False postive Fibroscan : Morning... - Living with Fatty...

Living with Fatty Liver and NASH

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False postive Fibroscan

Miesquivel0015 profile image
29 Replies

Morning everybody !!! Anybody have a high fibroscan ? I had one in March of 2020 Mine was at 19 with 299 of fat. my gastro advised me to loose weight I was at 330 lbs.He advised me to get rechecked in 3 months covid hit and had my test in aug of 2020 during those 5 months I was waiting to get rechecked I lost 90lbs and my results where unbelievable my gastro said ... cap100 and my Kpa was 6.4.I know it’s frowned apon to not add test results here.My gastro asked to retest me in one year on aug of 2021 coming up soon it set me in a depressing state because he said it could be a false negative results.I have seen different drs and another gastro for there opinion and all have said I don’t have cirrhosis but that I had a lot of fat in my liver because of bad eating and hard drinking for 10 years.my question is I work my self up and think I have cirrhosis and always on dr google ... I have had mri mrcp ct scans and UA all just show increased fat in my liver but no cirrhosis since I hope I have reversed some of the damage .I hope I will know on aug for another fibroscan.If all my drs have told me I don’t have cirrhosis but one dr my gastro said he doesn’t know... any help would be appreciated I find this page to be a life saver!!!

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Miesquivel0015
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29 Replies
nash2 profile image
nash2Partner

Testing is always a challenge. Congratulations on losing the weight. Great progress. I would question the accuracy of the second fibroscan. A CAP of 100 is the minimum possible in the scale and unlikely to be a valid reading so I think the doc should have had that redone at that time. You definitely should see improvement with your weight loss. I went from a stiffness of 21.5 to 9.6 with less weight loss than you have achieved. You probably have improved your situation but still have fibrosis. Just keep up the good work.

Miesquivel0015 profile image
Miesquivel0015 in reply to nash2

Thank you for your kind words and yes that was something on the test that threw me off as well. I appreciate your response and your opinion.

Drifters_Spark profile image
Drifters_Spark in reply to nash2

He has done a great job. It took a lot of work and dedication to lose significant weight in such a short period of time. I had a follow-up Hepatologist appointment yesterday. He was my newly assigned Dr. since my prior Hepatologists moved out of state. I left the appointment in a funk feeling depressed about what and how the doctor addressed my condition, but first, the following is my history with liver disease.

In 2015, with normal LFTs but abdominal pain but no other physical symptoms of liver disease, I was referred to a specialty group with some of the most highly regarded Hepatologists in the country. I had been a caregiver for five family members for four years, became guardian of my learning disabled youngest brother, in-home caretaker for my son, while caring for three other family members. The stress, severe sleep deprivation, horrible diet which led to significant weight gain all contributed to my liver disease. Eventually, four family members passed in less than two years which exacerbated my already taxed endocrine, and immunes systems.

The Hepatologists I was referred to are leaders in liver disease research. A biopsy, ultrasound, and firbroscan were ordered. The 2015 biopsy revealed autoimmune hepatitis, fatty liver, and end-stage liver cirrhosis, ie. a fibrosis score of 6/6. The Firbroscan was at the max of 75, and the ultrasound confirmed cirrhosis. My doctor at the time advised me what I need to do to improve my chances against further complications, etc., He didn't sugar coat my condition but was very positive that lifestyle changes could get me to a point where advancements in clinical trials for treatments for cirrhosis were just a few years away.

In 2017, my Fibroscan scores dropped to 35 and 309. My doctor encouraged me to continue with the weight loss, exercises, sauna, and a list of supplements he approved for me to take.

In 2018 My fribroscan scores improved to 15.3 and 302. Once again my doctor was very pleased with my progress, told me to stay on course, and reduced my test and visits to twice a year vs. every three months.

In early 2019 my fribroscan scores were 11.5 and 300. When I went in for my test results my previous doctor was very thorough, positive, and thrilled with my progress and asked me, "besides the weight loss and muscle mass added, what in the world have you been doing?" I figured my results must have been good when he mentioned weight loss. Before I was given my test results I was asked to wait because they needed to confirm test results, to which I quickly asked, what is it that you have to confirm? They said they needed to check if the Fibroscan scores were correct and investigate if there were any calibration issues with the Fibroscan that may have resulted in false-positive and negative tests back to the first test.

