Severe Liver Fibrosis Diagnosis - British Liver Trust

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Severe Liver Fibrosis Diagnosis

BKinUS
BKinUS
31 Replies

Hi. Wondering if anyone can shed some light on my test results. I have been researching and studying but any input would be appreciated.

kPa: 10.6 (this put me just into the F3 category per the test findings; yet when I went to Sloan Kettering's chart, 10.6 indicated F2 for alcohol-related issues.

CAP: 189; IQR46; Second IQR reading: 1.3; IQR/med.: 12%; 10 measurements (not sure what all the different IQR scores mean).

Blood test results: ALT 32 (range was 0-25), so flagged as high; AST was 25, which is in the 0-32 range, so no issue there.

A score for non-specific inflammation was in the normal range.

An MVP score of 12.1 was flagged as high. (high platelet count, which can be from B-12 deficiency?). Calcium was low, along with Vitamin D, which I am no supplementing with a whole food grade product. RBC was slightly low.

Other readings were in the normal range.

Would appreciate any feedback for those of you in the know. I had stopped drinking alcohol 6 months before the Fibroscan test.

I am going to a liver specialist in a few weeks, but thought I'd see if I could get any information here.

Thanks!

31 Replies
oldestnewest
AyrshireK

The usual chart for Fibroscan does say anything under 11 for alcohol related liver illness is F2. Fibroscan can also give a higher reading if there is any liver inflammation presence.

As regards all your other tests results we arn't qualified or allowed to comment or try to interpret results (forum rules).

Hopefully your doctor will fill in further details at your appointment - regardless if you have stopped drinking you are going to give your liver a great chance of recovery.

Katie

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BKinUS
BKinUS
in reply to AyrshireK

Thanks much!

1 like
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Richard64

I would ask for an ELF blood test with markers. This is a fairly new test which is a lot more reliable than a fibroscan for identifying liver damage, for fibrosis and fatty liver.

Good luck.

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BKinUS
BKinUS
in reply to Richard64

Thank you, Richard. I will do that. Still learning.

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BKinUS
BKinUS
in reply to BKinUS

Richard, if you come back here, could you talk a bit about the difference in the ELF blood test with markers compared to a typical blood test? I had a pretty thorough blood test done by an Endocrinologist, which prompted the Fibroscan (because of what was termed "borderline liver enzymes"). In the meantime, I will research the difference...but .... any tidbits of helpful information would be appreciated. Thanks.

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AyrshireK
AyrshireK
in reply to BKinUS

siemens-healthineers.com/cl... The ELF (Enhanced Liver Fibrosis) test is considered more accurate than fibroscan and traditional liver function tests. Liver Function Tests can be normal even in patients with cirrhosis as it's the still functioning bits of the liver which give off these readings and it doesn't reflect that big bits of the liver might actually be seriously scarred. Fibroscan can be inaccurate in that it can give higher readings if inflammation is present - some folks here have been given cirrhosis diagnosis based on kPa number when in fact they have mild fibrosis but ongoing inflammation. ELF test is fairly new.

Katie

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BKinUS
BKinUS
in reply to AyrshireK

Katie, what are some things that can cause inflammation? I assume alcohol is one, which I stopped 6 months before the Fibroscan.

Thanks for responding.

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AyrshireK
AyrshireK
in reply to BKinUS

Yes, alcohol or any residual fatty liver - your elevated ALT tells you that you have some inflammation.

Katie

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BKinUS
BKinUS
in reply to AyrshireK

Do you know how long it takes inflammation to go away? Seems like since I had not had alcohol for 6 months before the test, that something else is making it inflamed? You may not be able to speculate...just wondering if you have any ideas. The Fibroscan showed that I do NOT have fatty liver.

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AyrshireK
AyrshireK
in reply to BKinUS

Sorry no experience of alcohol related liver disease and the time it takes for inflammation levels to drop.

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Hidden
Hidden
in reply to BKinUS

There is about 126 different causes of liver disease. There are also many other diseases that can affect the liver secondarily. They should test for all or as many as possible. Never let a doctor make the quick assumption that its caused by alcohol without eliminating all other possibilities first.

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BKinUS
BKinUS
in reply to Hidden

Thank you Phoenix. I'm actually the one making the assumption that it's from alcohol. I drank heavily for many years. But, when I go the the liver specialist on July 2, I will be sure to discuss and ask for additional testing.

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BKinUS
BKinUS
in reply to AyrshireK

Do you happen to know if ELF is available in the US?

