Hi guys,
So as you may or may not a know, I was diagnosed with Fatty liver a dew weeks ago from LFT's and follow-up Ultrasound.
I was just wondering if anyone else who has been diagnosed with fatty liver has had a period of feeling down and depressed about it or panicky ? And if so, how did you deal with it?
Have to mention, I do suffer from Anxiety anyway. Also, how do I stop myself looking up stuff online, because I get sudden urges and it makes me feel worse.
Thanks,
Evan
Dear EvCLl1
Please see this link below to information about non-alcoholic fatty liver disease (NAFLD) on our website. This page contains information and many links which you may find useful. Please also consider having a look a the Questions to ask your doctor page I have linked below.
For reliable information about liver disease, please see the information available on British Liver Trust's website. All of our patient information is written by, or rigorously assessed and reviewed by, medical specialists in their field or other health care professionals. Additionally, our guides are reviewed by people with first-hand experience of liver disease before publication.
britishlivertrust.org.uk/in...
britishlivertrust.org.uk/in...
We also have information about support for liver disease patient's mental health, available at the following link.
britishlivertrust.org.uk/in...
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 10am to 3pm on 0800 652 7330 (excluding bank holidays)
Best wishes
British Liver Trust
HiGood advice and I have used the Liver trust nurse advice line to good effect. There seem to be at least 3 categories of individuals on this forum, those with confirmed cirrhosis often waiting for transplant, those like me were US has shown up a 'shiny' liver with fat infiltration high ELF score in the words of my consultant 'on the cusp of cirrhosis' etc. and then those who are still waiting for a diagnosis.
At each stage there is mental anguish, in my case this was also affected by 'symptoms' that suddenly came on. Did I really imagine going from 130 kgs to 136 kgs over night with my abdomen distended? Did I really imagine the hot flushes and loss of sex drive in 48 hours?
The brain confusion?
The ELF score came out of nowhere, I suddenly went crazy exercising and I wonder if this could have made me ill?
I wonder if an on line zoom meeting for people suffering with the mental impact of fatty liver might help?
I would be happy to share my experience of going through an extreme experience with this whole issue.
Learning to live with the 'uncertainty' of NAFLD is key, enjoying your life and having people you care about around you are key. Exercise and diet are of course essential but joining a gym etc felt like to much of an imposition/cost. Iwould highly recommend walking football (I believe there is also such a thing as walking netball) it did not lead to great weight loss but it did lead to me going from being almost diabetic to not even being pre diabetic I also swim in the sea (it is just outside my house fortunately).
The fact that my system including my liver is now regulating my glucose level and insulin is a good indicator of improved liver function.
My last fibroscan was August 2020 with my Kpa down from 10.8 in May 2019 to 9.8. And my infiltration down from a massive 348 to 308. I am scheduled to have another one in August 2023. I am hoping for the best
regards
Iro
Yeah my lft results showed my alt as 74, my ast as 37, and bilirubin was borderline. All other lft markers were normal. When they did my US it came back as course, dense fatty infiltration. Doctor said that the full report explained that the us showed fatty deposits and my lft was expected and that the blood scoring suggested very little chance of anything worse than stage 2.Only other thing out of whack was my IGa level which was 4.9 but docs arent worried and it can be naturally high in some people especially if obese (fat increases the general level of inflammation in the body and my bmi is 43)
Hi. I have stage 4 Fibrosis and I have taken months to come to terms with it. I suffer from anxiety too and I slipped into a severe depression. The worst thing I did was to Google it and I thought that I wasnt long for this earth. I was so frightened. I found this forum and it has helped me no end as I no longer feel alone. I now take the view that what will be will be but I have changed my diet, I don't drink anyway. I'm 66 years old and a widow but I'm determined to keep strong and live for the day. No one knows what's in front of us but worrying chances nothing. So take it from someone who has been there, just enjoy every day and look after yourself x
Hi Robert, Thanks for the comment. I think part of the anxiety side of things is just that they are leaving me to it for 6 months before redoing my LFT's (Did the same for my mum when she had a Fatty liver as well) then I think they check yearly. Suppose I just have to keep in mind that blood scores show an indication of very little chance of significant fibrosis and stop worrying so much and try and find things to do to take my mind off it.
Totally understand. For me walking, walking, walking helped. I walked till my body and mind were tired. Try and trust the doctors. If they are not stressing you don’t need to. I don’t mean ignore it. Treat it seriously. Spend your time researching great healthy habits and recipes not googling symptoms. If you can’t settle your mind speak to your doctor about what other testing you could have to settle your anxiety. What would that test be? What would it take? For me I pushed for a fibroscan. For you it might be an ultrasound. Even if you have to pay privately. I don’t think you need any test but I do understand you feelings.
My G.P’s were right. Yes I Pestered several of the poor G.Ps. I had no to minimal fibrosis. That fear though keeps me looking after my body.
HiI attempted suicide because of an ELF score,Dr Google and what I interpreted as the symptoms of cirhosis. In the end I was sectioned and spent 3 months in a very secure hospital.
Now almost 4 years later I am in generally good health (I still have a fatty liver), all my LFTs are within range my pee looks like mineral water and my poos are deep brown. I was pre diabetic 47 but now clear 40. I put my family (3 children now over 18 and my wife through hell) and I am deeply ashamed of that. I enjoy life and cannot believe that I was capable of sticking a knife in my chest and then swimming out to sea to drown myself!
