ALD and Fibroscan scores: Hi everyone... - British Liver Trust

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ALD and Fibroscan scores

andy2003 profile image
14 Replies

Hi everyone

Have a few questions but thought I would give a detailed background.

I had fatty liver start about 4 years ago. Only discovered it because i had some spider angioma appear and my constant googling led me to suspect liver issues. I had some spider angioma as a kid so there may be a genetic component as well. Have a couple on my hands and shoulders. I found that they can be caused by alcohol alone in drinkers. They can appear at the alcoholic fatty liver stage as well according to what I read  in numerous books and studies.

I was never what I would call an 'alcoholic', but definitely never gave myself a proper break. I just got into the habit of drinking about 3 large beers most evenings after work. On the weekend i would drink more when i went out. Never had many nights off and probably averaged about 60 units a week. Never had issues with alcohol. I am pretty healthy and exercise a lot, have a normal life and maintain a good weight. I am 41.

My blood results have always been normal. GGT has never been above 18 although I always stopped drinking a few days before blood tests. All ultrasounds have always said mild fatty liver. The last one said near normal. My ast/alt have been reversed by a few points but it has never concerned the doctors. I put it down to an ongoing muscle injury. All other blood work has been ok.

I have been living and working overseas for ten years. The medical system here is great so I have had lots of checks. Had an arfi scan which was almost normal. This is a new type of scan similar to an ultrasound and fibroscan combined. Unfortunately, I didn't totally stop drinking when I first discovered fatty liver and carried on drinking even when I had some mild liver 'grumbling' although this waxed and waned. This liver ache has totally gone now. Had a few breaks after first told about fatty liver a few years back, and cut down to about 20-30 units a week up until this time last year.

Anyway, my main issue was this. According to the fibroscan scorecard, my 7.7 put me at the end of F1. My last score of 6.9 puts me in the middle. I know that fibroscan is good for diagnosing cirrhosis and totally healthy livers so my score puts me in the grey area a bit. I recently read an online study by a doctor called Mueller and he states that if AST is normal or below 50 then according to his study F3 fibrosis can be diagnosed at lower cut off levels. The high cutoffs for ALD are likely due to inflammation independent of fibrosis. In other words someone with 8kpa and normal blood results can be diagnosed with F3 according to his study. Many other studies have cut offs of about 9.5 for F3. This study says that cirrhosis can be suspected in an abstinent drinker with 12.5kpa. This got me worried as I had been abstinent for a month before my 7.7kpa score. My blood was normal. Does that mean I was so close to stage 3 fibrosis? Not sure.

After 4 months of abstinence my score had come down to 6.9kpa. My doctors said any mild fibrosis would regress or heal given time. I stayed totally abstinent for about 6 months but I did have a few weeks in nov and dec where i drank under ten units a week. Actually, i find it kind of easy to stop. Never had urges or withdrawal symptoms. Just find the social side difficult. I was mainly drinking shandy and light beer for those weeks I wasn't abstinent. Feel a bit bad about this and hope it hasn't worsened my condition. I also did the same earlier this year when my pet got sick and died and I was suffering. I have a follow up fibroscan in 2 weeks.

Sorry for the lengthy background. Just thought it would be easier to explain my position.

Have anyone ever heard anything else about fibroscan scores in recently abstinent drinkers? I know that scores can drop rapidly even after a week's abstinence. In that study I quoted it said that scores remained stable after a certain period of time. Mine didn't so no idea what to believe. It is all so confusing. My score fell over four months but my blood tests didn't indicate inflammation. Surely this wasn't fibrosis healing so quickly. I have read though that alcohol can stiffen the liver in other ways besides inflammation and fibrosis. Something about how it affects the cells but I cant remember where I read it.

