My consultant said my cirrhosis is due to alcohol. I was a very occasional drinker until recently. I started having a glass of wine with my meal at weekends or when dining with friends. This led to a glass every evening with my meal, then half a bottle each time. Eventually I ended up on a bottle of wine every evening with dinner. Rarely drunk any alcohol other than this and didn't drink during the day, unless out for lunch. The increase was over a period of about three years.
My point is, over the last month I have seen a nurse practitioner and a GP. When telling them I had cirrhosis and how much I'd been drinking they were both very surprised when I said it was alcohol related.
How does a consultant know what the cause is. Genuine question.
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eileenet49
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They probably can't tell whether it was fully alcohol caused or non alcohol fatty liver related - in both the liver has to go through a period of fatty change and liver inflammation to reach the fibrosis/cirrhosis stage. As a more mature lady on a bottle of wine per night you obviously have had a high intake - much higher than the recommended so called safe limit so it's likely your liver damage has been a combination of factors including the alcohol so if alcohol played any role in the damage at all they will say that it's alcohol related.
I presume that pre-2014 when they first started offering those with ARLD liver transplants (initially as a trial) the distinction between alcohol and non-alcohol related liver disease I can imagine would mean the possibility of being offered a transplant and being told there is no treatment. If it is difficult distinguishing between NAFLD and ARLD the pressure on consultants to diagnose the former must have been immense considering the implications for the patient. I thank God that I was diagnosed a couple of years ago so transplant is an option should it come to that. I can't imagine being told that they can't do anything for you
It was never the case that people who had alcohol related liver disease wouldn't be transplanted (indeed the most publicised ARLD liver transplant was George Best in 2002 plus ex- Scotland and Rangers Jim Baxter was transplanted twice in 1994). When my hubby was listed in 2014 (100% non-alcohol related) the figures for the previous year showed that the highest percentage of transplants took place due to alcohol related liver disease.
As regards your question on not lasting the 6 months the guidance for liver transplantation assessment in relation to alcohol related liver disease has changed and now state "Thus, there is no absolute rule governing the periodof abstinence, other than patients must be abstinent atthe time of referral."
The full text of this section of the guidelines is here:-
Considerations in patients with alcohol and drug-use disorders
Alcohol
Best practice suggests that patients benefit from early referral to, and engagement with, local addiction services. Repeated non-adherence with documented advice to abstain from alcohol is an absolute contraindication to LT, so all discussions regarding the requirement for lifelong abstinence must be documented and the patient informed of the implication.
The UK Liver Advisory Group16 and National Institute for Health and Clinical Care Excellence (NICE)17 have recently updated the policies relating to referral of alcohol related liver disease (ArLD) patients for consideration of LT.
Patients:
► Who are alcohol dependent and continue drinking (even at reduced levels) should not be referred. Referral to alcohol services and engagement is mandatory.
► Who, after 3 months of validated abstinence, still have an indication for liver transplant, should be referred.
Validation of abstinence includes random blood alcohol levels, alcohol metabolite testing and support from addiction services.
► Who are abstinent for <3 months, and positively engaged with addiction services, can be referred if there are issues (nutrition, frailty, etc) that might complicate the assessment, or death from liver disease may occur within 3 months.
Thus, there is no absolute rule governing the period of abstinence, other than patients must be abstinent at the time of referral.
A pragmatic approach is to advise all patients with a failing liver due to alcohol, to become abstinent and engage with addiction services. If there is no immediate indication for referral for LT (as outlined in NICE guidance) then wait for 3 months to observe and if no improvement occurs, refer for LT.
If, at 3 months, there is evidence of ongoing liver recovery, then a further 3-month deferment may optimise liver recovery, and also test the patient’s commitment to abstinence. At 6months ofabstinence, little further recovery can be expected and referral for LT is appropriate for any patient who remains in liver failure.
Hi, when it comes to transplant they make no distinction between alcoholic and non alcoholic liver disease, but if it's alcohol related you must have been alcohol free for 6 months and show them that you will never touch alcohol again. Blood tests will show them if you have been drinking.Hilary
I've provided the most up to date clinical information on transplantation in those with alcohol related liver disease in an answer to you further up the thread.
If you mention alcohol or drug use to a doctor they go straight to alcohol related for ever illness you have. I was admitted with heart problems, but because I looked terrible due to breathing issues I hadn't been able to shower for quite a few days, I also have long hair and a beard. I had fluid build up due to heart failure but when i was in hospital they asked me about alcohol, I told them I still have a drink and in my past I was a naughty boy, didn't lie, no point. They gave me valium for withdrawl without my permission(I don't drink near enough to suffer with that) did a US scan and put me in hepotolgy with decompensated cirrhosis. It was a heart issue in the end that I'm now on meds for. Still told I have Cirrhosis fair enough but my bloods are normal, the flow through the liver is normal, i've never had any symptoms of cirrhosis. Don't tell them you drink is the simple answer let them do a proper set of tests unless you're a raging alcoholic that is.
It did feel a bit like that. Although I didn't get any sense of disapproval, in fact the consultant told me that his case load for alcohol related liver disease had increased by 200% during the lock down period.What I was a bit put out about is the letter he wrote to my GP where he said that I had always been a heavy social drinker which is absolutely not true. I didn't tell him that, in fact my drinking has occurred over the last three years.
He said that if I stop drinking I will lose some weight. I did tell him that I'd always struggled with weight, so maybe he mixed that up, doesn't instil a lot of confidence though. I have stopped drinking though, didn't find it to much of a struggle as it was only ever with my meal in the evening.
Anyway, I stopped drinking and, if anything, my weight has increased. I also seem to be having a bigger problem with fluid retention, I have been on medication for this for about 15 years.
How does a consultant know what the cause is. Genuine question.
There is a test many use. Insert your numbers in this calculator to see if it's alcohol or not alcohol related.
The test is done at the Mayo Clinic, which is world renowned for transplantation and especially research. Please note I have absolutely no connection to them nor am I a doctor, but this is a widely used test by many doctors, at least in my experience. Of course perhaps your doctors are using a different method, how are we to know?
Please note that your issues could be non-alcoholic related but not fatty either, like AIH or HepC or something too. Always consult with a doctor about your situation.
Thank you. I have had a quick look at it but I can't see where to find the numbers it asks for. I'm fine accessing test results from the GP but my full blood tests were done by the hospital and I've never seen the results. I'll see if I can get access to them, just out of interest.
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