At my endoscopy last week,my consultant said the reason I got the ascites (once) was because of the stiffness in my liver (I understand that’s the scarring). He wasn’t really around much for me to ask him to expand on that and I try and stay away from google(🥴). So I only had the ascites once and drained,was on low dose Spiro for a few months then he took me off them. 19 months later no ascites and no medication to prevent it. So did my stiffness get unstiffer? I’ve had no Fibroscan so ‘we’ don’t know the amount of scarring I have. He said he he might do one in the distant future for academic’ purposes🤷♂️. All bloods normal,no symptoms. Any ideas? I’m just curious,obviously not complaining.
My stiffness....: At my endoscopy last... - British Liver Trust
My stiffness....
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deanw41
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When a liver is decompensated, one of the various critical jobs it can't do is produce enough albumin. Albumin is a protein and it is exclusively synthesised by liver cells.
Albumin maintains something called oncotic pressure (similar to osmotic-pressure) in our blood vessel's plasma (blood/liquid).
Basically albumin causes a 'pull on fluid' back into our capillaries. So not enough albumin means more free fluid in the abdomen, which is ascites.
Your improvement may well be because your liver is again producing enough albumin.
It is also true that ascites can be aggrevated by portal hypertension and if your liver is a little less fibrotic, then the squeeze on the portal vein may have reduced too. Both things are encouraging. This along with a liver friendly diet will hopefully keep you ascites free.
Hey Chris,amazing knowledge and thank you. That defiantly makes sense. Yes I was diagnosed with a PH and is managed with a beta blocker now. Last scan said normal flow is the right direction.(something like that).
I was trying to think of just that, but it was rather late, or, early. The point is that it's many things all going on together that have a knock on effect. I have noticed that if you start talking with knowledge about your condition, because I have always been interested in the inner workings, I have discovered, they really don't like it. For me it wasn't a revelation, it was more about confirming what I had already guessed. I would like more clarity, less vagueness, that way we all know where we are. The problem is numbers don't really mean much, because it's how you physically feel and look, that matters. If you look and feel alright, you can eat and drink normally, digesting, without problems. That for me at least is a positive. I have more blood test next month, it has been like this for over a decade now, My Diagnosis was 2020. My platelets had been slowly dropping for over a decade. Thankfully my GP is brilliant and I have had very good care, testing, scans, fibro, etc, etc. All sometimes a bit vague. But life goes on. It is limited but I just get on with it, moderation in everything, without cutting it all out, it doesn't work. Was never a drinker, for me it was food.
Hey Dean, I had slight ascites when I was first suspected of having fibrosis and they gave me that same medication in the ER. I only took it for 2 weeks and I stopped because my ascites went away. When I spoke to my specialist she said I don't need to take it anymore. It's interesting what Chris said because I do have portal hypertension. I hope no ascites means my portal hypertension isn't as bad now. Maybe these small varices will go away.
Hi Dean,
I am really surprised that he did not offer you a fibroscan, I genuinely thought that the fibroscan had replaced a biopsy as the gold standard according to Nice.
Perhaps ask again for a fibroscan, I have had two with both the stiffness measure and the degree of contamination by fat reducing and I found it really motivating,
Iro1
Yes exactly,motivation. So I can see the results from working out,building muscle. I’ve cut out sugar,my bloods are normal now. I’d like to know if my liver is improving....
I completely agree, the importance of continuing feedback from medical professionals on the functioning/condition of your liver is essential for motivation. I was just told go away for 3 years, 18 months ago. I have yet to receive an appointment for my next.
I know that my pee is super clear now when before it was always the colour of brown ale and my stools which were almost white are a rich brown and normal. So I believe things have improved , but how do you know?
Part of me thinks that most hepatologists are operating on the basis of probability not actual factual certainty. If you break a bone it is clear you have a broken bone, if you screw up your liver how does anyone really know the degree to which you have screwed it up?
Normal LFTs unless you are actually experiencing an acute liver episode seem to be always normal, ELF test has a cut off of 10.51 but why 10.51? Fibroscans seemed useful but clearly not everyone seems to be offered them.
Good clear and as frequent, as possible feedback about the liver, is what many of us seek.
I was told 'this liver condition you have, may or may not kill you, but whatever it does do will not happen in the immediate term'.
In other words you may die with it or you may die because of it, we just do not know.
Perhaps this is the most honest response many of us can expect?
Iro1
Iro1 I think you bring up very valid points. I had the brown ale urine for a few months before I ended up in the hospital and now it is clear or yellow. This would explain why so little information is given to so many of us by our specialists on this forum across multiple countries. I'm in the USA and I expected far more information from my specialist, especially since it's one of the leading liver facilities in the world. It simply was not and is not the case. To make matters even more confusing. She said my entire liver is cirrhotic when I asked, however the MRE radiology report says only part of my liver is cirrhotic and the other two sections are not.
