My liver: Hi I've had chirosses for 1... - British Liver Trust

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My liver

Miles7 profile image

Hi I've had chirosses for 17 years, is the only way to find out how chirotic iris is by a biopsy?

57 Replies

If you've had cirrhosis for 17 years I take it you are having regular (6 monthly) ultrasounds and blood tests. Cirrhosis is cirrhosis, once you have it then it's about dealing with the symptoms it brings along with it.

Katie

Miles7 profile image
Miles7 in reply to AyrshireK

Yes had my varices done few times in that time I'm 120mil a day propranolol a day .its hardwork getting advise as my liver consultant has changed in those years .I haven't touched a drop of alcohol in those years but my liver consultant even said I would be OK to have a few cans a week lol I found a bit strange. I need to sort my diet out aswell I've been advised to try vsl#3 probiotics, do you know anything on them?any help and advice would be great thanks. Please sorry about my spelling it's shocking lol

mncold profile image
mncold in reply to Miles7

Hi Miles7,

This is just in reply to your question on vsl #3 probiotics.

My husband has cirrhosis of the liver, which is why I'm on this site.

I was recommended to take vsl #3 while I was having abdominal radiation treatments. The radiation oncologist said there were studies that suggested

a better recovery from the radiation with it. I took the vsl #2 for a couple of months and don't know if it helped or not, but had no problems while taking it.

My husband's liver doctor told him that N/A beer & wine were okay, but not to

start drinking again because of the possibility of restarting drinking, which would kill him. In 2015 he was taken to the hospital in liver failure and kidney failure.

The husband is still drinking just N/A beer.

We live in the U.S..

Best of luck to you,

Mary

p.s. Husband has never had a biopsy - just ultrasounds which show a lumpy liver, a sign of cirrhosis, along with blood work every 6 months .

Miles7 profile image
Miles7 in reply to mncold

Thank you for your reply.hope he's on the mend .yeah they told me I got it by the shape and my bloods. But I don't think you know how cirotic it is without a biopsy?like I said 17 years I don't get anywhere or much help with them.i suffer with constabation and I think probably ibs so I think that's the main reason why he told me to take them.but I checked them out online and its £45 for 30 sachets grrrr lol and they don't do them on prescription.does he take 1 sachets a day yeah?

mncold profile image
mncold in reply to Miles7

Yes, I saw the cost of the vsl #3 and went with the lower ones #2 [I think] - $60 + for a bottle On Sale!! I bought & used one bottle. I don't know how well they worked, but they have so many more millions of stuff than the others I looked at.

But it was suggested to me by my radiation oncologist for abdominal radiation treatments, so not sure how well it would work for you - you could/might try one bottle and see how things go ?

Take care,

Mary

Miles7 profile image
Miles7 in reply to mncold

Thanks for that .I got ibs get swelling and stuff .my liver consultant told me about them.ive got back to him asked if I can have something on prescription as their abit expensive.im just waiting for him to send over to my gp. I'm not to sure what ones I'm getting if they are the vsl

I agree with Kate she knows her shit!!! Excuse the language but she is very knowledgeable.Everybody is quite different in showing symptoms I did all the tests some showed cirrhosis some showed fatty liver some showed mild scaring and the biopsy cleared me of a health liver once I quit drinking and lost weight and lost 90lbs my type 2 diabetes was reversed and my blood pressure was normal and I was taking off all 10 medications so eating and exercise and not drinking saved my life.

Nice 1 mate.i would love a biopsy to see how much chirrosis is there but my consultant don't recommend I have it

After 17 years why do you want a biopsy now?

Miles7 profile image
Miles7 in reply to hells456

Umm it's not now I've always wanted 1 but not really mentioned it. I'd just like to know how much is there

Fibroscan and MRI/MRE are the best alternatives to biopsy. To quote NASH2 "The MRI MRE is the gold standard for cirrhosis. It looks at the entire liver and gives measure of fat content and fibrosis. The fibroscan measures a column of liver that is about 2 inches deep and gives a less precise measure but it is a useful screening tool and can definitely tell you if you have extensive fibrosis. The MRI is more expensive but worth every penny. I corresponded with the GE engineers who developed the system and they sent me their qualification tests where their results were calibrated against autopsy results. Correlation was very high so my advice is get one if you can."

