Hi, I've been referred for an urgent ultra sound tomorrow after having a fibroscan showing almost 12. Doctor actually said I had a scan 2 years ago and it was clear and they're not that great at showing fibrosis so not sure why I'm being given this? Im obviously worried but now more so that the methods of intervention might not actually help me. All bloods normal but they didn't do AST so want to bring me in for that at some point. What are your thoughts of ultrasound at detecting damage at the level I'm looking at? Is there a chance it could show worse than the fibroscan did? Could it come as clear when it's not actually clear at all?
Any advice : Hi, I've been referred for... - British Liver Trust
Any advice
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Dontworrydarling
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I'm sorry to hear that. Why won't they refer you for a fibroscan?
Was your ultrasound detailed? I'm worried it will not be sensitive enough when been my own doctor said they're not great
So not great, then
Has anyone had a scan that picked up their fibrosis?
U/S can see thought the fluid in your abdomen, a fibroscan cannot therefore not that reliable. Probably why you've been referred. I've never had a fibroscan due to ascites, just u/s every 6 months.
Fibroscan is a sonar probe to see how hard the Liver is. Ultrascan is a detailed look at the Liver, Spleen measurement, blood flow and detail of the shape and size of the Liver. It can also see tumours too. Talk to your Liver specialist nurse or consultant that you should have in place by now.
They are two different types of scans. One is a probe to see how scarred internally the Liver is via a sonar wave. The US can see the fluid, size and shape of the outer Liver, Spleen and blood flow direction and all your organs. I have so many scans and one F scan. So, I know from experience over the past 2.5 years.
But try to talk to your consultant or specialist, that by now should be in place for you.
Thank you so much. Is there a chance the US will reveal worse than what the fibroscan said?
I have two ultra scans every year. The fibro scan in 2021 came at the end of everything else. I had been getting along with blood tests. The F Scan is just a probe against the rib cage that sends sonar through your liver; if it is very soft and jelly, it is good; if it is hard like a biscuit, it bounces back. Talk to your Liver specialist nurse. Mine was 39.2 L 4 fibrosis = early cirrhosis.
I don't have a specialist or anything like that. Its early days. Doctor doesn't even know if they're gonna refer me to heptology. Just said they'll go off the ultrasound?
Well, be firm with your GP. I had a consultant and specialist Liver nurse, scans and everything even during lockdown. I'm up in Scotland, very quick.
Just to point out that not everone gets access to a liver specialist nurse. In 11 years of diagnosis my hubby has never had access to one despite being under a local gastro consultant and a liver specialist gastro in Edinburgh. Our local health board has one liver specialist nurse (not based in local hospital) and zero doctors with a 'qualified interest' in the liver (gastro only).
Katie
That isn't good for you at all. I'm under Highland right at the top of the map. I really can't complain at all about my care. My third year and a bit. It should be universally equal wherever you live in Scotland, Katie. The 'Liver specialist' and my 'Specialist Liver Nurse' are probably the same. The gastro dept is the same up here with perhaps more nurses. My point was that many here don't even have what we have in place when they should. This causes people to be confused and worried and reach the wrong conclusions. In my experience, it started with blood taken and then an ultra scan ended with a fibro scan, plus a heart scan last week. This puts me under surveillance for tumours and everything else. That diagnosed me fully and completely. A lot of GPs aren't thorough; my GP is excellent.
The chances of having 12kpa and a clear ultrasound sound quite slim going off Dr Google, so I'm assuming they'll refer to heptology after that. If it happens to be clear , despite knowing I had a very bad fibroscan and they don't want to refer on- what else can I do?
Compared to my experience, it all appears to be a complete mess that leaves you searching Google, which causes more problems. It shouldn't be like that at all.
At this stage I can't decide if I will be happy to be told it's fine and not trust the result, or be told straight up it's bad news so I get a referral to heptology. I'm just really worried either way and hope the fibroscan was wrong although I know thats wishful thinking
It's a very odd pattern of procedures there; all seem in the wrong order, in my experience. But if that's how they do it, well. You have to trust the results. But as I said, I leave it for them to worry about. Nothing is guaranteed one way or the other, so talk to whoever you can regarding results.
Thanks vinyl
I'm just going through it and being honest. I'm not a medically trained person. So, always discuss everything with somebody that is. Never reading Google terrified me.
Hi there. I'm sorry to hear this as not knowing what's going on can be scary. As others have suggested you should push for greater clarification as to why you've been referred and what your fibroscan results mean. You should have been given two scores - a kpa and a CAP. Your GP can see on a chart what those scores mean in terms of the different causes/types of liver disease as these scores mean different things for different conditions. For example you would need a higher kpa score for alcohol related liver disease than for non alcohol related fatty liver. The scores themselves need to be contextualised and your health / lifestyle issues considered. From this the GP should refer you to a consultant if the results fall into a high level for any of the known causes / types of liver disease. I hope you get the answers you need soon. Good luck.
