Fibroscan 4.7

[Chazzy]

Had my consultant appointment this morning who confirmed PBC and given me urso prescription to start when my blood results come back. While there had a fibroscan with a reading of 4.7 which she said is normal?? In. Scale 1-7 does it mean higher end of normal or is it not that sort of scale?

Feeling a little flat now it's all confirmed and he said basically the biggest burden of the disease is the unknown of how it will affect you or how quickly. Did say eat a healthy diet and I can have small amounts of alcohol as long as I'm not exceeding recommended limits.

How did everyone feel when they knew for sure? I had felt like was ok and now feel down again even though said no damage and I'm pretty healthy. Worried what if im one of the ones that develops it quickly?

[kimphoebe]

The trouble is nobody knows how it will progress. I think I am probably one of the unlucky ones who seems to be progressing quicker. Was dx 2012 with mild pbc now it seems I am what they call a nonresponder. Just got back from clinic with a fibroscan score of 16.3. So I think you are ok with a score that low so don't worry bout it to much.

[JanineNZ]

Hi Chazzy. I was diagnosed in July and it was a big shock. I went home from the specialist and read all the bad stuff on the internet and hardly slept for the first three weeks as I thought I would be incapacitated and dead within 15 years. Over the next few weeks, as I got 'normal' ultrasound and fibroscan readings (4.2) back, I started to settle. The specialist wouldn't give any prognosis at all so that didn't help the anxiety. However, reading the comments on this website from people who have had PBC for many years has made me realise that my demise is not likely to be imminent and that there is no choice but to get on with life and make the most of the good years - as much as the fatigue allows, anyway. I now feel sad and flat, like you, but less worried and more determined to make the most of the good times. There's little we can do apart from take our meds and keep as healthy as possible with a good diet and exercise. All the best with your journey - I hope it helps just a little to know there are others who understand, and to know that what you're feeling is normal. Try to be kind to yourself, take a bit of time out if at all possible to come to terms with it all.

[Louedwards]

That is a good score m8ne was about the same. Try not to worry easier said than done i know

[SheepJane]

Mine was about 5.5. I was told most "normal" people are between 4 and 5 and that I should not worry that mine was 5.5. So you can be happy not sad!!!

[Puddles]

Hi Chazzy,

I was diagnosed three and a half years ago and I can relate to what you are going through. One of the biggest challenges of PBC for me initially was learning to go on with life without dwelling on the fear of what might be in store.

First I think reading experiences of others here who have had PBC for 10, 20 or more years helps see that yes you can still live a happy and fulfilled life. It is a process that takes time to come to accept that this is true, but I found that each day I continued with my normal life - I realised for now it wasn't any different to what it was before I was diagnosed. I know this may change in time, but how long and how much - no one knows. So I decided to do my very best to enjoy the "now" - my family, friends, work - and to trust my doctor when he says at this point he is not worried.

It is difficult that we cannot be given any guarantees about how quickly things will progress or what symptoms may develop, but really there are never any guarantees in life with or without PBC. So try to stay positive, look after yourself, and take one day at a time. It is a big shock, but it does get easier with time to focus back on living your life.

All the best

Puddles xx

[dollydaydreams]

Chazzy 4.7 is a very good score mine is 19.4 so I would not worry hun 4.7 is a score for a normal working liver.

[Chazzy]

Thanks for keeping me going.

[moepag]

Good morning Chazzy - I'm in the US so may be slightly different although should be very close if not the same. When I had my Fibroscan in 2015 I had a score of 6.9 which is considered to be stage 0-1. I will give you the breakdown of stages that are on my report .

< 7: Stage 0-1

7 - 8.5: Stage 1-2

8.8 - 11.5: Stage 2-3

11.5 - 13: Stage 3-4

> 13: Stage 4

It would seem as though you are very early stage which is great! Even so, it takes time to get used to your new normal and living with a diagnosis. I hope you are responding well to the Urso!

Best of luck to you,

Maureen

[Chazzy in reply to moepag]

Thank you. They did say 0-7 was a normal reading. Hard getting head round the whole thing.