Hey everyone, I'm new here and currently extremely worried about the state of my liver.
There seems to be a common thread among posts here about GP's not really giving patients any guidance on what to do when you have a fatty liver. I can completely empathise with them, because I got the exact same "Loads of people have it now, just try and be healthier"
So two years ago, an US showed I had a fatty liver (and a slightly dilated bile duct which they decided was of no clinical significance). Normal LFT. I initially had the ultrasound because of RUQ pain and they were thinking gallstones.
They kept telling me to limit how much I drink even though I insisted I don't touch alcohol. I could probably count on two hands the number of drinks I've had in my 35 years of life on this earth.
I am overweight though, so my GP finally decided it was due to that and not drinking. My GP said lots of people my age who have sedentary jobs have some fat on their liver. I also have PCOS which can contribute to a fatty liver. He acted like the fatty liver was no big deal and that I just needed to make smarter choices. No pointers as to what kind of choices they would be (but I get that we make our own choices). I tried, but not hard, and I didn't lose much weight. My fault, I know. I thought it was just something I could address slowly. I wish I'd known fatty liver can actually progress into a more serious disease. I wasn't informed of that at ANY point.
This brings me to the second concern. So, I have suffered from chronic migraines for about a decade, and was always told to take paracetamol. In recent years, I developed bulging discs in my neck due to joint hypermobility, so I started to take painkillers almost daily. Looking back, I've probably ingested an average 1-2g of paracetamol daily (keeping to recommended dosage intervals of course).
I expressed my concern to my GP about the toxic effects it might have on an already annoyed liver and he simply shook his head and said "no, that's a different kind of damage, it's not harmful if you don't take too much in a day" .....surely longterm use is NOT good for a fatty liver?
So here I am now, with my nerves in shreds, because I'm convinced I've pushed things too far because I trusted my doctor. I stopped taking paracetemol last week, and my migraines and neck pain are horrific, but I'm terrified they're only causing my liver to fail, or that I already have cirrhosis. I've also started eating healthy again and am starting to lose weight. I'm desperately hoping it's not too late for me.
In the past week, I seem to have a trace of bilirubin in my urine (I use at home dipstick to check it because I'm super anxious about it) but only in the morning when my pee is quite dehydrated. Once I drink water it returns to a clear colour and a negative test. Has anybody else had this experience for it to turn out not to be bilirubin? I know urine tests can be unreliable.
I've still got the on and off RUQ pain and random bouts of fatigue.
I would love some reassurance or advice right now if anybody feels like they can tolerate my wall of text or answer any of my questions!
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BagOfNerves
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Continue to make positive changes to your lifestyle in line with the guidance for NAFLD at:- britishlivertrust.org.uk/in...
I'd be tempted to go back to GP and discuss your concerns, have some up to date blood tests and perhaps ask for a scan of your liver to check if the condition has progressed. There are certainly blood tests like the ELF test (Enhanced Liver Fibrosis test) which can help ascertain if there is any fibrosis in your liver. A fibroscan if it is available to you can establish if you have fibrosis and what fat content is in your liver.
Thanks for your reply and the helpful info I really appreciate you taking the time to read through my babble!
With the pandemic in full swing, it's been pretty hard to get an appointment with my doctor, but I'm definitely going to follow up. I can only hope that things haven't progressed. I've been crying myself to sleep and annoying the life out of my boyfriend about this whole thing for the past week. I'm convinced I'm going to be that person who was "fine-ish" two years ago and is now in end-stage liver disease.
It's a scary place to be when you don't know if the advice you followed was to your detriment. I've also been treated as "just anxious" whenever I've gone to doctors about my concerns, so I have a hard time drumming up the mental energy to communicate with them. Not to paint all doctors with the same brush, I think the NHS is fantastic.
I keep seeing conflicting information on whether paracetamol would do any harm, even long-term use, but I've just gone cold turkey on it in case I'm one of the unlucky ones. I really wish there was clearer information out there about it. It's all so confusing when it comes to liver health.