Anyway, if anyone has any info about all this I'd love to hear it. I am always stressed about this. Just hoping that my initial 7.7kpa didn't indicate that I was close to severe fibrosis (according to that study). I read that back home (UK) they say that under 7 is normal, but what if you haven't drunk in a while? Would 6.9kpa still be normal in an abstinent drinker. I suspect not. I also wondered if anyone had fibroscan scores come down even though they were still drinking (a tiny bit). I am not really looking for an excuse to start again - it is more due to worry.

Regards

Andy

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andy2003
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14 Replies

Hi Andy. 

I understand your plight.  I was diagnosed with Alcohol Fatty liver by way of ultrasound in November 2015.  My blood work has always shown normal.  My ALT/AST scores are sometimes reversed but not by much and if I look at my history even 15 years back that has always been the case.  As is my Mother's who doesn't drink at all.  My understanding on the ALT/AST reversal ratio is that it's more of a concern when the AST score is 2X that of the ALT and out of normal range.  My Hepatologist down at UCLA did not see a concern with mine.  My AST is 20 and ALT is 16.  I have a Fibroscan scheduled for the 4th of May so don't know my reading on that yet.  I have been completely alcohol free since my diagnosis in November.  There is a gentleman on here Ralph2014 who is well educated when it comes to Fibroscans and their scores.  Hopefully he reads your post and chimes in with his thoughts.

If you are worried about alcohol doing additional damage then I would trust your instinct and try very hard to refrain.  I know it is difficult socially as I am living it also. 

Another thing that my Hepatologist checked for on my last blood work is a test called Alpha-1 antitrypsin.  This is a protein found in the blood that helps protect tissue from enzymes of inflammatory cells.  If you are deficient with this protein it has been linked to increased risk of lung and liver disease.  There's a pretty lengthy detailed explanation on it if you research it, but may be worth them checking on your next blood work.  

Wish you well Andy.  Keep up the good work on refraining from alcohol because only good things come from that :-)

Wendy

andy2003 profile image
andy2003 in reply to

Thanks Wendy

Good luck with your recovery and your scan next month. I have corresponded with Ralph before on another site which we are both members of. He is pretty well informed about fibroscan stuff too and has given lots of good advice there. I have unfortunately spent many many hours googling stuff which is not always the best thing to do. I think I have read everything there is to read on the fibroscan. lol! Still, after reading about that particular study and fibroscan results in drinkers with normal bloodwork it sewed the seeds of doubt in my mind again. Not sure how the fibroscan scorecard works for those in my position. I am hoping that my initial result of 7.7kpa (taken after 1 month abstinence) which came down to 6.9kpa (after 4 months) was due to the effects of alcohol on the liver tissue. Whether this was due to inflammation, healing fibrosis or some other means, I don't know. My bloodwork was always good even when I had fatty liver 'pain' before. Hopefully my follow-up scan next month will show further improvements. I feel great, but to be honest never really felt bad before either, and wasn't a massive daily drinker. I suspect I just had mild fatty inflammation for a few years which never really had chance to resolve properly. I will continue with the abstinence though. 

Thanks again, and good luck with your recovery.

in reply toandy2003

I absolutely think that you can reverse your damage with abstinence and healthy eating.

If it helps any, it took three months of no alcohol for my side to stop aching and five months for my digestive issues to resolve.  I have read from other posts on this forum that sometimes it can take up to 18 months for the liver to make it's recovery.  I have read that's it's one month of abstinence for every year spent drinking.  Also no two people are exactly the same and what may be true for some doesn't make it true for everyone.

I spoke with a gal out here in California a couple months ago.  Her husband was diagnosed with cirrhosis and had a Fibroscan score of 16.  A year later with abstinence and super healthy diet his last score was down to a 10.8.

I suspect with abstinence and some time you'll be fine and your score will go down.

