compensated cirrhosis

[rupertj]

I know I’m the past year I’ve had lots of questions and concerns with the possibility of liver disease/cirrhosis. And this group has been very helpful. I’ve had multiple ultrasounds in the past few years. Some noting a minimally heterogeneous liver and the latest two note a normal appearing liver. I’ve had two SWE ultrasound elastographys both in normal range. My liver labs are normal( ast/alt, albunim, platelets)

findings I’m worried about:

I have been diagnosed with Unilateral nevoid telangnacia. Basically dilated blood vessels which have been linked to high estrogen and liver disease.

I’ve had blood work for other reasons and have some abnormal findings which can be seen in liver disease.

Now if labs and imaging are often normal in compensated cirroshis , I don’t understand how drs can dismiss it as “your labs and imaging are normal therefore you don’t have cirrhosis “ seems to me that’s the reason so many get diagnosed when it’s too late. I feel crazy but I can’t help but think the drs are missing something.

[AyrshireK]

I really don't know why you are still trying to convince yourself you have cirrhosis when literally EVERY scan you've had has been clear barring some fatty change which can be tackled with improved diet and exercise. The dilated blood vessels you mention are more common in hormone issues, you have also previously mentioned you have other hormonal and thyroid issues and it's probably these you need to investigate further.

It is highly unlikely that ALL the scans and tests you have had would miss cirrhosis if it were there.

[rupertj in reply to AyrshireK]

would LFTS have to have been abnormal at SOME point if I did have cirrhosis? They are normal now I’m assuming if I did have liver disease those labs would’ve been elevated at some point? Or can you just have normal labs all along and still end up with cirrhosis? I can see as far as 2015 in my patient chart and they have never been deranged.

[AyrshireK in reply to rupertj]

Cirrhosis is the final stage of the process of liver damage. There would have had to have been some assault on the liver either through illness, genetic condition, toxins or fatty build up for hepatitis and the process of fibrosis to progress.

The liver cells as they become damaged will either stop releasing the chemicals they should or indeed produce and realease others. This derangement would be seen in liver function test results. Elevations of liver inflammation markers etc.

When the liver becomes cirrhotic the remaining healthy cells in the liver can sometimes compensate for the in-effect dead/scarred/shrivelled liver cells and if the attack on the liver is stopped then bloods can reflect the compensated state.

However, if the liver is too badly damaged that it can no longer function properly you will see different blood tests becoming deranged leading to the more advanced symptoms of liver disease - low albumin contributes to fluid build up, high bilirubin to jaundice, itching dark urine, high ammonia and other toxins to Hepatic Encephalopathy.

You have had all the gold standard tests for identifying the presence or not of cirrhosis and normal bloods all along. Normal bloods are normal - if the range is 10-79 and yours was 78 it's still normal.

Every single ultrasound my hubby has had over the past 10 years (20 scans - one every 6 months) has been clearly able to see his cirrhosis, it changes the echotexture, contour of liver and more). I have rarely heard of a case in 10 years membership of this forum where such a range of tests have genuinely missed cirrhosis - other liver changes perhaps.

No doubting you may have something hormonal going on but you are indicating elsewhere that peri-menopause may be involved plus under active thyroid. Nothing you have posted in the past few months screams liver cirrhosis - some fatty change and some early fibrosis which you should be able to tackle.

Katie

[rupertj in reply to AyrshireK]

thank you so much for that detailed reply. It really means a lot when someone takes time out for a complete stranger ❤️ Your responses do make me feel a little better it’s just hard when you have health anxiety and a history of alcohol abuse. My one question is, if during the process of the liver cells being damaged is when liver function tests would reflect that damage , how come so many people don’t get diagnosed until cirrhosis hits? Wouldn’t their blood work show an issue long before that happens?

[AyrshireK in reply to rupertj]

I think those folks (like my hubby) never get identified early because they arn't going to doctors with wee niggles so they don't get the tests in time to pick up early signs - my hubby had full on decompensated cirrhosis by the time he was diagnosed he'd rarely had bloods taken as it's not routine here and wouldn't have been identified as in a liver risk group - non drinker, non drug taker, no sexual partners, fit, thin, active, no tattoos, no foreign travel.

(I am 49 and have only ever had one set of bloods taken in my life and only then due to a lingering chest infection)

Katie

[rupertj in reply to AyrshireK]

oh wow I didn’t realize that! Here in the states we typically get labs drawn yearly including LFTs

[AyrshireK in reply to rupertj]

It's not routine in the UK, there is no routine monitoring or regular health checks and you only get tests if you present at your doctors with an issue and even then most GP's don't have the expertise to do much with results.

The British Liver Trust currently have a campaign running to try to push for regular and early screening (including pushing parliament to implement new health strategies) and that way any one who does present with a potential issue can be thoroughly screened and interventions put in early enough to stop progression. Trust me you've had way more screening and test that most folks over here.

Katie

[rupertj in reply to AyrshireK]

wow that is crazy!

