I am very confused

[Disabilityhearing]

Hey its Michelle, I had a liver biopsy in 2010 and I was told I have advanced stage 4 liver disease. All this time I thought I was in end stage liver disease. Some one told me the scoring is different with a biopsy. I don't really understand. I just did blood work last week. What questions should I ask to find out exactly where I'm at in my disease. I am very tired all the time and I have severe itching on my arms which has come and gone for the last couple of years but now it is worse and the cholestrymine my doctor put me on doesn't seem to work for me. I have a disability hearing coming up and I'm nervous about it. Is there anything I should ask the doctor about my blood work to help with my disability? Thanks for listening

[susieanna]

I dont understand about the scoring; u'll have to ask the specialist; id have thought it was the same thing? if you are tired all the time/itching to me you do have a disability; you would not be capable of working due to constant tiredness for one thing; the medicals are about what you can do; if they think you can function at all they might fail you; the medicals/hearings are very very harsh on people thanks to the government who don't give damn about ill people; think about how your disease affects your every day life and explain this to the fullest; get a letter from your gp too; good luck.

[Disabilityhearing in reply to susieanna]

Thanks for the I do Susieanna

[RodeoJoe]

Yes I think there are various conflicting methods to gauge what stage of liver disease you are at, so you really need to ask the specialist at your next appointment.It's also important to ask how or even if it's progressing. If the cirrhosis has been caused by alcohol and you are now abstinent it's not impossible that the disease doesn't progress any further.

When you say help with your disability, I take it you mean to claim for disability allowance? Is liver disease your only illness, or do you have something else to claim disability?

I'm interested in this as I was pretty much unable to work for a year before my transplant but was only able to claim for "Personal Independence Payment" and probably my own fault but this was only a few months before transplant.

It was the same after transplant PIP was as much as was able to claim, it just about covered food costs let alone anything else.

Believe me I'm not ungrateful having had the most amazing medical care throughout.

[Hidden]

Morning beautiful

A Liver biopsy result is subject to the doctors opinion when the cells are checked under a microscope. Doctors can have different opinions on the same cells, one might say F3 the other F4, its all depends on how good the samples were etc.

The Liver biopsy is known as "the flawed gold standard" it can give a false negative if the needle is inserted into a healthier part of the Liver. Its pretty unlikely to give a false F4 outcome, but I have heard of some getting an F4 and 2nd opinion giving F3. But even with doctors opinions varying they wouldn't be too far out of alignment , you will almost certainly have at least F3 and its likely you do have F4 if a doctor has called it.

The symptoms you are describing do also point to a Liver struggling. At the moment your Liver is in a "compensated" state where it has enough cells left to carry out its tasks. The problem with Cirrhosis is that it is progressive and slowly the Liver stops functioning.

Has a cause for the Cirrhosis been found? if you stop the cause you can slow down the damage and even gain some Liver function back.

[Disabilityhearing in reply to Hidden]

Hi Ralp, thanks for your response. The cause ofy cirrhosis is alcohol and hepatitis c. I have quit drinking over a year ago, with a couple relapse, but not many. My soulmate died in January which was really hard for me. I just did blood work bit haven't got any results back yet. I haven't seen my doctor in a while. I am bad about putting things off. They haven't treated me for hepatitis yet. I just moved to New Orleans from Baton Rouge with a girlfriend of mine to try to pick up the pieces of my life. I found a liver doctor here, but I need to sign a medical release form in order to see him. I just get scared they will tell me something I do t want to hear. The only symptoms I have are fatigue, the horrible itch, and sometimes my ankles swell. Also the spider nevi veins. I'm gonna call Monday and get the results of my blood work but sure I won't understand any results. Maybe you can help me with that. I'll bebin touch

[Hidden in reply to Disabilityhearing]

evening

Yes we will be able to help you with the bloods, so make sure you get copies.

You need to get onto curing the Hep c asap, because it causes damage regardless if you drink or not.

[TwinklingStar]

Hello Michelle

Here are two links which explain the Stagings of Liver Disease - note the two links are direct links to information for people with Hepatitis but as far as I know the staging is virtually the same whatever the cause.

Fibroscan results you will NEED to know the cause to be able to use the chart which as you will see is specific for each condition.

This is for the stages of Inflammation and Cirrhosis:

hepatitiscnewdrugresearch.c...

This link is for the stages of Cirrhosis and more advanced Liver Disease:

hepatitiscnewdrugresearch.c...

There are 3 or 4 processes and each process has a staging level of its own. So I won't list all the details as it would be better to study the links. These are the basic titles of each process:

Cause: Hepatitis/Alcohol etc. causing

Inflammation - (4 or 5 stages) causes

Scarring/Fibrosis (4 stages I think)

Cirrhosis (3 or 4 stages I think) - irreversible scarring where liver starts to become coarse and stiff

Then the rest I will leave you to do your own research.

