Confused: So, I have been reading posts... - British Liver Trust

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Confused

Casinobo profile image
35 Replies

So, I have been reading posts in here for a few months now. Great forum, Great people. I can surely see the struggle is real. My main question is, How do you really know the true condition of your liver, until it’s causing all the physical symptoms in your body? I read so often, that people are having normal LFT’s but have Cirrhosis. I read people having normal CT scans and ultrasounds yet, end up with Liver diseases. Fibroscans are not popular in the States and I have seen they aren’t completely reliable. I hardly drink at all now but that’s only because, I don’t want to end up with Cirrhosis. I did drink a lot in the past and do not plan on going back to that. Thanks in advance! Your stories of courage are Amazing 😀😀😀

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Casinobo
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35 Replies

Hey Casinobo. Normally when we say normal blood test in cirrhosis its referring to the liver panel tests. With cirrhosis there will usually always be some bloods abnormal. But they aren't usually included on routine blood or liver panel tests. Ultrasounds are not the most clear pictures however tho they may miss something the wont show something that isnt there. They only way to no for sure is to have blood tests, imaging scans , fibroscans, and a biopsy. If all these test come back yielding a negative for cirrhosis. It's pretty safe to say you dont have it. Mind you there are many stages in between say simple fatty liver and cirrhosis. Alot of times internet literature refers to any and all scarring (fibrosis) as cirrhosis. Which is completely wrong. Cirrhosis refers to an advanced stage of fibrosis. The stage of extreme scaring that is generally accepted as irreversible. No single one test can diagnose cirrhosis. Its tests combined to form the whole picture

Casinobo profile image
Casinobo in reply to

Thank you for that reply😀When I see people’s posts pop up and get Cirrhosis out of the blue it freaks me out. It’s like, you finally drank that one drink that shot your liver down.

in reply to Casinobo

It may seem that way but cirrhosis doesnt work like that. It's a progression that takes many months to years to develop. The signs are there but because they resemble so many other things most people miss them. If a doctor tells someone they have cirrhosis from alcohol than that means they have had the liver disease for years and it's been progressing. The liver can be very resilient and usually doesnt whine much until its had enough and then it goes postal. Like the quiet kid in the class that one day goes berserk. Mind you not everyone with liver disease due to alcohol will go as far as cirrhosis. It only happens in up to about 20 percent of heavy drinkers. But that's still a one in five chance.

In USA you can get an "ASH Fibrosure" test that is supposed to be accurate. You don't even need a doctors referral, but it costs around $305 (True Health Labs). Some states in the North East prohibit this without a doctors order, but it's available in most areas. The test is done through LabCorp which is a legitimate company.

I didn't know where I stood for years before I got mine & I honestly believe this helped me stay clean. I pulled an F-0 (no fibrosis). Peace of mind? Priceless!

Hope you get good news!

Casinobo profile image
Casinobo in reply to

Thanks! I may look into that. I don’t really have many symptoms other than the pain under the right rib area. It comes and goes. Some little LFT elevations but barely. I’m still goin to diet and keep the drink to a minimum.

in reply to Casinobo

There are clues in routine labs you might want to watch. When the AST liver enzyme floats substantially over the ALT enzyme, this is known as a "De Ritis" ratio inversion, which is specific to alcoholic liver disease. Not foolproof and exercise or exertion can cause a false positive as AST is found in muscle tissue too.

GGT is a liver enzyme that may not be included in routine labs. It is a very sensitive marker for liver inflammation. Heavy drinking will always pop it high, but when GGT is up around double normal with moderate consumption, this can indicate chronic inflammation and disease. It's a cheap test, & your doc shouldn't mind adding it to your routine lab order.

Danubian profile image
Danubian in reply to

The de-ritid ratio means nothing when alt and Ast are in normal range!

in reply to Danubian

A De Ritis inversion in normal range is not a good stand alone indicator of trouble, but it can provide a piece of the puzzle. A negative De Ritis early in recovery is a substantial clue one most likely does not have alcoholic cirrhosis, which can be quite comforting early in the diagnostic process.

I'm on half a dozen different forums and have seen a lot of labs. I can't count the number of times I've seen members with confirmed alcoholic cirrhosis with a chronic De Ritis inversion, often within normal range that persists for years after alcohol withdrawal.

When new members show up with no history of an inversion & GGT that normalizes rapidly with abstinence, they invariably learn they do not have advanced disease once they get advanced diagnostics (fibroscan/fibrotest). This of course pertains only to alcoholic liver disease.

Danubian profile image
Danubian in reply to

you reckon I am OK then?

