I had hepatitis c, I had treatment and I was cured of the virus during the first covid lockdown.
I've just had an ultrasound and fibroscan andnow I've had a letter from the hospital. It is as follows..
" I now have the results of the ultrasound abdomen with me. The ultrasound of the abdomen shows increased echogenicity of liver which is in keeping with diffused fatty infiltration There is also evidence of splenomegaly suggestive of a degree of portal hypertension There are some gallstones seen in the gallbladder as well but no evidence of inflammation of the gallbladder. She has also had a FibroScan done which gives a median value of 14.5 kPa which is in keeping with F4 fibrosis Therefore, she would require regular follow up in the hepatology clinic (six monthly) for surveillance"
That is it. Nothing else, no phone call. Am I dying?
Also I should probably add that I lied about drinking alcohol. I told them that I only drink occasionally but I drink about 19 units most evenings. Which I am now going to stop. Could that mean it's even worse than what the letter says?
I think it's awful that they don't call you with these results. All I have is a copy of the letter that the hospital sent to my doctor.
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DoingItDifferently
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Hey Shellbee! If you keep drinking it’s likely you will decline quickly. I was at 18.7 kpa from alcohol over 2 years ago. You prob shouldn’t have lied about the alcohol, but it happens. You may want to tell your specialist. It’s possible your liver was inflamed when you had the fibroscan which could have given a higher reading than what it actually is not inflamed. Quit drinking! If you don’t quit you will end up in terrible shape it’s not a matter of “if” it’s a matter of”when”. Don’t be a statistic and get help to quit if needed!
For cirrhosis from alcohol I think you are right at the tipping point and maybe a little below if the fibroscan was all that was considered.
I agree that a letter should NOT be how you find out you have liver issues. I will say that it happens in the USA that way as well sometimes. Try not to get too anxious because while it’s not awesome news it’s not nearly as bad as it could be. However if you keep drinking you are going to regret it very soon. I’m saying that as a former alcoholic. You have a pretty good chance of dropping below f4 if you quit damaging your liver. I was not fortunate enough to catch it earlier like you and neither were many on this forum.
Do you mean I didn't catch it early?Am I at the end stage then? Or is reversible. I'm 35 years old and I've only been drinking for about 3 years. I don't understand any of the letter. I do feel ill a lot but I'm not yellow. I've also noticed pain in my right side but that wasn't there until I had the ultrasound, he really Pushed it in hard but that was months ago and its still tender.
I just want to know what is going to happen and what to do about it.
It’s best to chat with a specialist. Your kpa is not that bad. It goes up to like 60 I think. It’s only one test and can’t be used to say whether you have it or not. I was 38 when I found out I had cirrhosis. I think your kpa is low enough that you might be good. I’m sure Katie will chime in soon. She knows way more than most on here.
I don't think I have a specialist? No one from the hospital has told me anything. I would like to know, you know.
I forgot to mention so I'll just add that I did manage to speak to my GP briefly, after I called a few times worried about the letter. He didn't really tell me anything other than what is written on the letter.
Also I am very overweight really big. The weight just piled on and I couldn't stop it, it stopped me. I don't know if this has anything to do with it. And would that make me ineligible for a transplant?
Being over weight is even harder on the liver.... however nothing hurts the Liver more than drinking and drinking makes you not care about losing the weight. If you are young that is really in your favor. look at the bright sides of all of it and being young is the very best time to make good changes for your health. Good Luck.
I'm going to buy an exercise bike as soon as I can fund it, which will be quicker now. I've drank my last 3 cans today, there is no more alcohol in the house. I don't like leaving the house so this will be the only time that that has ever helped me. I can stop. I was told by some people not to just stop as that can be dangerous. I'm not sure they really know anything though, so here goes.
hi, no you’re not dying (well technically we all are!) anyway, sounds like you have a fatty liver with the other comments. My cap is 12.7 and I have gallstones and fatty liver, fibrosis 3. Stop the drinking, diet and exercise and you can reverse this.
No your not about to die but take away the sugar coating others have replied with and the letter puts you firmly in the chirrosis bracket.Theres no treatment other than quiting booze and believe me that's the best treatment in the world.
