Fibroscan

Has anyone ever had a Fibroscan test that was wrong? Mine puts me in stage 4.

[butterflyEi]

Hi Hidden

I have not had a fibroscan but I noticed no one had managed to drop in and answer you. Do you know what the ranges are for a fibroscan and where you are in that range? Do you think your scan has given you an incorrect value?

best wishes

[Hidden]

I recently had a fibro scan but can't comment on having one that was wrong, as this was the first one I had.

My results were looked at by the consultant before being given to me, so mine were in the form of a letter not graded by a score or stage.

However I know the scoring goes from 1.5kpa right up to 75kpa so perhaps based on that, if you were given a score, you will be able to see where you are on the scale of things. Hopefully that will help in some way.

( If you look up the' fibroscan score card' online, you will be able to see where you are on the scale sorry I can't seem to put the link)

However, if you have not had a chance to discuss this with your doctors and you feel it's wrong, you should should see them and question it.

[Hidden]

I had a fibroscan two years ago - result was 30 - that result confirmed my ultrasound result which indicated extensive cirrhosis (bit of a shock for both me and my specialist, as my LFTs were, and still are, near normal).

In the article I will be posting a link to, there is listed a number of issues that could deliver a 'false' reading of the liver.

racgp.org.au/afp/2013/july/...

[happy-days71 in reply to Hidden]

Hi Dianne,

I have read a post you made a year ago, which I found very interesting about a article by a doctor who said that normal to low LFTs weren't a good indicator of the condition of the liver. I just wondered as you are clearly someone who is well informed and has had PBC for many years if you would ask specific questions to the consultant about the blood tests such as biliruben levels etc. if you were new to PBC like myself? I am wondering if I should request a fibroscan for peace of mind? it seems difficult to understand the situation if you're being told the LFTs are normal when in fact the liver could have extensive damage. I think many of us have conflicting messages from doctors etc. so it's hard to know what to do sometimes.

Thanks in advance for any advice.

[Hidden in reply to happy-days71]

Hi happy-days71,

Funny, I have just re-posted that particular 'LFTs' article in another thread here.

Concerning the fibrocsan, from my understanding, if you are in the early stages it won't be very useful - as the fibroscan article above explains, the machine measures the 'stiffness' of the liver, and in the early stages there is not necessarily enough damage to cause scarring i.e. fibrosis or cirrhosis.

I was sent for an ultrasound first, this indicated cirrhosis, so my specialist then ordered a fibroscan.

As for questions for your doctor, that really depends on how you have been feeling, i.e. symptoms etc. In my case I rarely asked any questions (seriously, I didn't ask because I didn't know what to ask about) - that changed when I started feeling very unwell and my then specialist told me there was nothing to worry about because my LFTs were very stable. I didn't accept that so I began researching PBC myself and changed my specialist.

ALSO, make sure you get copies of all your pathology reports, that way you can keep yourself informed and do your own personal research - if I'm unsure of some of my results I 'google' them and only look at hospital and or, university webpage for the information I require.

Hope that helps.

Di

[happy-days71]

Hi Di,

Thanks for your response, that's very helpful to know. I am told that mine is in the early stages and thankfully I have no really unpleasant symptoms, so in all things feel okay. As you've said it is good to have copies of blood results and other medical profiles to at least be able to do a level of your own research and change consultants should things feel as if concerns are not being listened to.

I had a ultra sound which appeared normal so at the moment it has not been deemed necessary to perform a liver biopsy and from what you're saying the fibro scan may not be useful for me right now. Have you ever had an MRI scan on your liver? another PBC sufferer I met mentioned it, so I wondered if this was also used to measure the liver function.

Thanks for your advice, I really appreciate it.

K

[Hidden]

I'm so sorry everybody I lost my way to get back to this site!! I have it bookmarked now.

[Hidden]

I'm just wishing it was wrong, but it isnt.