Very scared: I am 52 and had a few... - British Liver Trust

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Very scared

Shrimpette profile image
31 Replies

I am 52 and had a few slightly raised ALT /AST tests over the last 2-3yrs. I have been quite fatigued during this time and had a US scan 2 yrs ago which showed a slightly fatty liver. This was never followed up. Having had a lot of abdominal pain on the left for some time which I repeatedly told various GPS about, I was told I had ibs, needed to lose weight, had chronic fatigue, was depressed and so on. Had a recent US scan and which suggests a degree of cirrhosis on left lobe and fatty paramchymal tissue on the right. I am really shocked and frightened for my life. I am a single parent of a 13yr old an feel like my life is about to fall apart /end. Why did primary carers leave it so long to investigate of warn me of the potential risks 2 years ago. Are the scans conclusive or could it be increased level of fatty liver? I can't believe this is happending to me.

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Shrimpette
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31 Replies
Shrimpette profile image
Shrimpette

Replies welcome - lifeline needed.

AyrshireK profile image
AyrshireK

Non-Alcoholic Fatty Liver Disease (NAFLD) is generally regarded as a reversible condition providing you can make adjustments to your lifestyle - diet is particularly important to reduce fatty foods, processed foods, salt, sugar and such like and increase exercise where possible. If left unchecked fatty change can lead to fibrosis and later cirrhosis. We have lots of people coming on here who've said doctors said it was "Just fatty liver!" - there is no such thing as just fatty liver. Fatty liver is the start of liver damage if caught and tackled it needn't progress and we've had other posters come on here with this diagnosis who have managed to reverse it.

If it is cirrhosis - it isn't an immediate death sentence it just means you'll need to look after your liver going forward & hopefully you can slow down any further damage and indeed even early cirrhosis is now thought to be somewhat reversible.

Not being an expert on fatty liver (just the information picked up from the forum and own research and online courses) i'd consult the British Liver Trust pages to see what guidance they offer on NAFLD going forward.

britishlivertrust.org.uk/li...

britishlivertrust.org.uk/li...

Hopefully you'll find further guidance and hopefully some reassurance there.

Katie

Shrimpette profile image
Shrimpette in reply toAyrshireK

Katie - thank you. I can't understand why my GP hasn't followed this through with me before. If this had been taken seriously a couple of years ago I may not be in the position I am now. Are you saying that both 'fatty liver' and early cirrhosis can be reversed just by diet alone? I am not very symptomatic thankfully. I will look at the links provided. Bless you.

Shrimpette profile image
Shrimpette in reply toAyrshireK

where is the evidence that early cirrhosis can be cured Katie? Many thanks,

GP tomorrow and consultant on the 15ht Sept. Do you know if the cirrhotic lobe can be removed surgically if the other lobe recovers? Just a thought.

AyrshireK profile image
AyrshireK in reply toShrimpette

If you read the BLT page on Cirrhosis it states the following :-

"Reversing the problem

Until recently, it was thought that a liver with cirrhosis could not be healed. This is usually the case because most diseases that cause scarring of your liver (fibrosis) are long-term and difficult to ‘cure’.

However, recent research has shown that it may be possible to heal scarring and even cirrhosis where the liver disease causing this damage is able to be successfully treated. "

The full page is at :- britishlivertrust.org.uk/li...

There are constantly research projects and new advances in treatment so who knows what will be possible going forward. They are currently investigating fat busting chemicals too for treatment of fatty liver. I haven't a clue about what surgical options would be feasible.

If you are interested in learning more about liver health, liver diseases, treatment and research there is an excellent free, short online course running soon on FUTURE LEARN at :- futurelearn.com/courses/liv...

A number of us on the forum have done the course in the past and it provides an excellent insight into liver health.

