So, further to my dad’s diagnosis of cirrhosis last week, I’m still feeling slightly confused. In fact, I’m not even convinced it’s cirrhosis- but who am I to say?! I only have knowledge gained by excessive (and self destructive) googling. But somehow, I just don’t see how dad’s diagnosis can be wholly accurate.
So, just to re-cap:
- Dad is 74 and is a light to moderate drinker (12-17 units a week)
- He doesn’t take any meds except statins
- He is slim and runs 15 miles a week (and did so three weeks back).
- Dad wasn’t in pain but felt slightly ‘yukky’ - mainly if he overate. No real pain, no sickness. This feeling (dad likened it to indigestion) began 3-4 weeks ago. Other than that, he’s not tired and feels good.
- Dad was admitted to hospital while on holiday two weeks ago. His ankles, feet and abdomen had swelled considerably and pretty suddenly.
- Dad had a scan and blood tests in hospital. I have the results and know that the US scan revealed a normal looking liver - ‘smooth and without lesions’. It did however note that dad’s liver was a little enlarged. Blood tests showed raised AST, ALT and bilirubin.
- Dad was allowed home to hospital back in the UK. The ultrasound carried out here showed the same. His ascites is ‘moderate’ and he has had 5 litres drained. Tests on that fluid revealed no infection. A CT scan was performed showing no malignancies.
- The doctors visited dad and confirmed he had cirrhosis; decompensated cirrhosis but would hopefully return to being compensated by cutting out alcohol.
We were devastated by this diagnosis, as was dad. He can’t get his head round it. He says he feels well - full of energy, good appetite, no pain. How could he be so sick?
Here’s what I don’t understand. The ultrasounds didn’t show any scarring. I asked the doctor if the diagnosis was due to scarring revealed by the CT scan. I was told that the CT scan didn’t reveal scarring either, just enlargement and something to do with possible fatty areas (I forget that bit, I was focused on scarring/lesions). I asked how, if dad doesn’t have visible scarring on two ultrasounds and a CT, can he have been diagnosed with cirrhosis?! I thought that cirrhosis = scarring ? He said that sometimes a diagnosis has to be made as a process of elimination and that dad’s symptoms were indicative of cirrhosis. I continued to press that I don’t understand and the doctor (I suspect to ‘shut me up’ 😆) agreed to let dad have a Fibroscan in a few weeks. I know that the only way to definitively say it’s cirrhosis is a biopsy, which I’d rather dad not go through to be honest, unless it would make a significant difference to his treatment.
I have a few questions. Would dad feel so well with decompensated cirrhosis? He’s asking if he can go out running as soon as he’s out of hospital. Today they allowed him out for two hours and we walked quite some way to a pub where we had lunch and dad ate well and felt good.
I’m not convinced by the doctor’s diagnosis given no evidence of scarring has been seen (yet). Is it common to diagnose cirrhosis in the absence of scarring/lesions?
If you’ve managed to read all this - thank you! Any thoughts would be good to consider. I’m just a very concerned daughter who wants to ensure that my dad gets the best care and outcome he can hope for.
Uhhh. I just burned tea.
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Your dad's diagnosis is probably based primarily on the ascites. There aren't a whole lot of possibilities other than liver disease with acute and rapid onset ascites. Ascites can be associated with: some cancers, heart failure, tuberculosis, pancreatitis, and blockage of the hepatic vein. The CT should have found abdominal cancer if it was there, & I assume they've looked at his heart function.
Speaking of heart function, the statin med you mentioned have rare but serious liver issues associated with them.
From the "LiverTox" website:
All (statins) have been associated rare instances of clinically apparent acute liver injury and the frequency of reports reflects, in some part, the frequency of their use. The latency to onset variables considerably and can be more than 6 months or even several years after starting.
From their Atorvastatin page:
"Atorvastatin is also associated with frank, clinically apparent hepatic injury but this is rare, occurring in ~1:3000 to 1:5000 treated patients"
1:3000 to 1:5000 actually doesn't seem all that rare to me, but then I'm not a doctor. It may be the statin was a bad mix with wine, & his advancing age may also be a factor.
I don't want to be negative but the 1: 3000 or 1:5000 must affect some people and someone is going to be "the one" could you possibly afford to have the fibroscan done privately? I paid privately to see a consultant as I couldn't wait for the 22 week delay.
Thank you. Like you say, someone has to be that 1! I’ve mentioned statins to the doctor and he didn’t seem to have even heard of a link. He’s told dad to continue them! I’m not especially confident in this doctor and think that dad should pay to see a specialist.