Fortunately, healthy eating is easy for me. I used to be a bit of a health nut in my early 20's and I can quickly slip back into that mode. I just wish I hadn't been so lazy the past two years.
I understand the liver is a robust organ, so it likes to keep quiet until everything reaches a tipping point. A bit like myself haha.
I would definitely speak to your dr about investigating further. Like you my fatty liver was picked up several years ago on a scan looking for something else. It was mentioned but nothing more. The same has happened repeatedly over the years and the most I had was well you've got a fatty liver but we already knew that. I am overweight and like you have pcos. Also due to many other problems I have a lot of mobility problems and often am in a wheelchair so exercise and weight loss is very difficult for me and some of my conditions and medications also can cause weight gain. At the beginning of last year I saw a gastroenterologist for something else and she suggested doing a fibroscan before discharging me. Because of covid it was delayed until July but then it showed my fatty liver score was at maximum and I have cirrhosis. Since then I have gone on a very strict diet according the the recommendations for liver disease and have lost 2 stone. I know I can't reverse the cirrhosis but I can at least slow its progress. Good luck to you but please get it checked
I'm really sorry to hear that it progressed for you. It must have come as such a shock. Do you know what stage your cirrhosis is at? From what I've read, it seems that early stages can be stopped from progressing if lifestyle changes are made.
Congratulations on losing 2 stone, that's such amazing progress PCOS makes it so much harder too.
I really wish doctors would be more open about the risks of having a fatty liver. I'm really sorry that you experienced the same lack of interest from your GP. Mine even said that it's such a common thing these days, they're seeing it all the time. Surely that would prompt a conversation about what to do next? Any time I pushed for more info or details, I was called anxious.
I'm kind of scared to get it checked if I'm honest, but I will. I'm seeing a lot of stories where fatty liver progressed really quickly to cirrhosis. I can't help but be angry that my doctors never had the inclination to even give me simple facts. Had I known the risks, I would have done things a lot differently. I'm hoping I haven't pushed anything too far in the past two years, but it's looking a little bleak for me, especially as I have symptoms like pain etc.
Thanks for taking the time to answer, and I hope that you have the absolute best outcome from your lifestyle changes 🤍
The consultant 6old me it is mild and compensated at the moment so hoping to keep it that way. Trying to stay positive, I have a complicated medical history and several rare conditions and it was probably a mixture of nafld and medication that caused the progression. Unfortunately this was all happening around the time covid hit and so the appt to discuss a change in meds was postponed but I contacted my consultant as soon as I'd had the fibroscan and the meds were changed. Take care and I hope you get some reassurance.
When I found out I had fatty liver I was 6 stone overweight and although my ELF score was just over limit my fibroscan was OK. I read the obesity code by Dr Jason Fung, as I have tried to lose weight for decades and nothing worked - as I am hypothyroid and never properly treated. It did work.
Also I watched the diagnosis detectives on TV, as I felt so ill and one mentions hypermobility as part of a condition, that I think can be treated.
Thanks for your reply. I'll definitely check that book out.
Glad to hear it worked for you Sounds like you're well on the way to improvement!
My hypermobility is suspected Ehlers Danlos Syndrome, but due to Covid, all investigations into that were postponed. It's hard to get a diagnosis for it, and there is no cure or treatment other than pain management, so I kind of gave up and just dealt with having it. It does mean a lot of joint pain though, and unfortunately, use of painkillers. Had I known they could propel an already fatty liver towards cirrhosis, I wouldn't have taken them. My GP kept saying since I wasn't overdosing on paracetamol, regular use was perfectly safe.
Focusing on losing weight at the moment, and so far have lost 5lbs over the past two weeks. Probably water weight, but a least it's getting things rolling. Just sticking to leafy greens, lean protein and sensible carbs. Cutting out anything processed and sugary. I'm hoping with every fiber of my being that I still "only" have a fatty liver and that losing weight will cure it. It's a little hard to find hope at the moment as I feel the odds are stacked against me.