FibroScan is a noninvasive test which pretty much replaces biopsy for determining the level of cirrhosis.

Miles7 profile image
Miles7 in reply to mantana

Yeah I had 1 of them not so long back.the nurse who did it said its fatty and there's not alot of room for error. But I told that to my liver consultant he said its bullshit lol.so I'm confused lol .I have started dieting though for about 2 months cut out the sugar

mantana profile image
mantana in reply to Miles7

Reversing fatty liver is hard, but it's possible.

Changing diet, lowering calories intake, drinking more water, green tea etc. are the keys to start with, as is more exercise (using bicycle if possible, walking more rather than driving, standing more rather than sitting - that all makes a little difference whenever possible).

I myself had mild fatty liver for years, but on the last ultrasound, they did not mention it anymore - I guess I'm on a good track.

Miles7 profile image
Miles7 in reply to mantana

Yeah I started the gym about 2 months ago lost about a stone.ive got a massive sweet tooth so giving up my junk food was harder than give up alcohol 17 years ago lol

laura53923 profile image
laura53923 in reply to Miles7

Its normal when giving up alcohol to crave sugary foods. Continuing to eat too much sugar you are merely replacing the alcohol with another sweet product which your liver really could do without. Go for fruit rather than sweets, chocolate, cakes, biscuits etc. Best wishes

Miles7 profile image
Miles7 in reply to laura53923

Thank you

Imagining, blood work, symptoms, history all make for a working diagnosis. My understanding is that a liver biopsy is required to confirm diagnosis.

Miles7 profile image
Miles7 in reply to deanw41

I never seen to get information I need even after 17 years it's hard work

Miles7 profile image
Miles7 in reply to deanw41

I've never had a biopsy but they know I got chirrosis

deanw41 profile image
deanw41 in reply to Miles7

I know. I feel like I have to pull information out of them.

laura53923 profile image
laura53923 in reply to Miles7

My husband didn't require a biopsy either. Maybe they don't need to perform one when other tests and symptoms are sufficient proof of cirrhosis if it's in advanced stages. Less intervention is always best.

AyrshireK profile image
AyrshireK in reply to Miles7

My hubby only had a biopsy to find out WHY he had cirrhosis not to either confirm he had it or stage his cirrhosis. (Hubby has auto immune liver disease related cirrhosis so they had to look at the liver on a cellular level to discover this - through symptoms present and scans it was obvious that he had cirrhosis).As earlier mentioned stages of cirrhosis are determined by the symptoms present. If doctors KNOW you definitely have cirrhosis then biopsy isn't going to add anything to the diagnosis and it's very invasive with a high risk of bleeding in someone with cirrhosis and blood clotting issues that frequently go along with it. Doctors won't do one without good reason due to the high risk factor that goes along with it.

Katie

Miles7 profile image
Miles7 in reply to AyrshireK

Thank you.yeah .see its mad after 17 years I'm probably getting better info and understanding than all these years with doctors

Miles7 profile image
Miles7 in reply to AyrshireK

Hope your hubby is OK now .is there anyone else on this who lived with chirrosis for years ?

Are you having any symptoms? If all scans say you have cirrhosis and you have varcies, no need for biopsy, just keep doing what you are doing because it seems to be working.

Its odd that the scan showed fatty liver yet your doctor said cirrhosis. I’d want that explaining. I asked for a biopsy and I was told “no, its too invasive and we can see from your results and the fibro scan that it is cirrhosis”. The fact that I have acites and varices, although the varices was only 2 and they have gone of their own accord. My biggest thing for the scan was to find out why I have cirrhosis. There has always been doubt with the doctors if it was ever caused by alcohol, it is also a doubt I have. I had an infection in my lungs at some point but it had cleared by the time they found fluid on my lungs and then the same day found the cirrhosis. The fluid isn’t related but what caused it they think was. Anyway I suppose it doesn’t matter but it would stop them doctors that roll their eyes when they find out you have cirrhosis 😟

This test is pretty good at telling you if your liver problems are due to alcohol -

mayoclinic.org/medical-prof...