Get another opinion. Not liking the sound of all this. You will feel much better. Get your list ready and go for it. Lots of hugs 🤗 💕. If you’re heart is saying something follow it. It never fails us.
Yes it’s like a drug addict needing his fix. 😂😂. I am just going to have to go to A google therapy Every time I get off google i am confused and depressed. 😮😮😮😮😱
Thank you. I agree, it sounds like cirrhosis to me but there doesn’t seem to be evidence of it on the scans.
The statin issue had been brought to my attention, so I asked dad’s doctor. He didn’t seem at all concerned and told dad to stay on it. Apparently it’s a small dose but still, it’s a dose and a consistent one at that. I’m not sure I have much faith in the doctor and think that perhaps dad needs to see a liver specialist rather than a gastroenterologist.
Doctors are loath to admit some of their meds have risks, but seek out the LiverTox website & read the detail on the specific statin your dad was/is taking (you may have to search the generic name).
I'll step out on a limb here & point out: Drug induced liver injury typically presents with the ALT enzyme being predominantly high, while with alcoholic hepatitis and alcoholic cirrhosis, the AST enzyme typically floats over the ALT enzyme level in what is known as a "De Ritis" ratio inversion.
The De Ritis ratio inversion is particularly common with alcoholic liver disease that is diagnosed in an actively (or recently) drinking patient. This indicator isn't foolproof, but is commonly enough to be considered a fairly universal sign. This might help differentiate whether your dad's disease is alcohol related or a drug induced liver injury. Important to consider if his doc wants him to keep taking the statin.
If you read the package insert for the statin he is on, under "contraindications", they typically state these meds shouldn't be taken by those with "active" liver disease. You might want to ask his doc if your dads liver disease is "active" or not.
Thank you. I’d read about this ratio and in actual fact, dad’s AST (113) is pretty much double his ALT (80) which supports the idea that it’s alcohol related. It does make me wonder if dad’s 12-17 units a week could have hurt his liver. Perhaps he can’t process it... He’s only 5’4 and of slight build. It does make you wonder if some people are more susceptible to alcohol related damage. I know he told me that he wasn’t able to go out ‘on the town’ drinking with his friends when he was young as alcohol made him so poorly. But in his retirement years he’s grown to enjoy and seemingly tolerate (or not) a couple of beers and a few glasses of wine a week.
There isn't always a hepatologist available. There were only gastros at my local hospitsl for instance. I saw a gastro for many years, before seeing a hep. at another hospital. Gastros are used to seeing all types of liver disease, but if there are other gastros available, why not ask to see one of them instead?
The fibroscan can give readings which indicate advanced liver problems, when in actual fact other things are raising the score, and actually the disease is still in the early stages. Equally well, you can get a low score and still have advanced liver disease. Fibroscan is sensitive to fat and inflammation.
A picture needs to be built up, consisting of all the info available, rather than relying on one thing.
As for the ultrasound, they can indicate cirrhosis, but not always. MRI cannot tell the difference between inflammation and scarring. So a lot may depend on whether inflammation is currently active or not.
Thank you. We aren’t too far away from a teaching hospital that has a number of liver specialists so dad is considering setting the wheels in motion to see one of those as a private patient. The care he has received has been good, but I think he is proving an unusual case for the doctors. In fact when I was there today and the doctor came to see dad he announced that dad is ‘a great mystery’!
• in reply to
As ascites can be associated with heart failure and the OP’s father has had significant peripheral oedema, I was wondering whether heart failure had been ruled out.
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Good point Osidge. Right side congestive heart failure also can contribute to "cardiac cirrhosis". Hope he's getting a proper workup for this possibility.
Thank you. Yes, he’s had various tests on his heart, including an electrocardiograph and they seem to have ruled that out. Today they are concerned about his kidneys.
Hi there, scans are just part of the bigger picture the consultants look at. I had cirrhosis and scans didn't show much. After transplant I was told that pathology had confirmed that there was some visible of cirrhosis, but all other tests confirmed for sure it was cirrhosis and end stage liver disease. Scarring is usually visible on scans, but not always, hence why the do so many tests. As you have said biopsy is the only sure way to be sure, but they usually won't do one if they feel everything else is conclusive.
By all means ask for a second opinion, or a biopsy, but don't raise your or your dad's hopes, as it will likely confirm the diagnosis.
Thinking of you both, and hope he can continue to have a healthy-ish life. De-compensated can switch to compensated with the right conditions (no alcohol, good diet, exercise etc), and many people can live that way for a number of years. Use your energy to get your dad back on his feet, and staying on his feet, because IF he goes downhill it can be a quick procession down.