Go back to your Dr, tell them you lied about drinking (they don't believe you anyway, their not stupid) and ask for referral to a liver specialist.
Survelance etc will stay the same but ongoing advice will be better than GPs.
Well if you lied about drinking you should have been honest because if it is down to drink I was 19.5 fibroscan an was told I was borderline cirrhosis if you where 14.5 and it's due to alcohol you might not have cirrhosis yet because theres 2 different scores one for ARLD and 1 for NALD I dont know why it is your better talking to your consultant and be honest with him
Hi ShellbeeMy score was 28, due to long term hep. I read 19 units a day, if so. I suggest you tell your gp and organise help and advice. Not being judgemental (ex addict) you need to stop drinking. Be honest, seek help and advice. Remember worrying has never changed the outcome of anything. Just being here makes you special. Be nice to yourself.
I won't sugar coat it. As others have said you should have told them about your alcohol use as they wouldn't have had the full picture of what was going on.
As for where to go from here you need to stop drinking full stop and you said your overweight. You need to lose the weight. It's as simple as that.
Change your diet and go for a daily walk. Weigh yourself every week on the same day before eating. Buy a £15 scales with an app from Amazon. I would also highly recommend a fitness watch that counts steps and calories burned as a minimum. I went from 17.5sg to 14.2st from cutting out takeaways and eating better and going for a walk everyday. It's surprising how much the weight drops off.
I think the key question is to know how long have you been had HCV. (since childhood?). Of course when you have HCV drinking can only worse liver damage (also weight issue - high BMI). Anyway great you are cured of the virus so no further damage from this side. Good luck and see hepatologist.
As all other members have posted, please stop drinking. I also agree that you should have been totally honest about your drinking habit. You drink far too much every evening and this must stop immediately. Please take heed and lose weight along with a daily exercise regime. The BLT site has excellent advice on healthy eating and other issues related to excessive alcohol consuption. You are in line for follow up screening and be prepared for this as it will be "truthful". Take care and trust all will go well for you in the future - everyone is entitled to a good life if the correct steps are taken to go forward.
I have told the GP it was the first thing I said when I spoke to him. He just said stop drinking.And I am going to stop drinking. I have already cut 30% from the day I found out. I just wasn't sure if it was safe to just stop? I can stop drinking, I've battled addiction after addiction, which will probably shed some light on where the hep c virus came from. Time frame I'm not sure now. I thought that it was only a few years. It could be anywhere from 2008. But most likely after 2016. I'm also prescribed a high dose of methadone since 2019. And I know that will also need reducing.
The weight loss I'm not so sure how I can get it off. I have been trying. My bodyweight doubled when I stopped using drugs over a period of about 12 months, I got turned down for weight loss surgery because of my methadone prescription and because apparently id been diagnosed with fatty liver and not told. Even though id not even had a scan or my liver looked at in any way at that time. I don't really eat much. I feel sick every day until about 4pm and then i have a meal replacement shake and I don't usually eat until about 7, if i do eat. Yesterday i ate nothing, not even a shake. Exercise is nearly impossible as I have a back problem which means I'm never not in pain.. this was the first step into my latest relapse. I was prescribed a bag full of pain relief for years after i left hospital, which included 4 opiods and then without warning i wasnt prescribed them anymore. Even with the high dose methadone I'm on now I'm still in pain always. And I don't just mean it hurts, I sometimes can't move for a while. I am hoping that maybe cutting alcohol will cut some weight.
I know that I can't get rid of the weight without help. There is no help.
I worked with a dietitian for over a year. And lost nothing because it wasn't what i was eating. I did lose 16kg when I started the meal replacement shakes. And that has stayed off but it's been about a year now and no further changes. I know this isn't the place to talk about weight loss but I just need u to know that I have tried and I am still trying.
Will stopping drinking alone be enough on it's own?
From my experience, it will not be enough to just stop drinking. You need to lose at least 20 percent or more of your body weight, but even 10 percent will help. To lose weight, I do intermittent fasting. You can google it to see the science and find a schedule that's right for you. As for what to eat, eat more plant-based. Eat less fat and sugar. Even a little less goes along way. And add walking, stretching, and getting plenty of sleep at night. My last piece of advice, talk to your doctor about your over-the-counter pain relievers. For me, acetaminophen had to be completely stopped. Take care -- you can do this. Don't wait until Monday; start now!
