Opposing Diagnostics about cirrhosis

[Juamcc]

My gastroenterologist said I didn't have cirrhosis my hepatologist said I did have cirrhosis. Will a fibroscan settle this? I have autoimmune PBC and diabetes both are under control. I'm over the itching and severe fatigue. I've never had a biopsy... I have an ultrasound and that's where the different opinions came from. I've been diagnosed for 2 years but I think I've had it for 10. I was asymptomatic for 8 years. My main question is, will the fibroscan settle the opposing diagnosis?

[Juamcc]

I need help immediately.

[butterflyEi]

Hi Juamcc

Unless there is someone on this forum who has had experience of your predicament I wonder if your best course of action is to telephone through to The PBC Foundation this morning.

I see you posted again needing help immediately, it is so difficult and unsettling when specialists disagree however if you are feeling basically well in yourself I would try not to worry too much. PBC is said, in most cases, to be a slow progressive disease and if you were cirrhotic at an advanced level you would be talking transplant.

There are one or two articles on fibroscan which can be googled which may answer some or part of your question.

Good luck I hope someone can answer more fully.

best wishes

[Hidden in reply to butterflyEi]

Hello butterflyEi.

From what I can gather with PBC even in a cirrhosis stage unless there are other factors (ie blood results, certain ones) transplant might not be necessary then but might become so.

It's said that cirrhosis can last for years in some patients.

I think it depends on how you are doing even in this stage. I could be wrong but as we know we all vary with this PBC and though we share same symptons everythign seems variable between us.

[butterflyEi]

Hi Juamcc

I just typed fibroscan into the search PBC Foundation window top right hand side of this page and there has been some chatter on this forum from other contributors. Maybe worth a look.

best wishes

[Hidden]

Hello Juamcc.

I am not sure about fibroscans, never had one. I know on some health programme earlier this year (it was all about diet) the presenter had a special scan that measured liver density and was given some figure of which he was within normal range.

Back in 2010 when I was itching intensely I had an ultrasound several months after my bloods (the LFTs (liver function test)) were found to be higher than normal range and my GP had undertook other blood checks to rule various things out. Then he determined via blood if bone or liver related and once liver, I had the scan.

The scan showed my liver and surrounding organs to be pretty much normal.

Now notso long before I was diagnosed with PBC (December 2010) I saw a programme on tv (I am in UK) and it was live to air and 2 men (one overweight, think he was said to be late 30s and the other was early 50s but alcoholic) were given scans and the specialist pointed out them there and then and stated the overweight man had a fatty liver and the alcoholic had got to cirrhosis stage. From this I reckon it is known how our liver is.

Me neither has never had biopsy. I was diagnosed due to bloods, symptons and also it was found I had a high titre of antibodies (AMAs).

I've never been asked to have a biopsy and I'd not have one. Supposedly said to give a stage of PBC but I think the liver being a large organ the biopsy site might not be a true picture although it is said that the liver cells throughout can show PBC. A biopsy won't change treatment in a PBC diagnosed patient so this is my reason.

[Juamcc in reply to Hidden]

I turned down a biopsy as well because I asked him if my treatment will change and they said no

[fran40barry41]

I had a pericarditis but was sent home twice with no meds and told I had gall stones in my bile ducks,even though I had gall bladder out, Was eventually

diagnosed with Lupus which can cause all sorts of problems so get tested for

this ,

[dooley1]

I doubt whether the fibroscan would diagnose cirrhosis as far as I'm aware that measures inflammation and fibrosis, to confirm absolutely a biopsy is best.

[Juamcc in reply to dooley1]

I took it . It gave me a meld score of 8 of 73 which is just a hair out of normal. 6 or 7 is normal. I'm too old for a transplant anyway.

[dollydaydreams]

I had a fibroscan and the reading was 19.4 and was told it indicated F4 which is cirrhosis by the person who did the scan, my gastro said it is only fibrosis as nothing is showing on the ultrasound so i don't know what to think, i am as wise as you are.

[moepag]

I had a fibroscan and think it is useful as yet another tool to monitor your liver and gauge progression. Not sure if the results will satisfy your doctors but I was happy to have the results of this in addition to an MRI and ultrasound. I chose not to have a biopsy because I am at fairly early stage.

Best of luck to you,

Maureen