushed aside ask for a 2nd opinion

Good luck xx

in reply toJasper05

Apparently my blood tests aren’t high enough to suspect fibrosis? I don’t understand it myself, and yeah that’s what it feels like to me that they’ve just put it all down to weight - I’ve lost 3 stone, don’t drink alcohol or fizzy drinks etc, and have always had a balanced diet with lots of fruit and veg so surely if it was purely weight related then there would be at least some improvement in my blood tests? I did have an ultrasound a year ago but I wasn’t told anything when she scanned me and my GP diagnosed fatty liver. Hopefully this next appointment with her will be more productive!

Thank you for your reply, it’s so great to hear from others and definitely feeling less alone,

Sunnyskies33 profile image
Sunnyskies33 in reply to

I was given a fibroscan after my ultrasound (done unrelated to liver) showed fatty liver. I had normal blood tests and no liver symptoms. My fibroscan showed 7.5 kPa which is just over the upper limit of 7 for normal range. So I do indeed have a bit of scarring. My GI thinks it can resolve with weight loss and exercise which is well underway. I don't drink. I have a family history of fatty liver in non-drinkers. I am in the US and lucky to be near major teaching hospitals here.

MarkC66 profile image
MarkC66

Hi Belle92

I pay privately for an annual fibroscan.

I'm based in Leeds and get this done at Jimmy's.

The total cost is £214.

I do this for peace of mind now and to keep an eye on things.. I personally think a couple of hundred quid a year is very reasonable for this..

It might be something you want to look into.

Weight loss is good btw, and well done for achieving yours. My consultant says that overall bmi is the driving force and anything over the 'normal' range will cause fatty infiltration.. clinical obesity in general will likely be in the S2/3 range..

Best regards

Mark

in reply toMarkC66

I am so tempted to look into going private - the money is nothing compared to peace of mind and health. I am in the overweight category but because I’m only 5” tall I’ve been told not to focus too much on BMI and work on getting my weight down as much as I can and eat healthily.

Thank you for your reply, it’s so good to hear from others- definitely feeling more positive!

Sunnyskies33 profile image
Sunnyskies33 in reply toMarkC66

My gastroenterologist feels the same about BMI. I am between 26-27 now and she wants me below 25. I am also trying to lower my percent body fat with strengthening exercises. Anything to get rid of excess fat.

in reply toSunnyskies33

Definitely! Every little bit makes a difference and soon adds up doesn’t it!

Bocellilover profile image
Bocellilover

I was diagnosed with liver disease in September 2024. I was shocked snd scared, as you are. I do not drink and I eat a clean diet-Mediterranean. I also do not take any prescription medicines. My liver enzymes were elevated. (For 2 years). I finally found a gastroenterologist who did numerous tests to rule out any hepatitis or other concerns. I had gained weight after a near fatal car accident. My doctor and I came to the conclusion that my weight was the concerning factor. I was always 100 pounds to 125 pounds and I had gotten to 180 pounds. I now am at 153 pounds with 30 more to go. My liver enzymes are back to normal. But, that is not the only indication that my liver scarring is reversing. I will have another fibroscan in May. (6 months). By then I should be down more weight and we will assess where I am at that time.

I truly believe the weight loss is the key to my liver disease. My GI doctor told me that the new medicine out - Rezdiffra- could lower my scarring but that losing weight and exercising would do the same. But, as he stated, I would need to be very diligent with a plan to lose weight and exercise. I have been doing just that.

I feel you should get a Fibroscan to see just where your numbers are. I also had an MRI which showed mild scarring where the Fibroscan showed moderate.

Get all your tests, continue to lose weight by diet and exercise and monitor it closely either your doctor. I know you should be able to reverse your fatty liver by continuing your diet and exercising. Prepare meals on Sunday’s so the week is easier and manageable.

Take care of you!

in reply toBocellilover

Thank you so much for sharing your story. That’s amazing you’ve been able to get your liver enzymes back to normal and I hope your next scan goes well! I’m trying to exercise as much as I can and as a minimum daily walks but I’ve been struggling with chronic fatigue for the past two years (unsure if long Covid or liver related - it was blood tests looking into the fatigue that picked up the high lfts) so exercise isn’t easy! I agree with meal preps for sure! Batch cooking and my slow cooker and soup blender are my lifeline for healthy eating!

Thank you!

QuietButBold profile image
QuietButBold in reply to

Hidden wrote: "Batch cooking and my slow cooker and soup blender are my lifeline for healthy eating!".

I found on the (online) BBC Good Food Low-Carb Soup Recipes by Tracey Raye - several of which are labelled as "Soup Maker" and at least one as "Slow Cooker".

I have been looking out for lower carbohydrate soup recipe ideas (ideally, Soup Maker / Slow Cooker suitable). I have been testing out adaptions of some of my longterm favourite soup recipes with this in mind, plus freeze ahead friendly too).