If you 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)
Hi ShellbeeI can only echo what the others have said about alcohol. That's a lot of units and weight gain being wracked up daily.
I also agree about the hospitals sending out letters, or in my case I never got a copy of my ultrasound results. I had to read them online. It leaves us very much in limbo with no clear answers and a lot of worry. Ask for a referral to a specialist.
Wow you have a lot going on. I don't post much as all the advice this group offers is fantastic. I'm 44 with fibrosis 3 from scan but only told via letter( like you). I'm lucky as I had alcoholic hepatitis last year, hospitalised. In HDU and spent 54 days in hospital due to sepsis on top of it but I was detoxed in hospital and have stayed off it (over 15 months). I scraped avoiding cirrhosis by a whisker but it is a wake up call.
I'm also a nurse and worked on liver ward (ironic as I ended up on that ward!)
There is help if you are ready for it, please ask your gp for help with detoxing safely. You will need support but please be honest. I was drinking 30 units a day, told the truth from the start so all specialists knew the whole story.
No one on this group judges you they really don't... we are all human.
Keep believing in yourself, you've asked for help and that is awesome!!
Thank you to everyone for sharing with me and taking the time to reply. I can do this. I have to. Thank you for your support and all the best to everyone x
I have so many questions I don't know where to start. I know infections are bad. I've had abscesses in my mouth for years now, they never seem to go away. I don't have a dentist.
I also have anxiety that's been awful lately, started before I got my letter. I wake up in a morning with a crippling fear and I don't know what I'm scared of so I just wrack my brains and decide on something to obsess about.
I shake all the time. I can't walk to the shop anymore without feeling like I'm going to collapse. I sleep constantly or can't sleep. I feel sick and burp all day until evening.
I only go to the toilet a couple of times a week, sometimes a little bit more just lately. Though I've had a few accidents over the last few months. I have had lactulose in the past but it didn't seem to do anything.
I feel like now everything is just clicking together and it's not soon enough.
I can't just speak to my doctor. He doesn't listen. I've tried believe me, but after being shut down so many times I stopped and started thinking that I was the problem. They tell you not to read online but they don't give me any information.
Sorry you're having a tough time. Sounds it sounds like your liver has taken a bit of a battering over the years and it's been under attack from multiple sources - drugs, booze, Hep C infection and fatty liver too.
Your scan report would seem to confirm that it's gotten to a stage of fairly advanced scarring.
End stage liver disease is just another name for cirrhosis or F4 fibrosis (stage 4 on the fibrosis scale). End stage in no way means end of life it just means it's reached the last stage of fibrosis which goes from F0 (no fibrosis), F1 (mild fibrosis), F2 (moderate fibrosis), F3 (severe fibrosis with bridging which sometimes also gets labelled incomplete cirrhosis), F4 (Cirrhosis). (My hubby was diagnosed with decompensated cirrhosis in April 2012 - still alive and kicking and just back from a holiday where he and I did over 380 miles of mountain biking on our ebikes so life with cirrhosis is possible).
Cirrhosis itself can then exist in two forms :-
- compensated where it is still able to complete the most important of it's 500 jobs although probably not all so you can still have some symptoms at this stage but not particularly life threatening.
- decompensated where it is severely struggling and can't do even it's most important of jobs and this is where you see things like ascites (fluid build up), bleeding from varices and the signs and symptoms of liver failure.
The key thing is to try to keep the cirrhotic liver in at least the compensated area - good diet, no booze, exercise and the fewer attacks on the liver the better.
No question is a silly one so if you do have questions then feel free to fire away, we were all new to cirrhosis/liver disease at one point so we've all had to work through the stages.
The letter states you should be reviewed in liver clinic 6 monthly and you certainly need scans and bloods done each month. Depending on what treatment you had for the Hep C then these scans should have been put in place already as some of the treatments for Hep C (along with cirrhosis) can slightly increase the risk of liver cancer so early discovery can lead to timeous and successful treatment.