MLB_77 profile image
MLB_77 in reply to kensimmons

What’s mcv?

kensimmons profile image
kensimmons in reply to MLB_77

MCV - Scroll Down.

ama.lu/docs/biomarkers_0709...

MLB_77 profile image
MLB_77 in reply to kensimmons

Wow thanks! Great article.

kensimmons profile image
kensimmons in reply to MLB_77

My pleasure!👍

MLB_77 profile image
MLB_77 in reply to kensimmons

My ANI said -3.366. Is that normal range? I’m not seeing anything about what is normal/abnormal

kensimmons profile image
kensimmons in reply to MLB_77

It should be right on the screen, scroll down a bit.

Please note this does not show whether or not someone has any kind of liver problems, just whether or not any issues that exist are due to alcohol. It's a useful tool for doctors because they can adjust drug dosages, know whether or not rehab is needed, etc.

Miles7 profile image
Miles7 in reply to kensimmons

What drugs?is there actually drugs for the liver?I've never had anything. Thiamine propranolol all I've been on

kensimmons profile image
kensimmons in reply to Miles7

No, I was just generalizing about how a doctor might treat an alcohol cirrhotic differently in general regarding drugs, or anything for that matter. For example someone with an alcohol problem might be considered as having a tendency to "get hooked" on stuff, etc. Again, I was just speaking generally. I don't know of any liver drugs but doctors are looking all the time.

Miles7 profile image
Miles7 in reply to kensimmons

Or sorry I get you now lol.i was in hospital for a .month with some sort of alcohol substitute in my drip .they can't take you completely off it or my body would shut down .something like that lol.i can't remember much about hospital. But my mum told me my family come to visit me and I was shouting at them telling them to go away lol and that is not me 1 bit I was cringing when she told me.but liver doctor said to my family my head was gone from toxins .but luckily I clicked out of that

Miles7 profile image
Miles7 in reply to kensimmons

Or and vitamin compond but that was took away about 3 years ago

Hi MilesLike lots of people we go through different procedures that are unpleasant. I have been informed that a Liver Biopsy is quite invasive.

I enjoy interaction on line, but not a great fan of looking up everything on anything.

DD666

Miles7 profile image
Miles7 in reply to DD666

Yeah I know mate .I read up alot of stuff to try help my liver like these detox adverts but when I asked my liver consultant about them he told me to stay away from them

Also, you should continue to have regular fibroscans and/or MRI/MRE depsite any diagnosis of fibrosis/cirrhosis. It will give you a reference against which to judge whether your lifestyle is helping the condition to improve or whether it is worsening. It gives you something to work for.

Thank you

Hi Miles, I'm not sure what you're hoping to learn from having a biopsy? As Katie said, cirrhosis is cirrhosis. If you look at some of Katie's earlier posts on the search button, she has explained the difference between compensated and decompensated cirrhosis. In the UK, once you have established cirrhosis, it is standard practice to have a regular ultrasound every 6 months to make sure that you don't develop cancer of the liver. You should also get regular endoscopies to check on whether or not varices are developing.

They generally don't perform a biopsy unless it is absolutely necessary and in your case it isn't. What I mean by that, is that it won't change the treatment that they are giving you. Whilst a biopsy has been seen as the "gold standard" it does only sample a small section of the liver and it won't tell them anything they don't already know. It carries risk and you will be none the wiser after it.

You are taking propanolol, which is a beta blocker. The beta blocker will lower the pressure going through the main vein into the liver. This is because once you have cirrhosis, there is a good chance you will develop portal hypertension (high pressure in the main vein going into the liver) and then because of this varices are likely to develop- which can lead to a bleed (obviously to be avoided).