Thank you. Yes, I suspect that whatever we’re dealing with is going to follow a similar line of treatment anyway - no drink, healthy low-salt diet... Dad is well and can’t understand how he can be so poorly ‘on paper’. He’s feeling positive but there so seem to be a few things which don’t quite add up. That said, I suppose all cases present differently and we just have to have faith in the doctors and their knowledge.
I'm feeling uncertain about whether or not to post this comment and need to emphasize that I know very little about liver disease. I also definitely don't want to falsely raise your hopes. But -- I was diagnosed with Stage 4 liver disease (compensated Cirrhosis) in November 2018 and I insisted on a biopsy because things didn't really seem to add up. A trans-jugular biopsy showed that in actuality, I only have Stage 0.5 liver disease. I think my case is extremely rare, and I don't know how easy it is to "insist" on a biopsy in the UK (I'm in the US). But I found the procedure relatively painless (though somewhat stressful), and it was worth it's weight in gold to understand my true Dx. I must emphasize again that I am probably the least-experienced person on this forum, so if other's advice is different than mine, by all means, follow it. However, one thing I do think I can confidently advise is to get a second opinion. That's crucial. Good thoughts to you and wishing you and your Dad all the best as your move forward.
Thank you. Wow, that must have come as a surprise, albeit a welcome one! I suppose medicine isn’t always an exact science in that our bodies are all different and react differently. The one good thing about all this is that dad is feeling great, so I hope that will continue.
Fibrosis (scarring) is not seen on ultrasounds and CTs. Compensated cirrhosis is also often not seen on these scans. When cirrhosis is seen on these scans it isnt the scarring that is seen but other characteristics only found in cirrhosis like architectural changes, surface nodularity, lobular contours, increased size to the caudate lobe etc. Cirrhosis Lesions are not always present as lesions usually are tumors or cysts which is not in all cirrhosis.and biopsy is certainly not the only way at all to find out if its cirrhosis. An ELF test can do that by blood draw very effectively. Fibroscan can as well but with his enzymes being raised the acore will most definately be higher than it should be because inflammation affects the score on fibroscans.
All that being said what isnt ever found in a an ultrasound for cirrhosis is a smooth homogeneous surface. So i agree somethings up here. No way this is decompensated cirrhosis with a scan like that. In decompensated cirrhosis the liver shrinks in size it doesnt enlarge.
Feelings of indigestion, raised liver enzymes especially billirubin, acsites, swelling legs and ankles with a clear ultrasound to me would suggest either an extrahepatic etiology or possibly a problem with the pancreas. Of course there are many other things as well but pancreas problems present very similar to liver problems. The pancreas is also very hard to see on ultrasound and can appear normal when it isnt.
Thank you. Today, upon seeing another doctor, dad was told that there’s ‘no point’ doing a Fibroscan. It all seems very confusing and if I’m really honest, I think they are totally bamboozled by dad! Today they said that ascites is usually present in liver failure, heart failure or kidney failure. Now they are very interested in his kidneys after he has passed protein in his urine consistently. The doctor said today that dad’s liver scan ‘wasn’t that bad at all’, it’s the ascites that is leading them to diagnose cirrhosis. Seems a strange way to diagnose it but obviously they know more than me (I hope)!
I’m almost wondering if dad’s liver issues are an aside to something else and they’ve simply been discovered by chance?
Docs haven’t mentioned problems with pancreas as I believe his blood tests (amylase, lipase) didn’t lead them down that path and the pancreas appeared normal in the CT scan. Strangely, although my dad’s bilirubin is 2.6, he isn’t remotely yellow and his eyes aren’t either. The doctor called my dad ‘a great mystery’ today!
You were right!! The diagnosis seemed odd to me, and if I hadn’t have read his ultrasound report myself I’d never have questioned it. Not too happy that the diagnosis of decompensated cirrhosis was given to dad whilst ever it wasn’t proven but more than that I’m relieved of course that it appears to not be the case!
Thats great news! Glad you kept at them! Have they any thoughts on what it is now?
Hi
I would definitely seek a second opinion and also a biopsy. I went private to get a diagnosis, MRI and CT , endoscopy and colonoscopy (may2016) confirmed nafld caused by meds from my DRS, my consultant then took me on NHS and I had a biopsy which confirmed I had Nash (November 2016) and he also said it was definitely caused by meds, I hardly ever had a drink and cut it out completely then. Sending all my love to you and your dad, I hope you get sorted very soon. Love and hugs Lynne xxxx
Where was Dad on holiday? Did he have blood tests to look for Hep A? If this thing was sudden onset with no previous symptoms and hasn't revealed anything on scans. Hepatitis A in developing countries is a sudden acute attack of liver ill health and sometimes it can lead to ascites and oedema. Could be worth asking the question dependent on where it was Dad was on holiday.