Katie

Shrimpette profile image
Shrimpette in reply toAyrshireK

thanks Kate. xx

grace111 profile image
grace111 in reply toAyrshireK

thanks for this great information,

Charlie12345 profile image
Charlie12345

Scans are accurate. A fatty liver can be linked to a poor diet too, particularly those high in sugar. I have had problems with diabetes and a fatty liver and found cutting out sugar, refined carbs and alcohol seriously helped and reversed the damage. I followed a strict diet - there was a really good book I followed called the 8 week blood sugar diet by Dr Michael Mosley. (He did a BBC documentary about it). It's tough, but you can do it! You need to speak to a GP for support and advice and ask to see a liver specialist for more advice/guidance.

Charlie12345 profile image
Charlie12345 in reply toCharlie12345

Just to add there's a lot of research that is now saying that it is not high fat diets that are bad, but those high in sugar and refined foods like pasta and white potatoes. You need to have a certain amount of good fat in your diet to be healthy.

Shrimpette profile image
Shrimpette

thanks Charlie12345 - I'm aware of the issues you mention. I think I have a metabolic disorder. Six years ago I was running 5k 3 times a week in my lunch break. Stress has been a big factor. You haven't been diagnosed with cirrhosis then I take it? My father died at 84 from lung cancer (well, radiation puenmenitis) and he had cirrohis of the liver - alcohol related.

Shrimpette profile image
Shrimpette

Charlie - do you know if this diet is suitable for people with liver disease? I am losing weight but I have read that it's better to lose it more slowly.

Shrimpette profile image
Shrimpette

I am committed to losing weight, please don't misunderstand...

Shrimpette profile image
Shrimpette

Can't sleep,.....appointment with consultant not until October 13th. I can't cope knowing I may never see my daughter grow up. She is the best thing that ever happened to me....I can't believe this is happening to me...

AyrshireK profile image
AyrshireK in reply toShrimpette

I know this is a scary time but you need to get on with life - don't be killing yourself off prematurely. As we've previously discussed you've got a reasonable chance of reversing some of the liver damage you have. You are not at deaths door and there are folks on here who've had a diagnosis of cirrhosis for 20+ years and are very much living their life the best they can.

You are under a consultant and should be being closely monitored, make sure you are getting an ultrasound every 6 months to check for changes, regular blood tests and do your best to make the necessary lifestyle changes that will give your liver and you the best chance going forward.

I've got a wee hubby here who has had a diagnosis of chronic cirrhosis for 4 1/2 years. He was assessed and listed for liver transplant in 2014 and spent 10 months waiting. During the wait he improved his weight (in his case he needed to gain rather than loose weight), he exercised every day even if that was only a 20 minute walk round our village & he didn't dwell on the what if's. His blood results and liver health actually improved sufficiently for him to be delisted as not needing a transplant at the moment and from seeing a doctor evey 5 weeks he now only goes to his consultants every 3 months. He gets a 6 monthly ultrasound scan, an annual endoscopy and blood tests at every consultation plus locally at GP's if we ourselves feel there is a change occuring.

I know it's shocking when you get a new diagnosis - my hubby saw a psychiatrist at the liver unit who said he had an "adjustment depression" to do with overnight going from a seemingly fit and healthy man to a chap with a life limiting condition.

He still gets very low at times about the limitations on his life but we make the most of the good days and now that he is free from the liver transplant list we've managed holidays and all sorts.

You need to do the same, don't dwell on the future and what ifs, no doctor has a crystal ball and can tell you how long your liver will go on so you need to live life now, live life to the best with your daughter and by looking after yourself and your liver who knows how long you'll be around for.

As my old grandma always used to say "Keep you pecker up!". Stressing about it will only lead to other issues. LIVE LIFE TO THE FULL!!