As far as Consultants are concerned, cirrhosis means that part of the liver no longer functions. As long as the rest of the liver has good function, then they are happy. They can check good liver function through your blood tests. In the end it doesn't matter if 10/20% or more does not function. What matters is that the rest does.

Consultants don't recommend detox trreatments because generally they are shown to damage the liver, since everything must be processed by the liver. It is difficult to be sure what you buy has the right amount of active ingredient (is from a good source) & is not mixed with other harmful stuff etc etc.

I don't know if this helps, but if it doesn't, I don't know what else to say, apart from good luck. Oh and stay off the alcohol, because if you needed a transplant, in the UK you have to have been off alcohol for 6 months to be considered for the list.

Miles7 profile image
Miles7 in reply to CarpeDiem11

Thank you .yes all of that made sense and I appreciate it.yes I get all that done my doctor seems to be abit no with it lol .a nurse on the fibres and said not much room for error bit my consultant said that's rubbish.i hasn't touched a drop of alcohol for 17 years so hopefully il be OK to get 1 if needed.

CarpeDiem11 profile image
CarpeDiem11 in reply to Miles7

Hi Miles7, I'm not very well up on the alcohol stuff I'm afraid, because my condition is autoimmune. However, I'm pretty sure that you can't even have one if your liver was damaged through alcohol in the first place. (I don't know if it was?) There are plenty of other posters though that will be able to tell you if that is the case though: Laura 53923 and Katie are two who will most likely know. Glad it all made sense.

The only place that I know of that scans the whole liver is Germany, so that is the only way you would find out how much of the liver is damaged or when they open you up for surgery for something else. I have had all the scans & more than one biopsy (for surgery purposes) & they don't all give the same answer. In the UK, they don't stage cirrhosis. However, my treatment is based on my symptoms and bloods anyway.

All the best for your future health.

Miles7 profile image
Miles7 in reply to CarpeDiem11

Thanks for the reply. I'd never have a drink again even if I could I've been soba for 17 years now.drink done it to me .sorry to hear about your condition.

CarpeDiem11 profile image
CarpeDiem11 in reply to Miles7

Sorry to hear that the alcohol has affected you so badly- this condition however it is caused, is not nice to live with. I hope you are getting good care and dealing well with however it is affecting you. Lockdown hasn't really helped anyone- because it has meant so many people are having to wait longer to get the answers they need to put their minds at rest. This is why these forums can be so helpful.

All the best. (I've just looked at your profile- you were very young when you gave up- well done for staying sober, it can't have been easy at a time in your life when everyone was out partying/ socialising).

Miles7 profile image
Miles7 in reply to CarpeDiem11

Thank you.yes I was only 26 going in to hospital they said the damage I done at so young was unbelievable.the told my family I had 5% chance of pulling through I was in hospital for over a month.i didn't know what damage I done,I still to this day understand how alcohol took over my life.i was fit played football for West Wales.i wasn't eating and drinking strait vodka about a bottle a day.first few years were hard comming out of hospital thinking I couldn't do.but still here 17 years later.thank you again I've never really talked about it much .I don't know anyone who had or got liver damage

AyrshireK profile image
AyrshireK in reply to Miles7

The fact you are still here 17 years later with very few symptoms (from what you've written) is excellent. Your liver can continue to function relatively well even with cirrhosis providing that whatever it was that was causing the liver injury (in your case the booze) is ceased. The liver can repair itself somewhat and can exist in a compensated state which it sounds like yours is doing. It is possible your liver won't deteriorate further now that you have stopped drinking so you should continue to enjoy your life. Don't sweat all the details, just live your life (minus booze obviously). Keep an eye out for symptoms but don't dwell on them or convince yourself you are going to get them because you may not.

Hubby and I are now three weeks into our 'getaway' - we've walked practically every day now up to almost 100 miles for our trip including some 10 milers, 12 milers and several 6 & 8 mile days. His liver never crosses our minds other than when he's gotten fatigued and needed a wee bit extra rest and fuelling as we've gone.

