Hi. I stopped drinking almost 7 years ago after having a massive bleed. Since then I've had six monthly checks, scans, endoscopy etc however, a few days ago I had my first ever fibroscan and the result was a shock to me and the liver nurse. It was 36. The only medicine I take is propranolol 40mg 3 daily. I have no swelling anywhere and my bloods are normal. I am really worried.
Has this happened to anyone else?
Hi There
I had a fibroscan and it turned out at 19 my consultant was shocked accused me of drinking but I'd stopped over a year before the scan.
They said they would repeat it and when I reminded him recently he told me they weren't bothering to do it again.
As I've said once before I don't really know if my consultant truly believes the accuracy of the result.
Good luck
Hayley x
Thanks Hayley. I'm so worried but everything else is normal and has been for years. The nurse said that she has a meeting with my consultant tomorrow. This is my first ever fibroscan and my liver was on the point of giving up 7 years ago maybe it does need repeated.
Hi
Mine was my first following triple organ failure I now have chirrosis but my bloods are now normal.
I wouldn't worry too much I haven't and it's nearly a year ago that they did the scan.
Keep us informed.
Regards
Hayley X
Hi Hayley, may l ask please when your next scan is due? Having a cirrhotic liver needs to be checked for tumours every now and again.
I most certainly don't wish to cause concern, but your liver needs to be check frequently. So l would ask for a new scan. This shouldn't be left up to the patient to request, but sadly things can slip, and be missed.
Ask for a check please, if nothing else it will give you peace of mind.
Hi Richard
Thank you for your concern.
Two weeks ago I had a liver scan and only yesterday I had my bloods done my GP is on it and so is my consultant.
It amazes me how I neglected my body for so many years and now I seem to be the other way.
Once again cheers.
Hayley xx
You are quite welcome Hayley, I'm glad your being looked after. Try and forget any neglect you put on your body, we all do this from time to time. I've just eaten two Turkish Delight bars, knowing full well that I shouldn't.
That's made me laugh I'm the same with Bounty bars can't get enough I'm down to my last got the shakes (only joking)
😁 Hayley X
My weakness too. My finger hovered over the buy button on my web shop. I didnt succumb but they are delish!
☺ i have the same affliction with oreo cookies.
Thanks. I'm trying to stop worrying until I hear back from the hospital. I'm glad your bloods are normal again. Mine are to I think that's why I'm so shocked about my result.
Thanks for your help. Keep well.
Carole
Carole when you had your bleed were you not told then that you had cirrhosis? The medical follow up you've had with the 6 monthly scans, endoscopy and 6 monthly checks are all normal protocol for someone with cirrhosis. It is actually also quite normal for someone with established but stable (compensated) cirrhosis to have normal blood results.
The kPa of 36 just confirms a diagnosis of cirrhosis which you have probably had all this time without realising it or without having discussed it with docs.
My hubby is also approaching his 7th anniversary since diagnosis when he presented with a massive upper GI bleed due to burst varices. He has normal blood results and has all the same monitoring as yourself. His consultant isn't planning a fibroscan as she says it adds nothing to his diagnosis since we already know he has cirrhosis. Hubby is life long t-total.
Hope you get some proper answers after your hospital consultation.
Katie
Hi Katie. Your husband sounds just like me. I knew that I had cirrhosis since the bleed and gave up alcohol completely and also follow a low salt diet. My care changed though last summer from seeing the consultant to seeing a liver nurse. I think she has maybe wanted to see how bad my liver is. The way she was talking though was like I should be very worried and she was sorry to give me such bad news. If I don't hear from her soon I'll phone the consultants secretary and try to get an appointment to see him.
Thanks for replying
Carole
As your bloods are stable and you are practically symptom free then even with cirrhosis your liver can go on a good long while (no need to panic on that score). My hubbies consultant has patients on his books who have had a diagnosis of cirrhosis for 20+ years and are no where near transplant stage.