You have not stated the cause of the Cirrhosis. Important to know so that you can try to reverse any damage. The liver is the only organ which can repair itself. If you are Stage F4 that would usually mean you have just changed from having Fibrosis and have gone on to develop the First Stage of Cirrhosis. If you know the cause get help with it and you would have a strong chance of almost complete recovery - I think.

Regarding your disability hearing it will be more important to make some notes regarding how you are affected by whatever health problems you have. They don't seem to be that interested in "results of tests". It is always important to have documentation/specific result or reports to support any of the health problems you have.

I hope someone else will come and help you about the Disability Hearing.

Hugs to you

from Twinkling Star

Xxx

[Hidden in reply to TwinklingStar]

F4 is the final stage of the scarring process not the 1st. someone can have F4 and be compensated or decompensated. F3 and F4 are progressive, once they have been established you can slow the damage down by stopping the cause, but most of time it will progress to Liver failure.

F1 and F2 are reversible if the damage is stopped. Most doctors will consider F3 to be cirrhosis and F4 to be end stage. but some even say F1 is the start of scarring therefore the 1st stage of Cirrhosis etc.

[TwinklingStar in reply to Hidden]

Yes check the links. F4 is the final stage of Fibrosis but F4 also means you have now got Cirrhosis. The links above will confirm exactly what I am trying to say - sorry cannot always make it absolutely clear for everyone.

F1 IS the first stage of scarring. Scarring is Fibrosis.

Fibrosis is not Cirrhosis.

Fibrosis is scarring which then goes on to cause Cirrhosis.

Cirrhosis is scarring that has become so severe it has caused irreversible damage.

Fibrosis (other than Stage F4) is damage to the liver which can be reversed.

Note Stage F4 = the highest level ie Advanced Liver Fibrosis which = Cirrhosis but does not = "End Stage Liver Disease"

Once you reach stage F4 you are now deemed to have irreversible Cirrhosis and you are then moved over to the other staging levels of Cirrhosis. These levels are included in the second link mentioned in my previous post.

I urge people to check the links above which obviously give a far clearer explanation than mine.

What we now need is to concentrate on is trying to find someone to help MIchelle with her Disability Hearing as all the other information she has asked for is in the above links which I provided.

Ralph2014 do you have any information which would help Michelle with her Disability claim or do you know any links or web sites where she could get some help?

Hugs to you from

Twinkling Star

PS I have just seen Michelle's update and note that she is not in the UK so she really needs the appropriate help for her region.

Also because you have Spider Naevi and therefore Michelle you should definitely be looking at the relevant Stages of Cirrhosis - my second link in my previous post.

[Hidden in reply to TwinklingStar]

your links says F3 is Cirrhosis. Yes Fibrosis can be considered Cirrhosis by some doctors because it is scarring but not end stage. de- compensated F4 Cirrhosis is "end stage" It all depends on what countries and scoring the doctors are from. Metavir scoring is what you are referring to I believe where F4 is considered Cirrhosis and F1,F2 and F3 Fibrosis. The are many scoring systems another popular one is the Ishak scoring that goes from F0 to F6

Your links are not scientific papers in any case, different links give different information.

In the UK and US I think its mainly the Metavir system. most doctors will consider F3 Cirrhosis because it will become F4 anyway.

[TwinklingStar in reply to Hidden]

Thank you Ralph2014.

Yes I agree the Staging systems can be very different in various countries. Furthermore, the links are specifically related to Hepatitis C.

Like you say Ralph2014 there are so many different Staging systems used even in the same country that it all can be very confusing. I know in Scotland they certainly do not consider F3 as Cirrhosis. I also don't see anywhere on my link where it states F3 as being Cirrhosis.

My link states the following:

Grade

A 4-point scale is used in grading the degree of liver inflammation or histological activity:

A0= no inflammation

A1= mild inflammation

A2= moderate inflammation

A3= severe inflammation

Stage

A 5-point scale is used in grading the degree of liver fibrosis:

F0= no fibrosis

F1= minimal fibrosis

F2= fibrosis has occurred and spread inside the areas of the liver including

F3= fibrosis is spreading and connecting to other liver areas that contain fibrosis

F4= cirrhosis or advance liver fibrosis

I even forgot to check whether the link is a UK site or a USA site - it is all important. I just recognised it as the system they use in my own Hospital. I didn't have the time to look for any specific scientific papers. Maybe you can provide some, Ralph. It would certainly help me and I am sure Michelle could do with some more specific information.