I haven't had bloods done for a long time. Do I have to have them every month? It takes months to get an appointment for them. I'm booked for the end of July and I booked those last month.
I had epclusa for the hep c treatment. Three months worth.
My hubby hasn't had bloods done since February, he's due a liver clinic appointment in July and will get some more done then. It's usually 6 monthly to monitor cirrhosis.
I have been actively trying to lose weight for a long time now and I am not sure if my shakes and supplements are safe?
My shakes have green tea extract as one of the last ingredients.
I take CLA a weight loss, fat burning supplement. I've been taking it for about a month. I've looked online and saw mixed results. Am I okay to take this?
I also bought some thermopro for when I get my exercise bike. I don't know if that is safe to take either. It also contains green tea extract
You need to be very cautious with over the counter supplements and alternative remedies some of them contain substances which may further stress your liver and you are far better to follow an appropriate eating plan rather than filling yourself with more chemicals via supplements. Green tea extract has been found to be a trigger for some auto immune liver disease cases for example.
No one here will be qualified to say what's safe and what isn't plus if you are taking or planning to take various different products they may have adverse affects if taken together.
Ok thanks. You been extremely helpful. I will stop using them. My diet is pretty healthy really. I might try the intermittent fascinating that someone mentioned. I don't know what else I can possibly do.
I'm gutted that all this has come about when I have been working hard to make myself a better person.
I already quit smoking and now I vape instead. Is there anything wrong with that? I also vape cbd as I find it helps with pain. Is this an issue?
I'm sorry for all of these questions I just have no one else to ask. My Dr just told me to stop drinking.
Intermittent fasting with cirrhosis isn't great as you still need to fuel your body or you will burn muscle instead of fat (it's easier for your damaged liver to process muscle than fat for energy).
Sorry to say it but vaping is also not good for your liver, full of chemicals and has been proven to lead to fatty liver in lab tests plus isn't great for your lung health. Vaping CBD also may be an issue if you do progress down the line towards transplant - with a history of prior drug use you want to stay as far away from drink and drugs as possible.
When you do get to liver clinic make sure and ask to see a specialist dietician who will give you a proper work up as regards where your weight and body condition is now and what is appropriate for your stage of liver condition.
Which is worse, smoking or vaping? I haven't been to a liver clinic. My drs aren't good. They didn't even tell me I had fatty liver. I found out when I tried to get weight loss surgery, they found it in my records. If I had known I could have made changes and I would have done.
I feel a bit cheated and mistreated.i don't believe my doctor would have called me. He ignored the last letter from the hospital too. It said to change my medication, I called him about it about a month ago and he said he hadn't got round to reading it yet and that he would call me back. I never got that call.
I went to him so many times with feeling sick and tired and he just kept prescribing omeperozal and things. I believe he just thought that I was a junkie after meds so I don't matter,
I have reduced the nicotine from 18mg to 3mg so I'm on the right road. I was already battling my demons and I thought I was getting somewhere. I quit drugs and nicotine and rubbish food, alcohol was next on my list.Thank you
You are doing brilliantly, it's a massive life change you are going for and you are to be applauded for trying to change your life around. Rooting for you.
I am trying a plain calorie deficit diet. Added oily fish, salads, berries and other fruit and veg. Yes I have a few naughties but not all the time and to be honest, some I have gone right off.Don't push yourself to lose with shakes because when you come off them the weight may creep back on.
I do eat more protein than anything else. I have no appetite now I have completely stopped drinking but it has only been 2 days so I'm thinking maybe that will change?
I weighed myself yesterday and I've lost 23lb since the 24th of may. That was when I started taking the supplements, which I have stopped now until I can find out if theyre harmful.
I'm still very overweight but I'm worried that that much lost in such a short time is a bad sign.
I am very overweight due to hypothyroidism, Fibromyalgia and not being able to move much. However, since 2nd May I have lost nearly 6kg by just calorie deficit. Find a calorie deficit calculator online and it will ask your current weight and tell you how many calories you need to maintain your current weight. As long as you come in below that, the weight will come off. You may be on not enough calories to keep you healthy.
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