UK vs US - Ultrasound vs Biopsy

[AdeleMalcolm]

Hi everyone.  I notice on the site that lots of people are talking about having had or about to have a biopsy.  My liver specialist is suggesting only an ultrasound + a 'bounce test' through the ultrasound.  He sort of suggested that a biopsy wasn't advised.  As I've only recently been diagnosed and his letter to my GP still says 'suspected' would that be a reason or is it down to my LFTs not being totally horrendous?  Just curious really as I trust my specialist (he's in King's College Hospital - reckoned to be one of the best liver treatment centres).  Hope everyone is well and that no-one is caught up in the awful fires in Canada.  

[Hidden]

Hello AdeleMalcolm.

From back in early 2010 when I started itching and then having blood test after blood test to all come up negative (except the above normal liver function test (LFT)) to being diagnosed with PBC December 2010 after the consultant did an antibodies check (I tested positive for AMAs - the anti-mitochondrial antibodies - in a 'high titre' (measure)) and a biopsy has never been mentioned by consultant (except by my GP who reckoned I'd have one).

As I understand it a biopsy tends to be undertaken if a diagnosis cannot be concluded.

I had an ultrasound mid-2010 but my liver and surrounding organs looked normal according to the consultant and he also stated he could see bile ducts that were clear.

Apparently we can still have PBC even if our liver function test isn't overly elevated. Some on urso after diagnosis can find their LFTs return to normal but they still have PBC.  Mine haven't returned to normal over 5yrs on from diagnosis but they have come down over time.  Today I still itch but it's not as severe as in 24hrs a day like it was during 2010 and 2011.    I am in Lancashire and the consultant I saw did talks on PBC to GPs.  

[AdeleMalcolm in reply to Hidden]

Thanks peridot.  I didn't really have much in the way of symptoms other than light levels of fatigue (which have lifted almost totally)...it wasn't that bad to start with, just not what I expected to feel after having retired from the rat race.  When I went to the doc I figured it was iron or linked to my hypothyroidism (the former was an issue for me in the past). I'm AMA2 positive and my GGT is high at around 173.  My alkaline phosphosate was outside the norm, then back in, then out again.  My AST is slightly out the norm but everything else is well within the 'acceptable' ranges.  I'll be curious to find out when my specialist does confirm me formally as having PBC and whether he goes the route of the biopsy.  I'll keep you posted. 

Appreciate the response.  Best wishes.  Adele

[Becca75]

I had a liver biopsy that is guided by an ultrasound --- they use the ultrasound to mark where to insert the straw thing so they don't hit anything they shouldn't 

[AdeleMalcolm in reply to Becca75]

Thanks Becca.  I understand that but my Dr suggested they would avoid doing a biopsy - reading other posts I assume it's more to do with what he thinks is early stage going on my blood results. It just sounded from some that it was a fairly routine and standard practice by other docs. Appreciate your feedback.  Adele 

[Hidden in reply to AdeleMalcolm]

Hello AdeleMalcolm.

It seems the in the States regardless of being diagnosed with PBC without a biopsy, one tends to  be requested so some stage can be given.  I am in the UK and it seems that it doesn't work like that.  I have no desire to know what stage I am with PBC (though it was said I was 'early' back in late 2010 at diagnosis) and having a biopsy wouldn't change a thing regarding how the PBC is currently treat.

I doubt the picture of how PBC is stage-wise via liver biopsy as the liver being a large organ the biopsy site(s) might not give the whole picture as we can be damaged in one part of the liver and healthy in another and as we know we can live perfectly well (maybe slightly compromised) with only a portion of liver working.

If one can be diagnosed with PBC due to blood work, any symptons and also antibodies it seems that nowadays in the UK anyway that is adequate.  I was diagnosed like this .  I'd not agree to having a biopsy now.

[Becca75 in reply to AdeleMalcolm]

my biopsy was also for diagnostic reasons as she was considering two different diagnosis - the biopsy showed unequivocally PBC

[Hils67]

Hi AdeleMalcolm,

As I understand it a 'bounce test' is a fibroscan which uses ultrasound to bounce readings back which indicates the elasticity of the liver. My consultant has recommend I have a fibroscan as I'm newly diagnosed and it can indicate whether there is any fibrosis in the liver. Apparently fibrosis happens before cirrhosis, so it gives an indication of how the disease is progressing. He also explained it's less inavasive than a biopsy and a better indicator because a biopsy only looks at one little part of the liver, whereas the the fibroscan is performed on about 10 separate areas. 

Personally I'd rather have the fibroscan over a biopsy as there's a slight risk with biopsy of bleeding, and a fibroscan is as painless as an ultrasound.

I guess if a fibroscan shows there is some fibrosis they may then elect to do a biopsy then.

Hope this helps!

Ps I'm in Wales, UK, but I'm not sure if all hospitals currently offer a fibroscan.