I also note that my two posts seem to be using different staging systems so that is not very useful at all! However, in some hospitals in the UK they use the first posting for grading levels of inflammation and Cirrhosis. They use I THINK ONLY the second halve of the second post to grade levels of Cirrhosis.

I appreciate your comments and hope you can help us further. Thank you Ralph.

Hugs to you

from Twinkling Star

Xx

[Hidden in reply to TwinklingStar]

Most in the UK and US will use Metavir. But with the limited budget of the NHS a doctor will usually say Cirrhosis is F3 or F4, there are a couple of reasons for this:

1) The treatment path is the same, someone with F3 will be treated as if they have F4.

2) F3 will become F4.

3) Clinically its not that important at this stage if its F3 or F4 because more important is the Child-pugh score or MELD.

I follow alot of US Hep-c patients and most refer to F3 as "early" Cirrhosis, again because the treatment path is no different to F4.

F3 is when the scarring starts to bridge, F4 is when bridges start to bridge, so you can see the Logic calling F3 "early" because it is really the same process that is occurring.

I would also point out that there isn't much chance of a full recovery from F4 even if someone is well compensated. Its disease process and F3 is where it starts and this ends up as F4 and eventually failure.

There have been remarkable recovery stories though, I have read about a couple of people who did recover from F3 from Hep-c. But I don't want to give false hope, most will progress eventually.

Also some have many years of quality of life if they live clean and listen to their doctors.

Andy Fordham the dart player collapsed in 2007 with Ascites and was told he had end stage, he is still here with his native Liver:

news.bbc.co.uk/1/hi/health/...

[Bolly in reply to TwinklingStar]

Biopsy reports can be confusing. In the UK they often use Ishak rather than MELD. There is grading and staging. Staging is the degree of scarring or level of damage, the higher the number the more damage. Then there is grading which is the severity of the underlying disease. Removing the cause of the liver damage can slow the progression or speed of damage (Mister x points this out frequently, inflammation is different to scarring). Grading tells you how fast the damage is progressing. With cirrhosis is gets the additional description of 'compensated' which then becomes 'decompensated'. TBH I never really understand this "end stage" term as I thinks it's scary and makes people think they are terminal or dying,when in fact even people with decompensated cirrhosis may be able to improve things slightly and live for many years.

[Katherine1962 in reply to Bolly]

Hi Bolly -agree with confusion over 'end stage ' term. My husband has been told he is almost end stage -I was in total panic -he went for a transplant assessment. And they told him he was too well at the moment which made me slightly more at ease-I am 🙏 he will be able to have a lot more years -it's the uncertainty of the future that's hard but we are living each day as normal as possible and family life continues -just feel so sorry for him and yet he remains as positive as always

[Disabilityhearing in reply to TwinklingStar]

Awwe Thanks Twinklling star, I appreciate the information and your time to send it to me. I'm waiting on my lab results. Hoping they are good! I am sending a big hug right back to you!!!

[susieanna]

Oh, i see you are in the USA; I wouldnt know what the situation is over there re your disability hearing; sounds like some great information provided by others; good luck and i hope you get your disabiity. x

[TwinklingStar]

Thank you Ralph for your informative post. Extremely helpful.

Firstly, I am in Scotland in the UK. When I was level F3 they refused to treat me. Now I am F4 I have had to go on a Cancer Watch Surveillance Programme. I have been fighting to get treatment with Harvoni because I have a rare genetic condition. They wouldn't give it to me. Now I am F4 and obviously now have Cirrhosis they want to put me on Harvoni with Ribavarin. The Hep C has already attacked my Lungs so it was pretty obvious to me that I needed to be on treatment! I am now on Oxygen 24/7 and fighting to get treatment of ONLY Harvoni because Ribavarin will probably kill me. At the same time I am concerned that the Harvoni may not work for a patient with Cirrhosis and that if I refuse the Ribavarin I may end up not obtaining an SVR.

Your post makes a great deal of sense but the guidelines in Scotland would previously only allow people who were Stage 4 to have treatment. I don't know where you are Ralph but I only wish they would have considered me as having Cirrhosis when I was Stage 3 and treated me at that time.

Doesn't look like I have got a lot of hope then! lol I give up caring. The NHS gave me this disease in the first place and have now failed to treat me at a time when I could have tolerated the relevant treatment and at a time when my GPs would have been able to support me by coming out to do necessary blood tests, etc.

I hope Michelle can get some support in helping with her Disability Claim. It may be a good idea to post it again Michelle as most of the responses concentrated on the explanation of the Staging process.

Love to you all

Twinkling Star Xxx

[lefee in reply to TwinklingStar]

HELLO TWINKLING STAR!