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Hidden
Hidden
in reply to BKinUS

The ELF tests for blood markers that would only be affected by a damaged liver. Normal LFT tests for the most part detect current inflammation. Why this is relevant is because a person can have a damaged liver but no current inflammation. The LFT test would show normal results. Many of us here with cirrhosis have normal LFT tests because the liver disease is " inactive" now. This can make for mistakes clinically. If i walked in for an LFT test today from a doctor with no knowledge of my past history he/she would tell me my liver is healthy. Ultimately missing the truth of it all.

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BKinUS
BKinUS
in reply to Hidden

Do you happen to know if the ELF test with markers is available in the U.S.?

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Hidden
Hidden
in reply to BKinUS

Yes it is.. this link should take you directly to the US site

siemens-healthineers.com/en...

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BKinUS
BKinUS
in reply to Hidden

Thanks much. By the way, this is off-topic but you seem knowledgeable and helpful. I just got a chat message encouraging me to go to the website: mdjunction.com (that it was a website similar to this one, but in the U.S.). The web address shows not to be secure, so I did not click on it. Are you familiar?

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Hidden
Hidden
in reply to BKinUS

Mdjunction is a great site as well. It gets quite a bit more into technical stuff than this one I find. I am a member of both as im in Canada. If you do visit look up a member by the name of MoonWatcher. Hes also a quite knowledgable fellow. Unless hes changed it I believe his profile pic looks like Dumbledore lol.

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BKinUS
BKinUS
in reply to Hidden

Phoenix, you are a wealth of information. Can't thank you enough. Yes, I think it's Moonwalker...was mentioned. SO glad to hear the site is safe...just didn't want to click on an iffy site. I will check it out.

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Hidden
Hidden
in reply to BKinUS

Your very welcome🙂 never hesitate to ask anything!

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Estiebargle

Hello newbie,

First things first you mentioned an alcohol chart. If you are a heavy alcohol user you should stop like, right now until you get to the bottom of what is going on for your liver.

Next thing I can recommend is staying in the present, once you have all the facts and have seen your specialist the numbers and test results make more sense. There is a lot of super helpful info on the internet. But tests need to.be interpretated by physicans and gastrointrologists.

My final piece of advice is to keep your own records and take notes. Bring a support person to your appointment to take notes. You will feel more in control.

I really hope this helps. My fibroscan was 20.7kpa and I am still healthy and living my best life. Sounds lile you have caught things early.

Good luck, let us know how you get on

cheers,

Stephanie

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Hidden
Hidden
in reply to Estiebargle

“Staying in the present” - like that 😁👍.

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BKinUS
BKinUS
in reply to Estiebargle

Thank you Stephanie. If you come back here, do you mind telling me how long ago you got your kPa score, and if it has changed over time?

I stopped drinking 6 months ago - before I knew I had a liver problem (just diagnosed). I knew alcohol was doing something terrible to me because of the way I felt after drinking...I just had no idea I had gotten myself to the level of having liver issues. I was shocked, really...though I shouldn't have been because I was drinking "heavily" by definition. I never believed the recommendations and I obviously should have. Hubris/denial, I guess.

Really appreciate your post. I agree that we need professionals for interpreting our results, but I have had several bad experiences over the years because I was not my own advocate and never thought to do my own research or question my doctors. I am a product of my past, which has turned me into a fervent self-advocate.

Knowledge is power. I am careful to be thorough...I know there's misinformation out there...that we are all different, etc. But, I cannot help but want to gather any possible data that might arm me with better questions when I do go into see the specialist in a few weeks.

Again, thanks so much. It's comforting to make a connection with others who understand and are going through similar situations.

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Estiebargle
Estiebargle
in reply to BKinUS

Hello again newbie,

Yes, my first fibroscan was 13 kpa and that was considered in cirrhosis range, and I can remember being very upset. The nurse who did the test was kind of a bitch as well, and was quite judgy and tsk tsk tsk. Hey lady, you are laying some heavy stuff on me right now.. anyway...

Since then I have been cured of Hep C (I imported my medication myself, and got myself cured) and was so happy as I have been sober for 9 years almost, and felt so good.

I went to my specialist appointment and my fibro scan was still at 13, this was Jan 2017. So still needed surveillance. 6 month scans and bloods. Boooo

Then went again at the beginning of 2018 and it had shot up to 20kpa - very bummed and surprised. I had been on a lot of antibiotics, was very puzzling. The dr administering the scan was having so many problems with the machine. It was nuts.

