can fibroscan tell more than just stiffness

[Sophia1968]

Please does anyone know if a fibroscan shows other things other than stiffness……my Dr has scared the life out of me, I asked her if the report said cirrohsis, she said no it says severe liver impairment, I looked this up ( stupid I know) and it translates as acute liver failure, they make it sound like you only have six months at this stage, so is this worse than cirrohsis as in last stage or something? I don’t get how they know it is severely impaired without blood tests etc, surely acute liver failure happens fast, I assumed mine was chronic long term abuse…..why would they word it like that, I feel like I have taken two steps forward and fifty back, 😢

[AyrshireK]

If you have no symptoms of serious liver damage as in no symptoms of cirrhosis then your 'impairment' could actually be a lot less than you fear. You have it in your power to try and slow down further progression and reverse damage done.

There are so many stories on here of people who have reversed their damage or reversed symptoms. People like my hubby who has gone from almost dying with serious decompensated cirrhosis to stable 11 years later (& that without any treatment of his underlying condition as his damage was done by an auto immune issue).

Don't over think things, hopefully you are still due to see a liver doctor to assess your condition and give you accurate feedback ......... if this was your GP who made the statement today then they arn't experts on liver issues. (We never see our GP re. hubbies liver, the one time we did query a potential symptom all we got back was "Oh, that'll be to do with your liver!" )

Katie

[Sophia1968 in reply to AyrshireK]

thank you Katie, I kvow it sounds daft but I would be able to accept cirrohsis now after reading about acute liver failure, I just don’t understand why the report said severe liver impairment, my dr just read what it said, I don’t have any of the bad symptoms so I would feel happy to be compensated now, I just wish I had not heard those three words earlier or looked up the meaning, thank you so much as ever, you are amazing xx

[AyrshireK in reply to Sophia1968]

With acute liver failure you'd have symptoms but as I understand it you have none so you are not in any sort of liver failure. Severe liver impairment would possibly just mean the fibroscan indicates some severe damage which is probably the scarring/density as already indicated by your kPa score. I can not re-iterate strongly enough that without symptoms you are not in liver failure or any sort of immediate danger. You have the opportunity to take steps to improve matters.

Katie

[Sophia1968 in reply to AyrshireK]

Aww Katie , I am sorry for being a pain, I definitely feel better for talking to you and I will take that all on board thank you for grounding me xx

[Furpal in reply to AyrshireK]

Wow Katie, you just helped me too. I have no symptoms either. I may just sleep tonight.Thanks

Jilly.

[Furpal]

Hey you xx you seem to be having the same issue as me. I used to look things up but what was online terrified me. I just don't know what stage I am at, they don't seem to discuss it. Then I get terrified to ask them in case it's not what I want to hear. Maybe someone who reads our posts may have answers. I am here for you to talk to if needs be.

[Sophia1968 in reply to Furpal]

bless you hun, yes I’m exactly the same, I moan cos im left in limbo, but then when I ask I’m scared to hear the reply, it’s awful cos you can’t rest can you, thank god for Katie and the others on here, I would love to talk, I feel like I’m pestering everyone and driving them mad, at least between us we can try to pick each other up xx

[Furpal in reply to Sophia1968]

I agree I finally have someone to talk to without feeling like I'm pestering. My friend is sympathetic but doesn't understand. She drinks quite a bit but doesn't want to give up even though she sees how worried I am. Hey ho, we will stick together you and I plus other lovely souls on here. Wish Katie was my doctor 😄

[Sophia1968 in reply to Furpal]

yes I think it is good to talk to another who understands the fears, one day we will be hopefully more calm and enjoying life like others on here, as for friends I have not even told mine yet as they won’t understand and I can’t deal with the endless questions of, why was you tested, what were the scores, what do they mean, oh you will be fine etc etc , xx

[Millie09]

Hi Sophia So your still worrying your pretty little head over this cirrhosis.

Have you any symptoms of being in end stage liver disease?

I actually had ascites really bad , I looked like I was pregnant with triplets , I had swelling in my feet ,my ankles it was that bad it had gone up to my knees and the water droplets were coming out of my skin .. yet even at that stage I had never been told of my disease, it was only when I was rushed to hospital from being extremely breathless and tachycardic did the drs at A&E tell me I had cirrhosis..

Never for one moment did it enter my head I was knocking on deaths door, was in hospital for 6 weeks , having 3 drains of fluid taken from my tummy , my arms were black and blue from the amounts of blood tests daily, on discharge I weighed 6 stone nothing, went to live with my dad , as I had just left my abusive now ex husband it was my dad that actually got me through the continuing months he made me have the dreaded endoscopy I refused to have done.

