I've seen conflicting advice all over the place, I've seen posts here of people saying they're stage 3 or stage 4 etc but my hepatologist is adamant for the last seven years I've been seeing him there are no stages and won't tell me just what sort of state my liver is in.
Can anyone point me to some information or a guide of what the stages are please?
I'm going to try to get him to actually give me a straight answer when I see him (tomorrow) or at least tell me what percentage of functioning liver I have left, I'm getting fed up of him avoiding giving me an answer or changing the subject.
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Gemma68
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Well as far as i know there is no stages of cirrhosis, i have stage f4 fibrosis that means I have a lot scarring of the liver due to my read being 27kpa. This is the highest (f4) it will go but the number can be higher if scarring gets worse. Cirrhosis is the last stage of liver disease. I don't know how Much of my liver is working, i have never asked.
As long as i remain stable with decent LFT results and nothing concerning showing on any ultrasound scans im fine with that. .Hope this might have helped. Linda xx
Thanks Linda, I suppose it's just something for peace of mind for me, I want to know what I'm working with, say 20% functioning instead of 100%. I have an atrocious time trying to explain what I mean.
I had my 2nd biopsy recently and will probably be getting the results of that tomorrow.
Apparently my IGG is never within normal range, apparently that's some sort of protein? He never explains it to me.
He's shown me what basically looks like a spreadsheet with loads of readings, most of them for this "IGG" are out of range except for one result in 2013 so goodness knows what that's all about!
Your IgG is an antibody so it's not unusual that this would be raised when you have a diagnosis of Auto-Immune Hepatitis. The measurement of immunoglobulin G can be a diagnostic tool for certain conditions, such as autoimmune hepatitis.
Your biopsy should give you a guide as to what your liver looks like at a cellular level. It should tell you whether you have a totally normal liver (F1 / Stage 1), inflamed / enlarged liver (F2 / Stage 2), Fibrotic liver (F3 / Stage 3) or Cirrhosis (F4 / Stage 4 or sometimes labelled End Stage Liver Disease).
Scans should also tell you what sort of state your liver is in, a fibroscan would tell you how dense your liver is though on all the fibroscan charts there isn't a kPa score which provides a base line for AIH.
Your doctor probably can't give you a % number for how much liver is working or not. The most important things are the presence or absence of symptoms. I know my hubby has never been told any stage or score (other than being told he has cirrhosis).
Oh i see.. Now i know. I knew f4 was end stage and it was the QE hospital liver unit that requested my fibro scan on my first visit last February...sooooo.... ( going to do your head in now lol)
.if i have stage f4 fibrosis..do i also have the other 3 before that? Or am.i being thick. Sorry Katie x
You will have progressed through the earlier stages to reach F4. In simple terms - Normal liver (F1) becomes fatty and enlarged (F2), the liver tries to repair itself with collagen fibres and becomes fibrotic (F3), the continued build up of fibres squashes and squishes liver cells causing them to shrivel and die off leading to cirrhosis (F4 liver disease).
I know I have cirrhosis, a lot apparently. He's never mentioned a fibroscan, never had one I don't think. Should I ask for one?
He's also told me I'm a heterozygote because I couldn't tolerate a high dose of mercaptopurine (he's reduced it to 25mg a day) so I think I'm a pain in his backside with all this!
If you already have a diagnosis of cirrhosis then no a fibroscan won't add anything at all to your diagnosis - we asked for one for hubby and were told there's no point as we already know you have cirrhosis.
Hubby is classed as having compensated cirrhosis at present - his liver is coping with its major functions - so currently no jaundice, no ascites/oedema, small varices re-appearing in oesophagus after previously having had 42 banded and a major bleed (he was classed as decompensated at that stage) & only mild HE symptoms. All sorts of other wee niggles with hormones plus chronic fatigue etc. etc. He is classed as stable. Hubby has cirrhosis due to burned out AIH, he has never had treatment for AIH just takes 5mg prednisolone daily to control potential inflammation.
More information on cirrhosis at the British Liver Trust page which might help you make sense of it. britishlivertrust.org.uk/li...
You are most welcome, I spend my life trying to put complicated med speak into simpler terms for hubby so I try and get my head round it all to try and make sense of it all for him.
