Just an observation..

[deanw41]

I have noticed since I’ve been on here all these different test. Fibroscan, Child P score? MELD? ELF? Etc, my consultant has never mentioned anything other than ultrasound and bloods every 6 months and Endoscopy once a year. Guess it’s just different consultants take different approaches.

[Hidden]

Good morning,

It is possible that your consultant does not think any of these tests would add to the information he already has about your liver. However it is certainly worth asking the question at your next appointment.

regards

[deanw41 in reply to Hidden]

Thank you....

[AyrshireK]

As you have known cirrhosis based on various tests and obvious symptoms it is unlikely you'd ever need a Fibroscan or ELF (Enhanced Liver Fibrosis) test because it would just confirm what doctors already know you have.

Child Pugh Score and MELD (Model for End Stage Liver Disease) or UKELD (United Kingdom Model for End Stage Liver Disease) might come into play if you were ever to become needy for transplant. Doctors probably do calculate your UKELD/MELD score after your 6 monthly bloods because that would highlight whether your liver was at a stage where transplant might be required (in UK a score of 49 on UKELD is the minimum required for t/p listing).

You are not the only one who has never been told any score or stage, hubby has never been told any of these things either and really you don't need to as they are medical calculations that guide doctors on possible future interventions.

What's important to you is carrying on looking after yourself and living your best life possible - let the doctors do the doctoring.

Katie

[deanw41 in reply to AyrshireK]

Thank you. Yes your right, last thing my consultant said when I was asking questions was”Easy for me to say but don’t worry, thousands of people have what you have and don’t even know it”. So I get enjoy life now, what will be will be,I’m sober that’s the main thing!! 😊👍

[Hidden in reply to AyrshireK]

Hm, Katie, that was my approach, too. But now I have a new doctor and he suddenly thinks I should get a fibroscan. I asked him if that would provide me with any new information. I mean, I know my condition, I know the cause, I know that for monitoring the cancer risk I have to do ultrasound every six months.

But he still stays fibroscan would be useful. My question (and he couldn't answer this): what's the use? Cirrhosis is not reversible, so in my understanding the result of a scan would always be the same anyway?! Or is there a misunderstanding...?

[deanw41 in reply to Hidden]

My thoughts entirely. I have cirrhosis from drinking. I don’t drink anymore thankfully. I think the Fibroscan is to measure how much cirrhosis you have????

[AyrshireK in reply to Hidden]

I don't know your story or how you've been diagnosed, if your cirrhosis isn't 100% confirmed then I can see why your new doctor might want to stage your issue. My hubbies liver specialist has said as we know he has cirrhosis a fibroscan will add nothing to his diagnosis. Cirrhosis is obvious based on his symptoms and on every scan he's ever had.

Katie

[Str8jacket in reply to Hidden]

Liver stiffness may be useful to indicate when screening for varices should start.

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

[deanw41 in reply to Str8jacket]

I have an endoscopy once a year,they found a small grade 1 last year.

[Tommy62 in reply to AyrshireK]

I had my first 6 months scan after my consultant told me I was borderline cirrhosis but he should have told me to years prior so I was still drinking for 2 years not knowing I was borderline cirrhosis my score was 19.5 when eventually I was told and after getting my bloods done and scan all I was told was bloods where good and scan was satisfactory I'm still at a loss till what's going on

[Tia2021]

In my case I was told I was End stage 4 liver Disease September 2020, don't suppose they need to know any more than that, I have kept the acities at bay and there has been no further bleeds as I have varacies. x

[deanw41 in reply to Tia2021]

Sorry to hear that. Does that mean your on the transplant list?

[Tia2021 in reply to deanw41]

No my first Hep Consultant told me in a very abrupt manner I will not be a candidate for transplant and it will not regenerate, she is presently on indefinite leave thank goodness, her bed side manner left alot to be desired x

[deanw41 in reply to Tia2021]

How can they leave you like that?!Oh I had a Dr like that at my surgery,I had to change!!

[Tia2021 in reply to deanw41]

I think that is what I will do, x

[deanw41 in reply to Tia2021]

Yes I think so, they can’t just write you off like that surly!!

[Tia2021 in reply to deanw41]

I am going to defy the odds, I'm doing light excercise, eating healthy and trying to stay focused x

[Str8jacket in reply to Tia2021]

Did the docs explain why they would not evaluate you for a transplant?

[Tia2021 in reply to Str8jacket]

No but I will ask, still reading from the extremely blunt news x

[Tia2021 in reply to Tia2021]

The above should say realing x

[JennerLayne in reply to Tia2021]

Excellent job Tia, on the eating and caring for yourself. I would quickly find another consultant and ask them for a screening update toward a transplant. If you are not a candidate, surely they should explain why.

[Tia2021 in reply to JennerLayne]

I will do, Thank you x

[SteelOwl in reply to Tia2021]

Which Hospital area are you in Tia...

[Tia2021 in reply to SteelOwl]

The Royal Stoke, x

[deanw41]

Excellent!! Keep going!!! 😊👍

[jazzgirl80]

Yes. Change your gp and consultant, they are no good for you

[deanw41]

I’ve just changed my GP,no compassion or empathy.

[Tia2021 in reply to deanw41]

They really know how to make a bad situation worse , it is shocking x

[deanw41 in reply to Tia2021]

Yes, some certainly do unfortunately. But we must be our best health advocate l!! 😊👍

[Tia2021 in reply to deanw41]

👍👍