Just live your life and stop dwelling on it. Providing doctors are monitoring you as per the NICE guidelines i.e. 6 monthly ultasound, 6 monthly bloods including Alpha-fetoprotein (AFP) and generally keeping an eye out for any signs of deterioration then that's generally the care pattern for someone with well compensated cirrhosis. Make sure you fuel so you don't loose muscle mass and generally get on with living your liver to the max.

Katie

CarpeDiem11 profile image
CarpeDiem11 in reply to Miles7

Not surprising you don't know anyone with liver disease, it's not much of a conversation starter/ chat- up line!! Most people probably know someone with liver disease, but either they don't talk about it or they don't know they have it. There is still a lot of ignorance concerning the connection between drinking & liver damage as well as between food & liver damage & not much being done to alert people to the risks.

There are lots of posters here who have lived through this, it might help you to chat to them? The shock for you & your family sounds like something that would be helpful for you to talk about with someone who knows about this. Apologies if I have this all wrong. Hope you have a great weekend.

Hi Miles7, I was completely memorised that you have lived with Cirrohsis for 17 years, gosh! (Don't mean that to sound weird)I have only served my sentence for a year which feels like an enternity. I had a biopsy which confirmed I had alcohol Liver Cirrhosis, they went through a vein from my neck down to my liver. I am surprised that wasn't normal practice when diagnosed you with Cirrhosis. I was decompensated, and was in and out of hospital for about 4 months. I am now compensated and trying to carry on with a normal life as much as I can. How productive has your life been? what challenges have you had to conquer? You come across as a being a happy chap x

Through a vein!!?? I’m glad my consultant has never mentioned me having that done!!

Hi deanw41, lol, I certainly did have it done down a vein from my neck. I was terrified and they assured me it was safer doing it that way as I had really bad ascites. Sounds weird i know, I was awake but totally out of it. Still have a little scar on my neck! Hope alls ok with you x

I would have run for the hills!! Your brave!! Well I had ascites last year,am compensated now. My consultant said might do a Fibroscan in the distance future! I know no idea how much scarring I have. Seems some consultants do thing differently I guess???

Miles7 profile image
Miles7 in reply to Sunflower2021

Hello sorry for late reply.umm I'd say first few years were hard my head was a mess and the blood clots comming out of my nose was frightening.i was put on antidepressants and just stayed in really. 3 years out of hospital I had my son life started to get better.i didn't have any counseling just good family and friends with me.i tried taking up wacky backy but wasn't for me haha I've never been it to any drugs. I'd say about 5 years comming out of hospital I was OK around alcohol. Its these hot summer days I miss it a bit lol no you get used to the soba head and just got to crack on enjoy life I'm very lucky I'm still here.my liver function and blood tests are all what they should be its not worse. And I've never been healthy in my diet till few months back.but overall I've been fine just had alot of skin infections that I'm now on injections for.i don't take anything for my liver I never have.how are you feeling now?

Sunflower2021 profile image
Sunflower2021 in reply to Miles7

Hi, well done for you staying off the booze for all that time and it sounds like your doing great . I was depressed at first but I'm a fighter and refuse to let this beat me. I have been off the drink for a year, it is difficult sometimes when everyone else goes out drinking but I just think if only you knew that one day it could all end in tears and ruin your life and it's not all that fun. Don't miss the hangovers and feeling like rubbish. I have just got on with it, I studied this year gained another qualification and got myself a job which I really enjoy. I am due for an ultrasound in august, I have no idea what my liver is doing. I have just been doing what I have been told to do. I am compensated last time I spoke to my consultant .I don't like keep losing balance when I walk though bit embarrassing. But anyway you have done amazing , a great inspiration .and ask about a biopsy xx

Miles7 profile image
Miles7 in reply to Sunflower2021

I suppose you just live a normal life without alcohol.my strength is great as I been doing weights for few years .

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