Thanks for your wishes too :-)

Wendy

briccolone profile image
briccolone in reply toandy2003

very similar to my experience-3 mintsh to get rid of symptoms although GGT levels still above normal-had I abstained for longer I'm sure they would have dropped eventually

in reply tobriccolone

Hi Briccolone-

Yeah I always read your posts because you have a very similar story as me.  Did you ever get a Fibroscan done?  I don't recall seeing a post about it.  I'm just curious as I am scheduled to have one on the 4th of May.  Had one scheduled back in March and I chickened out.  Hope you're doing well :-)

Wendy

briccolone profile image
briccolone in reply to

doing Ok Wendy-thnks-I've putting the fibroscan off-dont really have any symptoms other than digestive ones-I suspect due to mild inflammation-working hard on avoiding alcohol but not always....bad boy! interested to know your results-you may inspire me....best K-I'm sure you'll be fine

in reply tobriccolone

Oh I understand with avoiding the alcohol.  It is not easy especially when something stressful happens. Just in the past two weeks my digestive issues for the most part have cleared. 90% anyways.  No more acid reflux or bubble guts haha.  

 I will post my results as I leave the appointment...hopefully with positive results.  I'll keep you posted for sure.  Thanks.

Wendy

andy2003 profile image
andy2003

Hopefully it will come down further given time. It is possible that the woman's husband was never at a cirrhotic stage. Inflammation at the time of his fibroscan may have been responsible for the high reading. That is why I have been concerned. I was initially quite happy that I seemed to be miles from F3 fibrosis with my scores of 7.7kpa then 6.9kpa, but after reading that scores in drinkers without active inflammation had different cut off levels, this got me spooked. I'm hoping that some others on here may have some more info about this.

Thanks

in reply toandy2003

I'm not sure about the inflammation with his first reading.  That would make sense though.  I'm fairly confident his diagnosis of cirrhosis was accurate. He had big symptoms four years ago when he first was diagnosed.  He kept drinking up until finally two years ago.  Hospitalized several times due to Hepatic Encephalopathy and vomiting blood.  He suffered at the time also of ascites as she even described him as looking like a pregnant skeleton. It's possible his first reading wasn't as high as it came back due to inflammation coupled with scarring. However, now with the alcohol being gone the inflammation has subsided and now just the scarring remains?  That would make sense to me and may be the reason for the 10.8 score now from 16. 

I'll post my Fibroscan results when I get them back on the 4th.  I had an appointment scheduled back in March and chickened out :-(  Going the distance this time as I have to know for my own sanity.

WendyXx

in reply toandy2003

I think with your lower score Andy that even if its Fibrosis that it CAN be reversed.  You have no other symptoms.  Time and being healthy.  You focus on that!!  Think of someone you got into a fist fight with...how long would it take that person to heal completely?  That person may look and feel better in a few weeks but will take longer for all the healing (on the inside) to take place and to forgive.  Think of your liver that way.  It took a little beating. Treat it well now and give it some to time to heal and forgive :-)

briccolone profile image
briccolone

glad you posted Andy-you get a much broader spectrum of experience and knowledge

B_RC profile image
B_RC

According to the score sheet used, based on alcohol it is over 12 for F3 and over 23 for F4. I had a score of 12.4 and this was diagnosed via abdominal pain in the right side. 

andy2003 profile image
andy2003 in reply toB_RC

Thanks. My questions were just related to whether that score sheet still applied when a person had normal blood results. I think the fibroscan scorecard has high cut offs to take into account inflammation.

andy2003 profile image
andy2003

Hi

Had a follow up fibroscan. Down to 6.3kpa from 7.7 this time last year. Puts me at either no or very minimal fibrotic changes. Accuracy was 100%. IQR of 0.8 (13%). Highest score was 6.8kpa. Lowest was 5.5. CAP (which measures fat) was 186, which is totally normal.

Feel happy about that. Was initially a bit worried though as when the operator first started, the readings on the screen were coming in quite high from 8 to high 10s. She then altered the position of the probe and I got the ten accurate measurements all in the same ball park. I know there are not many on here with fibroscan experience, but anyone had a similar experience where the initial readings were wrong? The operator said those readings had to be discounted due to the variability or something. Gave me a scare though.

Andrew

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