Your husband's situation sounds a bit like mine, generally well controlled except for this IGG thing that seems to jump all over the shop! I don't *think* I get problems with HE but as is the nature of the beast you can't tell if you suffer with it or not only other people can I believe? I don't have a regular sleeping pattern so can't tell from that, I do get instances of brain fog but now thing too noteworthy.
Hi Gemma, I have always been to by my consultant, that the liver is very patchy and it is very hard to give accurate scores/ percentages. Cirrhosis forms almost, like spots on liver. Hope that has helped. I hope your meeting goes well tomorrow.
Hi Gemma, unlike Kidney disease there is no test that can tell you how much liver function you have. There are various stages from inflammation to cirrhosis, but when you get to cirrhosis that is just the end stage. It can be referred to as stage 4, but only because there are 4 distinct stages normally referred to in the progress of liver disease. You could split a couple of those in to subsets, for example cirrhosis is either compensated or de-compensated, but the point that is in each person can be quite different. Its not necessarily a percentage of function. Although by that stage I suspect its pretty low, lol.
this article explains how The 4-stage system is based on the presence or absence of specific complications of cirrhosis. These complications develop because of failing liver function and/or blockage of blood flow through the liver caused by extensive scarring
Stage 1 Cirrhosis
Stage 1 is the earliest stage of cirrhosis and is characterized by the absence of two significant complications known as varices and ascites. Varices are dilated, ballooned veins. They are most often located in the lining of the esophagus and/or stomach. Acsites refers to an accumulation of fluid in the abdominal cavity. Both varices and ascites develop primarily because of obstructed blood flow through the liver, a condition known as portal hypertension. While people with stage 1 cirrhosis have extensive liver scarring, it is not severe enough to cause substantial portal hypertension and its complications.
Stage 1 cirrhosis is considered compensated cirrhosis. This means that despite extensive damage, the liver is not yet so severely scarred that clinically apparent signs of liver failure have developed. People with stage 1 cirrhosis generally do not experience many symptoms other than perhaps lack of energy and fatigue. Stage 1 cirrhosis is potentially reversible if the underlying cause of the cirrhosis is eliminated or cured.
Stage 2 Cirrhosis
Stage 2 cirrhosis is marked by the development of esophageal varices, due to worsening portal hypertension, but without the presence of ascites. While the development of esophageal varices indicates worsening cirrhosis and an increased risk of dying in the next 12 months, stage 2 cirrhosis is still considered compensated cirrhosis. There remains the potential for at least partial reversal of liver damage if the underlying cause of cirrhosis is eliminated or cured.
Stage 3 Cirrhosis
Stage 3 cirrhosis is marked by the development of ascites, with or without the presence of varices. The volume of ascites varies from being detectable only with imaging tests, such as abdominal ultrasound, to obvious bloating of the abdomen. The development of ascites signals worsening portal hypertension due to advancing liver scarring and deterioration of liver function. Stage 3 cirrhosis signals decompensated cirrhosis, meaning the liver is failing. Once decompensated cirrhosis develops, liver scarring is irreversible and evaluation for liver transplantation is generally recommended. A variety of signs and symptoms may be present with stage 3 cirrhosis, including:
pale and/or yellowish skin
weight loss and loss of appetite
shortness of breath
extreme fatigue
persistent, widespread itchiness
swelling of the feet, ankles and lower legs
wasting of the muscles of the arms and legs
Stage 4 Cirrhosis
The defining feature of stage 4 is gastrointestinal bleeding, usually from ruptured varices in the esophagus or stomach. This type of bleeding can be immediately life threatening if not controlled. Even if bleeding stops or is medically controlled, however, individuals with stage 4 cirrhosis still face a high risk of dying within 12 months. Persons with stage 4 cirrhosis have end-stage liver disease and urgent evaluation for possible liver transplantation is necessary. Signs and symptoms that might develop include those that may occur with stage 3 cirrhosis as well as others, such as:
You've got stage 4 fibrosis = cirrhosis. Without varices, ascites or PH then on this staging of cirrhosis you'd be stage 1 of cirrhosis i.e. compensated.
Hi Donald, Scarred & Scared here. Thank you for helping clarify the stages of cirrhosis.
Hope I can call you Donald? It's just that earlier this year you advised me to get my ducks in a row. I took your advice after a horrible event this January when my liver stopped compensating & my heart went into AF - both were caused by a bust/alcoholic binge & decades of drinking, which ended in hopeless alcoholism.
I am now a recovering alcoholic & living with heart disease & diabetes.