Danubian profile image
Danubian in reply to Danubian

Looking at my de-ritis post

in reply to Danubian

If you are worried about alcoholic disease and you have no history of inversion, or one that corrected swiftly, I'd put money on it; particularly if GGT normalizes swiftly with abstinence.

Always good to get as many pieces of the puzzle as you can completed, but lack of De Ritis inversion and rapidly normalizing GGT are the best early indicators I've seen in my admittedly unprofessional experience.

Danubian profile image
Danubian in reply to

I dont know what you mean by inversion but I had 18 and 14 giving a de ritis of 1.29. My ultrasound and mrt with contrast were without findings! My gamma gt was Ok according to doc but I don't know what it was. All people here tell me here I have nothing to worry me about - please don't start me - I got health anxiety casuing nausea!

in reply to Danubian

A 4 point / 1.29 inversion when ALT/AST are both in the teens is definitely not a significant red flag, particularly with GGT in the green zone. The De Ritis inversion doesn't become ominous until it gets up around 2:1 AST over ALT and persists over a number of labs.

AST is also found in muscle tissue and when ALT/AST are in the teens you can bump AST up and over ALT just by taking the stairs. A normal GGT effectively nullifies a trivial inversion like this. GGT can normalize eventually, even with advanced disease, but it typically hangs high for many months during the first year of alcoholic recovery when the liver is badly damaged.

This is way it's so important to get as many pieces of the puzzle as you can. Each piece of the puzzle has some value in creating the big picture of a proper diagnostic. No single piece is particularly reliable as a stand alone indicator.

Danubian profile image
Danubian in reply to

I was told by some extremely knowledgable people that these values are almost perfect and my liver is all good! Was told to forget de-ritis - with these values it means nothing! Ultrasound and mri with contrast all good. I should stop this - man I can feel my nausea getting worse:-(

Danubian profile image
Danubian in reply to

Anyway thanks for replying. I take it I'm fine. Have a good weekend!

Danubian profile image
Danubian in reply to

Thanks for the reply! i didn't get this until now although I See it was sent 17 hours ago! - I'm lying in bed with my anxiety gut rumbling as I type this - I would have preferred not to see the word 'significant' but that's the way it is! Although not directly your words an '-insignificant' red flag is sort of an oxymoron in my books! How can such a 'trivial' thing be a red flag at all? Have a great weekend!

in reply to Danubian

De Ritis is not a black & white, positive/negative stand alone diagnostic. The results need to be interpreted in relation to other diagnostic clues, which when it comes to evaluating liver fibrosis are also not going to be black & white / positive-negative in nature. The only fool proof way to evaluate whole organ fibrosis is autopsy, which we want to avoid, though biopsy will show fibrosis in a small area of the organ.

Without invasive tissue sampling, all our diagnostics (CT, MRI, MRE, Fibroscan, ELF, Fibrotest, ultrasound, labs, signs & symptoms) simply provide pieces of the puzzle to be viewed and evaluated as a whole. De Ritis is a minor indicator compared to the rest of the diagnostic, but I wouldn't call it totally worthless. A negative De Ritis early in an alcohol diagnostic can be very comforting to those who have not had an intensive workup, but it most certainly does not trump the more advanced diagnostics I mentioned above.

Danubian profile image
Danubian in reply to

Thanks _ it looks like I'll be OK then - judging from what you said and in my post about de-ritis

in reply to

Metanoia brings up a goodie here. I'm confident we will start to see the fibrosure test slowly replacing the fibroscans. Not that fibroscans dont work because they work quite well. Problem is the results can be swayed by other factors like inflammation and the fibrosure is much much less influenced by such things. The sooner you get some answers Casinobo the better. In the mean time I'd try and perhaps cutting out the alcohol for now. The worst would be to find out you have li er disease 6 months from now and that youve unknowingly been making it worse by drinking.

Ps Metanoia I'm super jealous of your F0 score!😋

Casinobo profile image
Casinobo in reply to

Yea, I hear ya loud and clear. My Dr. said don’t worry about it but, I don’t want to take that for granted. I drink about 6 -8 beers a month. The only LFT that was high was my ast was 5 points over. I do have a NAFLD diagnosis from the past. I am working hard on the diet and exercise. The drinking is getting easier to resist. I was drinking heavy for years prior. One step at a time. 😀

in reply to Casinobo

You got your mind in the right direction and you have the right attitude. All the best to you my brother!

in reply to

No one was more surprised than I was when I pulled the F-0. I had been clean for 7 years, so perhaps there was some resolution that occurred during this time.

