Liver disease

[Chealth]

Fatty liver is a normal part of aging. High triglycerides, alcohol use, medications - all of this adds up over time to affect the liver.

After a trip to ER and admitted for pancreatitis, I learned about my liver.

Ignorance and "normal lab results" combined to leave me shocked to find stage 4 liver fibrosis / cirrhosis threatening my life expectancy. Hindsight is 20/20 as I look at symptoms (like fatigue) that could have been caused by any number of other reasons.

Most PCP's are NOT liver specialists, and look to the lab results to determine course of action and treatment plans. The Fibroscans are rare, not found at just any hospital. Many general practitioners do not even know about them!

Get your MELD score if you have been lucky enough to find out that you have advanced liver disease, and work closely with your PCP to get referrals to a Gastroenterologist that has a Fibroscan available.

We all know the rest - dont drink, livers can heal, etc. There is no "cure" but a liver transplant will keep you near the transplant hospital, at least alive for a couple few more years. Maybe there will be treatment made available during that time.

[Ktltel]

Hello,

Its so shocking to me to hear things like this. I have PBC. An autoimmune liver disease. They only ever check LFT's (Liver function tests) CLEARLY these aren't a gage to go by in order to watch for progression. I will definitely ask for MELD score. What is that?

Stella

[GrandmaDylan in reply to Ktltel]

My lft's are very near normal. It was only when I was diagnosed with anaemia and referred to a haematologist that my liver was found to be enlarged. I have had spider naevie for a couple of years and asked several doctors what they were and NON of them knew although I mentioned every time that I was concerned about hep C as I'd had blood transfusions before blood was checked for contamination. Again it was the haematologist who recognised what they were. It doesn't instill a great deal of confidence in the medical profession 😒 Deb

[Link227 in reply to Ktltel]

I have cirrhosis from alcohol and my LFTs are always normal. You need scans. Especially in the compensated stage.

And frankly, it took like 7 doctors visits for me to convince them to give me a scan, as doctors apparently refuse to believe anything other than the very basic liver tests.

So surprising everyone is getting cirrhosis, giving the zero monitoring we do for the liver (here in the United States at least - though I know y’all have your own epidemic).

[Ktltel in reply to Link227]

Even your albumin and bilirubin are in normal range?

[Link227 in reply to Ktltel]

Yes ma’am. GGT too.

[Ktltel in reply to Link227]

Wow, how is that possible with being in stage 4 fibrosis. I know the liver repairs itself.

With my disease its a constant battle. My own body is attacking my bile ducts. Eventually I will have varicies, fibrosis and Cirrhosis. All my LFT'S are elavated. Right now my albumin and bilirubin is still in normal range. My hepatologist says I'm early stage PBC but after reading about you I'm scared I maybe further along. How do you feel?

Stella

[Link227 in reply to Ktltel]

Eh, it comes and it goes. I have nausea, and I generally eat much much less than before. Have dropped lots of weight and some muscle tone.

I literally thought I was ok, went from social drinking to an alcoholic for 1-2 years, and when I sobered up (I drank 6-7 beers a night), i noticed that I had no appetite and felt ‘off.’ My skin color is also quite strange now, though no one else notices it... it’s not yellow, and I don’t have any jaundice or high bilirubin, but it’s definitely ‘off’ from what it used to be.

Since PBC is so slow moving, I’m not sure if you’ll notice when you dip into cirrhosis... I didn’t notice it til I stopped drinking on a regular basis. Based on posts I see online - many folks don’t notice it til they have a GI bleed or ascites (both of which are even later stages than me).

