Newly diagnosed: Hi. I am writing... - British Liver Trust

British Liver Trust

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Newly diagnosed

JannieM profile image
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Hi. I am writing because I'm feeling very scared and I don't know who to talk to. I was told today I have a very fatty liver after a scan. I now need a fibroscan. I recently had a bad allergic reaction to a medication and my AST was 212. It has come down to 60 over the course of a month. My ALT has also returned to normal. My GGT remains high at 116. It was 60 before the reaction, but my Dr said it was because of one of my meds and not to worry. I guess it turns out he was wrong. I tested negative for hepatitis viruses. They are testing for autoimmune issues because I had a slightly high ANA. My cholesterol is usually normal, but has been high recently. I'm on BP meds, but BP under control. Glucose has been a bit high lately, but usually OK. I'm 41 and slightly overweight (BMI about 26). I used to drink in my 20s and early 30s but in moderation until recently and now not at all. Basically, I'm freaking to that the Dr said that the fatty liver was bad. I'm going to cut out soda immediately and work really hard on my diet, but unless this is one of my meds I'm not sure what I candy other than stop it - and I need them for my BP. I'd love some help and guidance. Very upset and don't feel I can tell anyone.

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JannieM
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jojokarak profile image
jojokarak

It's good news if it is just fatty liver as it can be reversed ... Need to lose weight, change diet it needs to be fresh food no ready meals (they put so much salt and sugar in them) as you said cut fizzy drinks out, exercise . It's not going to happen overnight but it can be reversed with hard work... Your doctor would change your medication if they thought it was having anything to do with the damage ... I think the scan is just to check your liver is A ok otherwise (fingers crossed it is) but with your bloods returning slowly back to normal I would assume it is... Please don't be embarrassed about telling people there is 122 conditions what can cause liver disease not just alcohol .. let us know how you get on, plenty have posted on here months later saying it's going back to normal x

JannieM profile image
JannieM

Thank you so much for replying. I don't really know yet if it is "just" fatty liver or something more. Booked in for a fibroscan on 3 April. I did used to drink more than I should have over a number of years and I am so angry with myself for doing so. I'm also upset that GGT / eosinophil levels have been a bit high for years and doctor never seemed concerned. I think the fatty liver possibly made me hypersensitive to new medications. At the moment this all seems so complicated to unpick and the worry is stopping me from sleeping.

I see you're a similar age to me and have a new liver. I do hope it is going well for you. What was your experience getting transplant in the UK like?

jojokarak profile image
jojokarak in reply toJannieM

I think with your alt returning to normal that is positive news 😁 and don't beat yourself up for drinking we all did it... I was diagnosed with alcoholic cirrhosis and my friends weren't having it if it wasn't for them making me push for answers I wouldn't of found out it was through an existing medical condition... I had complications along my journey so getting on the list wasn't much of a breeze for me but I got there in the end x.

JannieM profile image
JannieM in reply tojojokarak

Thank you. I have a few pre-existing conditions and meds, so it is also complicated, but I thought all was going reasonably well. I caught a parasite and it was the treatment to that which threw out my liver, but now this fatty scan which the dr said was very fatty....I'm just so worried. Yes, my function numbers are better, but I think there is inflammation. I'm working overseas and worried they will make me go home. So much worry. It is encouraging to hear transplants can happen. Roll on the 'opt out'. Did you manage to keep working through all this?

Hi JannieM,

Welcome to the forum.

Have you been diagnosed with Non Alcohol Related Fatty Liver Disease? If so, you may find our publication useful to read;

britishlivertrust.org.uk/wp...

We hope your liver specialist can offer more specific guidance,

Best wishes

Trust1

JannieM profile image
JannieM in reply to

Many thanks. That is the tentative diagnosis, yes, though I am in the middle of further tests, including Fibrogram and autoimmune tests.

Firstly Jannie, welcome to this website, I hope you'll be able to find the answers to some of your questions you seek, or at least some reassurance here.

If I was in your shoe's I'd want to try and find out what is causing your fatty liver issues. It's true that certain medications can cause damage to the liver and fatty liver is the first sign of liver damage. The good news is that because the liver is such a wonderful organ, it's capable of fully repairing it's self at the fatty liver stage, so calm down....