Thank you. Dad was in Lanzarote but had only been there two days when he noticed the sudden swelling (although perhaps in retrospect, it had been coming on slowly). He thought it might be the plane journey at first... But it soon became apparent that it was more than that.
In answer to the question ‘can you be fit and well with cirrhosis’ my answer is definitely so. I have hereditary haemachromatosis and had an event of decompensated cirrhosis when diagnosed 30 years ago. Since then I haven’t touched alcohol and have a ‘clean’ diet. I still have a liver scarred with cirrhosis (although I’m now compensated).
Thank you. Wow, you have lived with the condition a long time. It’s good to know that the liver can return to a compensated state. I hope dad’s can do this. Glad to hear you are doing so well.
I too was going to mention the ELF test with markers, but Phoenix has beaten me to it. This test is far more reliable than the basic LFT and is often used as an alternative to having a biopsy. The ELF test is still a relatively new test in the NHS, and is still being rolled out to the various local healthcare trusts. Not all hospitals may have this test available in their arsenal as yet.
Thank you. I will ask the doctor about this. Dad is wondering about going down the private route and seeing one of the doctors at the teaching hospital in Leeds. I’m guessing perhaps he could have the test there?
I really don't see any benefits in going private. I know that down in Bournemouth, when it came to finding the funding to cover the maintenance costs on their mobile liver fibroscan machine which was paid for with fantastic fundraising. They used the monies that are charge to private doctors for the use of the fixed fibroscan within the hospital to offset the maintenance costs on the mobile machine.
You have paid for these machines through national taxes, so in effect you've already paid to use them, why pay twice? Besides, the NHS has some of the finest liver specialists in the world working for them. The private route isn't always the best option.
Liver Cirrhosis is just a liver condition that can be managed perfectly well with certain life style changes. It may not get any better, but it can at least be prevented from getting any worse.
Your father should now be coming under the control of the Herpetologists at Leeds.
I wish you all the very best, and try not to worry too much. Your dad's now in the system. Just try and hang on in there and have some faith in our NHS.
Thank you. Dad isn’t in Leeds at the moment, I’m just thinking that Leeds would perhaps be the closest specialist hospital. At the moment he is under the care of a gastroenterologist, and I think dad’s case has him a little stumped. I really wish I didn’t worry like this... I should just be happy that dad feels great. I’ve never known him ill in all my life and it’s such a huge shock. The good thing to come out of this is an awareness of liver disease and liver health. There seems to be so much ‘out there’ about heart disease and cancer but very little about liver disease. The British Liver Trust website and the helpline- and indeed this forum - have been invaluable in educating me about liver disease.
I wonder if anyone can tell me just how reliable a biopsy would be ?.. I ask because in the past i,ve seen much made of the notion that a biopsy is the "gold standard" and most reliable test?. But surely a biopsy in this gentlemens liver will only show cirrhosis if it,s present in the tiny area sampled wouldn,t it, and therefore he would be none the wiser as to the original query of "How can tney say it,s cirhosis? ". Am I making any sense here lol?😂😤 "justdon,tgoogle" My heart goes out to you and your dad, i hope you get your questions answered swiftly, I am not confident that a biopsy will help, but i don,t have tbe knowledge other folk here do. You (dad) is entitled to a second opinion and I would definitely press to speak to another Doctor. Thank heavens dad has you to advicate on his behalf. As i think someone may have already mentioned If you feel the need for backup then PALS ( i think it stands for Patient advice and liason service ) are fantastic at representing patients and liasing between them and the Doctors. Pals are often found at the main Hospital entrance desk, or their number can be found online. As a coincidence last weekend my neighbour suddenly swelled up with fluid and was rushed to Hospital, in his case he had heart failure. Best wishes, stand your ground and insist on a second opinion
Thank you. The care dad has received is good but it’s frustrating that the doctors sometimes contradict each other. I genuinely think he has them stumped!
I was in hospital with alcoholic hepatitis and they took me off statins.
My discharge notes say they're 'suspended until liver function improves'
My liver function has improved but I haven't pushed to go back on them as my cholesterol is looking pretty good now (probably weight loss and a good diet). My Dr's haven't suggested I go back on them either.
Why is your Dad on them? He sounds in good shape, besides this recent episode.
Thank you. I’m not exactly sure why dad is on them. I think he has had slightly elevated blood pressure, could it be that? They seem to be dished out by doctors rather a lot and it makes you wonder if they’re always needed...
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