The doctor said all scans were valid and validated his enthusiasm for the improvement. Being that they are all research specialists too, he asked me for the specific supplements I was taking. I advised him and he said several of the supplements were part of a compound of medication in clinical trials that had shown good results thus far as an antifibrotic agent. I told him I was aware of the trial, researched the medication in question, and added them to my regimen three years earlier. He advised me to keep up the good work and unless I had any complications or concerns I could cut my visits to once a year.

Getting back to my appointment yesterday with a new Hepatologist. I knew my scores would be worse due to weight gain and extreme stress from domestic abuse mostly resulting from COVID-related issues. My Firbroscan scores were 13.2 and 400. I felt the 13.2 was better than expected given the weight gain and stress. My P.A. was still pleased with the progress from 2015 and advised me to get back to work on my lifestyle, diet, and exercise. I told her I am back on a regular gym workout schedule and changed my diet.

However, the new doctor had a completely different perspective. He said, that he felt the initial Fibroscan score of 75 was wrong. I asked but even then isn't a good improvement from 35 in 2017? He said your condition is just going to get worse. He said your MELD score is 7 and your fatty liver is 400. Since he is new to my case, and apparently he hadn't looked at my history. I also advised him my problems started after being misdiagnosed while hospitalized with a severe gallbladder infection, resulting in emergency surgery, and over a three-week hospital admission for internal infection. He said that's why you have liver problems in addition to fatty liver. He briefly reviewed my history and repeated that my condition was only going to get worse. I advised him that's what they initially told me over six years ago and that I may not make it over five years but yet here I am. He told me to consider a clinical trial and said he was just being honest with me and that he didn't believe in the supplements his two prior colleagues blessed and praised.

Feeling depressed and uncertain. Any feedback is appreciated.

isi123 profile image
isi123 in reply to Drifters_Spark

Doctors who forget the human factor are not good doctors.

Holleymh profile image
Holleymh in reply to Drifters_Spark

Mine was high and I called bullshit and did liver biopsy and my liver showed nothing!

Drifters_Spark profile image
Drifters_Spark in reply to Holleymh

That's great news, good for you.

I had no idea that the Fibroscans could be so inaccurate/inconsistent. I've always been told it was the Gold standard next to a biopsy. I was also reassured in 2019 when they went back to check and confirm if there were any calibration issues with the Fibroscan when mine were performed. I was told there were no issues, the machine had been tested and calibrated as per requirements and protocol. Thus my Fibroscans scores dropping from 75, 35, 15.3, to 11.5 were correct.

A chronology of events with the new Hepaptolgists. His initial review was a comparison of the current 13.2 vs the prior year's 11.5 which was followed by the comment, " you are only going to get worse." I then asked him what about all of my scores dating back to 2015, confirmation there were no calibrations issues, scores dropping from 75 to 11.5 before the current uptick of 13.2 He said there's no way the 75 and 35 were correct even with the biopsy score with a max Fibrosis score of 6 of 6, was consistent with the Fibroscan max 75 of 75. He said I didn't have the improvement his other colleagues confirmed in the prior five years and repeated I was only going to get worse. He also said, "if you think Covid is a pandemic, fatty liver disease is a real pandemic."

If Fibroscans are not reliable and inconsistent, I wonder how many people have been given the bad news that was false-positive and how many have been given false-negative results. I live in a major metropolitan area where medical research is a big industry and in the last few years, countless individuals have been recruited and given free Fibroscans. Television advertising during peak viewing times occupied the airwaves with commercials about Fatty Liver disease and free Fibroscans. I think getting the awareness out is a good service, but what's a good intention with unreliable data?

Kdrc36 profile image
Kdrc36 in reply to Drifters_Spark

I was given a false positive of cirrhosis! For 30 days I thought I was going to die. Took that long to do follow up testing and everything is fine. I will never take my health and body for granted again.

Summtyme profile image
Summtyme in reply to Kdrc36

What tests confirmed that the fibroscan was incorrect? What was your fibroscan score? Thanks

Kdrc36 profile image
Kdrc36 in reply to Summtyme

I had an MRE. MRI with elasticity.