Good news is that I received a high-five, literally, from the Gastroenterologist last week who said I had rid myself of the Hepatitis C virus.
I finished that 12 week treatment of Direct Acting Anti-virals in May. I know proper confirmation will take another 8 weeks but, hey, if he's convinced from last week's bloods. And he said these new drugs help reduce the fibrosis. Liver function tests have reduced close to normal range.
I am gradually coming out of the fog & seeing how interactive all these diseases are! How denial is not the sole premise of alcoholism.
So my next challenge is to lose my gut fat to improve my still fatty liver &, in turn, help my heart. He also is convinced weight loss will end the diabetes. Mediterranean diet, he advocates. Another gastro recommends the ELF diet... Eat Less Food.
I am lucky I have found a place with such an holistic approach!
I want to thank you for your advice & that from other compassionate souls who have danced with death.
Good news for you that’s great, no Cirrhosis you are lucky, as for as your decision on which diet is best less sounds good, one way is to get smaller plates for smaller portions. With diabetes and the healing of your liver, You really should consult A dietitian to help calculate your calories needed daily and what foods to avoid, Eating small frequent meals to avoid long periods of fasting has worked for some , This practice will help shrink your stomach and not be hungry at the same time. If your doctors approve maybe you can add some physical activity. I am very happy for you sometimes it’s that shock you need. I pray you stay strong in your recovery. It is never easy to make such a lifestyle change , you should be proud of yourself and you have the ability to help others with your life stories and battles so use it, you never know who you may find that needs you.
You've had some really good answers and Kate is very good at simplifying the complicated.
She gave you the link to the British Liver Trust website, this is the same link but more specific to getting support. This will show you where there are support groups throughout the UK and the telephone number of the Trust helpline which is available throughout the week ( 0800 652 7330: 10am - 3pm) Monday to Friday but not bank holidays)
Sat Jun 16, 2018 10:26 pm (PDT) . Posted by: pbcers
This is interesting. I thought there was only 2 stages, but this shows 4.
Everyone have a good weekend.
Linie
LIVESTRONG.COM
DISEASES AND CONDITIONS LIVER CONDITIONS CIRRHOSIS
What Are the 4 Stages of Cirrhosis?
BY LEAH DIPLACIDO, PH.D. OCT. 14, 2017
What Are the 4 Stages of Cirrhosis?
Cirrhosis is a condition that develops with long-term, ongoing liver damage. With cirrhosis, the normal structure of the liver has been replaced by islands of liver tissue separated by nonfunctional bands of scar tissue. Chronic liver disease/cirrhosis is among the top 10 causes of death in the United States for people aged 25 to 64, reports the Centers for Disease Control and Prevention. The most common causes of cirrhosis in the US are chronic hepatitis C infection and alcoholic liver disease. Several different systems are used to stage the severity of cirrhosis. The 4-stage system is based on the presence or absence of specific complications of cirrhosis. These complications develop because of failing liver function and/or blockage of blood flow through the liver caused by extensive scarring within the organ.
Stage 1 Cirrhosis
Stage 1 is the earliest stage of cirrhosis and is characterized by the absence of two significant complications known as varices and ascites. Varices are dilated, ballooned veins. They are most often located in the lining of the esophagus and/or stomach. Acsites refers to an accumulation of fluid in the abdominal cavity. Both varices and ascites develop primarily because of obstructed blood flow through the liver, a condition known as portal hypertension. While people with stage 1 cirrhosis have extensive liver scarring, it is not severe enough to cause substantial portal hypertension and its complications.
Stage 1 cirrhosis is considered compensated cirrhosis. This means that despite extensive damage, the liver is not yet so severely scarred that clinically apparent signs of liver failure have developed. People with stage 1 cirrhosis generally do not experience many symptoms other than perhaps lack of energy and fatigue. Stage 1 cirrhosis is potentially reversible if the underlying cause of the cirrhosis is eliminated or cured.
Stage 2 Cirrhosis
Stage 2 cirrhosis is marked by the development of esophageal varices, due to worsening portal hypertension, but without the presence of ascites. While the development of esophageal varices indicates worsening cirrhosis and an increased risk of dying in the next 12 months, stage 2 cirrhosis is still considered compensated cirrhosis. There remains the potential for at least partial reversal of liver damage if the underlying cause of cirrhosis is eliminated or cured.