Stay positive, the NHS has excellent support for NAFLD in my experience. Eat well, exercise but do something you enjoy. I play walking football twice a week and sail my cruising boat far and wide.
Keep in touch, contact me direct if you wish, I do not want to see someone else plumb the depths like me
regards
Iro
Hello there.....I just wanted to say,I completely understand where your coming from...it can be such alot to take onboard,it was for me,being told I had esld,cirrhosis......it may sound so simple, but walking has helped me so much.....just to stand and take in a stunning view.....can take you away from the situation for a moment.....Chris
Thanks for the comments guys. Been feeling a lot better the past couple of days after managing to get out and do some walking. I think it might be also something to do with the fear of being wrongly diagnosed, because 6 years ago just before my 21st birthday, I was diagnosed with a DVT at the back of my left knee, but I had been several times beforehand over a couple of years to my doctors, because it kept flaring up in pain and they just passed it off as an injury. But turned out I had it for that length of time, and the only reason I went back was because my leg suddenly inflated and went very red. So might be a bit of layover anxiety from that as well.But yeah, oddly enougth, my Liver function was showing up as not normal, but they did a CT scan to check for causes of the DVT and it all came back normal, but for a couple of years, I did stop drinking and then all my bloods since then up till my LFT's had been normal. But since the start of lock-down I must admit my diet hadn't been very good.
And Iro, thanks for the offer, If I fall down the rabbit hole again I will get in contact.
Hi everyone reacts differently when it comes to bad news of health. At 18 ( just had 2 kids) I was diagnosed with liver disease, diabetes, underactive thyroid and herpes. I also had an addiction to painkillers. I was suicidal! I didnt even think about my kids at the time... I was going through a very abusive marriage and was moved away from everything I knew. I couldn't cope with the changes... I abused my insulin many times hoping if I took alot I wouldn't wake up next day.
I saw a therapist for 4 years. He really helped me make sense of my feelings and emotions. It was my 'me time' to say how I felt. Eventually I came out stronger and wanting to get through life and enjoy my kids.
After this I was diagnosed with DME ( eye damage) and nerve damage... I was constantly getting thrush and water infections and I just used to laugh- everytime I saw a health professional it was like " what's next? What else are you going to throw at me?"
When I caught covid I was in hospital with a blood clot on my lung, liver inflamed and in need of oxygen. I saw things on the ward which has affected my mental health. My ex saw me being ill as an opportunity to ' get back in the house' and after 3 days I discharged myself for my kids because my ex moved himself back into house in a bid to ' look after me and kids' I was I'll for nearly 3 months. I had long covid and a year later cirrhosis of the liver. When I found this out I blanked it out and tried to focus on my sisters " wedding of the century" it wasnt till I noticed I was having symptoms... symptoms I hadn't had before. I couldn't get out of bed. I went gp for some tests... looked up my results on the NHS app ( docs haven't informed me of results yet so if wasnt for NHS app I still wouldn't know) and I freaked out! I tried to Google what this meant and what that meant and I'm scared. Rang gp yesterday to get some insight of my results and am still waiting...
I turned to this site over weekend. I wasnt sure whether to post because I can't take criticism. I know I've handled things bad but understandably, people react to news differently.
So to your post... your acting normal. You know your body and you know something isnt right and you get scared. Everyone on here are at different stages, have different conditions... many have already been through worst, come out other end, still ongoing, still worried, still trying to figure it out, still thinking the worst, still needing support. One bit of advice I can offer is dont give up! You will experience different feelings and emotions and it's normal to get scared, angry, anxious, depressed, etc... but you will eventually get to being positive, finding ways to cope, have support, find hope!
I hope your ok. You will get through this and there will be other ways to able you to still live life to the full! ❤
Hi and thanks for your comment. Ive sort of got over the initial shock thanks mostly to this site and everyones comments. I went on quite a long walk the other day where i felt like just going on and on and while its knackered me, it sort of woke me up a bit. Ive also managed to lose a bit of weight so that has also helped. And ive blocked the sites i was reading from incase i get the urge to look or start to panic.
I was exactly the same. I thought the worst and was trying to find answers online so I had an idea what I was up against.It wasn't till I read other peoples experiences on here I thought " google doesnt mention that!"
Saturday i was a wreck! I posted, then sort if regretted posting because I'm usually quite ' personal' and dont like to be dramatic but I actually felt better for writing down how I felt. A few messages wasnt supportive at first and I nearly came away from this site- but quite a few went out of their way to listen to me rant on. They didnt complain when I thought I had been selfish for writing all about me and not asking about them. They listened and understood. That's when I realised I may not know these kind people but most have been in my shoes.
I feel I'm declining. From a gym freak to more or less house bound... I do feel useless but I know I'm really trying to do more than what my body will allow. I may end up sleeping all of next day but I'm not one to whine and say " I cant" unless I really cant.
Keep positive and if you have what i call ' a pity moment' so what??? Have a cry, rant, throw something. It's not always easy and obstacles will get in the way. It's ok to not be ok- just as long as you think to turn to us before your mind thinks too negative because as I've noticed in 3 days... its good to talk about things- it really helps! ❤
I’m there with you. Anxiety is a disease. I have the same problem/ the internet is not our friend. I’ll say a prayer for you.
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