My objective along the way; is to build up a selection of healthy, seasonal cooking, lower carbohydrate, soup recipes - suitable for blitzing for ease of use in a wide-necked thermos stainless steel food flask - for my pack lunch outside of home. Unlike many purchased soups, I find home made is the best route to avoiding too much salt too.

These 34 recipes are described as under 20 g carbohydrate per portion, which suits my requirements (excluding the serving sides suggested).

I am going to try some of these recipes - for example, I like the sound of the Soup Maker Mushroom Soup and the Soup Maker Carrot And Coriander Soup.

Sometimes, where and old favourite soup recipe used Potato to thicken / give texture - these days, I have found it can be successful to substitute the potato with some Cannellini Beans, or Butter Beans, drained and rinsed from a tin / can instead.

Bocellilover profile image
Bocellilover in reply to

Do as much as you can with exercising. Walks are good snd you do not need to go long distances at all. To be honest, my weight loss and diet did the most for me. I was not fully exercising. I wanted to see what impact the weight loss gave me. Now I have increased my exercise for next 6 months.

My advice is to stay diligent with the weight loss (food). Walk when you can.

Keep us posted on how you are doing. ❤️

Jans1953 profile image
Jans1953

I was diagnosed with NASH in 2002 ,just like you after a routine LFT test showed raised enzymes. At this point I had fibrosis in my liver confirmed by a liver biopsy. My weight at the time was 213 lbs. I drank no alcohol and all tests for liver diseases was negative. I lost weight down to about 170lbs and increased my level of exercise which improved my LFT tests. However since I was already at the fibrosis stage this could not be changed.I continued with little or no symptoms for another 16 years but eventually required a transplant in 2018.

But I guess what I'm emphasising is that even with some liver damage you can live a normal life as long as you don't do things to make it worse. I'm 6 years post-transplant now and at the age of 71, I'm enjoying life.

Good luck to you for the future.

Gardengrl profile image
Gardengrl

Hi- I am in the US and have autoimmune hepatitis and PBC overlap. Ivv B also have the beginnings of fatty liver due to 20+ years of treatment with steroids- which have saved my life. I know that your health care system is different than ours, but if you haven’t had fatty liver diagnosed by liver biopsy I would suggest you consider finding a way to pursue a doctor who would look further than they have. The rule of thumb from liver specialists I’ve seen is that biopsy is critical for accurate liver disease diagnosis. Sometimes it’s not definitive even then- but certainly can give them a better idea. It’s possible to have fatty liver disease as well as autoimmune disease as well. My mother had fatty liver for years but later was also diagnosed with autoimmune hepatitis. I imagine it must be frustrating to feel like your options are limited, but if your numbers are climbing while your weight loss is successful, I think it’s reasonable to assume they may not have the full picture. There are autoimmune blood markers they can do, but while I had positive markers for AIH that’s not enough to diagnose- and I don’t have the markers for PBC but it has been confirmed with MRCP as well as biopsy. Keep advocating for your health- the good news is that there is treatment available, but the first step is a clear diagnosis. Best wishes!

ChocSquirrel profile image
ChocSquirrel

Hiya, I had the same. Jaundice was my 1st flag in August 2022 and then bloods showing high liver enzyme levels. I had an ultrasound a few weeks later which showed gallstones. I lost 3 stone and kept my fat intake low (below 30g per day). In December 2022 I saw a Hepatobiliary consultant privately who told me my original blood tests were 'catastrophic' and 'really dire' and I should have been in front of him within 2 weeks of the blood tests. He told me I had NAFLD, inflamed liver and gallbladder disease; not only was I passing gallstones, they were getting stuck and that would lead very quickly to organ failure. Fortunately, the weight loss and very low fat diet had brought my liver enzyme levels down (and reduced the frequency of passing gallstones). By the time I had my gallbladder removed in May 2023, I had reversed my liver inflammation and the fat on it was 'no more than is typical for someone of my age living in the UK'. I've had no liver issues since then - all bloods show my liver enzymes in normal levels but I am conscious of how much fat I consume - I certainly eat less than the recommended 70g per day. It may be worth you monitoring your fat intake? You shouldn't go on a very low fat diet without medical supervision but if you are eating 70g or more per day, that may be causing an issue. Also, have they checked for gall stones. Tbh, I wasn't aware I was passing any gallstones although was aware of liver discomfort which I put down to being overweight so pain isn't necessarily an indicator.

So I recovered from NAFLD & liver inflammation.

Nutello profile image
Nutello

Hi there, your fatty liver experience sounds just like mine. I was on the keto diet for 4 years and my cholesterol gradually started to creep up during that period. My liver enzymes as well. I lost weight after my homeopath gave me some herbs to take. However despite this my enzymes remained out of the normal range even after losing weight for well over a year. I believe my high cholesterol is behind this. So I am now going back to eating complex good carbs like I used to when I never had a cholesterol or liver problem. I now have oats instead of eggs for breakfast. It’s early days but I am starting to see positive encouraging signs that my liver may be healing. I can only do bloods in a months time. Will let you know. Keto is not for everyone and I believe I was on it for too long.

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