Hi Pete I did have 2 scores on fibro of almost 12kpa and a cap of 218. I've since had an urgent ultrasound and an ARFI score of 1.25. As of yet I haven't had the results of the ARFI interpreted as the sonographer wouldn't say much except to say it's the 'lower end of abnormal' and my GP doesn't know what they mean. I've looked online and it looks like I'm somewhere near to F2 fibrosis
so your fibroscan score was considered early cirrhosis? Did they say you could reverse it?
That's my diagnosis. The Fibro scan technician told me they have a lot of drugs these days that can help.
I have read that early on. I can slow it and reverse it. But we'll see. I feel better than before the diagnosis.
is your fibrosis due to NAFLD?
Hi Realy. I'm not sure. I've had no diagnosis as such. At this point I don't have an answer as to the cause and bloods are all normal so who knows? It's worrying
for me fibrosis/ steatosis weight loss and getting sugar and bloods normal was prescribed. I’ve had ultrasounds,blood work, fibroscan, Fib 4 index wich was done by quest labs and I’ve had fibrosi/Acti blood test done as well.
I'm expecting to get a diagnosis of NAFLD with F2 fibrosis , as blood work and sugars are all normal. I'm just hoping it isn't worse. I never heard of an ACTI test. I did have an ARFI ultrasound which I'm told only a few hospitals offer.
I'm overweight by 3 stones so I'm assuming lifestyle and weight have caused it and assessing this will be the treatment. I just hope it'll be enough to reverse it.
Also to add, I did my own FIB4 based on the blood work and it came out as 0.66
Yes my fib 4 was 0.73 it was also included in my blood panel done by Quest labs
Fibrosis/ Acti test is a blood test they can run a s well that give you a fibrosis score as well as activity. Yes weight loss is one of the key factors for NAFLD my dr told me don’t worry about numbers just loose the weight and you will see te difference.
Were you referred to a heptologist? Should I ask to be? Is fibrosis the condition or is NAFLD? Thansks for your help. I'm a bit in dark with it. Thank goodness for Google because my doctor doesn't seem to urgent with it
I’m in the US I’ve been seeing a Gastro/Heptologist for a while as a yearly visits. My fibrosis has come from the fatty liver and bad diest and sugar.
Have you managed to get it down?
yes weight loss of 50 pounds since last august, and now my ultrasound of liver is normal size and normal parenchyma no fat. All bloods normal. I had fibroscan last august and than a sonogram showing enlarged liver with hepatic steatosis. My fibroscan came back at 13.0 cap 325.Dr said Fibrosis/Steatossi(Fatty Liver) went straight to work on eating better and weight loss, at the time of fibroscan my fib 4 showed lower than the fibroscan, 7 months later loosing 40 pounds at the time I did a Fibrosis/Acti test blood test that showed F-1-2 minimal Fibrosis and AO -No activity, than also I had a Fib 4 done in my blood work wich was 0.73. My most recent sonogram wich is 9 months into this showed Normal size liver and normal liver parenchyma .I will have a repeat of fibroscan in august. My only thing I would have done differently is I would have done that fibrosis blood test around the same time as fibroscan to see if either one agreed with each other. The blood test was after I lost the weigh. Either way the dr said both the fibroscan and blood tests are reliable and the proof is in the sonogram report as the liver is normal size and no fat also bloods are normal. Continue to loose a few more pounds and keep sugar in control and exercise was his continuing prescription. His big thing was loose the weight. I’m hoping original fibroscan was off and the blood test in February of F-1-2 minimal fibrosis in report has gone down even more since than.
Wow the change in you has been really impressive! Well done. You must feel amazing. I hope to do the same. I feel older than my years in the last 6 months. I don't know why. Perhaps this will bring me a new lease of life.
I've been given a score of fibrosis F2 however the shape and size of the liver is normal and all bloods are normal ( except one they did after the high fibroscan called 'gammaglobulin' which is raised. The echotexture of the parenchyma is mildly coarse as well , and there is some increased echogenicity in keeping with mild to moderate fatty infiltration. My cap score was 218 so I'm assuming that although this isn't very high, it's indicative of fatty changes and has contributed to the fibrosis?