Do you see a hep? I’d get scans regularly to check the state of your liver. Blood tests tell you less than nothing. It’s stupid to have perfectly fine bloodwork and cirrhosis, you’d think we could figure out how to do screens or something by now, it’s 2018 lol. My only guess is scans are too expensive for insurance, so we all get to die instead 😢 And while I was an alcoholic, the NASH/NAFLD epidemic is terrifying and silent. People need to seriously spread some liver awareness, make organ donation opt out, create a device to keep livers functional longer outside of the body, find a cure for cirrhosis, etc etc etc. Even within alcoholism, people aren’t aware of overlapping sensitivity - like being obese and an alcoholic will kill your liver faster.... and so many other things. And hitting compensated cirrhosis gives you no warnings, etc. Just terrible all around. I sit beside people in AA meetings that drank fifths of vodka daily for decades and are fine - and then some of us hit the wall faster. I’d be annoyed if I were you, with PBC, sharing the list with alcoholics - but also trust that no alcoholic thinks this will happen - and no one knows when they go too far. Alcohol needs to be treated more like smoking, like the poison it is. That and liver awareness (even within the medical community), is sorely needed.

[Ktltel in reply to Link227]

It's true, I've been diagnosed for 2 years but my hepatologist thinks I've had it much longer. I'm finding out that doctors don't know much about PBC. And many of them dont agree on which tests or scans are best to track progression. You said blood tests are like nearly doing nothing yet that's all doctors do. They start off with a biopsy, then an ultrasound every six months and labs every 3 months. That's it. Everyone on these forums say get a fibroscan but i'm overweight. Can't have a fibroscan unless your BMI is a certain number. All I want to know is the truth about what stage I'm in. My biopsy didn't even show PBC. But, biopsies take several small samples of "one general area" out of a very BIG organ. I've been told they aren't reliable. I've had an MRCP, and an ERCP also. They didn't show anything remarkable. Yet here I am with elavated LFT'S. I've been diagnosed with PBC off of my labs and having a positive AMA-M2 Enzyme. I know I have it but no one can tell me truthfully what stage i'm in. And just recently my ALT and AST have really gone up. My Alk-phos has always been elavated. Don't know where to turn. Its so frustrating.

[Hidden in reply to Ktltel]

Hi kt

Interesting post. All this data you mention. I was in liver clinics for about 4 years. I never had a biopsy, a fiboscan (hadn’t even heard of it until I joined this forum post my transplant), never heard of PBC (stll don’t know what it is - will have to check our Glossary 😁), never heard of ALT or AST, MRCP?, ERCP?, AMA-M2 etc. Sometimes - and I seem to be the odd one out here - we seem to want to much data. My thoughts are that these consultants study and practise their specialisms for years and years and years. Who are we to want to know data that we cannot possibly (most of us I suspect) begin to understand the significance of?

Kt I am not criticising you because most people on here do the same. It is just my thoughts, and maybe I buried my head in the sand too much, but at least I didn’t constantly worry about data and still got my absolutely fantastic “new” liver within 8 weeks of getting on THE LIST.

Sorry to go on and on 😬

Miles

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[Ktltel in reply to Hidden]

PBC is an autoimmune disease where my own body is attacking my bile ducts. It will lead to varicies, fibrosis and Cirrhosis. Knowing what stage I'm in helps me to know if i need different medications, and even qualifying me to get in on clinical trials and more. There is no cure for PBC. I guess I want to be better equipped in this battle by educating myself to fully understand this disease. Know your enemy and all that. Many doctors may know Cirrhosis, but PBC is another thing. Doctors and patients are learning together.

[Hidden in reply to Ktltel]

H again ktl

But “helps me to know if I need different medications “ - that is the medical professionals job surely, not yours. Or do you have medical qualifications (genuine question - I’m not being facetious!)

Miles

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[Ktltel in reply to Hidden]

Yes, its my decision. There are only two medications for PBC. If my hepatologist would stage me, I could pick the medication that best suits me. He may recommend one, but, as of now I am a partial responder to it. My LFT'S (liver function tests) are still climbing. So I only have one other alternative. Lots of side effects so, yes he leaves the choice up to me

[Hidden in reply to Hidden]

On the contrary. Quite a few of us understand the data and its relevance quite substantially. I had even my hepotologist indicate to me that I had tapped her out of the upper end of her knowledge. Whilst that was both complementary and unnerving I'm reminded that as many know on this forum.. If one left it up to some of these doctors they would tell you that your fine and it's all in your head until you are dead. So while I hear your comment and respect it as I know some like to leave it to the professionals as it were. We often must be our own advocates and knowledge is power and some of us choose to wire ourselves into the main transformer so to speak.

