Hi everyone, back in December I saw my GP and had blood tests done for a different health issue (cardiology referral), and he phoned me up to say that my liver emzymes were high and he was putting in for an emergency referral to hepatology and a liver scan. Next week I was asked to come in for a second set of bloods and told over the phone that hepatology required 2 blood tests before they would accept the referral. The results of my second blood tests were all fine, “no further action required” so I thought all was well…. 6 months later I got an apt for a Fibroscan.
The fibroscan reading was 17.2, which would have to be in the category of NAFLD. From the graphs online I can see NAFLD Cirrhosis begins at 14, so is it definitely sure now that I have Cirrhosis or could other tests prove just some scarring that I could recover from?
Any ideas on NHS timelines in wales as to how long it will be before I see a consultant, nurse or nutritionist? I have been searching online for the best diet to combat fatty liver and heal the liver but I’m seeing conflicting information. Some say to cut all starch, carbs, fruit and go full keto with intermittent fasting, while others recommend a diet including fruits, whole grains, even potato’s, grapes, bananas (being high in carbs and natural sugars).
I don’t know what to do or where to go and I am worrying that if there is any chance for me, now is critical to make changes to stop it going any further and try to reverse it, if at all possible. Also, my fat content score was super high. I’ve seen online mentioning that you have to have healthy fats to bring down the fat content, so I’ve been incorporating avocados, extra virgin olive oil, fish etc into my diet now, but I really don’t know if that’s ok.
Can anyone point me in the right direction or give me any hope, guidance etc. my GP hasn’t had my results back and won’t discuss it with me until he has them, even though I was already given the results. I just feel like it’s precious time if there is any hope of reducing my number, or is it once you hit the cirrhosis score, that’s it, you definitely have it terminally?
Sorry for the long post, I just want to be here for my son. His step mums funeral was yesterday, and the last thing I want is for him to have to lose me too now. Im very afraid.
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Peachy_keen
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If you [are in the UK and] would find it useful to talk things over, our nurse-led helpline is open Monday to Friday from 9am to 3pm on 0800 652 7330 (excluding bank holidays)
If you have liver disease eating a good, balanced diet is essential to maintain strength and a healthy weight. Here is the link to information on Diet and Liver Disease on our website, which you may find useful
You might also need to change the food you eat depending on:
the type of liver disease you have
the stage of the damage to your liver - people living with cirrhosis have special dietary needs
any eating difficulties you experience such as loss of appetite or feeling sick (nausea)
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Very curious that your blood numbers went to normal on the 2nd test. The scan, whilst not what you want to see, means that its showing a stiffer/harder than a normal Liver. It may not mean its scarred, I recall someone years ago had something similar, it turned out it was a condition (I cant remember the name) that made the Liver stiffer on the Fibroscan when they didn't have any scarring.
You will have to wait and see, the Drs will try to find the answer.
not sure if this helps… I had a fibroscan may 28, my score was 75 the highest possible score. I had a ultrasound today, the technician made sure to tell me she was by no means a doctor but has done countless scans… she said she didn’t see anything wrong with my liver (I have been a heavy drinker for 20 years) my liver function is very elevated bilirubin 3.8 INR at 1.2. Meld score of 14. I see my primary doctor Friday to get official results of ultrasound. I currently have no physical symptoms of a failing liver while fibroscan and bloodwork suggests otherwise. I don’t have the first clue what the hell is going on but can’t seem to get a straight answer. However I would tell you I can relate to the panic/anxiety of the waiting and not knowing just having goggle to look up things. Hang in there, I wish you the best