May I ask Sophia, what symptoms do you have hun ..

I understand you have fatty liver ,but that can be turned around with a good change in diet I know its difficult as your diabetic hence why you need to ask to see a liver dietitian.. there's lots of help out there and on this site ..

As I said in our messages hun , don't worry, it's not as bad as you think .

With gaining knowledge over the first year on liver disease and all types I may add was I able to understand it a lot more .

Chin up ☺️... Linda xxx

[Sophia1968 in reply to Millie09]

hi Linda , thank you so much for your long reply, my only symptoms if related to my liver are a few red dots on my skin, I get cold now when I was always over heating before, I feel nausea most waking mornings, I did have 3 random nose bleeds last year, I do have regular upset stomach , my wee is quite dark sometimes but not always, my stools can be quite light but light brown not clay colour, sometimes they are streaked with blood on the outside, not much body hair, little broken veins on legs and spider ones on face, my face is often flushed even if skin feels cool, also tinnitus , but all these symptoms I kvow can be due to age and weight im not saying they are liver, I just don’t know …… also I’m still having fast pulse rate esp when lying down in. bed …..I would never have mentioned all those things for fear of sounding like a hypochondriac , only mentioning them now as I honestly don’t know if any are related hun, I did lose two stone in weight without even trying , but I was diagnosed with a rare wheat allergy and stopped eating all bread, pastries cakes and biscuits etc , I have since lost another stone intentionally but even then I worry because I could not get it off before, then again I’m prob so stressed and scared now so that would contribute I kvow …..I do not have fluid retention, yellow eyes or yellow skin though and although I itch it’s not major and I put that down to my dry skin xx thank you my lovely for your time xx

[Millie09 in reply to Sophia1968]

Morning Sophia 🌄..thank you for your kind reply.. You have a lot of mixed symptoms there don't you ! .. there are a few liver related, baring in mind I'm not a doctor and cannot comment on them.

Have you had any other blood tests for anything else?

Have they checked your vitamin D levels and B12 ? have they checked for coeliac disease? .

I get cold , even in the summer ,apart from last year I was struggling due to my asthma.

There's definitely something going on Sophia, and really needs to be thoroughly investigated.

Everything that you have just said, write it down or print it off and show your consultant and or GP .

your worrying is absolutely normal hun , but try not to let it get to you that you cannot function because of it .

Try remain positive that they will get this all sorted, it takes time and what with the nhs issues at present is obviously taking longer, but don't ever be worried about asking for any help on here, that's what this forum is about ..

Try have a good day hun ... Linda xxx

[Sophia1968 in reply to Millie09]

These were my blood tests in nov 22 so not sure what they are now my serum sodium was 140 (133/146)

triglycerides were 1.41 (under 1.8)

Albumin 40 (35/50)

Bilirubin 7 ( 0/21)

Alt 15 (under 35)

Phosphatase 67 (30/130)

Protein 79 (60/80) 😥

sept 22

Rbc 5.32 (3.8/4.8) 😥

Platelets 268 (150/420)

Ast 23 (10/31)

July 22

B12 183 (145/914)

feb 21

Ferritin 110 (11/307)

my folate is low 4.12 ( 3/20)

Can’t find vit d but it is always low so I take a 25ul pill every day, I think my bit D is 77 is I remember I’m sure the professor at guys would have checked for coeliac when he found my WDEIA allergy, but I will ask at my follow up next month xx

[Millie09 in reply to Sophia1968]

Hi Sophia, bless , well I cannot medically comment on your results as they are for your consultant and GP to go through but some of them are better than mine lol .. your platelets are good as is your bilirubin, my phosphates were 1.15 whatever that means but as my consultant never said he had any worries over them I just carry on doing as I'm doing .. I did notice My ukeld score was up at 45 .. but nothing has been said ..Try holding on now till your next appt , then ask everything that you need to , take things a day at a time , eat plenty of protein , plenty of fluids, water, good coffee, I have 2x cups of good coffee each day but non after 3pm as I suffer terrible sleeping , its either all or nothing 😄..