It's possible yours was originally overestimated as you predict. Either way the outcomes are great. In terms of 'activity', I have no way of knowing of the fibrosis is active....that's quite scary. I assume activity means it's causing issues? I looked online and the single blood test of mine that is raised ( gammagolublin) is apparently most seen in people with liver disease.
there’s a blood test called Liverfast that you can get. You’d can look it up. That shows fibrosis, activity, steatosis
Ok I'll see if it's available in the UK . Thanks
Most likely to be the case. My feeling is this was probably something I have grown up with over several decades.
you have fibrosis with steatosis? Have you done any of the blood tests for the fibrosis levels?
My Consultant and Liver nurse say I have Cirrhosis early stages. I have had the Fibro scan and several Ultra Scans. I also have regular blood test.
Alsobto my knowledge I don't have fluid in my abdomen
Hi, hubby' s has US scans twice a year never had a fibro done. The US shows surface of liver and any scars, cancers, blood flow etc and is very detailed. They also scan gallbladder at the same time. He had one mri and a biopsy at the beginning of his journey in 2019 after he had abnormal bloods. He was only referred after his US and gp had all the information to do referral because she said that the consultant waiting list was so long it would get things moving quicker as they wouldn't have to wait for tests/scans to be done. Hope that's helpful.
Is it , thank you so much
Hey all, so I've been. Obviously 4hey don't tell you much but said I have some fatty infiltration and an ARFI score of 1.25
Can anyone tell if if they're ever had an ARFI test?
Yes, diagnose liver fibrosis.
Thanks for replying. What was your score if you don't mind me asking? Mine is 1.25
To me this sounds like a perfect approach by your doctor. The ultrasound will be able to give a bit fuller picture of what your liver looks like that a fibroscan can't. Getting any form of diagnosis in liver disease typically needs more than 1 test. Its a case of building that bigger picture.
Fibrosis is an early stage of liver damage. So the changes that can appear on an ultrasound can be quite subtle or even non existent. However, in cirrhosis they can be a bit more obvious. Basically, the more fibrosis or scarring their is, the easier it is for ultrasound to pick it up. An ultrasound is a better imaging tool as it can detect more than a fibroscan can. If on ultrasound its clear that cirrhosis is present then, as Katie said, there no real need for the fibroscan. It's not going to tell folks any more than they already know. However, if there are changes on ultrasound that indicate potential liver disease, but its not clear if that relates to early stage fibrosis then a fibroscan is useful to see if there is any fibrosis present. An ultrasound is also a bit more of a reliable tool too, as a few things can affect a fibroscan and give a false positive result.
When I was diagnosed fibroscan didn't exist and the protocol was repeated abnormal blood tests then ultrasound. However, now fibroscan us being used as an early quick screening tool, that can jump in first. However, its rarely really diagnostic on its own. It needs that further follow up to determine a full diagnosis and ultrasound is an essential part of that.
Hope thats helpful
Thanks Kristian. I'm waiting for the results of my ultrasound ARFI scan but the sonographer told me I have some mild fatty infiltration and an ARFI score of 1.25. Someone on here kindly helped me to understand that a bit better and it looks like I do have some fibrosis at the lower end of the scale. The sonographer told me it goes up to 3. I also spoke to someone at the BLT who was so helpful and reassuring. I'm going to wait to say what my doctor's next steps are. I'm obviously upset to learn k have fibrosis and not sure what the cause is just yet, but it's pointing in the direction of my lifestyle because my bloods were always perfect. My doctor is running some autoimmune screens and other things so we will see. Thanks again
Hi all I wrote a few weeks ago that I had been referred for an urgent ultrasound after having a fibroscan of 11.7kpa. I've a BMI of 34.8, moderate drinker, mid 40's female.
My liver scan was carried out at a hospital that does ARFI tests , which I'm told is a fairly new but pretty sophisticated method of scoring liver stiffness. I was upset but not shocked I guess to see it come back at 1. 25, which is F2. My liver also showed mild to moderate fatty infiltration, as well as mild coarseness , which indicates underlying fibrotic change. Everything else is normal in size and function. My doctor ran a full panel of bloods and all those are fine. AST 24, ALT 18, GGT 12. I was negative for all hepatitis infections and autoimmune, although gammagolublin is raised and is 'polyclonic'. I don't know what this means but on looking it up, it's common in people with liver disease and other inflammatory conditions like arthritis.
I am booked to speak to my doctor next week on the phone , so I will know what they plan to do next I guess but does anyone know if fibrosis is in itself a stand-alone diagnosis? Will I be required to update my life insurance policy or anything like that? Is a referral to heptology a given or is it a case of routine scanning from now on? I'm currently taking semaglutide for weightloss ( private prescription) so although I can't see anything online about this being contraindicated for liver issues , I'd be grateful if anyone knew. I've started taking vitamin E and NAC as I've read online they're helpful. I'm obviously keen to address it. I feel too young to have liver issues but clearly I'm not. It's really upsetting.
Anyone?
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