Hi there. Ultrasound does not pick up on stiffness of liver, that's what fibroscan is for. I had numerous Ultrasounds on my liver and nothing untoward was ever picked up. However, when I suddenly began showing symptoms many months later, fibroscan gave a result of 73.4 KpA and cirrhosis was confirmed. I, too, was a heavy drinker for over 30 years and have now stopped completely. I have no idea how badly scarred my liver is, as I have merely been told you have cirrhosis, give up drinking and go away. I have had to push hard for a further fibroscan to see if my abstinence has brought reading down and am still waiting (6 months later) for the appointment to come through. At my last Ultrasound after diagnosis, I was told that my liver " wasn't that fatty"...I'm kinda praying for a miracle and that my liver was merely extremely inflamed and maybe a little scarred (fibrosis) as opposed to full blown, end stage cirrhosis. Since stopping the devil juice, I have no symptoms whatsoever, other than arthritis and tiredness, but that can be attributed to my age (54). This is such a misunderstood condition with conflicting advice given out willy nilly by "the professionals" who automatically tell you you have cirrhosis when that may well not be the case. Fibroscan is notorious for not being able to tell the difference between inflammation and actual scarring. Something needs to be done (more accurate testing) to ensure that a cirrhosis diagnosis is a definite condition and not maybe something in between inflammation or scarring. A lot of people, like me, are left in limbo not really knowing how bad or otherwise their health really is. NHS aftercare is an absolute joke. I asked to be referred to another consultant over six months ago, as I had no faith whatsoever in my gastro consultant (who I had been under for over 2.5 years and was treating me for acid reflux) going forward. I asked him why cirrhosis hadn't been picked up on the many scans and blood tests I had over the years. His reply was simply "I don't know" (can you believe it!!). I am now back on the waiting list with no professional looking out for me. I am the one who requests my six monthly blood tests. I am the one who requests my (entitled to) six monthly Ultrasound, I am the one who who has to sit there in pain with arthritis/bad back and decide whether I should risk taking pain relief. No one to ask or bounce off of with the numerous questions that plague me on a daily basis as to whether I am to expect all the nasty things that cirrhosis eventually brings (HE, varacies, diabetes and and the like). Am I going to die FROM this condition or WITH it?? Who knows because no one has the answers. It all gets so very boring 😴 waking up each day and then remembering that you are seriously ill and can't do this, can't eat/drink that. It's a complete sh*t show.
My lord! I agree with you completely. The waiting and testing all for not except to like you said basically become mentally exhausted. It’s not right at all. I’m under no illusion I’m any more important than anyone else but still am a human being. I too struggle with will one day be the first of a slow increasingly painful decline??? I truly feel for you and wish you any kind of peace you can find when you indeed can. My best regards.!!! Take care or try to anyway…
Thank you for your very kind wishes which are entirely reciprocated. I really don't care anymore. I live for each day, as it comes and as long as I keep sober ( which I most certainly will) and feel OK, then that's fine with me. OK, so I have liver disease. Why worry about something you can't do anything about? There's no cure, no medication, no after care. What fo you do? Sit and worry every day about what may come? Nah, I'll deal with that when it happens. Best wishes to you going forward x
My previous post to you seems to say the complete opposite of what I originally said!! Yes, I do wake up every day reminding myself of my condition, but my attitude has changed of late in that I will live each day as it comes and just deal with what may be when it happens. As I also said, I find the whole thing very boring and I refuse to let it dominate my life. Being abstinent from booze for 10 months has been a defining chapter in my life and I actually feel very well most of the time now. The fact that I have lost 2.5 stone, having been fat for most of my life, has cheered me up no end, and I eat loads of (healthy, home made) food. It's not been all bad!!
Hi Peachy, I'm no expert so this is just my opinion. (I read this forum because I suspect I have bad liver problems, but am too scared to get further tested. Stupid I know, but I bet there are more like me here!)
OK, having a few other health problems, I feel that it's very difficult to get reliable, Scientific nutritional advice about any health condition. Till recently, the nutritional advice for type 2 diabetes and obesity was just plain wrong!
It seems to me that now, the best advice for general good health - so that must must include liver health; you can't have hugely different diets for each organ is this! Low processed carb, as few UPF as you you can manage, none if possible! But it's hard in our food culture. That's ULTRA processed. Things like tinned or frozen veg is just processed and ok if not extra ingredients added. As many colourful veg every week as you can. Try to get 30 different ingredients every week - that includes herbs and spices so not too hard. ( Look up Tim Spector at Zoe study, Imperial College London.)