I stopped eating fruit and sweetners etc, I think they say they can be worse. I cut out carbs and am also eating green veg mainly and in a soup - for winter, so can add in garlic, ginger etc. The book advises no carb and intermittant fasting so I cut out breakfast, so thus fasting overnight. This decreased my appetite and nothing else did. I now find as soon as I eat pasta etc I get hungry, but not if I skip it and fruit etc.
The Diagnosis Detectives is on catch up if you have it, if you google it, might tell you which episode, they test for your condition. There are only 5 episodes so one could watch them all. What I also now do whenever I research my health problem is try to see if there is an alternative approach - and maybe something else that can help with your pain. If found cutting out gluten then carbs helped me a lot. Also there is a private blood testing company that send you finger prick tests, that you can use to test your levels if you are interested? I have used them many times.
I was very petrified before my fibroscan as I had the right quadrant pain and more, but my fibroscan was low!
Oddly enough, I have ordered a private home kit test for liver health and will be sending it off shortly. As the pandemic is making everything impossible, I figure it's probably a good idea to have as much data as possible for my GP to make a decision on. Maybe if a result is slightly off, it might prompt him to look into it further. From what I can see, this home kit tests for ALT, ALP, Albumin, Bilirubin, GGT, Globulin and Total Protein. I'm sure it's probably not going to include much of what the doctor would test for, but it might give me some information while I'm waiting.
I tried going almost 0 carbs before but read that it might actually worsen a fatty liver so it scared me off. There seems to be a lot of opposing opinions on that. Sounds like its really working for you though. I'm definitely eating low carb. Love the idea of getting all your greens into a nice winter soup
Sweeteners have been given the boot here too. I used to live on diet pepsi. Thinking back, I'm really hoping that stuff didn't pummel my liver too. Counting up the amount of punishment it must have taken with food/painkillers and little exercise, I'm seriously hoping I can reverse any damage.
Hello I am reiterating much of what has been already said,
NAFLD is characterised by the build-up of excess fat in the liver of people who do not drink more than recommended guideline amounts of alcohol.
The first stage is fatty liver, or steatosis. This is where fat accumulates in the liver cells without any inflammation or scarring. For many people, the condition will not advance and a serious liver condition will not develop, but for some, NAFLD can progress to Non-Alcohol Related Steatohepatitis (NASH).
NASH is a more significant condition, as it may sometimes cause scarring to the liver and can progress to cirrhosis.
It is important to have testing for fibrosis - any stiffening/scarring in the liver. The latest national guidelines from NICE ( National Institute for health and care Excellence) and the British Society for Gastroenterology (BSG) highlight the need for an assessment of liver fibrosis in patients with NAFLD. Fibrosis testing can take place via a scan called a FibroScan that estimates any stiffness or a specialised blood test called a Fib-4 score which is very easy for the GP to order.
Depending on the result of the fibrosis monitoring the GP may then to refer you to a hepatologist ( liver specialist) .
With regards to paractemol, I would suggest you aim to discuss this further with your GP or perhaps your local pharmacist can discuss this with you also.
I will follow up with my GP, though getting an appointment seems like gold dust at the moment!
Due to Covid, I'd probably prefer the blood test as there's less interaction and potential infection. (Partner is vulnerable to the virus)
I hope I can find a way I can get my GP to take this seriously. Maybe they will pay attention if I point them towards the NICE guidelines?
I feel that asking for a very specific test like a fibroscan or F-4 will only flag me up as "health anxious" like it always seems to I have asked a lot of liver-specific questions in the past to my doctor and they seem to think I'm obsessing.
I do try to get a clean sample It's only ever "trace/small" bilirubin in the morning when I'm dehydrated, but if I test at any time of the rest of the day, it's negative. No idea if that means anything or not. I can't find much info about it online. Hoping its just the concentration of the pee in the morning that throws the colour off.
I've read bilirubin in urine strips can be thrown off by some kind of dietary protein, which maybe is just more concentrated in the morning for me. That or I'm falling apart!
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I really appreciate you taking the time to read through my babble!
Glad you managed to get your meds changed. Covid has certainly thrown a spanner in the works. 
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