[rupertj in reply to AyrshireK]

One other question for you if you don’t mind? So Past ultrasounds have noted “minimally heterogeneous liver, and minimally coarsened parenchyma. With normal echogenicity.”Correct me if I’m wrong, This means they see some coarsening of the liver due to fibrosis/scarring. But when it says normal Echogenicity, Isn’t that saying there’s no fatty liver? In other words the coarseness found is from fibrosis not fatty liver. In your comments you keep saying based on my scans I had minor minor fatty liver but it seems as though the comment “normal echogenicity “would mean no fatty liver?

My most recent Ultrasound makes no other comments Other than normal Echogenicity. Which seems to mean no fatty liver. It doesn’t mention anything about the prior coarseness. So I’m assuming that means it wasn’t detected.

does that make sense? I know I can ramble! Just trying to make sense of it all!

[rupertj in reply to AyrshireK]

To clarify what I was trying to say in my previous note. Echogenicity is related to fatty liver. Not Fibrosis or cirrhosis. So normal echogenicity only means no fatty liver.

[Fibro2021 in reply to rupertj]

Sorry for expressing my opinion here. The assessment of ultrasound is quite subjective and two different operators may describe the same visual picture of ultrasound differently. If you track changes in ultrasound over time then it's desirable that it be one operator and the same ultrasound machine.

[rupertj in reply to Fibro2021]

makes sense

[rupertj in reply to AyrshireK]

Like wouldn’t routine labs pick something up long before It’s full-blown cirrhosis? I see so many people on here who aren’t diagnosed until they’re in decompensated state with lots of issues I guess I’m not understanding if routine labs would pick up a problem then why such a late diagnosis

[islandanonymous in reply to rupertj]

This happened to me. Basically because my family doctor ignored my unusual blood test results so I had full-blown cirrhosis (although compensated) before I was diagnosed with PBC.

[rupertj in reply to islandanonymous]

Can I ask which blood tests were abnormal?

[rupertj in reply to AyrshireK]

Sorry for all the questions but you seem to know a lot about this stuff so I appreciate your replies!

[islandanonymous in reply to rupertj]

Oh wow, I completely forgot so had to dig out my old reports. Alkaline Phosphatase, Bilirubin, Alanine Aminotransferase, Aspartate Aminotransferase, Gamma Globulin, Smooth Muscle Ab (positive), platelets, ammonia, RDW, Igm, nuclear ab titre pattern, mitochondrial Ab. I think that's it! Those were results of several blood tests, not just one. Doctor said my levels were just "normally that high". I actually looked into suing him!

[rupertj in reply to islandanonymous]

wow…. U should! That’s unacceptable

[islandanonymous in reply to rupertj]

When I looked into it I discovered that they're practically invincible. And it would've been too stressful. Anyway, he retired awhile ago.

[Fibro2021]

As far as you wrote in your previous post four months ago you have elevated levels of alkaline phosphatase (ALP). Do you currently have elevated alkaline phosphatase and what does your doctor attribute the elevated alkaline phosphatase to? Fibroscan or elastography (SWE) are quite sensitive and specific in determining the presence of cirrhosis of the liver and worse differentiate the degree of fibrosis at the pre-cirrhotic stage. If they do not show cirrhosis, it is very unlikely that the patient has cirrhosis even if cirrhosis is compensated. Magnetic resonance elastography (MRE) is now considered the most modern method for diagnosing liver fibrosis, and the "gold standard" in the diagnosis of liver diseases still remains a liver biopsy and the study of the histological structure of the liver tissue.

[rupertj in reply to Fibro2021]

My last value for ALP was 107 I think the top range for the lab it was 122. My doctor is not concerned because it is in normal range however it is higher than normal for me

[Fibro2021 in reply to rupertj]

That is, in other words, your ALP is within the reference interval and it is quite natural that your doctor does not care about this situation. I understand that you are more concerned about long-term or excessive drinking in the past and possible alcohol-related liver damage. Do you have health complaints such as insomnia, weakness, brain fog or muscle twitches, or any other symptoms?

[rupertj in reply to Fibro2021]

no nothing like that

[Fibro2021 in reply to rupertj]

I think fortunately you have nothing to worry about yet. You definitely don't have cirrhosis if SWE didn't show it. You don't have any possible HE symptoms either. So all is well and continue your efforts towards a healthy lifestyle.

[rupertj in reply to Fibro2021]

thank you I hope you are right!

[Partner20]

There are many reasons for high ALP, including stress!! If a doctor is at all worried, more testing is done to determine the exact cause. However, your result is well within the range, so there is no need to be concerned. If the test were to be run again tomorrow, the result could well be different, as it represents a moment in time. Age makes a difference too. Please stop stressing, as you have good results from both blood tests and gold-standard investigations. Your concern about the rare condition you mention is more involved with oestrogen than anything else, which comes under the endocrine umbrella.

[Roy1955]

What part of theres nothing wrong with your liver is confusing you?

Fluctuations within the normal range are........... NORMAL.