You have removed alcohol so hopefully your condition won't worsen as you have removed the thing that was attacking your liver so it is no longer under attack. Knowing you have cirrhosis you just have to keep looking after your liver and yourself, eat right, exercise and keep going - there is no other option. Keep an eye out for any signs that your liver health might be slipping (and symptoms) but other than that just keep living.
If you do start with symptoms that could indicate worsening make sure your doctors know of them and if need be there is always the possibility of transplant.
The British Liver Trust has a page dedicated to 'Living with Liver Disease' that you might find really useful. britishlivertrust.org.uk/li...
In your first post it sounded like you were shocked that you had a reading that indicated cirrhosis as if you didn't know you had cirrhosis. Where alcohol was the cause of liver disease F4 cirrhosis is any score from 19 to 75 is cirrhosis. I wouldn't worry about the fibroscan result at all - it has revealed nothing more than you already knew.
Katie
Hi Hayley, my fibroscan at diagnosis was 49 in Dec 2017 and was I really scared. They said I wouldnt go on the transplant list until I get "symptoms". My Gamma GT is now 350 and I feel so unwell but they are just keeping me under review every six months with ultrasound and bloods. Such a debilitating disease. My skin is really itchy all over, I cant sleep and I am getting very depressed. One of doctors I saw said that they wouldnt be bothering do another fibroscan for me either. Jackie
My husband had variceal bleeding last Oct & was diagnosed with cirrhosis. Since then he has done pretty well & his consultant said he was Child Pugh A. The consultant he saw wasn't keen on doing a fibroscan & said even if it was high he would still give him a good prognosis. So if everything else seems ok you may not need to worry. The consultant my husband saw has now retired & we're still waiting to see if another will want to do one - can't decide if it's a good idea or not!
Hi Cazzmd,
Just thought I'd throw my 2 cents in.
Hubby was in liver & kidney failure in Nov of 2015 and does his every 6 month check ups with his liver doctor. We live in the US and his liver doctor has never done a fibroscan on him, he uses ultrasounds. I asked once and his doctor said since they know he has cirrhosis how stiff the liver is is not adding a great deal of info at this point. The ultrasound tracks stuff including an aortic aneurysm and looking for "spots" and other changes. Hubby says he feels great since we started [based on his VA docs say so] on 3 a day lactulose and I'm happy cause he is pooping LOL - Ah, the little things in life that can make you happy.
It could be your new liver nurse is being more detailed and she may have been surprised at your liver based on how well you seem to be. It is good, too, that she is talking to your consultant and she seems to be trying to stay on top of things.
Wishing you all the best.
Mary
Hi. Thanks. Yes I think she was more surprised than I was. At the time of the bleed my liver was in such poor condition that they had considered cutting some off to see if it would regenerate. It was touch and go and I was in a coma. I’ve now recovered pretty well (I think) and have gone from de compensated to compensated and haven’t been taking spironolactone for the last couple of years. I get ultrasounds and an endoscopy every 6 months. On thinking about it now I don’t think anything has changed for the worst as I’ve not developed swelling or anything. I think my condition is much the same as your husbands.
Thanks for your help and hope your hubby remains well.
Carole
Hi Carole,
I hope you hear back soon from the liver nurse's talk with the consultant and that the news is good.
I found it interesting that someone had a thought to cut some liver off to see if it would regenerate - huh. I am going to have to put that in the notebook I use for hubby's doctors appointments and ask his liver doctor about that - strangely the idea fascinates me and I'm not sure why.
Thank you for your good wishes and I hope you let us know how things go.
Best wishes to you,
Mary
Heya Carole, To add a positive spin on this consider that if you had of had a fibroscan 7 years ago its possible your score was even higher then. It is possible that over time your score has lowered and your liver has actually improved. It is not impossible that some regression can happen in the liver over time even in cirrhosis. Especially if all your other scans and tests over the years have not shown anything is getting worse I think it could be a real possibility here!
I think this might be the most inversions of the word possible i have ever used in one paragraph lol ☺
Fibroscan result 
Fibroscan Result - False?
Fibroscan result/advice!
Fibroscan result query. 
31.6 kpa fibroscan result 