Summtyme profile image
Summtyme in reply to Kdrc36

Ok thanks. I’m going for one on Friday

waterstop profile image
waterstop in reply to Kdrc36

A MRE is what the Cleveland Clinic ordered for me after my gastroenterologist initially diagnosed me using a Fibro Scan & several ultrasounds. MRE indicated no fatty liver. I tried to get into a fatty liver clinical study and when the technician did the Fibro Scan she indicated that she wanted one of the Drs. associated with the study to perform the scan because she found no fatty liver after I told her that I was initially diagnosed with fatty liver. The Dr. came in, I explained all my history and she performed a Scan getting lower #'s than the technician, indicating no fatty liver. I was not admitted into the study. Thus I would be sceptical of Fibro Scan results especially if the results are near the normal range. My understanding is that results can also be very technician dependent. I would get a MRE to back up the Fibroscan results.

DCguy2023 profile image
DCguy2023 in reply to Drifters_Spark

Can I ask, during the time that the scores were improving, did you feel different? Any better helathwise?

Bbohnie profile image
Bbohnie in reply to Drifters_Spark

What a wanker! The truth is we are all going to die. No one gets out alive! Don't listen to him- you know what you have been through and the changes made. I am sorry you were abused that is just as challenging as any health issue...really is a health issue! He is an idiot or undertrained if he does not understand the value of supplements. Hope you can get a different Dr. He is the Grim Reaper in a white coat!

Drifters_Spark profile image
Drifters_Spark in reply to Bbohnie

Thank you for your comment. His attitude and demeanor when he first walked in and introduced himself was a defining moment. Old school, looking in a folder for results in current vs. last year and not looking at my digital medical record's six-plus year history. When he saw the uptick of 13.2 vs the prior years 11.5 is when he said you are only going to get worse. When I advised him of my complete history and what his colleagues confirmed, a significant improvement, is when he said the other scores were wrong, despite the biopsy and the Fibroscan were consistent. Biopsy revealed a max Fibrosis score of 6/6 and Fibroscan was 75, the max too.

Needless to repeat, in prior years even when scores were at the max, the doctors were encouraging which led me to make a lifestyle change. After seeing this doctor, I felt what's the use, I should go and live a lifestyle of enjoying all the great tasting foods that are bad and enjoy a few libations. But most of all, the effect it had on my thoughts, negative thoughts/thinking is what affected me the most. I am going to ask to be assigned to another doctor in the group.

7265sunlower profile image
7265sunlower in reply to Drifters_Spark

Hi there I've just came back to this group after about 3 yrs had a lot of other things going on so I haven't bothered reading the stories , oh my heart goes out to you all the good work you've put in and your still in limbo with these doctors . I've been put on a 6 months programme now for scans an bloods to be done as my liver is showing fibro f4 which they tell Mr is cirrohsis and I feel like shit my bones ache especially my knees they sent me for a bone density scan so iam awaiting the news , it is so confusing . Just hope you get sorted xx

hasanz profile image
hasanz

I had same situation 1st Fibroscan CAP 100 and 10.2 KPa suggesting F3. second Fibroscan done within a week for validation CAP 290 and 5.5 Kpa. Doctors say second one aligns with my pathology reports. So i take the positive news and hoping second result is right. Ultrasound shows smooth Liver surface. Stay positive. We all will die one day but no point in dying every day with worry.

Drifters_Spark profile image
Drifters_Spark in reply to hasanz

Thank you. His attitude knocked my down but didn't know me out. I find it hard to believe that his colleagues who cared for me before, including one who is renowned worldwide for his research in liver diseases, would have lied to me. And or that all of the scores in over six years, except the last two, were wrong.

sophiaS1980 profile image
sophiaS1980 in reply to Drifters_Spark

I hope you prove that doctor wrong, also, if your meld is 7,any people can function very well without getting worse. Are you having any symptoms? Are you taking any meds for your liver?

Kjun54321 profile image
Kjun54321 in reply to Drifters_Spark

Keep looking forward and not back! Leave that doctor in the dust and keep going forward. Some people think reverse psychology works, but you know you can do more. Ignore the negativity and keep going!

Newdeck profile image
Newdeck

I had a 15.5 fibroscan and then a biopsy that confirmed cirrhosis, so I am amazed that your score was not cirrhosis?? The ultrasounds never showed cirrhosis, but the biopsy did. I lost 28 pounds and now weigh 134. I just had an ultrasound and will rescan in a couple of weeks. It appears that biopsies are the only way to truly see where you are at. I plan to never have it done again, but it sure scared me into a new lifestyle!