😊

[Hidden in reply to Hidden]

Hi Phoenix

I also hear your comment and don’t agree. But hey ho no more to be said 😁

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[Hidden in reply to Hidden]

To each is own mate

[Hidden in reply to Hidden]

Mate?

[Hidden in reply to Hidden]

Mate.. friend.. fellow member

[Hidden in reply to Link227]

Totaly agree that alcohol should be adressed in the same way smoking has. All soaps on tv have had to stop showing cigarette smoking (unless making a point) but every scene still shows bottles of wine on the tables in the "homes", cans in hand and filmed constantly in the woolpack and rovers return. With the amount of alcohol portrayed as being consumed , all the characters should be yellow, riddled with liver disease or dead!

It angers me greatly but the powers that be just won't listen !

[Hidden in reply to Hidden]

I completely agree Laura. Why is alcohol treated so “leniently” compared to smoking. It is basically saying no alcohol = no fun. Those of us that have stopped know this isn’t necessarily true.

Those of us that have stoppedalso know that in many cases, i.e. like me 😁, one beer/glass of wine can readily become 5, 6,7 or more beers/wines.

Miles

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[Hidden in reply to Hidden]

Im convinced the reason nothing is done to discourage drinking is due to the amount of revenue it generates and since tobacco sales have dropped due to alternatives and smoking bans in many areas, the government has obviously decided they need to make up the shortfall. I see the ads for whiskey are already back on tv in time for Christmas..... disgraceful.

Figures show the tax generated from alcohol sales in a year far outweighs what it costs to treat alcoholic related diseases. (Which must be massive when you consider it cost £21000 for my husband to be cared for for 10 days in ICU. That doesn't include the other hospital stays and medication caused by his addiction)

However smoking related illnesses costs more than the tax generated from tobacco sales. It also explains why the government wants to tackle the obesity problem now too.......it's costing too much to treat.... interesting isn't it?

[Hidden in reply to Hidden]

I completely agree Laura with everything you say. Money talks unfortunately. I was told my tansplant and care in hospital cost £350,000. Frightening....

Miles

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[Hidden in reply to Hidden]

Yep x

[Beture47 in reply to Hidden]

It's ridiculas I watch Peppa Pig with my grand children. When the pig family sit at table to eat mummy and daddy pigs glasses have red wine in them how bad is that to normalize it on a cartoon for under fives

[Hidden in reply to Beture47]

Oh my god!! That's unbelievably irresponsible...... im shocked and speechless.... what are these people thinking???? 😱😱😡😡

[Hidden in reply to Beture47]

How can they think that is acceptable on a kids cartoon show, when teachers have to check kids lunchboxes to make sure their food is healthy? The world is full of madness and hypocrisy 🤪🤡

[Hidden in reply to Beture47]

Are you sure it was wine and not Ribena?

[Beture47 in reply to Hidden]

Well no. It was in wine glasses and there was only 2 of them on the table

Thank goodness there was none for George and Peppa

[Hidden in reply to Hidden]

Or Vimto?

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[Hidden in reply to Link227]

If you don't mind me asking how were you diagnosed if your bloods were normal. Was it through scans or symptoms. Sorry if that is too personal a question or if you have answered this In a different post

[Chris884 in reply to Hidden]

That’s what I have been asking on here for awhile. Can’t get real answers. All blood work in normal range had ct scan with iv contrast. And it came back saying all abdominal is normal. Liver was first thing saying appears normal. But yet I still have stuff going on that I think is my liver.

[Chris884 in reply to Chris884]

Let me know if you can find a answer

[Hidden]

Curious as to how the diagnosis of cirrhosis was given to you? Because fibroscans alone being in the kpa range of cirrhosis don't always mean cirrhosis. People with high kpa scores don't always have cirrhosis. And people with low kpa scores don't always not have it. The test measures stiffness not fibrosis. Active hepatitis can inflate th sore incredibly