Result of fibroscan

[Oscardog]

Hi

I had a fibroscan today and the results were 12.5 so there is scarring on the liver so the technician said..I am wondering if this is the start of cirrhosis? Does anyone know? Thanks

[Lindilou]

Hi Oscardog,

I had a Fibroscan a week ago, there were two machines at the hospital the first gave a reading of 17.6 which indicates Cirrhosis the second machine was newer and gave a reading of 14 which is not Cirrhosis. It will depend on the machine as to how accurate the reading.

The technician said they take into account the liver function and other tests too, so although my first reading suggested cirrhosis, I am still very healthy, working, exercising and leading a normal life. He also said that with PBC they give a higher reading by 2/3 points, made it more mind boggling for me but does this mean 19 is cirrhosis?

I'm going to keep doing as I have been, eating healthy and looking after myself and the hospital are doing regular bloods to monitor the liver function. I haven't had any letter or follow up correspondence (which is a good sign) but if I do I will keep you posted

Take care x

[Oscardog in reply to Lindilou]

Thank you for replying..that was interesting re your scores. I had two taken as well and readings almost the same. I was told I had PBC over 22 years ago and just forgot it as I was well and LFTs not too bad but they suddenly went up.

you sound healthy as I am in many ways except I also have fibro myalagia, although that has improved a lot since going gluten free. The only downer is the itching and Urso makes this worse but there you go.

Keep in touch.

[Lindilou in reply to Oscardog]

I've had it for around 14 years, since I was around 30. Sorry to hear you get the dreaded itch and fibro myalgia. I have raynaunds and vitiligo, not too troublesome, just can't deal with the cold

My last Lft in July was normal (never has been) only thing I'd changed was drinking more water and taking a herbal artichoke and milk thistle tablet. Check with your doctor before taking though. Just waiting to see what last bloods were a week ago, see if they were still good

Will stay in touch x

[Oscardog]

Thanks will aak him re the herbal medicines..well done your Lfts going back to normal.....are you on Urso?

[Lindilou]

Yes I was shocked and please, just hope they stay that way I'm on 1000mg a day of Urso (weigh 10st 10lbs), I know they work it out on weight.

[Wendy29]

Regarding the itch, I've had terrible itch and dreadful rashes over the years. I've just started a gluten free diet ..... Dare I say it, only a week and already seeing a vast difference. Anyone out there suffering, please give it a try - also massively cut down on sugar!

[Hidden]

As others have stated, there could be a variation of results from one machine to another and also in how good the technician is. The following two sites give some valuable information regarding fibroscans and their results.

The third site discusses the differences between the fibroscan and ultrasound tests.

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

hepcbc.ca/fibroscan-alterna...

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

[Wendy29]

Meant to say I had recent score of 14 despite being on steroids for last four years (PBC/AIH) and I was pretty gutted to get that score as I thought taking the meds were protecting my liver from effects of disease. Not feeling that great either, and ultrascan showed visceral fat in my pancreas now as well as my liver -.im overweight but not obese - but that's why I'm cutting the sugar and gluten thing - hoping it makes a difference inside as well as outside

[Hidden in reply to Wendy29]

Hi Wendy29,

I can't speak of AIH as I don't have that, but I do have PBC (27 years since diagnosis) - you said you thought the meds. protected your liver from the disease. From my understanding Urso is thought to only slow the progression of PBC down, not stop it permanently. I may be wrong there, but I haven't seen any research articles stating otherwise.

[Wendy29 in reply to Hidden]

I left a reply Diane but prob in wrong box - soz - anyway, I was shocked to see I had developed a score that high after taking immunosuppressants

[Hidden in reply to Wendy29]

I'm not a doctor, but I don't think immunosuppresents work for PBC. Are you also on Urso?

[Wendy29 in reply to Hidden]

I have been on urso years ago, but when I asked recently, I was told that it wouldn't really have any advantage for me.

[Hidden in reply to Wendy29]

That's interesting, why wouldn't Urso be any advantage to you?

I'm on a couple of Facebook 'PBC' support groups, and there are quite a few with the PBC/AIH overlap, and none of them have ever mentioned that Urso wasn't particularly advantageous to them.

[Wendy29 in reply to Hidden]

You know Diane, at my next appt I'm going to ask again!

[Hidden in reply to Wendy29]

I'm a bit of a 'researcher' so went and had a look at a couple of medical sites which explained the PBC/AIH overlap syndrome - came across this one (it seems to be one of the most recent studies) - I will have to read more on the 'overlap syndrome' before I understand it fully though,

sciencedirect.com/science/a...

[Wendy29 in reply to Hidden]

Dianne, thank you so much for this link - I read it and it as pretty much what my hep doctor told me but I haven't actually seen it documented so it was interesting. A bit concerning too I have to say. I am a bit of a researcher too - I've had to be really as we've not got the greatest medical gene history in the family. Did you do the future learn online liver course?

[Hidden in reply to Wendy29]

No Wendy, I didn't do that, or any, course on liver diseases. But, as I've progressed to cirrhosis stage I have really taken an interest in PBC (spent the first 20 years after diagnosis in ignorance about it), and it's complications. My interest was also spurred on by my cousin's journey with PBC - we were both diagnosed the same year - she was transplanted 15 months ago. We used to compare 'notes' via emails etc. - she is still in the States, and I live in Australia - while we both had similar symptoms, i.e. fatigue, itching, and joint/muscle/bone pain, Lynda developed a number of other issues related to PBC, that I have not.