Healthy fats. More difficult - there is a lot of thought against many processed oils at the moment but probably, not too processed is probably best so use butter and olive oil not strange oils and margerine types. If you eat meat, chose less but but high quality meat, eg grass-fed, free range eggs etc.
Try to have at least 12 hours each day when you don't eat, just water - can be longer according to any other health conditions you have. Obviously, don't drink alcohol till you get your results, and then only very, very moderately / occasionally.
Generally, get some cardio exercise every day - walk the dog for example. Get some strength / resistance exercise (no need to join join a gym, find a YT physio channel that is not too irritating - 😅 eg Bob & Brad. Relax in green surroundings ('meditate' or not, just sit quietly and pay attention only to the birdsong or follow your breath etc.)
This kind of life will possibly help you get off any medicines you currently take and that will help your liver because it will not have to process these extra drugs.
Our livers want to work to help us and will try to heal any damage our lifestlye has done to them. We can help them. Honestly, I really struggle to stick to this so just writing it has helped me.
Many of us are as addicted to sugar and UPF as some are to alcohol so it can be hard to change to eating healthy. Hence the huge rise in NAFLD. Look up Chris van Tulleken talking to the Royal Institution about this addiction exists altough it is poo-pood a lot!
I'm not great at this but this is what I honestl believe to be useful.
I have similar problems Investigation are normal except thrombocytopenia. Initial fibroscan score was 14 and now it is 8.5. I have followed advice for maintaining balance diet. Weight reduction by 10% Liver friendly diet like pomegranate, kiwi, 19 GM protein per day( ie chia seeds, flax seed , almonds and apricot included in Greek yogurt) Restriction of calories upto 1700. Maintain BMI around 22 .
I am in the USA so our healthcare system is different than in the UK. I was diagnosed with cirrhosis in 2018. At the time, I actually worked for a Radiology group. I was in denial of the diagnosis so much so I had 5 different radiologists look at my CT scans and they all confirmed cirrhosis. All my numbers were low. I had developed diabetes within 6 months prior but I barely registered as having diabetes. One pill a day put my blood sugar where my doctor wanted it to be. I had gained weight too within the year prior. Never alcohol. My doctor always said a liver biopsy was the 100% test to confirm cirrhosis so I had that, too. It confirmed it. Also, low platelets and anemia was what triggered my beginning of something was wrong with me. Never imagined I had cirrhosis but a CT scan of the abdomen with contrast next showed it, too. I don't really feel "bad". I eat what I want. I don't really follow a diet even though I probably should. Initially, I did go on a low carb diet for 3 months and lost about 40 lbs thinking that would reverse the damage but my hepatologist said I couldn't reverse cirrhosis once I reached that stage. My lab numbers are OK. I did have a fibroscan back in 2018 and I believe it was around 17. Now, 6 years later, I have routine labs, ultrasound every other year, CT scan on alternate years, endoscopy every other year. I try not to worry about it anymore because I did all that the first year. I was a basket case the first year in denial. To this day, I don't drink. I initially had and still have low platelets and remain anemic since day 1. I take iron.
Fatty liver is the cause. I knew I had a fatty liver from like 2006 and back then was told not to worry about it, "a lot of people have it". I was slim and physically fit then, too. I'm 67 years old now but I once asked my hepatologist my prognosis and she told me she didn't have a crystal ball but that I would probably die from something else but liver transplant would be my only choice if my liver started failing.
Platelets were around 80,000 and hgb I believe around 8. Even now, Platelets stay around 100,000 or 90,000. Hgb 10-11 but I take iron all the time now.
Reading for years. In my experience, fructose caused my problems and sugar as well. So I have had success cutting out all fructose all sugar which contains fructose and all simple carbohydrates which CONVERTS to fructose in the body. Lost tremendous weight reversed fatty liver and reduced fibrotic liver. Yes I eat Whole Foods, animal products and NON starchy vegetables also fermented vegetables. The research is clear. I will never touch processed foods ever again, they are the reason so many are dying.
I live here in the US and there is another site on healthunlocked that is titled Fatty Liver Foundation. It has great advice and lots of information on diets.
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