Fibroscan

[vvannic]

Does anyone know what their fibroscan number is? What do the numbers mean?

[Crozes1]

Hi I do not know fully what they are but I am newly diagnosed and just had a fibroscan last week and they told me a normal liver is 7 and my score came out at 10 and she said they worry at 11.1 which is when they get concerned. I am still waiting to see the consultant to get further info. Apparently they think I have had PBC for years and never knew so hopefully with the URSO and a good diet and exercise things will go well for me. I am 61. Hope this helps a little.

[Juamcc in reply to Crozes1]

I'm just like you my meld score was 8. Currently I have no symptoms. I had PBC symptoms the first 3 years. I it still was fatigued my liver enzymes high

[Juamcc in reply to Juamcc]

I don't think you can get a transplant above 17. That's what I read somewhere.

[Crozes1 in reply to Crozes1]

Just to update have just had follow up appt with consultant who reassured me that my result was not something to worry about and he said PBC was number one for referral for liver transplant but recently he had not sent anyone for transplant for ages! So for the moment I am going to be positive and eat sensibly with the odd glass of wine which I love and exercise 😀

[Juamcc in reply to Crozes1]

I'm not sure about the transplant, especially if it is autoimmune pbc. Anybody had a transplant that had Autoimmune pbc?

[Hidden]

Hi, I had a fibroscan done late last year and it was 35.

[dianemle]

Mine was 60

[Crozes1 in reply to dianemle]

Hi Dianemie Are you in the U.K.? I am so score seems very different to mine?

[dianemle in reply to Crozes1]

I live just outside London

[dianemle]

Mine was 60

[Dieselwales]

Hi Wannic

There is a score card graph which may answer your question, if you google ' ' image of the graph for a liver fibroscan ' .

Hope this helps.

X

[spoul]

Mine was 57 three years ago......stage 4 cirrhosis. The scan measures the stiffness of your liver.....

[Emma715]

I had my fibroscan last week (UK) my score is 4 which is great I think

[Chazzy in reply to Emma715]

Mine was 4.7 and told me as a totally healthy liver

[Juamcc in reply to Emma715]

I do too.

[jane1964]

Hello I have had two fibroscans one 8.1, another a few months later of 6.8.

I have also had an ultrasound after which I was diagnosed with cirrhosis.And a liver multiscan a trial run by perception diagnostics, in Oxford of a new MRI scan which showed some areas of my liver to be very damaged and about a third ok. This gave very detailed pictures and I found it useful but it is only a trial.Meanwhile my blood tests are mostly very good.

I think all these results are only a guide not definitive but overall they show my disease is progressing more than I would like!One advantage of the fibroscan is its simple to do.I hope repeating it periodically will give better information on progression than the blood tests which have been very little use for me.The diagnosis of cirrhosis seemingly surprising my consultant,it didn't surprise me as I was feeling worse.I hope you get a good result.Jane

[Emma715 in reply to jane1964]

Hi Jane,

I'm waiting for my ultra sound results still. I thought the fibroscan results being 4 it might mean ultra sound would be good result too. Are your ultra sound results very different from the fibroscan then? x

[jane1964 in reply to Emma715]

Hello,yes 4 is an excellent number, I would be happy with that, score!My ultrasound does seem worse than certainly the second fibroscan but I have only been ultrasound scanned once, after 8 years post diagnosis so it's difficult to say if this is new damage or been there for years.Hopefully with fibroscan of 4 your ultrasound will be normal.

[Emma715 in reply to jane1964]

I will let you know. It's interesting to know.

[Wilmahair]

Hi mine was 4.5. Was told under 7 was normal. Feel pretty good as i have had PBC for 18+ years. Been on urso all that time. Was told i had no liver damage. What they do is send little shock waves in towards the liver (they did this between my ribs and was completely pain free.) and depending on how supple or stiffly the liver responds indicates the health or damage to liver. Hope this helps.

[paulineemily]

When Ihadthe scan I was told 4 is a healthy liver and 24 is a liver which has cirrhosis. mine was 18 so they and me were happy

[Juamcc in reply to paulineemily]

The info that came to me that I had cirrhosis even though my meld account was 8

[Millie09]

Well I am confused on everyone's score , I have Cirrosis , not liver failiure for 8 yrs now . Never had a fibroscan , not under any hospital either , but my friend has liver failure and her fibroscan was 8,7 ?? . Now reading all these posts makes me confused 🤔.. I really should ask my dr to refer me to have a fibroscan , wonder if I can request one myself ?

[spoul in reply to Millie09]

They aren't available in all hospital and they may not think you need one if you already have cirrhosis. I've been stage 4 cirrhosis for 3-5 years and when I asked at my recent 6 monthly hospital check they said it wouldn't be repeated once cirrhosis is diagnosed.

It is more important that you are monitored 6 monthly with ultrasound scan to check nothing sinister is happening in your liver.

