Hello, I have been ready with great interest these pages.
I have struggled to find any information that could offer a glimpse of hope from the message boards here or elsewhere on the net with my fibroscan results.
I was referred to a Liver specialist out of county as the hospital. I am attending my local hospital for the condition of Haemochromatosis which is well under control and not presenting a problem. An ultrasound scan showed light scarring of the liver, The consultant and head of department assured me this was not big problem but life style changes to eating and exercise would improve things and referred me to a Specialist at a large training hospital out of county. I was led to believe would highlight the importance and need to improve my life style etc ( The kick up the A...). Im 55 years young, I rarely drink alcohol but am over weight with controlled type 2 diabetes using tabulates etc.
I attended the specialist about 4 weeks ago and came out in shock. As part of consultation I was given a fibroscan the resulting score was 32.7 and End stage cirrhosis of the liver. In the last four weeks I have had a full blood test for everything and await the results, I also go for a gastroscopy next week. I was told this cirrhosis was probable NAFLD linked although I have no definitive answers or prognosis yet. I have been in total despair and very low etc.
I have been a full vegetarian for over thirty years. I have now given up sugar, eat mainly unprocessed fresh foods, cut out completely alcohol and caffeine and limited dairy produce. I exercise daily walking between 6000 & 10000 paces and aim to up my exercise programme. I feel fine bar the constant pain in my lower back.
I would be very interested and grateful to hear from people who have found themselves in similar situations.
Kindest regards
Written by
Greenman42
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Hi greenman42. I have had cirrhosis since 2008 , had many ultrasound scans etc .. But I know nothing about a fibroscan ? I have seen this mentioned before so I was wondering if this was different to a normal scan ? I have never been told by my gastroenterologist .i wished I could help you . I am sure you will find an answer on here from someone . Best wishes .
Hello greenman, I am sure you know this deep down but it is vital that you don,t fall into the fog of despair. I had a fibroscan last November and it came back at off the chart 75plus. I came home, went to bed and stayed there for 3 days. When I started looking into it on the net I confused/worried myself even more. The bottom line is this. no one, no test result can tell you how you feel. You are doing all you can diet wise and seem clued up on helping yourself in that regard. Half the battle right there. From what I have researched the scan can be influenced by other things such as inflammation. I have spoken to one lady who also had a scan of over 75 and after 6mths of not drinking in her case the next scan showed 40. So there are other factors in play. You,ll have a clearer idea after your full results, but do try not to worry (I know, easy said, and it must be so frustrating as you sound as if you,ve looked after yourself pretty well). Keep it together, there,s plenty of support here. Best wishes. anne .
Oh dear; i do know a fibroscan measure stiffness of liver and over a certain amount means probable cirrhosis; i'm waiting to have one done myself, but am due an ultrasound shortly ; my understanding is that the fibroscan is the next best thing to a biopsy of the liver and it is preferable as far as i know. I don't get how one specialist said you don't have cirrhosis and next minute you do! Thats why i myself want ALL the tests done and if i don't hear soon re a date for the fibroscan i shall be calling them up! You need to find out how come the differing opinions?? It not right at all being told wrong information.
I've also have had a fibroscan which also had an high reading it seemed to fast track me onto having treatment coming up within the next month after a year or so having blood tests and scans and my result being okish until the last couple of blood test that showed high which was told maybe just a false reading then the next appointment i was given fibroscan!! On my next appointment i was told we are going to the board and if I'm excepted i will then start treatment maybe end of November early December i must say with all the medical java i get quiet confused coming across this blog has been so beneficial i know this can all be overwhelming hope you get your answer good luck 🍀Tracy
hi there not an expert on this but I do know that inflammation can skew fibroscan results-certainly where alcohol is involved. Not your case I know I also know the "end stage" sounds bad but its a medical term for a category of liver disease. Seems that you're doing all the right things from a liver health point of view including exercise. The main thing is how you're feeling-I would just carry on doing what you're doing. There's is more expertise here than I can offer but all the best.