😃 This is my first time writing. I am new to this. I'm here in the U.S.A. and a child of the sixties.

I have been diagnosed with Hep C. My doctor wants me to take Harvoni if it is approved at this time. I am afraid. My liver scan was ok. Yet my fatigue is horrendous, my ankles swell lately but doctor said I am pretty good. Until just reading all the posts you and Ralph wrote I did not know about cerrhosis and fibrosis. I now will ask my doctor where I am on the scale. This information has been very helpful.

And I would like to say that you will be in my prayers everyday. As well as Ralph and all of you out there.

God Bless.😀

[TwinklingStar in reply to lefee]

Dear Iefee

If you have been offered treatment with JUST Harvoni I would say to you that I know many people who have had this treatment and almost every one of them has obtained Sustained Virological Response (SVR). I cannot tell you to take it but if you wait until your condition is worse you may need to have another medication added to it. I can only say that if I was in your position I would go ahead and have it.

If you don't have treatment asap your Hep C will just go on to attack your liver and in the end you are likely to need a Liver Transplant. I am not eligible for Transplant because of my genetic condition. I know someone who is USA who was classed as F4. He told me he was "End Stage Liver Disease". As you can see from the links provided this is not what we call end stage liver disease in UK.

There are so many different Staging methods being used it can get extremely confusing as you can see from mine and Ralph's posts.

If it were me I would have the treatment. Of course, no-one knows what these drugs may do to you in 5 or 6 years BUT we do KNOW what Hep C will do to you! Get treated NOW! before the Hep C goes on to attack other organs and before it causes you a host of other problems.

Try not to fear the treatment. There are many people on here who have been through the treatment and there seems to be very few side effects. There is also a very good FB group. I will PM you the group page so you can join. There are lots of people going through treatment as we speak! And many who have completed treatment.

Don't wait until you need to have other drugs added because things like Ribavarin are not nice!

Lots of Love and Hugs to you

from Twinkling Star Xxx

[lefee in reply to TwinklingStar]

Twinkling Star,

Thank You So Much for your concern. In December I will see my doctor and then see what happens. Thank you for the information.

I think I may have some cirrhosis, just a bit. One doctor said you are clean in your liver. One said you have slight I think it was hardening of the liver. I did not pay attention. Now I am going to start to take it more seriously. My fear has kind of made me ignore that I will get sick. Today reading all of what you and your friend wrote has made me THINK and not ignore. ☺I have read this site many times, but somehow your post was the one that got to me. And I truly will continue to pray for you.

I will let you know how things go. And you let me know how you are too. 😊

[TwinklingStar]

Firstly you have a cause - such as Hepatitis, Alcohol, etc.

These cause inflammation. (Inflammation is not Cirrhosis.)

Inflammation is reversible if you can control the cause.

If you cannot remove the cause or it has been left too long you develop -

Fibrosis. Fibrosis = scarring. Fibrosis of the liver can be reversible if it has not been left too long. Fibrosis/Scarring becomes worse and the liver begins to become stiff. The worse the scarring the less likely it will be to reverse it.

If your Hep C attacks other organs, such as the Lungs, as soon as you have Fibrosis/Scarring then it means that you have permanent damage which CANNOT be reversed. So the lungs just become stiffer and stiffer. The lungs cannot regenerate so this is why the scarring or Fibrosis is irreversible when it is the lungs which are affected.

In the UK when a certain level of Liver Stiffness (LS) has been reached such as F4 it is then called Cirrhosis and is regarded as irreversible.

However, I have heard people from the USA tell me they have F4 Cirrhosis and after having treatment with Harvoni are now only classed as F3. The Liver is the only organ in the body which can regenerate.

If you already have liver stiffness you need treatment URGENTLY. Don't put this off. We don't have statistics yet about whether there are any long term dangers of taking Harvoni but I have not to date heard of even one person having any long term side effects. However, we do know that if you don't have treatment for your Hep C your health will decline very quickly once your liver starts to become stiff or scarred or Cirrhotic.

I am sure someone will come along and correct me if I have posted anything inaccurate which is always very helpful.

Love and Hugs to all of you

from Twinkling Star Xxxx

You must NOT drink ANY alcohol!

Take as few medications as possible. Check with your Consultant if you need medications for other conditions.

Drink plenty of water.

I also don't eat anything with any added sugar.

I also don't eat any foods from the "Deadly Nightshade Family".

[Disabilityhearing in reply to TwinklingStar]

Thanks twinkli g star, for taking your time to send that info to me

[Pateo in reply to Disabilityhearing]

Michelle, google "Benefits and Work" a website where you will find out all you need to know about presenting your case and appealing adverse decisions.

Best of luck!

[enricos]

is there really stages of liver deseases