I was very disheartened by my recent visit to the Gastro unit. It's been 12 years since I was diagnosed with Cryptogenic Liver Cirrhosis, I've been on Azathioprine for 11 of those with routine Ultrasound Scans and Endoscopies. Good news is the Endoscopies have now stopped as I have been on Nadalol beta blocker. Anyway, I spoke to the consultant about having a fibroscan done as initially I had this done at a Harley Street hospital privately. They said my score was 75 (sad face), 12 years on, the consultant told me there is no point as it gives very little information. I then requested a multiscan and the response was "we haven't spent enough money on you already? Let's just repeat the ultrasound scan". I was taken aback and am now seeking to do this privately but I can only find Nottingham as my nearest location where I can get a liver multiscan done. I live in Cardiff, surely there is something more local? Does anyone have any suggestions? I just want to understand where my liver is at.
Thanks for your replies
Written by
Kashy
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Hi Kashey, what a shame your doctor worded his reply to you in such a manner.
What are you hoping to discover by having another scan if you don't mind me asking? With a diagnosis of cirrhosis going back so long and no doubt with every scan since repeating and proving your diagnosis a further fibroscan and indeed multiscan isn't going to add anything much to the picture. Only going to take £550 quid plus travel off you for the Nottingham place and reveal nothing more really than you already know.
You have cirrhosis - ok your score might well be way below the previous 75 kPa which may have been falsly elevated if you had ongoing inflammation which has now been dealt with but it is unlikely taking into account all the scans and tests you've had subsequently that either scan will reveal anything other than a confirmation of continued cirrhosis.
My hubby has never had a multiscan or fibroscan, his symptoms, ultrasound scans and biopsy all confirmed a diagnosis of cirrhosis and that remains the case. His consultant has said there is no point doing a fibroscan because it will add absolutely nothing to the picture, we know what we know. Cirrhosis is still there and it ain't going anywhere.
As regards knowing where your liver is at, normally by this stage it's symptoms that determine that - multiscan can reveal in glorious technicolour which bits of the liver are still getting blood flow and working but really it's only likely to confirm you have cirrhosis.
I'd save yourself the money and just get on with living your best life, have the routine tests that are usual in monitoring ongoing cirrhosis and carry on with life.
They've obviously plumped for some sort of auto immune diagnosis previously with the prescription of azathioprine. In my hubbies case he has the 'rogue antibodies' for auto immune liver disease but biopsy didn't reveal ongoing auto immune issues. In his case they have classed it auto immune cirrhosis and he is only on 5mg daily prednisolone to deal with any quiet flares in the back ground because he was never symptomatic of liver disease right up to ending up in hospital with a life threatening variceal bleed in April 2012. A second biopsy in 2014 also revealed no further inflammation so they've said 'burned out AIH'. Scans wouldn't give any further answers in his case.
Hi Katy, I appreciate your detailed response and pragmatic view. During a horrible colonoscopy procedure, mild colitis was detected, this was after I was prescribed 125mg of Azathioprine. My visit last week was primarily handled by a registrar who was interested in this and also suggested Crohns. He's given me a poop pot to hand into the GP Surgery this week. I must admit, I'm not looking forward to handing a poop sample to an unsuspecting receptionist. My main concern is the continued low platelet count and bruising I'm getting which are side effects of the medication. There are alternatives available but understanding why I have what I have is a first step.
Low platelets and bruising could be more to do with the spleen gobbling your platelets - a common side effect of portal hypertension due to cirrhosis - is your spleen reported as enlarged on scans?
At one point my hubbies platelets were sitting as low as 20 and he has never been on aza - only pred. His returned to normal range after his spleen died following an embolization operation after portal hypertension caused aneurysms in his splenic artery.
Yes it is reported as enlarged. Before Azathioprine at the time of diagnosis it was 104, recently its been 72 and as low as 47. I provide blood tests to the GP every month because of the impact of Azathioprine on platelets. The GP doesn't authorise the repeat unless I have the test.
Hi. Can I ask how did all start? I mean your diagnosis "Cryptogenic Liver Cirrhosis”"? As I can see you take some Azathioprine any connection to some autoimmune factor?
Maybe multiscan can help find the reason of your condition as I undestand biopsy was not able to do.
The way you were treated by consult... Well no comment.
It all started after my father died and I had a nervous twitch on the back of my neck and some spasms. The GP took some bloods and my Bilirubin Gamma GT and Liver enzymes were all over the place. The consultant ordered a scan and a biopsy and I went through a load of tests including calling 3 litres of pee to test for Wilsons. Some grade 2 varices were detected in the oesophagus and banded (no more after 10 years of scans every 6 months) The verdict was it was cryptogenic cirrhosis of the liver. The consultant threw Azathioprine at it and it stabilized by bloods. I've been 125mg of this ever since. I just want to get some more information. My results on a blog I started during that time. doublecurveball.wordpress.c...
Thank you for your link. Well cryptogenic liver cirrhosis can be very frustrating because you cannot treat it. When you use alcohol you can stop drinking, fatty liver you can eat healthy and exercise. Here no diagnosis, no specific treatment. Although you take some immunosuppressant so maybe some auto immune issue if this helped you? As @AyrshireK described her husband also had biopsy and no AIH indications there. But this is somethings for doctors to debate.
Anyway good luck with staying at least as you are with your liver condition which you were able to be for 12 years.
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