What Jojo has written is correct, have a look at your diet. The liver passes around 2000 litres of blood and filters it 350 times per day, so everything that enters you body ends up going through your liver. Even when we eat, the food travels down into the gut where it is broken down by friendly bacteria, the bye product of this process is the production of ammonia. The liver is very capable of sorting out this toxic substance. So, your liver is a wonderful filtering factory. Some of our modern day drugs can also be rather toxic, and care needs to be taken.

I, like so many other people never read the leaflet that comes with prescription drugs so we're not always aware of the possible side effects. But care does need to be taken. Some years ago, I was diagnosed with having type 2-diabetes. I at the time did have cirrhosis of the liver. The diabetes nurse once told me that the cause of the diabetes was due to the pancreas not producing enough insulin, so she put me on Gliclazide medication. I went on to take these tablets for about six months. Here the nurse was only treating the symptom and not the cause. In my case, it wasn't the pancreas not producing enough insulin, it was in fact my badly damaged liver, had become insulin resistant. Then one day I happen to Google Gliclazide side effects, there in BIG bold letters were the warning, "Not to be taken if you have Liver or Kidney problems consult your doctor before taking". What I'm saying here is that even with the best of intentions, things can go wrong. I now quite often Google the name of the drug and read up the side affects and warnings.

A word of warning here though. If you do decide to Google these drugs side effects, stick the UK sites. NHS choices is always a safe bet.

I hope some of this helps and I wish you well.

Regards

Richard,

teanchat profile image
teanchat in reply to

Hi, can I ask please, how your insulin resistance is treated? I think, I may have this too.

in reply toteanchat

Hi teanchat, when I realised that the medication I was taking was damaging my liver, I stopped using the North Staffordshire Diabetes support team as I had lost complete faith in them. As I was being treated by the wonderful staff down at the Queen Elizabeth Hospital in Birmingham for my liver condition. I was referred to the diabetes team down there. My diabetes is now being treated with two different types of medication. Linagliptin and Metformin. As I had received a liver transplant, 16-months ago my new liver is able to deal with the taking of these different drugs. But the long term prognosis is that I should be hopefully off all medication and be free of type-2 diabetes by the end of this year.

A few months ago I decided to do a couple of online courses run by Futurelearn. The subjects were, "LIVER TRANSPLANT" and "LIVER DISEASE: LOOKING AFTER YOUR LIVER" both these courses were run by the Universtity of Birmingham. And I amazed myself by getting a Certificate of Achievement award: futurelearn.com/certificate...

Both of these courses were run by Dr Patricia Lalor PhD, BSc. Senior Lecturer Institute of Immunology and Immunotherapy.

While doing these courses. Dr Lalor and I have exchanged emails. In one of these email exchanges I expressed my interest in a particular gene called the CRTC2 gene, or switch gene as it sometimes refer to. CRCT2 is found in many cells including immune cells, heart and placenta and some studies suggest in liver cells too. I regard this gene like a three-way switch, but like all things it's a bit more complicated then that. If the switch is in position one for example, Then the liver is processing sugars it turns these sugars into glycogen which is the stored for later use. Once the liver is full of glycogen, it starts turning the glucose it absorbs from the blood into fatty acids, for long-term storage as body fat. The fatty acids and cholesterol are gathered as fatty packages and delivered around the body via the blood. Much of the fat ends up stored in fat tissues.

If the CTCT2 switch is then put into position 2, then the liver does the reverse thing as the demands for more sugar and glucose by muscles and other organs increase (as they are when we are running). Here the liver dumps loads of glucose into the body. It is believed that insulin is the messenger and trigger that tells the liver to stop dumping this sugar and switch back to position 1 again. It is my belief that when the liver becomes insulin resistant, the message for the liver to stop dumping this sugar doesn't always get through, so the liver continues to dump more sugar.

What about position 3 then? This is one of those wonderful mysteries of the liver. Our bodies burn calories when we sleep, especially during the REM (rapid eye movement) sleep stage during REM sleep, our glucose metabolism increases, accelerating the rate of calorie-burn, The longer you sleep, the more calories you burn — but oversleeping has the reverse effect, and slows down metabolism.