Linda xxx

[Sophia1968 in reply to Millie09]

😢 thank you x

[Millie09 in reply to Sophia1968]

Sorry I couldn't be of any more help xx

[Sophia1968 in reply to Millie09]

you are a great help you really are, I just feel sad and deflated all round, it’s nice having you there and you help more than you can ever kvow, you all do xx

[Millie09 in reply to Sophia1968]

Bless you Sophia Such a lovely complement thank you.. give yourself time hun , one thing your not is decompensated liver disease, wait till your next consultation xxx

[Sophia1968 in reply to Millie09]

if I get a consultan!!!!, I actually feel angry now, angry that my previous scans were not taken seriously, angry that someone with anxiety is sent away with a score and left not knowing if I’m doing wrong or right with the foods I’m eating and pills I’m taking, I’m even angry that the report said severe liver impairment and my doctor said the higher the score the worse the cirrohsis ( not in so many words but it was the gist) and I’m angry at me because I’m letting this get to me, I trust and believe everything you all say , I love reading success stories on here, but I still wake with it in my head, I’m worried I’m losing weight too fast as I know that’s not good for the liver, im losing about 4 pounds per week and even worry that it’s not all down to me , I just don’t know anymore 😡

[Millie09 in reply to Sophia1968]

Oh I'm sorry 😞.. I can hear your total anger and frustration hunni .. so was it your GP that just left you in limbo ?? .. if so you really need to contact him /her and demand answers. I suffer from anxiety myself recently had my meds changed hence why I've had several liver function tests to see how amyltriptiline is working in regards to the liver( making sure its not causing any further harm) .

Please don't be angry with yourself.. what your feeling is only what anyone else would be feeling .

Take a deep breath.. and get on the phone to the surgery in the morning.. be straightforward and clear that you need to speak to your Dr.. sometimes even though we feel emotionally drained we have to do things ourselves.

Many times I've had to chase things up ,demand I get seen and heard! If it wasn't for me pushing in 2016 to be referred to liver unit at Queen Elizabeth hospital I bet I would still be without a hepatologist to this day .

try to not allow things to dwell as that can make anxiety worse as you know..try stay strong xxx

[Sophia1968 in reply to Millie09]

thanks Mille, my cat is called milly as well, short for Melissa, I won’t speak to my dr again, she was honest yesterday and said she really does not know much regarding the liver , I phoned my hospital today and asked when I will be contacted as I can’t take the stress, my consultant is on holiday until next week but they promised to email his secretary, I had the same conversation last week so let’s see, I’m not messing about with this, I’m seeing a councillor on Thursday and will get her to log that this is not helping my anxiety, then I will give the consultant a couple of weeks and if no luck I will contact pals , I know I sound pushy and I know the nhs is stretched but I will literally go mad, I just need to know what to eat, what pills are safe and if I should eat more cos I’m worried I’m losing too fast, I’m scared it’s not all because I’m not eating rubbish, I’m scared it’s the liver making me malnourished, omg now I sound like a bloody hypochondriac 🤦‍♀️

[Sophia1968 in reply to Sophia1968]

And Breath ……… I have heard you Millie, I will try not to stress and worry, xx. Starting from after the last post obviously lol 😂 xx

[Millie09 in reply to Sophia1968]

Hahaha 😆. you will get there hun , takes time these days to get anything done and not just health wise .. xxx

[Millie09 in reply to Sophia1968]

I had a cat called millie , sadly no longer with me but I have one of her kittens.. Well she's 13 years old now bless her I also have lilly ,she's a white cat age 5 and then lola who is 12 months old ,they keep me sane lol ..I see so your dr wasn't sure regarding liver issues, but at least the consultants secretary has been notified and email will be sent to you soon .

Good idea to get therapist involved , I recently had to do that along with my hepatologist due to my decline in health where I'm living , I'm moving on Saturday thanks to all the help I've had .

Your obviously worried regards to your weight , I was suffering malnutrition myself, I was placed on fortisip drinks so maybe bring that to consultants attention.

Keep smiling .. you will get things sorted.

Love linda xx

[Smegmer]

A Fibroscan does not report "severe liver impairment" - That the Drs interpretation.

It gives a score in kpa that will show F0,F1,F2,F3,F4 with F4 being Cirrhosis. F3 and F4 are permanent and usually progressive. Most now have a CAP score which measures fat. Just ask for the actual report or some numbers. I feel the Dr could have been clearer with you.

[Sophia1968 in reply to Smegmer]

hiya and thank you for replying, I was given my results at the time of my fibro scan, my cap was 360 and no surprise as I have been told my fatty liver is servere, my kpa was 21.5 which really shocked me, the dr was sent a report which said severe liver impairment , it was me reading up what that actually meant and it translated as acute kidney failure so that’s why I panicked, I still don’t get why they wrote that when most people get cirrohsis written, I have not had bloods done yet so I knew it was not based on that, which is why I just wondered if the scan shows more detail than I first assumed, thank you for your help xx

[Onesmallstep1969 in reply to Sophia1968]

Hi Sophia,

Fibroscan scores (measured in kpa's) tell you whether you have liver damage, and if so, how severe the damage is. You can go from F0 meaning little to no damage, normal, to F1, F@ (moderate(), F3 (advanced) to F4 (cirrhosis). The Fibroscan score cut-offs vary by disease. There's a chart that is available if you search for "Fibroscan chart". Then you compare your number to the type of liver disease you have. Some diseases cirrhosis starts at 13.5, for others it's 18.5, etc. Take it a step at a time. You can reverse liver disease in the overwhelming majority of cases. So, if you've got a "21", with treatment and lifestyle changes, that can decrease (regress) to 14, and on down. Good luck to you. Never give up!