I am a big lass and just didn't feel like it was accurate. To cut a long story short I got mad and advocated for myself and now am having a biopsy. At my last appointment she didn't even give me the test.

This is some good info:

hepatitiscnewdrugs.blogspot...

So I guess get to know your normal, know your baseline and you are your best advocate. It's really frightening at the beginning. The unknown and the feeling not in control of the process. Combine that with no continuity of care between hospitals and gps it's pretty stressful. It's why I was moved to reach out to you.

Good luck to you.

Stephanie

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BKinUS
BKinUS
in reply to Estiebargle

Stephanie, thank you for taking the time to respond to me, and giving me details about your experience.

Invaluable information about us being our own advocates and watching out for ourselves. And, shame on that woman for making you feel "less than." She is obviously in the wrong job! I never understood why we should feel embarrassed or ashamed about getting addicted to a legal drug that kills more people than many other drugs combined. It took me a long time to figure out that alcohol was at the crux of many of my issues. By the time I did, I was addicted and it was no easy task to stop. I'm proud to say, though, that I'm at 7 months sober and feeling great. Wish I had ditched the poison long ago!

Congratulations on your long-term sobriety. Very commendable. I know I will never put that s#*t in my body again!

Anyway, thanks again...really appreciate your reaching out to me. I will also pay it forward down the line as I gain more information about my situation.

Hugs

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Hidden
Hidden
in reply to BKinUS

My fibroscan went feom 58.9 KPA to 17KPA in less than a year. Will be having another shortly. So it can definately change.

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BKinUS
BKinUS
in reply to Hidden

Thank you so much for this information! And well done, Phoenix. If you come back here, do you mind chatting about how you think you got it down? If you think food played a big part, can you talk about the changes you made and foods you ate?

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Trust6
Trust6British Liver Trust

Hello BKinTX,

We know that your test results have given you cause to worry. This is a support forum for those living with or caring for those with liver disease, it is not a medical forum.

The advice and support given here cannot replace your own doctor or medical team. Nobody here is qualified to give an opinion or diagnosis regarding your symptoms or results. In the British Liver Trust we ask that members should not post test results and ask for interpretation / opinion. Test results can also vary according to which laboratory analyses the sample.

If you are worried about your results you should consult your own medical team or general practitioner (GP) who will know you, your medical history and current circumstances.

In the meantime, you can go to the British Liver Trust website where you will find reliable and trustworthy information on how to have good liver health or live with a diagnosed liver disease.

britishlivertrust.org.uk/li...

Best wishes,

Volunteer moderator

3 likes
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BKinUS

Hi Everyone.

I posted a response about my testing on a separate thread a few months ago, but I ran across this old post of mine and thought I would write more here just in case anyone is reading. I still receive emails from the site which is what made me log in, etc., etc.

It turns out that the first scan I had done was performed inaccurately. I would have never known this if I had not been referred to a liver specialist after the high reading. Long story short...I'm sitting in the specialist's (2nd clinic) office and there is a laminated poster showing the proper way to do a liver Fibroscan. It's posted on the wall ... very official and professionally printed. Well, I was totally floored when I looked at it. The first technician had done the scan incorrectly and the second technician held the scanner exactly as shown in the diagram. The first scan took about 3 minutes....the second probably 15. The instrument was held completely differently by each of these two individuals. And, guess what....the 2nd scan showed absolutely NO fibrosis. The reading was something ridiculously low and all the blood work corroborated the findings.

So, to anyone out there...be your own advocate...educate yourself and get second opinions. If I had not just serendipitously happened upon this second clinic.......I would have gone on and on thinking I had a problem.

There's another little cherry on this cake: I logged into the portal of the first clinic and told them how their faulty testing had made me worry that I had cirrhosis for a month and a half. They fired the person who gave me the first Fibroscan and apologized profusely. The clinic should pay a price for employing a tech who didn't know how to do the testing......I could really get on a soapbox about the subject but I chose to just let it go at that and never go back.

In closing, I would like to mention that the clinic that screwed up is respected and sees multitudes of patients. Just a cautionary tale I wanted to share with you all in the hopes that it might help someone down the line.

1 like
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ThreeSmiles
ThreeSmiles
in reply to BKinUS

Well that’s great result - as feckle says - after that stress of the first test. A big Phew I’m sure 👍

Miles

🇧🇧

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Ofeckman

Good result. 👍

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