[Wendy29 in reply to Hidden]

I'm pretty sure it's still available and you may find it quite interesting - I enjoyed it. It's a totally free on-line course that is meant to run over three week period approximately three hours per week but your research can take you way over that if you let it. Just google 'future learn course - liver' and I'm sure you will find it. I have had other auto immune issues over the years that my mum did not - I was dx lupus, discoid lupus, lichen planus, oral lichen planus, lichen sclerosis (changed certain part of my anatomy by time I was dx), sjogrens, dermatitis herpetiformis - my mum didn't have any of these other AI skin problems but did have raynauds which I don't. We are all slightly different.

[Hidden in reply to Wendy29]

Thank you for the link - I'll have a look for the site soon.

Take care.

[Wendy29]

The treatment for AIH is immunosuppressants including steroids. The idea being if you stop the immune system in its tracks, it will stop attacking its own liver cells. Unfortunately a side effect is that you end up with a very low immune system and horrible side effects for the steroids and immunosuppressants Dianne. The hep told me what happened to my mum wouldn't happen to me as she hadn't had the meds in time. Hmmm.

[Hidden in reply to Wendy29]

Ah, I didn't see this until after I posted the above reply. Did your mother have PBC? I was diagnose 27 years ago and am now Stage 4. Even though I'm not a full responder to Urso I was still shocked to find out I had progressed to cirrhosis stage.

[alison600 in reply to Hidden]

Hi Dianne,

I took my first URSO pills yesterday and wondered if you were taking URSO the full 27 years? Also, when you were tested through the years were you lfts low? Just wondering if there was any indication that your liver was worsening over the years with high lft scores or were they always low?

I've just wondered if URSO simply reduces the blood test results while the liver continues to deteriorate at the same rate. I hope that makes sense

Thanks for your help

Alison

[Hidden in reply to alison600]

Yes Alison600, that makes sense.

First off, you must understand, and remember, that everyone of us are different, and experience PBC differently - as I indicated above when discussing my cousin's journey.

I began taking Urso about 7 years after diagnosis (I'm in Australia so I think my GI wasn't aware of the Urso at that time), so I have been taking it for 20 years or so. When my GI first prescribed Urso he did say that the 'jury was still out' concerning whether or not Urso worked in slowing the progression, or in fact just lowered the LFTs themselves.

Yes, once Urso got my LFTs down they remained stable, and stayed within a similar range throughout the years. Strangely, now that I am in cirrhosis stage my LFTs are even lower than they have been since diagnosis.

Your question: "I've just wondered if URSO simply reduces the blood test results while the liver continues to deteriorate at the same rate." is a difficult one to answer, i.e. the rate of deterioration. The rate of progression varies from one patient to another - there is no set progression rate. My cousin for example, progressed much faster than I have, even though we were on the same dosage of Urso - she even started taking Urso 7 years earlier than I did.

As you are only just starting your PBC journey (well, I think you are if you are only just beginning to take Urso) you will more than likely be on an 'emotional roller-coaster', this is pretty normal, we all do when first diagnosed. ^_^ It took me about 6 months before I was able to stop stressing and return to my 'normal' life - except for the fatigue, I pretty much forgot I had BPC for 20 years or so. What I'm trying to say is, that over time your shock and stress, after being diagnosed with a chronic condition, will easy.

Take care.

[alison600 in reply to Hidden]

Thank you Dianne, your support is appreciated. I believe I have had PBC for a number of years now as my lfts have been elevated for at least 4 years, maybe more. The Dr. wrote it off to my thyroid medication, but when they kept increasing each year they tested for AMA for which I was positive.

Question for you, if your lfts were normal, how did they determine you had reach cirrhosis ? I would think they would let you go as healthy. What are the next steps for you now? I am assuming transplant, but am not sure if you need to be dire before they add you to the list? How are you feeling? Do you know what stage you were at when you were diagnosed? Last question, you mentioned in a previous post that you didn't really respond well to URSO how soon did you know that?

Sorry for being a pest, but very interested in your journey since I am just starting mine.

Thank you so much for taking your time to answer.

Alison

[Hidden in reply to alison600]

No, my LFTs were never 'normal', they were near normal and remained that way for 20 years or so.

Yes, my old GI kept telling me that due to the stability of my LFTs, nothing had changed, even though I kept telling him that I was experiencing more symptoms - new symptoms began occurring about 6 years ago. I changed my GI for a Hep. doctor who actually listened to me and sent me for an ultrasound which showed a cirrhotic liver, a later fibroscan's result was 30 - indicating fairly advanced cirrhosis.

Next steps: they just treat the complications that arise once cirrhosis sets in. I now have three monthly blood tests, and six monthly ultrasounds. I also have annual endoscopes to monitor my varicies.

Transplant - no I won't be eligible for a transplant, as I turned 70 last July and the transplant cutoff age here in Australia is 70. Different countries have different cutoff criteria for transplants.

From the results of the biopsy done when first diagnosed I appeared to be in Stage 2.

Responding to Urso: my specialist told me that because my LFTs did not return to 'normal' then I wasn't a 'full' responder to Urso. To tell the truth, I'm not sure if anyone's LFTs actually return to 'normal' whilst on Urso - from the many posts I've read very few seem to return to normal.

Hope I have answered your questions.

Take care.

[Wendy29]

She was already advanced liver cirrhosed by the time she was dx (she was grieving for the loss of my brother and kept her worries to herself believing she had cancer) - poor mum. She was initially dx with what was then AIH (then called something else - can't think now), then changed to PBC. From my experience I believe she had the same as me which is neither PBC nor AIH but indications of both which as my hep told me, the experts don't fully understand even now in all these years.