Fibroscan chart

[Sophia1968 in reply to Onesmallstep1969]

thank you hun for your time, I don’t mean to sound in denial but I keep praying that my 21.5 kpa was wrong, I have a high bmi prob near 40 if I’m honest, I just wonder if it could make it a false read, but then again when they say not accurate im assuming over estimate but could it mean under estimate? Obviously the report can’t think it’s a mistake cos it said sever liver impairment which really scares me, do they mean sever cirrohis , i kvow you don’t know the answers my lovely, it just feels good to write down what is in my head, and if someone is kpa of 15 (cirrohsis) then drop to 9.8 does this mean they still have cirrohsis this is what I find so confusing, really appreciate you explaining and posting the chart, thank you xx

[Aotea2012]

I had acute on chronic liver failure and I had a lot of symptoms. I certainly wouldn’t have been able to ask questions on here…I was yellow, confused, had a very distended tummy and was having IV fluids. I was malnourished and generally feeling very very unwell. I think Katie has summed it up well. I suspect you have got liver impairment but with the right support and treatment can improve your liver condition. Even with acute on chronic liver failure, I’ve been able to get back to a position where I’m well. My bloods are normal and I take no meds. My scan shows that I have cirrhosis, but I can honestly say I feel fine. The underlying cause was alcohol and I’ve not touched a drop since I was diagnosed 2 years ago and have therefore given my liver a chance to recover. If you’ve been told you have impairment but you don’t have cirrhosis then that can only be a good thing as you should be able to reverse any damage. Even with early cirrhosis there can be liver improvement - but not a full return to full functioning at that late stage. I don’t think you have liver failure. You wouldn’t be symptom free. Try to relax and make sure you’ve been referred to a specialist by your GP.

[Sophia1968 in reply to Aotea2012]

thank you hun so much, I am sorry for all that you went through but I’m glad you are in a better place now and feel well, how we feel is the main thing really, I know worrying is making me feel I’ll so I need to break that, otherwise I’ll convince it’s my liver when really it’s my own brain….. if I look at it sensibly maybe they could not put the word cirrohsis until other tests confirm it, maybe I looked too deep into those three words and looking it up was stupid of me, if I had not done that I would have prob felt better that it didn’t sound as bad as cirrohsis but it made me feel worse, now I would be grateful to be compensated cirrohsis after what I read, it proves how we really should not google, after my womb cancer I was in the macmillan site and I was that person telling them all how not to google and how out dated it was and use nhs app only, pity I didn’t take my own advice, cos I still can’t get this out of my head now…. Speaking to you all on here has helped so much though cos it’s true I would have severe symptoms I realise that now , thank you so much xx

[Roy1955]

It's PC language.

Severe liver imparement is another way of saying cirrhosis.

Just like alcohol abuse syndrome is another way of saying alcoholic.

Some bright spark changes the names to make it more acceptable.

Your well compensated and have an early warning.

You can keep it that way.

[Sophia1968 in reply to Roy1955]

thanks Roy I just wish they had said cirrohsis cos then I was hopeful it was stage 1 , wording it as severe makes it sound as bad as it gets 😥 thank you for your reply x

[Roy1955 in reply to Sophia1968]

Sounds even worse when they call it end stage liver disease BUT it all means the same thing!

[Sophia1968 in reply to Roy1955]

so I’m end stage liver disease? I could still be stage 1 cirrohsis though? Is that right x

[Roy1955]

100% correct.

[Sophia1968 in reply to Roy1955]

thank you x

[PadoJoe]

Many people who get this diagnoses are still participating in risky behaviors that can damage the liver further. It is meant to scare you enough to stop if you have any behaviors that need changing. When I got the diagnosis you did I lived 30 years more before I had any serious liver problems. Relax, take a deep breath and live a healthy life the best you can. I pray for each of you when I see your questions. Never be afraid to post we all need to talk to others who know about this subject.

[Sophia1968 in reply to PadoJoe]

thank you so much, I do feel ok apart from this pain in my back, too left, but I guess the numbers just scare me, I could have handled it being nearer to 14, 21.5 feels horrendous, love your positive post and so glad you had a good 30 years, I had already started to lose weight before this scan so have kept it up since, I just hope it’s not too late to help xx