Stage 3 Cirrhosis
Stage 3 cirrhosis is marked by the development of ascites, with or without the presence of varices. The volume of ascites varies from being detectable only with imaging tests, such as abdominal ultrasound, to obvious bloating of the abdomen. The development of ascites signals worsening portal hypertension due to advancing liver scarring and deterioration of liver function.. Stage 3 cirrhosis signals decompensated cirrhosis, meaning the liver is failing. Once decompensated cirrhosis develops, liver scarring is irreversible and evaluation for liver transplantation is generally recommended.
A variety of signs and symptoms may be present with stage 3 cirrhosis, including:
pale and/or yellowish skin
weight loss and loss of appetite
shortness of breath
extreme fatigue
persistent, widespread itchiness
swelling of the feet, ankles and lower legs
wasting of the muscles of the arms and legs
Stage 4 Cirrhosis
The defining feature of stage 4 is gastrointestinal bleeding, usually from ruptured varices in the esophagus or stomach. This type of bleeding can be immediately life threatening if not controlled. Even if bleeding stops or is medically controlled, however, individuals with stage 4 cirrhosis still face a high risk of dying within 12 months.
Persons with stage 4 cirrhosis have end-stage liver disease and urgent evaluation for possible liver transplantation is necessary.
Signs and symptoms that might develop include those that may occur with stage 3 cirrhosis as well as others, such as:
confusion,
personality changes and/or extreme sleepiness
hand tremors
reduced urination, which may indicate kidney failure
high fever, signalling infection of the abdominal cavity.
There are indeed stages of Fibrosis as well as stages of Cirrhosis. There are four stages of fibrosis . The fourth stage being considered Cirrhosis. At that point there are also stages the first 2 being compensated and the last 2 being decompensated. If you have acites and varices you would be considered stage 4 of cirrhosis. If you have no decomoensated symptoms you would be conisdered stage 1 .
Hey Linda, thanks for thinking of me! Bit of a mixed bag really, lots and LOTS of cirrhosis which we already knew, the biopsy showed that I have still got inflammation which wasn't showing up on blood tests, so he's tweaking my meds a bit (ok a lot, he's yo-yoing my doses!) to see if that does anything. Things are generally ok but he doesn't like that it still isn't as controlled as it should be. He's going to book a phone appt in about three months (with blood test prior) to see if anything has changed. He also said about calling me for another biopsy in 2-3 years.
So I'm seeing it as a good result, we know that something isn't right but it's being dealt with.
He seemed to engage with me more when he saw I had "done my homework" and knew what he was talking about with medical jargon etc. so thank you again all your posts by you lovely people were beyond helpful thank you!
Plus I'm glad to see your doctor is at last doing his job and so he should !! . Its amazing isn't it when we go in armed with knowledge lol. Brilliant!! Keep it up xxx Linda
It shows it definitely pays to educate yourself a bit about the condition so you can steer questions appropriately and make the most of your consultation. If you just go in blind you really just come out blind too because doctors often don't volunteer information. It's good that Gemma has answers today and action being taken for future follow up.
I was diagnosed with stage 4 cirrhosis or end stage liver disease. Now I’m compensated, I’m stage 2 cirrhosis? But I still have 80% of dead kidney. I’m only compensated because of the drugs the doctor has me on. I didn’t think you could jump back stages?
4 stages of fibrosis (F1, F2, F3, F4) so you are (F4) stage 4 fibrosis which is labelled cirrhosis or end stage liver disease.
Cirrhosis is then also split into 4 stages - stage 1 & 2 are both compensated and stage 3 & 4 are decompensated (descriptions of these 4 cirrhosis stages have been detailed by posters above).
So you are stage 4 fibrosis which equals cirrhosis and your cirrhosis is graded as stage 2 (compensated).
You can indeed reverse fibrosis and even early cirrhosis and you can certainly have decompensated cirrhosis and reverse this. My hubby at first diagnosis would have been considered stage 4 decompensated cirrhosis but is now probably stage 1 or 2 cirrhosis (compensated) - this is still F4 fibrosis/cirrhosis/end stage.
Fatty liver, bridging fibrosis, fibrosis and even now early cirrhosis are considered reversible so it is possible to go back down the scale from F4 to F3 and so on.
This discussion has been really useful and informative. It gives me hope that I may be able to reverse some damage, I had been applying my Fibroscan score to stages of cirrhosis, so now all has become clear. Thanks, everyone.
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