I was good and sick for several months back in 2011, & thought for sure my liver was toast. I had been going to bed quite blotto for over 30 years at the time. Was hoping for an F-1/F-2, but fearing F-3.

I'm not a particularly religious guy, but I about fell to my knees. They say God looks after children, drunks and fools; and I've been all three at one time or another.

in reply to

Did any other blood tests or scans ever show anything?

in reply to

My ultrasound 90 days into recovery showed a "mildly echogenic liver" which the radiologist opined was "likely due to fatty infiltration, or less likely primary parenchymal disease".

ALT was double norm at 90 days but AST normal. I've read AST falls faster than ALT during early recovery, but I knew nothing about De Ritis at the time (& neither did my GP).

in reply to

Sou is like it might have been a mild case of alcoholic hep at the time. De Ritis. Isnt it scary when a doctor doesn't know what it is? My hepotologist didnt k ow it was called that either 😳

in reply to

I find this story amazing Metanoia! It was 7 years before you found out it was F0? You literally must have been over the moon. 😁

in reply to

When I got sick, fibroscan wasn't approved in USA, & Fibrosure wasn't released yet & Fibrotest was supposed to be only for Hep-C patients; so yep, I wandered in the wilderness for 7 years.

The fear of advanced disease is probably the only thing that kept me clean!

A fairly new type of test over here which is being rolled out around the country in the "ELF test with markers". This test is becoming far more reliable than a basic LFT. It is proving very reliable for identifying both fatty liver and fibrosis. In some cases it's been used in place of a biopsy.

Alot of our healthcare trusts are slowly introducing this test, but specialist training is required by the hepatology departments in order to obtain the correct results.

Chlopjeden profile image
Chlopjeden

It seems information and testing do not always relate. The first event i had pain i was told after bloods and a scan that i only had a fatty liver, however the when you read up on it just a fatty liver shouldnt have pain in the liver area as symptoms. It makes me worry now that i have something worse and they just didnt bother looking into it as more whey should of.

Casinobo profile image
Casinobo in reply to Chlopjeden

I can say, my pain is way less frequent when I don’t drink ,don’t eat junk. I still get it from time to time but, I’m going to chalk it up to my post Gallbladder surgery. I am still not going to take my liver for granted ,after reading all the stories in this great foundation of information forum. Cheers😀

Kristian profile image
Kristian

The simple answer is, "you don't".

Without cutting you open to have a good look there is no test which will say for sure what the true condition of your liver is. All the blood tests that are done are there as a proxy to show either how your liver is roughly functioning or whether there is any current or very recent liver injury or inflammation. The imaging scans in their various forms will show how it actually looks to varying degrees of clarity and are probably the closest you'll get to actually "seeing" what it looks like. They too may not always show everything, but are generally accurate enough.

It's really then a case of putting all this together to come up with an estimation based on all the evidence available, including your symptoms, to determine whether or not your liver is diseased or very roughly how well it may be functioning. It's rarely the case that all the tests and all the scans would be normal if someone had liver disease of some description.

People tend to get fixated on numbers to some degree, which is understandable. However, life is never that simple unfortunately. Liver disease isn't like kidney disease where you can give it a "function" value. Everything is a best guess I'm afraid. The likelihood is though, if everything is normal, then usually everything is normal.

Casinobo profile image
Casinobo in reply to Kristian

Welcome to old age I guess, where going to the DR. becomes more frequent ,and we just have to accept that our issues don’t always get answers. All the sudden in my 50’s now, symptoms last longer, and a lot more guessing seems to be going on. When it comes to the quadrant pain most experience, how the hell do you do anything about it, when you don’t know what the hell is causing it? I’m sure like most problems, the solution is in life style changes. Mostly, in keeping excess weight off ,and eating the right things. I must confess, most meds I take are from being a bit of a fat ass😀The quest continues. Thanks for the reply😀

Hanc profile image
Hanc

Can Cirrhosis develop over months, or would this be Fibrosis? This has got me quite worried as I have just tapered off nearly three months of daily drinking 10 pints of larger, now I'm really worried, had bloods done 2 months into the binge and all was normal. Thanks for any help.

Casinobo profile image
Casinobo

Hi Hanc,

What are you worried about? Are you having some symptoms? If your bloods are normal and your not having other problems why the worry? I’ts hitting home to me ,that the drinking benefits in general do not outweigh the negatives. Sorta like smoking. I hope your ok. I’m a big hypochondriac, but better safe than sorry. You might want to create a post so the general good people I’m this forum can see it and give you some advice on your cirrhosis question. I’m not qualified.

Hanc profile image
Hanc in reply to Casinobo

Thanks for your kind reply and information Casinobo, very much appreciated.

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