Take care 😊

[Millie09 in reply to spoul]

Thank you spoul , oh I did not know that ? I thought they were . They must have one here in Birmingham at the liver unit at queen Elizabeth hospital . So even with Cirrosis they won't do fibroscan ? My friend has one and she is end stage . I never get called up at all for any scans as my hospital discharged me last August . So it was the year before that in the November I had a scan !! That's bad . I asked my dr by text message last Friday and he has just replied back that he was firstly looking in to milk thistle for me but nothing about a scan , my other fritnd has a tumor on her liver . She goes every 3 ninths and so far all is ok and no changes detected. So frustrating because I keep myself as healthy as I can ( big chocolate eater ) 🙈. Yet not even being given a scan . Don't know who to turn to next if your own doctor won't refer you . Hope your keeping well Hun xxx best wishes Linda

[spoul in reply to Millie09]

I don't understand why your GP wouldn't refer you to hospital again..........try another GP? I assume you have Pbc so does GP check your bloods and prescribe urso?

X

[Millie09 in reply to spoul]

He is my Normal dr I have had for years . I have stage 4 Cirrosis . No I don't have PBC . but I do worry why I am not under any hospital ? I had originally asked him first about milk thistle , and then abut being refered for fibroscan but it's been a week now and still I am waiting . Frustrated or what ! X

[spoul in reply to Millie09]

Dreadful when you have to fight for everything...... keep in touch let me know how you get on

Regards sue x

[Millie09 in reply to spoul]

It really is sue . Comes to something when it's the patient chasing up the care that should already be in place 😡. Oh I'm on the phone to them now . Will keep you updated . Best wishes . Linda X

[Millie09 in reply to spoul]

Oh I will do ! .. It's not as if I'm just suffering from a cold is it 🙄 Regards Linda X

[Juamcc in reply to Millie09]

You think they'd treat it more seriously but they don't have it.

[Juamcc in reply to Millie09]

Frustration is a symptom that goes with liver diseases. Haha

[Juamcc in reply to Juamcc]

So it seems.

[finfeature in reply to Millie09]

I too have this problem. Once I had my 60th birthday, no hospital appointments ,no scans, blood test only when I demand one. GP has no idea what PBC is even. Looks it up on the internet while I just sit there. Recently prescribed me with amytriptaline for hip pains. These made me so sleepy and ill, I couldn't take them. Tried a quarter tablet, 2.5mg and slept for 2 days. Later found that it is one of the drugs not recommended with PBC. Dr seems to think I am mental case.

I have given up.

[Juamcc in reply to Millie09]

I did.

[Juamcc in reply to Millie09]

I did. I finally learned something about my level of the disease that my Dr couldn't or wouldn't tell me.

[Juamcc]

Research "meld score." Mine was an 8

On Google

Ask Google is helpful to me when I don't know an answer and I need one.

[Millie09 in reply to Juamcc]

Will do ! Good idea 👍

[BellaKik]

APOLOGIES in advance for the length...

My fibroscan result is 15 & was told cirrhosis starts at 12 for my disease PBC. Again, it’s a tool to assist with evaluating your liver and is not as invasive as a biopsy. (I had biopsy 10 years ago, diagnosed with fatty liver after found to have elevated liver labs). Note docs will evaluate your score differently based on disease. Two helpful sites:

uhn.ca/PatientsFamilies/Hea...

hepatitiscnewdrugresearch.c...

Fast forward 10 years, diagnosed with PBC...better late than never to get on Urso I guess. For me itching is not an issue anymore although my hair is starting to fall out! And the brain fog & severe fatigue...ugh, have not been working since June

MELD score is not the same as fibroscan score, rather used to get you on the transplant list. My Meld score is now a 6 after everything has stabilized. Something interesting, my liver doctor told me he has PBC patients who got liver transplant due to severe fatigue even if their meld score did not qualify them. You go for an evaulation and they will approve points, as you need to prove quality of life diminished, etc. This may be me come January...I am praying this will not be needed. mdcalc.com/meld-score-model...

I am lucky to have found a great team that includes my primary physician managing my care along with Hepatologist (his office has a doctor who is part of a tranplant team), neurologist (having memory/recall issues) and a speech pathologist (when really tired I have difficulty articulating and chosing words).

Learn as much as you can & be your own advocate. Did you know that PBCers should get a bone density test as it is common for us to get osteoperosis? Hope you get to feeling better & best to all of us!

[SANDYTaylor]

You are fortunate to have this Fibroscan facility available to you as South Africa does not have as yet which is really stupid because I think that America has been using them for a few years!... I would love to know what stage I am in and whether my liver is still healthy. Diagnosed at 52. I'm now 58 and bloods have been normal.

Regards

Sandra

[Hidden]

just had a fibroscan yesterday score was 4.5 which I think is good 😊