Dean and I have been chatting back and forth on different postings and I have to say I cannot figure out for the life of me why they won't give him a fibroscan. It's inexpensive compared to an MRE.
We certainly have. I going to see what my Dr says about getting one later this year(around the two year mark). I can’t believe living in the States you don’t get top dollar treatment. It costs a fortune doesn’t it?
If you write the heptalogist a letter, my guess is that he/she will give you an appointment for a Fibroscan. If your liver is fibrotic, doctors how to know "how much" in order to assign the correct protocol. Is the fibrosis F0, is it F4? If your fibrosis is severe enough to be classed as "cirrhosis" (F4), you will follow a different protocol (ultrasounds every 6 months and endoscopy annually or perhaps bi-annually) and blood tests every several months, or even more regularly depending on whether there is inflammation. The reason your doctor will reply is that they cannot deviate from "accepted protocol" without risking malpractice, which will greatly increase their cost of doing business. So ask your doctor, politely but in writing, why you cannot receive a Fibroscan to rule out cirrhosis. You should receive an answer or a Fibroscan appointment. You can even just write the letter out in long-hand rather than typing it up but whatever you do, make a copy and make sure the letter is dated. Best of luck.
I'm not sure how it works and how valid this test is. My Gastro ordered a blood test to determine the fibrosis extent. I live on east coast. Attached is my results from Quest from last year(For your reference only). I was sober for a long time then , unfortunately I picked up drinking again in March. I'm 2 weeks sober again now 
fib result
The moderators don’t allow test pictures or any images that may be used for diagnoses because none of us are qualified. That’s a fibrosure test. I’m on the east coast as well. I have that test twice a year.
so, do you know if this test is reliable to gauge the fibrosis extent?
It’s a great start. I can tell you mine was pretty much spot on when I was officially diagnosed like 8 months later. Mine said f4 severe fibrosis.
good to know. I'm repeating this test next month. I'm sad and guilty for abusing alcohol again in last 2 months.. !I feel really sick from last 2 weeks....fingers crossed for my ultrasound tomorrow
Wishing you the best! Stay off the poison unless you want to end up like many of us. It’s not fun and will change your life forever. Many on here have it much worse than me. They are the true heroes!
And congrats on being sober. That’s awesome!
Yes I agree. Well my consultant said to me.. Dont worry,thousands of people have what you have and don’t even know it!! So make of that what you will..🤷♂️
Let them eat cake! Lol
Bring on the buffet haha
LOL, yes Dean, the costs are insane. My 3 day hospital stay was $27,000 I had to pay 4k of that. Then $400 bills from several doctors. The other clinic I had to pay 3k even though I met my max out of pocket for the year. That means I should not have had to pay that 3k. I might have to sell my lung to pay for MRI's the rest of my life.
😂
Hi iro1, I believe mostly in this chat room we are uk based where medical treatment is mostly free at the moment 😉
That's terrible.
Blimey!! Can we do a raffle to help raise funds? A sky dive perhaps..😂
You are so brave, I can't even face blood tests yet.. well done 👏
Hi Deanw41 - I would suggest asking for a fibroscan for 'morale boosting' purposes! One possible reason that the clinician has decided not to re-scan you is 'what shall they do with this information'. For instance, if you have a diagnosis of cirrhosis then it doesn't change your treatment plan. A fibroscan, although a really useful tool, is only part of the puzzle in diagnosing/assessing.Secondly, although it sounds like from your post there is no evidence of ascites currently, a fibroscan would not a useful tool if you currently had ascites.
Great to hear that you are recovering well though!
Best wishes
Trust10
deanw41 in reply to
That’s a good idea. So my question is this,how are they monitoring any potential regression of scarring? So their not interested because it doesn’t change my management. But I’m interested to see what’s going on....
Hey dean I think I can answer that. They are not monitoring regression. It seems almost all specialists have agreed in some secret meeting that cirrhosis can’t regress or reverse course unless it’s due to Hep C. Despite there being evidence to the contrary. Which is why my specialist said 99.99% chance it won’t reverse course.
A consultant said to me on my first Endoscopy,we no longer say cirrhosis is not reversible. I look at a lot of clinical studies through the world as there is evidence of regression in ALD. Anything is possible,I’m happy I’m well and my life is great. I’m just really curious,that’s all. It fascinates me.
I agree Dean. What you both brought up about being over diagnosed is an interesting concept and would make sense. They obviously don't want us to drink anymore and live healthier. For me, not drinking is easy now and I don't miss it, the limit of 2 grams daily is not easy. I know I would feel better hearing my scarring has improved and it would motivate me even more.
It's funny because I brought up some of the cases where people with cirrhosis caused by ALD were able to reverse their disease. The specialist replied, "that's why I said 99.99%." There's no doubt I have damaged my liver pretty significantly and unknowingly had cirrhosis for a while as I continued to drink. However once you take out what's causing the damage and start living healthy I believe anything is possible. Hearing of people reversing their disease caused by the same poison as mine puts fuel on that fire. I suppose time will tell.