Miesquivel0015 profile image
Miesquivel0015 in reply to Newdeck

My gastro did tell me that he suspected the same but the technicians at my first fibroscan where having a hard time with getting a good number because of my weight.So I lost 90lbs and this time around I had the results I have now on this last fibroscan which left the gastro in aww..which left him scratching his head and asked me to come back in one year to do another fibroscan in Aug of this year... soo that’s why I’m soo scared now because I thought I was out of the woods but I’m a keep fighting!!!!!

Drifters_Spark profile image
Drifters_Spark in reply to Newdeck

Thank you for your comment. My initial Fibroscan score of 75 out of 75 max was consistent with the biopsy Fibrosis/cirrhosis score of the max 6 of 6. My Fibroscan scores dropped as low as 11.5, borderline. I've been told that my ultrasounds did reflect scarring but still functional with no lesions, etc., As mentioned, other than abdominal pain, all of my LFT's have been normal with the exception of a few times when taking meds for infections, no physical signs of cirrhosis, etc.

Keep up the good work.

idyllic420 profile image
idyllic420 in reply to Newdeck

Did you have any physical symptoms before getting diagnosed with cirrhosis? I had ultrasounds done and my doctor thinks that it is only a fatty liver. However I suspect that there is more going on with my weight loss!

Newdeck profile image
Newdeck in reply to idyllic420

I have F4 and beginning cirrhosis, but have absolutely no symptoms. I do get tired, but I don’t eat many carbs anymore so? I am a pretty active person for the most part. I didn’t have any of the ascites in my esophagus either, but biopsy showed moderate to severe and early cirrhosis. I rescanned after going from 162 pounds to 130 pounds in about 5 months and I only went from 15.5 down to 14.2 on a fibroscan. I want to join a trial, but my numbers are too high. 😟

idyllic420 profile image
idyllic420 in reply to Newdeck

Oh K. Keep up the healthy diet and maintain the positive spirit. Rest is all up to God. I see my GI on 24th of August! I have abused alcohol for 10 years , I'm eager to find out where I am!

Bbohnie profile image
Bbohnie

Your weight loss and changes are the most reasonable explanation. Perhaps your Dr. Hope's you will keep going and have an even better score to prove it correct. I argued when my score changed dramatically and was told what I did worked BUT stay the course. No reason to get your stress level up. Be pleased with your body responding to the loving care.Stress won't change anything except your joy. And JOY enjoying the day helps you be more healthy. No Dr. is 100% sure because there are numerous variables so they say I am not sure. Can't sue them for wrong info that way AND you have to come back! Do YOU feel and look better? Then be proud of yourself and keep doing those good things.

Drifters_Spark profile image
Drifters_Spark in reply to Bbohnie

Thank you again, I did feel and look great. Again, my LFTs have been normal even when at the end-stage when the biopsy confirmed and was consistent with the first Fibroscan score over six years ago. I've had no physical symptoms with the exception of occasional edema in the ankles but was told I had a bad varicose vain condition and I underwent surgical treatment for it and my edema issues have been nearly non-existent. My cardiologists also confirmed a genetic heart issue that can cause edema but advised at this time no interventional cardiac care is needed. I've been hospitalized several times, back injury and high fevers, since my diagnosis, and every hospital questioned, who told me I had cirrhosis because according to their labs I had no indication of cirrhosis.

I knew my scores this year were not going to be as good as prior results due to the stress and weight gain during the Covid pandemic. I felt blessed my Fibroscan score wasn't more than 13.2, that is until Dr. Dreadful Cheary walked into the exam room. His P.A. who has been practicing with his colleagues for years remained enthusiastic when she reviewed my complete history and the recent uptick.

Newdeck profile image
Newdeck

A biopsy is the only way I was told to know for sure. I had lower scores, weighed 162, and had cirrhosis 😟

sophiaS1980 profile image
sophiaS1980 in reply to Newdeck

Biopsy is a good tool but can be wrong too. They can take the bad part of the liver, or they can take a good part of the liver. They only take a small portion, but biopsy is considered "Gold Standard". I always say look at the platelets because they are low in 90% of people first diagnose with cirrhosis.

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