Katie xxx

Shrimpette profile image
Shrimpette in reply toAyrshireK

Hello Katie, I understand what you're saying, it's just that I don't have a partner and all the financial responsibility is on me, I have no family support.(no critical illness or life insurance) ...I am deeply shocked, my 2012 US was normal. I'm sorry to hear about your hubby. delighted to here about the progress made. Id be really happy if you kept in touch. xxx

AyrshireK profile image
AyrshireK in reply toShrimpette

If the worst came to the worst .................... and you are a long way from that based on your current diagnosis. If you are in the UK there are support systems in place either through the financial help of benefits (ok they are a nightmare to claim but it's possible) and also Social Work support. Your daughter is 13 and your time is not limited (your arn't end stage cirrhotic or anything like it) SO in time you will be a team together.

I do think you are perhaps jumping the gun, the stress will make you even more poorly. Get some answers at your appointment in October and get all the help you can in looking after and monitoring your liver going forward. (Ask for referral to a dietician, if you are just seeing a gastroenterologist and you think they are not giving you the correct advice ask for referral to a hepatologist, make sure you are getting scan, blood tests and regular monitoring). Trust me we have had folks with NAFLD on here in past four years of my membership who have reversed the condition through the appropriate lifestyle changes.

Keep in touch.

Hubby isn't 100% fit, he still has chronic fatigue and really cr*ppy spells, he also has symptoms of hepatic encephalopathy which has come about due to having chronic cirrhosis (in his case down to Auto-Immune Hepatitis). No one can tell us how long his liver will stay compensated & ticking along but we just take each day as it comes and make the best of the better ones as I said earlier.

I'll sign off now, hubby needs his lunch. :)

Katie xx

Shrimpette profile image
Shrimpette in reply toAyrshireK

Hello Katie, you're very kind. I am one of those people who needs answers straight away. Anxiety...story of my life. Now I have reason to be anxious....SORRY. My scan shows mainly fatty liver but there is a suggestion of some degree of scarring in one lobe...I will try to keep things in perspective....just had a biopsy for something else so feel I have had my fair share recently. Don't want to be a burden to my daughter...keep in touch.

Sue xx

Shrimpette profile image
Shrimpette

I'm getting twitchy legs/calfs......is this a symptom?

Kalicocat profile image
Kalicocat

Shrimpette, just wanted to let you know that I've had fatty liver twice, and gotten rid of it twice. The first time I was diagnosed I had been a moderate drinker, but not excessive. We thought that might be the cause and so I stopped all alcohol, changed my diet and started exercising at least 6 days per week. As a result I lost about 10 pounds. When I had an ultrasound 6 months later the fatty liver was gone. I was then diagnosed with diabetes about 5 months after that. My gastroenterologist said that I might be glucose intolerant because my liver may still be fatty but not detectable on ultrasound. He said that insulin resistance can cause fatty liver.

3 years later, I was feeling even worse and found my glucose to be completely out of control. An ultrasound confirmed that my fatty liver was back or, at least, detectable on US again. I cut out all junk food and ate very healthy along with zero alcohol to try to get rid of it, 6 months later US and fibroscan still showed fatty liver.

I read on a diabetic site that a low carbohydrate high fat diet reversed fatty liver in alot of diabetics, so I started that diet mid April, 2016. My fibroscan and US results just 4 months later showed that the fat is gone from my liver, and they could no longer find any gallstones in my gallbladder. My gallbladder stones were small, so I'm hoping they were ejected from my gallbladder due to my high fat diet, never to return. My RUQ pain is also much better.

You may want to try a low carb diet, as they are finding out that insulin resistance is a cause of liver disease almost as much as alcohol is. I'm going to try to stay on my low carb diet for life, as I really don't want to go through all of that horrible fear and worry again. I pushed my GP for fasting glucose and insulin tests in addition to a glucose tolerance test and that is how I found out I was diabetic. It might be something for you to look into, or you may just want to try the low carb diet, it sure worked for me and I feel and sleep so much better now. Good luck and I hope you feel better soon. Fatty liver is definitely reversible, you just need to get rid of the cause.