This was my experience with the Fibroscan. First I was being treated by a Rheumatologist for biopsy confirmed Sarcoidosis of the liver. Despite aggressive treatment with Remacaide infusions my doctor could not get my liver enzymes to normalize. Sometimes they looked good and the next time they would be up again. So I was sent back to my gastroenterologist for new anemia and he ordered all kinds of test. MRI, upper and lower endoscopy, blood work. My MRI showed some dialation and contriction of the biliary tree but nothing to worry about per the doc. Nothing that explained my elevated enzymes and constant RUQ pain. They also said that my liver and spleen are enlarged. So I go for this Fibroscan thinking that this is my last hurdle and to my horror after less than a 5 minute test was told I had stage 4 liver cirrhosis and because it was due to Sarcoidosis there was no treatment but not to worry because when the time comes I could consider transplant. OMG I walked out of there in a fog. I had no clue my condition had advanced to that degree. I think I cried the whole way home because I did not want my family to have to deal with all the horrible things people go through when the liver cannot work. When I told my husband he was beside himself and said from now on he would be going to all appointments with me. I didn't know what to do or who to talk to. I googled the accuracy of the Fibroscan and from what I learned they were pretty accurate. Made an appointment with my gastroenterologist who was equally shocked. He decided that I needed to have a surgeon do a laporoscopy in order to really look at my liver and take more biopsy samples so that's what we did. The surgeon told my husband that my liver looked real good and she saw no evidence of Sarcoidosis and very limited fatty areas. So now what? I continue to have awful pain on a daily basis and my liver enzymes have not improved at all. I don't drink, smoke or do drugs. Was the machine not calibrated correctly or was it user error. All I know is every time I have one test/scan it contradicts the other and don't know what to do. So personally I hold no confidence in the Fibroscan results. As someone else said I will rely more on how I feel and do things I know that will be good for me. Good luck.
My boyfriend is awaiting the fibroscan. Visually with the Ultra sound and a CT scan everything looks fine with his liver, but he feels awful and has ascites and they have ruled out heart and kidneys. The other symptoms i.e. tiredness, some stomach pain, muscle wastage, difficulty eating does fit with liver disease. I read that the fibroscan is good at measuring severe damage but struggles with mild to moderate damage and is not so accurate with that.
End stage liver disease does sound awful but the doctor told me he has seen three people worse than my boyfriend recover.
Hi Pauline I'm having all the symptoms of liver disease. But my doctor won't send me for a fibroscan as he said my liver is fine it's not . My bloods came bk ok and so did my ultra sound all fine . Did this also happen with your bfriend... what happens once he got his fibroscan ??
All the symptoms you describe can be attributed to liver disease. My problems with the doctor saying that the CT Scan and ultrasound of the liver look fine is that most doctors cannot read an X-ray never mind ultrasound or ct Scan and therefore are at the mercy of what the radiologist reports. This radiologist has little to no information about your medical problems so when they are looking at these scans unless otherwise stated will attribute something abnormal to say fatty liver disease. I have had this done over and over especially with ultrasound. Have had two biopsies and both found no fatty liver disease. Then had Fibroscan that was so totally off that I feel they should have paid me to come in. Really it is no problem for them when a diagnosis is wrong. Unless someone sues them they could care less. So the symptoms you talk about tells me your boyfriend is very sick. Medical professionals are supposed to be trained to look at both symptoms that patients report but also things they can see clearly with their own two eyes. I don't know how many times I have seen a doctor and they never one time touched me or even listened to my heart nothing. Where is the assessment in that visit? There are so many important clues to a patients condition that can be found with a good physcial exam. Most of these clues are evident way before it shows up on a Scan or blood test. When you can look at a person and see they have a big swollen stomach then Ray Charles could tell you that person is very ill!! When I worked as an Emergency Room Nurse I could look across the room and visually assess a new patient brought in by rescue squad. In those few minutes I could evaluate if I needed to drop everything and attend to the new arrival immediately. Maybe because I spent 20 years in emergency nursing it was second hand to me. Even if I felt that person could wait 10 minutes while I finished up with another person when I went into that room I performed a complete physcial exam no matter the complaint. You can get so much information about what's going on with a patient just by talking with them. Like when they say that these symptoms didn't begin until after they started a new drug. So if I was you I would make sure your boyfriend sees a hepatologist and if they say everything is ok make an appointment to see someone else. Those are symptoms of a very ill individual and should not be ignored because the scans looked good. Not to worry anyone but I have seen the end results of many stupid decisions made by a doctor who thinks they know everything. When a patient is discharged and doesn't even make it home before he dies then there is something very wrong. Really if no one sues the doctor his epic fail will not affect him but it changes that patients family forever. Before I left my job 6 years ago I was sitting in the CEO's office concerning the death of an eight year old child. I was trying to get across to him how unsafe a certain doctor was. He did not have the credentials to be working in an Emergency Room and diagnosed most of his patients with an ear infection. I would half heartedly joke that I needed to stock up on Amoxicillin and steroids when he was scheduled to work because most of his patients would be discharged with those drugs. Anyway when I told this man how unsafe it was in the Emergency Room when this man worked he looked straight at me and said and I quote "That's why we have lawyers lots of them"!!!! Needless to say I left that hospital after working there 16 years. I was so upset wondering if this was true across the nation. When someone calls 911 because they are sick they come to an Emergency Room thinking they will be treated by a doctor qualified to work there not someone who is guessing 80% of the time. Sorry if I went off topic one thing lead to another and there it is!! The whole unadulterated truth. Some hospitals hire unqualified doctors to fill a vacancy and back this up with smart lawyers.
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FIBROSCAN RESULTS
Fibroscan results
Fibroscan result
Fibroscan Results
