Fibroscan 12.2?

[Pin44]

This is my first visit to this site. I am 73 and was diagnosed in 2014. I take 1000mg of Urso and have just had a fibroscan of 12.2. My LFTs are only slightly abnormal but I am anaemic. I really just want to check in and say hello

[Ktltel]

Hello Pinn44,

Can I ask, when you were diagnosed back in 2014 did they give you a stage? Had they caught PBC early?

Stella ❤

[Pin44 in reply to Ktltel]

Hello Ktitel, They didn't give me a Stage, but I was asymptomatic and it was just picked up because of Elevated AMA. Now I do struggle with fatigue, brain fog, and some itching - though I can live with that. Luckily I live in France where they check bloods, do a yearly fibroscan, and I see the specialist every 3 to 6 months. The GP is onto it as well. I haven't taken it particularly seriously till now; I drink practically no alcohol but like to have a glass every 10 days or so. Would love to receive any advice you might have. Thanks - PiN44

[Ktltel in reply to Pin44]

Pinn44,

What does a 12.2 Fibroscan mean? Isn't that early cirrhosis? I personally don't understand those numbers, but I read that online. Didn't your doctor explain what that Fibroscan number means? I'd be interested to know.

I don't drink at all since I was diagnosed in 2016. I never drank much anyway. Occasional drink with dinner eating out sort of thing.

I'm supposed to be early stage and my biopsy back in December of 2016 only showed mild fatty liver. I've been on URSO for about a year. I'm hoping to have my first Fibroscan this year at the end of March.

Stella ❤

[gwillistexas in reply to Ktltel]

By the fibroscan score chart I saw, 12 is f2-f3, appeared to be higher end of f2 & lower end f3.

[Ktltel in reply to gwillistexas]

Gwillistexas,

Lol what's wrong with me. Brain fog.

Yeah, I don't know what those numbers mean. I'll do some research too. Thank you.

Stella ❤

[gwillistexas in reply to Ktltel]

Lol! 🤗

[Pin44 in reply to Ktltel]

Hi Ktitel, I don't know the answer yet. Will be seeing my GP next week and will ask him. When I see my Liver consultant in April I'll then get the answer because I think that, with the whole picture of scans, blood tests, etc., which the specialists need, we're each more likely to get a more thorough and personalised picture. It appears to be a chronic disease that little is known about, as yet, and probably needs funding to do more research into.

Pin44

[Pin44 in reply to Ktltel]

I wish I knew what 12.2 Fibroscan means on whatever scale they use. it's something I plan to check up on. It's certainly a higher number for me than a year ago, which means that my liver has become harder and is therefore being affected by the disease. In fact, since Feb 2016, having been asymptomatic since September 2014, I suddenly crashed into a whole range of unpleasant symptoms, particularly chronic tiredness, more itching, and food/diet issues.

You sound similar to myself during the first 18 months. Because of my age (73) my specialist won't give me a biopsy as it could be dangerous. I'm happy with that!

Good luck with it all. The Fibroscan is a piece of cake, doesn't hurt, and takes no time. They put the scanner thing over your liver and move it around, and as it clicks on and off you feel a slight thump on the areas where the hand-held machine is. I get my results straight away in France, but it might be different in the UK.

Warmest wishes, Stella

PIN44

[mjk98]

My fiber can had me at f2 liver biopsy at f1 so not sure how accurate fiberscan is

[Hidden in reply to mjk98]

Or how accurate a biopsy is.

If you don'[t want to read the whole research paper scroll down to the 'Inadequacy of biopsy specimens', and then the 'Conclusion" sections.

ncbi.nlm.nih.gov/pmc/articl...

[Ktltel in reply to Hidden]

DianneS,

Thank you for that link!! I read the entire thing. And although it's not worded for the common person, i.e. the non medical professional, I think I got the gist of it.

Basically, my biopsy back in 10/2016, most probably is totally inaccurate. Which is very depressing. Also it has been noted that person's even in later stages of PBC can have close to normal labs. So, my labs which have been elevated (ALP and AMA-M2) are also no indication for telling me what stage I'm in. That LB and my labs, even the most recent ones are basically just letting me know that I indeed have PBC. But certainly not what stage I'm in.

How does my hepatologist live with himself telling me I'm in "early stage" PBC, not to worry, and just relax? Apparently, I don't know what stage I'm in. Why isn't a Fibroscan part of the initial diagnosis protocol? Questions I plan on asking him this next appt in March.

I understand that no matter where I am "stage wise" with this disease, that I'm still doing everything and the only thing I can do to slow it down. URSO or a combination of URSO and Ocaliva are, as they say... IT.

Still, for my hepatologist to tell me with such certainty that I was in early stage with nothing to be overly worried about was a lie.