Kalicocat profile image
Kalicocat in reply toKalicocat

I should tell you some of the things that I eat...

Lots of nuts and all different kinds (cashews and almonds are very good for you), tons of different vegetables - I eat a huge variety, my plate is usually 3/4 vegetables and 1/4 protein, mushrooms especially crimini and portabello, a variety of cheeses, cottage cheese, berries, chicken, some beef and pork, salmon and other types of fish, shrimp, tofu, a lot of salads for lunch or supper, olive oil, coconut oil, flax oil, butter. balsamic and apple cider vinegar. I also go through alot of cream in my coffee/tea.

Breakfast is typically smoothies made with whey protein powder/isolate, blueberries, almond milk or coconut milk and 2 tbsps ground flax seed. I try to stay away from all sugars and starches like corn, potatoes, all grains - wheat, oatmeal, pasta, anything that is starchy is out for me.

Basically, you eat fat for energy instead of carbohydrates. My blood lipids have never been better. I believe this diet works because it changes your liver's metabolism as it starts to burn fat for fuel, and that allows it to clear out it's stored fat (triglycerides) in a very short period of time.

Shrimpette profile image
Shrimpette

Kalicocat, thank you. I have started a carb free diet and have already dropped 11Ibs but I think I need a bit more salt rather than complete elimination. Some of this will be water loss but I am determined to stick to it. Just need to pick up my exercise. Six years ago I was running 5k 4 times a week in my lunch break! In 2012 I had a US scan which showed that I had a normal liver, I started suffering from fatigue in 2013 and thought I had a thyroid problem, GP said I was depressed. Fatigue leads to in activity and over eating (I ate icing sugar out of the packet at one point!). My weight increased dramatically. Fatigue and raised (slightly - even in May 2016) LFTs were ignored by various GPs. Results from 2014 ultrasound confirmed (although this site will tell you that there is no such thing as just fatty liver) and again disregarded by GP, I never connected this will fatigue or any risk to my health as GPs didn't, I have fatty liver but also suspected cirrohis (in just 2 years!) although waiting to see consultant. Abdominal pain was dismissed as IBS, gas etc, My hope is that I can reverse what is going on with advise from heptologist. You don't mention if you had any symptoms.

A lot of my symptoms can be seen here - liverdoctor.com/liver/sympt... even anger and irritability!

Wish I had insisted on investigating LFTs earlier - was convinced thyroid issue and so busy I neglected myself. What a price to pay! Very disappointed with GP practice. Can I ask did you sweat a lot?

Many thanks,

Sue

Shrimpette profile image
Shrimpette

and.... although I drank alcohol in the past, sometimes too much, I have not drank any alcohol for nearly 10 years! normal liver in 2012.

Kalicocat profile image
Kalicocat

Shrimpette, I was very fatigued, dizzy spells, dry eyes, nose and skin, insomnia, hot flashes, both day and night, flushed face alot, joint and muscle pain, hair loss, diarrhea, nausea, right upper quadrant pain that bore through to my back, feeling full alot, bloating, short of breath, headaches, the list goes on.

However, I noticed about a month ago, that my glucose was much easier to control, my fasting glucose came down from 5.6 - 5.8 to 4.8 - 5.2 mmol/l, my diarrhea went away, most of my pain was gone, no more nausea, no more fatigue (or not alot), and the biggest difference, is hardly any hot flashes or night sweats. I'm going through the tail end of perimenopause so always blamed the sweating on that, but now that it's gone I realize that it was from the fatty liver.

I just got diagnosed with hypothyroidism as well, so some of my current fatigue and other symptoms are probably due to that so until I get my medication to the proper levels, they may not completely go away, but that will take time.

Regarding the salt, I eat a TON of salt, and it never affected my liver in a bad way. I balance the salt out with some potassium chloride as well, it's sold as a salt substitute in most stores. The other thing I do is take a probiotic everyday, I've read that bad gut bacteria can contribute to fatty liver and diabetes (endotoxins), so that's another thing you should start taking everyday.