Good luck and best wishes

Hilary

[AdeleMalcolm in reply to Hils67]

Hi Hilary.  A really helpful response....I did wonder what people were talking about when they mentioned a fibroscan too.  Just goes to show every response gives a bit more information - all goes to help in understanding this new process we're going through.  I had read also that the biopsy wasn't the best at understanding the extent of any damage (PBC Foundation help sheets and compendium).  At least I'll be able to speak a bit more knowledgeably with my specialist when I see him in July.  I live in Surrey (originally from Scotland) and am going to Kings College Hospital which is supposed to be one of the top liver specialist locations so I can only assume they have all the necessary kit.

Stay well.  Best wishes.  Adele

[Hidden in reply to AdeleMalcolm]

Hi, I was diagnosed in 2007 and had very high AMA readings, however, at that time biopsy was "gold standard" for conclusive diagnosis of PBC in our area.  Between then and now I have had 3 biopsies.  Thank god we now have a fibroscan machine, as this is less invasive and gives you an instant result which you can then discuss with your consultant.  Hope this helps.  Good luck and take care.

[AdeleMalcolm in reply to Hidden]

Thanks crich.  I agree, anything non-invasive is good particularly if it's more informative and as you say I'll be able to discuss the results there and then..  Best wishes.  Adele

[Hils67 in reply to AdeleMalcolm]

Hi Adele,

I'm sure they will have the best kit at kings college hospital. I think you should push for a fibroscan and if it comes back ok I don't think there's much point in putting yourself through the stress of having a biopsy. As I understand it, they can only treat PBC with urso, so unless you're getting horrendous symptoms then I don't see the point in a biopsy.

Yes, I've found this site so good for information. I was diagnosed just before Christmas, so have spent the last few months coming to terms with this and trying to understand all about it. After having an ultrasound which showed no damage, and LFTs improving on urso I'm content that I've been caught early, so am now concentrating on getting on with living life (albeit a bit more healthily!) to the full. I'm lucky in that I don't really have much in the way of symptoms, occasional itch, sometimes feel more tired than I should...so I consider myself very lucky! Fingers crossed my fibroscan will show no decline in elasticity!

Good luck and stay well too

Hilary x

[dollydaydreams]

Hi Adele, i was diagnosed by Biopsy 6 years ago and this time I am having a fibroscan, Like Hils I am in Wales and am going to Wrecsam Maelor for mine when my appointment comes through, but i did have to request it as my consultant is more biopsy minded.

[AdeleMalcolm in reply to dollydaydreams]

Hi. Isn't it strange that there's a variance between consultants!  I guess we're all different too in terms of our symptoms and blood results.  I hope you're doing ok.  Adele

[LindyRich]

Does anyone know if they do fibroscan at James Cook in Middlesbrough?

[gmo3352]

hi Adele

I am in the US, and every 6  months I have either an MRI, a Fibroscan or a biopsy.. My gastro alternates the tests, explaining that each test shows an extra piece of the puzzle. In my initial diagnosis, my AP levels were 3 times the norm, and I had jaundice, suggesting that I had significant liver damage. She explained that we "stage" here because the treatment for a stage 4, cirrohossis, is different from the treatment for earlier stages, etc. for example, stage 4 carries a worry of potential cancer, hence the need for for one of these 3 tests every six months, and blood work every 3 months. Scans and MRIs are less costly here than a biopsy. My insurance would not have covered these expensive procedures every 6 months and blood work every 3 months without the diagnosis of  cirrohossis, and the biopsy results left no room for question under my insurers guidelines. I guess from the forum that insurance coverage is very different in the UK. I hope this helps. 

[AdeleMalcolm in reply to gmo3352]

Hi gmo. Definitely glad we have the NHS here in the UK.  I expect to be making use of it a bit more than previously.  I'd hate to have to go through the trauma of any condition/disease and have to worry about whether I could afford the treatment.  I feel for you.  Adele

[dollydaydreams in reply to AdeleMalcolm]

I agree Adele we are so lucky to have the NHS.

XX Linda

[mollymom]

I am in the USA, where they tend to advise to have a Liver biopsy, but I was given an ultrasound b/c I am terribley afraid of any needles! Dr. told me only way to CONFIRM PBC was Liver biopsy, and to also stage it. But after two positive AMA test My new Liver specialist in NYC said I don't need a biopsy, she knows I have PBC. I am curious for those in the UK and elsewhere did Dr. advise a Liver biopsy right away???

[AdeleMalcolm in reply to mollymom]

Hi mollymom. My doctor said he preferred not to go the biopsy route as they can diagnose without. I'm due to get an ultrasound and what I now know is a fibroscan. From reading other posts it did seem like there were more docs in the US than the UK who opted for the biopsy route as the means of diagnosis. It sounds like that comes with possible severe complications so perhaps why here the tendency is the non invasive process. Stay well. Adele

[mollymom in reply to AdeleMalcolm]

Thanks for the great reply, Adele, all the best to you especially the best of health!!