I'm thankful that I'm on the medication and I'm hoping I can maintain a normal bilirubin and albumin. I'm also hoping my ALP goes lower. But... now, I'm a little nervous about having my Fibroscan in March. This being a more accurate test in what's going on with my liver, I sort of feel the nerves I had a year and a half ago creeping back over me. 😕

Stella ❤

[gwillistexas in reply to Ktltel]

Fibroscan is a great tool because it will measure scarring. I’m sure nothing is 100% but my GI swears by it. He trained under a liver specialist & if he says it’s the tool then I’m with him. 😊

[Ballymahon2 in reply to Ktltel]

I cannot understand stella why you have to wait until march to have a fibroscan here in ireland we can have one done privately cost 200 euro at anytime i think 200 euro is equivalent to 200 dollars approx i had one done within 2 weeks of being diagnosed with pbc i know you are waiting a long time to have the fibroscan

[Ktltel in reply to Ballymahon2]

Ballymahon2,

Here in the U.S. the doctor has to prescribe it. My hepatologist didn't think I needed one. He goes by my labs and my biopsy. It's very frustrating given the fact that biopsies aren't as reliable as I was led to believe. It has me worried. Yet, no matter what happens, I'm doing all I can by taking my meds. 😕

I talked him into me getting one last year in December. But the clinic where I was to have it called me a week prior to my appointment and told me their machine was down and they were rescheduling everyone until it was fixed. I waited 2 months for that appt. which was made in October. Then I got that call in December about it being faulty and it being repaired.

So now my follow up appt with my hepatologist is March 22nd. He has me having the Fibroscan at that time. Here the cost is $238.00 dollars.

Also, I'm overweight. I've struggled with my weight most of my 40's and 50's (I'm 58). I was told I'd get a better reading on the Fibroscan if I would lose 25 lbs. So, before March 22nd I'm trying to do that too.

Stella ❤

[Ballymahon2 in reply to Ktltel]

I know how you feel stella i struggle with weight also i gather you are early stage from what you have said i wouldnt worry too much it costs around the same in usa as in ireland my hepatologist ordered a fibroscan before she saw me

[Hidden in reply to Ktltel]

Hi Stella,

Just a little tip, Fibroscans (as the name implies) really only measures the degree of fibrosis and cirrhosis present in the liver (in our case) - and this is done by analysing the stiffness of the liver.

Now, unless they have improved the technology (which is possible since I had my Fibroscan) this particular test is not really useful in determining the earlier stages of PBC.

I only ever had two biopsies, both done within the first 5 years of my diagnosis. Twenty two years after my diagnosis I had an ultrasound which showed I had moved into cirrhosis stage (you could literally see the lumpy texture of cirrhosis on the outline of the liver), a subsequent Fibroscan gave a reading of 30.

Personally, I think for those in the later stages i.e. 3 and 4, ultrasounds and fibroscans are the more reliable indicators of progression - I mean, my lab. tests never indicated that I had even gone through the fibrosis stage, missed it totally - not that it would have made any difference even if we had known about it. ;-).

Take care

Di

[Ktltel in reply to Hidden]

Thank you DianneS,

How are you doing? I think about you often, our Shannon too.

I've been having slight nausea lately, and a little URQP. So it just gets me nervous.

Take care, and thanks for your input.

Stella ❤

[gwillistexas in reply to mjk98]

At least with fibroscan they get overall picture & not just a small section. I trust fibroscan myself.

[butterflyEi]

Hi Pin44

Welcome to the group. Have you joined the PBC Foundation yet? Free to join and members section has some good information and a magazine called Bear Facts. Also the web site for the British Liver Foundation is a good source of information.

take care, best wishes

[Pin44 in reply to butterflyEi]

Thank you, I'll get onto it. Having put my head in the sand like an ostrich, my symptoms are now demanding I take myself and PBC more seriously!

Best wishes

Pin44

[Ellymay1 in reply to Pin44]

Last week I had my first fibroscan 25.5 just diagnosed for pbc in November I can't believe you guys have to pay for it as it is free in Australia I don't understand the numbers either

[Aussielouise in reply to Ellymay1]

I’m in queensland and had to pay. Out of pocket $138

[Ellymay1 in reply to Aussielouise]

I live in south Australia and paid nothing

[gwillistexas in reply to Aussielouise]

I’m the USA. Paid $135. Private pay.

[littysgirl]

Question for those of you discussing this - what kind of test is a fibroscan? Is it like an ultrasound or is it more invasive? My liver issues were discovered through a routine blood test - highly elevated LFTs. Then I had an ultrasound, more blood work and eventually a liver biopsy. Even that, the results were confusing to the doctors. The doctor that I see every three months suspects I have an overlap of PBC and autoimmune hepatitis but the liver specialist I only saw once for a second opinion thought that most markers pointed to PBC. I am taking Urso only, not any medications for AIH - which is fine with me as I really didn't want to take those drugs. My LFTs are back in normal range. I am seeing my gastroenterologist this week for a three month check up and I'm wondering if I should ask for the fibroscan. Any opinions? Oh, I think I was officially diagnosed and started on Urso two years ago.

[gwillistexas in reply to littysgirl]

Sort of like an ultrasound but their gadget(lol!), sends sound waves into the liver & I believe your staged by the speed in which they bounce back. No pain whatsoever. Research it.

[gwillistexas in reply to littysgirl]

Forgot to say, it tells them the amount of stiffness in your liver. Wonderful thing about fibroscan is they check all of the liver & surround organs.

[gwillistexas in reply to littysgirl]

OOPS!!! Guess I had ultrasound on my mind when I said it checks surrounding organs. That is not true...liver only . I’m so sorrt🤗

[littysgirl in reply to gwillistexas]

No apologies necessary! Thank you for responding!

[Lookforward]

Hi there and welcome

73.. yrs eh.. my whole plan is based on getting to that age .. so congrats and sounds like only minor symptoms

Floradix great for anaemia also vit d in it so bones too

You’ll do just fine

Stay positive and maximise your health .. go walking if you haven’t done before . Cheap , you get better at it and meet other people .. good all round exercise for body and mind especially when weather is lovely

But I like to feel the rain sometimes too

All the very best for 2018