Don't lose weight too fast, take it slow and watch the carbs, I bet you're going to feel a whole lot better in a few months.

AyrshireK profile image
AyrshireK in reply toKalicocat

The problem with salt in a person with cirrhosis is that it can lead to much fluid retention and contribute to the formation of ascites/oedema. Too much salt is also damaging to other organs.

Shrimpette profile image
Shrimpette in reply toAyrshireK

Hi Katie, how are you and your husband today? Just to say your input on here is invaluable....

Kalicocat profile image
Kalicocat

I honestly don't think you have cirrhosis and, besides that, acites is a VERY late stage of the disease process. See if you can get rid of the fat in your liver with your diet and exercise and then get another US. You may also want to seek out a fibroscan machine, that will tell you where you are sitting on the liver health scale, my first fibroscan 6 months after my first fatty liver diagnosis showed 4.7 kPA (liver stiffness), this older machine did not measure fat. My 2nd fibroscan (4 months ago) showed a 3.7 kPA (better) with 236 db/m CAP (fat), and the 3rd one just this week showed a liver stiffness of 3.3 kPA with 189 db/m CAP.

So it looks like my liver is in great shape right now.

The liver stiffness will tell you how much damage there "might" be to your liver. I don't care what anyone says, I believe that the kPA (liver stiffness) is affected by the amount of fat in the liver. You might want to wait for 3 months on your diet before you have one of these tests. Here in Canada, they cost $100.00, so not too expensive for peace of mind.

Shrimpette profile image
Shrimpette

Thanks Kalicocat. I think the dietary changes are the right way forward. Thanks for being positive for me. I am horrified that my GP (various) have overlooked all my symptoms. As someone who has been active all her life fatigue was a shock to me. But they have let me struggle for the last 4-5yrs and labelled me 'mild CFS' sufferer. What about my liver function tests - highlighted with little red flags!! I too have been peri menopausal during this time and thought some of my symptoms could be attributed to that. I have felt so fatigued I could just about to go to work when I didn't have a migraine on waking! And only able to do the basics at home during the weekend. Too tired to exercise (or motivation completely lacking) or I would exercise (say a long walk) and I'd be wrecked for a week. I think have had one or two more symptoms on my list than yours....maybe they make a difference? Not to intrude, but do you have private health insurance in Cananda? $100.00 sounds very cheap. Keep looking after yourself. Keep in touch,

Kalicocat profile image
Kalicocat

Hi shrimpette! I am very lucky to have a very good GP and gasterentologist so both of them understood that fatty liver was nothing to sneeze at. But it's just in the last few years that doctors have discovered that fatty liver is NOT benign as originally thought. Not all of them keep up with their reading.

We have public health care so we run into tons of issues with getting the appropriate tests done. However there are more and more tests that are not covered by them and this is one of them. Now that I know how well the fibroscan and ultrasound correlate I will just go the fibroscan route if I start feeling bad again. And since I pay for it I won't have issues with booking one in the future.

Shrimpette profile image
Shrimpette

You are lucky in which case. I think GPs have a duty (written in their contracts, if it isn't already) to maintain their knowledge base - good god, we pay them enough!

Shrimpette profile image
Shrimpette

Feeling grim....:-(

Shrimpette profile image
Shrimpette

Please be aware that this struggle is a very personal and individual journey. Posting on here often means we are vulnerable but not an homogenous group. Middle aged fat women with fatty livers for example. In my case I have been vey active most of my life, but stress and single parenthood and an inadequate work life balance have contributed to the status quo. Whatever that is. I have desperately tried to seek resolution to the problems I have encountered without proper support from the medical establishment. My diet by and large has been very healthy - I have not sat around eating donuts watching TV for the last 6 years. And I dare say this applies to others. Hope is what drives us all.

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