[Alibaba80]

The best diagnosis for liver issues is without question biopsy.

Unfortunately my scans and bloods were relatively normal also and only a biopsy gave me a confirmed diagnosis.

can I ask how did you get diagnosed with unilateral nervous telangnacia?

[rupertj in reply to Alibaba80]

skin biopsy

[Alibaba80 in reply to rupertj]

Liver

[rupertj in reply to Alibaba80]

that’s what I’m afraid of. I’ve seen two hepatologist, my regular dr, a GI dr and a dermatologist. They all say my case is not due to liver disease.

[Alibaba80 in reply to rupertj]

Unfortunately that was the same for me and several others on this forum. We were falsely reassured by many doctors but that does not mean that is the case for you of course. It could be that you genuinely do not have a liver issue.

It could be that your doctors are correct. The problem is for many people with liver disease their diagnosis is obvious and straightforward due to scan and blood abnormalities. Unfortunately that's not the case for everyone.

[rupertj in reply to Alibaba80]

my dr said with normal labs and ultrasound a biopsy is unwarranted and not without risk. So nervous they are missing something

[daveyboixx in reply to Alibaba80]

if you don't mind me asking what diagnosis did you get following biopsy?

[Alibaba80 in reply to daveyboixx]

Nodular Regenerative Hyperplasia

[rupertj in reply to Alibaba80]

Can I ask why you were sent for a biopsy if your labs were normal?

[Alibaba80 in reply to rupertj]

One of my hepatologists noticed from one of my ct scans that my spleen had slightly increased from a previous scan.

[rupertj in reply to Alibaba80]

my spleen has been normal on all scans. We’re u having liver issues that prompted you to get scans in the first place?

[Alibaba80 in reply to rupertj]

Yes....lots of unpleasant symptoms

[daveyboixx in reply to Alibaba80]

do you mind me asking what these were? I'm sorry to ask but I've been experiencing various symptoms for almost 3 years, and apart from a few spikes in bloods everything comes back normal.

[Alibaba80 in reply to daveyboixx]

I have terrible digestive symptoms...tummy ache, constipation, diarrhoea, weakness, tiredness, headaches, lack of appetite, heart symptoms and dizziness. What are your symptoms?

[daveyboixx in reply to Alibaba80]

Fatigue, which coincides with feeling generally crap, ruq pain referred to shoulder and base of right foot, itchiness, eye floaters. Also can't tolerate alcohol anymore (sick following day) all tests normal

[Fibro2021 in reply to daveyboixx]

Have you checked the ammonia level? It was quite informative for me.

[daveyboixx in reply to Fibro2021]

Not that I'm aware of.......

[Fibro2021 in reply to daveyboixx]

Elevated blood ammonia level is usually associated with hepatic encephalopathy and may occur as early as the pre-cirrhotic stage of diffuse liver disease. This requires specific therapy aimed at lowering the level of ammonia.

[Alibaba80 in reply to daveyboixx]

Ideadly you need a liver biopsy but unfortunately they can be very hard to get. Are you in the UK?

[rupertj in reply to Alibaba80]

no the US

[pushthrough in reply to rupertj]

if you want to completely rule it out get an mre and pay 10k because you will have a hard time getting a hepatologist to refer it out through insurance because your other tests were normal. Btw, very few hepatologists in the states will do a liver biopsy because the mre has replaced them. I’m not sure why you are so convinced you have it to be honest.

[islandanonymous]

I have had cirrhosis for almost 10 years (comepensated) due to PBC. It shows on my twice yearly ultrasounds. However, luckily my bloodwork has been normal for many, many years and I feel fine.

[rupertj in reply to islandanonymous]

He mentioned that you were misdiagnosed because abnormal blood work was ignored by your doctor for those just the regular liver function test?

[islandanonymous]

If your labs are normal and your ultrasounds are normal, I don't know why you'd think you have liver disease. Plus the doctors tell you that you don't have it. I would believe them!

[pushthrough]

Rupert, I was diagnosed with cirrhosis while compensated and still compensated. I’m in the states like you. My fibrosure test said I had f4 and guess what? It was right and confirmed by an mri, mri, with elastography (mre), and a fibroscan! Even the ultrasound picked up issues but they didn’t tell me until they confirmed with other tests. Every test detected liver disease. You could look at me and not even know I have it. If you saw 2 hepatologists I’m pretty sure they would have found it and you would be seeing them every 6 months like the rest of us after your mri. Which btw, still shows I have cirrhosis. I don’t trust blood tests 100% in diagnosing liver disease but I do trust the imaging and ultrasounds. Gastro physicians and hepatologists air on the side of caution so if you are even close to having liver disease you will be seeing them often.

[rupertj in reply to pushthrough]

I didn’t have an MRE but a SWE ultrasound. Two of them. My two most recent ultrasounds showed nothing abnormal(although two prior ones did show some minimal coarseness) and both the elastographys were within normal range. I saw one hepatologist and my GI dr. I am scheduled with another hepatologist to get a second opinion.