Sorry for the long winded reply to your question but I have to confess that I do find this all rather fascinating, and just wanted to share this with others. There is still a lot of research being carried out in to the understanding of the CRCT2 gene. For those of you who might still be interested, here is an extract from Dr Lalor's email.

"The gene you found is interesting – the protein does indeed act as a switch to produce more sugar in fasting situations and is down regulated when abundant sugar is present. Levels change in type 2 diabetes and this makes the hyperglycemia worse. Whats most interesting is that the signals that act through this molecule are linked to a protein called calcineurin which is activated and causes the liver to make more sugar. The calcineurin levels increase in insulin-resistant states. CRCT2 is found in many cells including immune cells, heart and placenta and some studies suggest in liver cells too. Also down regulated in some cancers

However calcineurin is also in immune cells and is linked to growth and functional responses. So some anti rejection medications used after transplant, target calcineurin to dampen down anti-graft immune responses. Tacrolimus and cyclosporin are calcineurin inhibitors. Thus you can see how there might be a connection between anti rejection medication and function of CRCT2. As you say however its quite a new area of research and it takes a while for new advances to make it into clinic."

Good Luck

Richard

teanchat profile image
teanchat in reply to

Hi Richard64, Thankyou for your detailed reply. Congratulations on achieving your award and best wishes for your health.

JannieM profile image
JannieM

Thanks Richard. Were you able to improve your cirrhosis? What has helped you the most?

Glen1234 profile image
Glen1234

I’ve been in a similar situation. I’m 44 and had elevated enzymes the ast and alt went back to normal but ggt still high. I freaked out and managed to get health anxiety over the whole thing. On the positive side I have managed to turn the anxiety into a positive - changed my diet (although no advice on what it should be) pretty much quit drinking (2 times in a year) I have gone from above 27% body fat to just above 10% through running, hiit and now weight training. I’ve no idea if my liver is better but have my 6 monthly test on Thursday which I’m not looking forward to. All you can do is Mediterranean diet, keep your protein up whilst dieting and exercise and try to improve your gut bacteria. I was only told I had a sensitive liver and probably some fat on it but it didn’t show on ultrasound. Good luck it’s a long term thing but If I can change my life over the last 18 months anyone can.

JannieM profile image
JannieM in reply toGlen1234

Thanks. Am going back to different dr to get checked out again. Not feeling great and very freaked out.

Glen1234 profile image
Glen1234

I have private health insurance and found a heptologist he was much better than a gastroenterologist. He was more concerned than my GP about the inflammation who seemed to not be worried. The hep told me to eat more fruit and veg, coffee and dark chocolate. And to exercise more and get my weight down. He also got me vaccinated against hepatitis etc.

JannieM profile image
JannieM in reply toGlen1234

My immediate concern is finding out how bad the damage is. Then make a plan. Still terrified.

JannieM profile image
JannieM

Update: Dr says ultrasound shows quite a bit of fatty liver and he wants to do the fibroscan to be sure of the percentage. He hasn't seen any fibrosis or cirrhosis or inflammation so far. He wants the autoimmune results back before he sees me, but was quite reassuring about the potential for dietary management. Feel a little better.

Barnetaccounts profile image
Barnetaccounts

As has been said the term “fatty liver” is a reversible thing. It’s when left and nothing is changed that it can become fibrotic, and then cirrhotic that major issues occur. Your BMI shouldn’t be of too much concern either, mine was 55 so was “morbidly obese” and I managed that down to 35 by changing all my eating patterns. I also drank extensively, although I stopped and have remained abstinent for over 15 years so far. Do not let your head run away with you, it sounds like things will get sorted after you have been tested further.

JannieM profile image
JannieM

Further update. Had the fibroscan and it showed medium fatty liver and no fibrosis. So a great result, considering. Meanwhile, I have been trying really hard with my eating and exercise. It has taken 10 days to lose 1lb. That's with a lot of walking and swimming. I started HIIT this morning and it isn't too bad. Scan Dr reckons metabolic issues playing a part (hypothyroidism, high bp, polycystic ovaries...I've got them all). Will see consultant when my autoimmune results finally come back (taking forever) and he might put me on Metformin. Also have an appointment to see a nutritionist.

Thanks all. I'm hoping this can all be dealt with and I will look after myself better than I have been.

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