I will say this though, I'm thankful that my specialist basically only wants me to have tests every 6 months, I don't have to take medicine and I feel great. For me those are all good signs.
in reply to deanw41
Hi Deanw41 - that would be a question for your specialist team! Some clinicians shall use fibroscan to monitor for any potential regression and some shall use clinical examination, bloods, ultrasound etc. There is no wrong decision, it is just down to your individual clinician and also varies from patient to patient. There may also be other constraints to consider right now, such as COVID restrictions and waiting lists. If you have had a diagnosis of cirrhosis at any point, then you should continue to have six monthly surveillance. The cirrhosis may have improved but the need for HCC surveillance is still there.In terms of cirrhosis improving - that is very dependant on the nature of the liver disease, at what stage the cirrhosis was diagnosed and patient characteristics. It remains very challenging to reverse cirrhosis.
Hope that helps explain it a bit?! You can phone the helpline if it would help for us to talk over the phone - 0800 652 7330.
Trust10.
Aotea2012 in reply to
It’s interesting but is more a psychological boost then? Helpful in diagnosis and staging but once done not something to repeat? I suppose it’s individual practice at the end of the day. What I’m amazed at though is the body’s ability to recover. Dean has cirrhosis but normal bloods and feeling well (as do I). I’m still unsure how that happens when the liver is damaged and suppose it’s helpful to understand whether your liver is improving. It does make you wonder sometimes if you’ve been overdiagnosed. In some ways though the treatment wouldn’t be different and the lifestyle changes are good for us anyway....so I can see why they don’t rush to do a load more tests.
Interesting you say that,as one of the nurses said on the hotline,you could of been over diagnosed. I’m happy to pay private going forward. Although I would like to have some more time with a specialist,just to chat things through. My consultant is very good,but they are very busy.
I did ask my consultant whether he thought I’d been overdiagnosed. He explained that I had ‘a lot going on’ at the time I was diagnosed. I was admitted with a deep rooted infection which had overloaded my liver. So had lots of acute symptoms and was very sick. Once they stabilised me, got the right meds into me and I stopped drinking, it all settled down. Within a fairly short period of time in hindsight I started to recover, obviously with lifestyle changes. He said you may have been overdiagnosed, but you have liver disease I’m certain of that. We’ll monitor you with bloods and do an ultrasound every six months and see what that shows up. Keep doing what your doing because you are feeling well aren’t you? Yes fine I said, he nodded and said well there you go. Go and live your life.
That’s great and go and live your life is what we do. Out of interest,what do your scan reports say about your liver? Echogenic etc..
Gosh... I’ll have to go and have a look at my discharge notes!
‘Irregular contour and diffusely echogenic. Portal vein identified and appears patent. Uncomplicated gallstone disease. Pancreatic head is normal. Spleen 12 cm, upper end of normal’. Lot of other doctor words in between but that the gist of it!
My last one says echo pattern, previously it said echogenic..!? Smooth in contour...
I know a smooth liver contour is good. The difference between echogenic and echo pattern is beyond my knowledge base! I’m just a learner...managing to do the clutch control but haven’t quite mastered the 3 point turn so to speak!
Good morningI live in Nevada and navigating the medical providers for help with non alcoholic fatty liver has been extremely depressing! I first had an ultrasound of my liver because of abnormal blood tests. Then an ultrasound that showed possible fatty liver. Went on a diet and lost 18 lbs. Then I found a liver doctor who told me it could be more than fatty liver disease. He set up a fibroscan appointment which I had completed and waited quite awhile before calling there office for results. When they called me back they said I have Cirrhosis and set up an appointment for a liver biopsy. Time went by , which seemed like forever after being told I have Cirrhosis. Then after the biopsy results were discussed I was told it was good. I was never told until months later that the fibroscan was bogus and I did not have Cirrhosis. I really wanted to give up but I have to be healthy for my children!
I’m sure others can relate to this.
Take care everyone.
God Bless,
Dayna
Hey Dayna, I'm happy to hear you don't have Cirrhosis. I'm very surprised they went with a biopsy prior to doing an MRI with Elastography. Even after having the MRE and Fibroscan my specialist will not perform the biopsy. She said it's very obvious I have cirrhosis. Later on here someone mentioned having a biopsy can create complications. I guess our livers are like our ocean floors, there's still a lot of discovering that needs to be done.
Thanks. We have had such a turnover of Doctors here in Reno that it becomes harder to navigate finding a specialist that goes the extra mile. Best to youDayna
Get a copy of the Fibroscan (both the image as well as any written summary). If it was bogus, meaning not done correctly, should you have to pay for that? No.
I have a new GI doctor who finally got a copy of the fibroscan and she spoke with her supervisor and was told to do another ultrasound since there is evidence of hepatic fibrosis. The new ultrasound showed that the liver demonstrates coarse echogenic parenchyma suggesting underlying hepatocellular disease. I will get a copy of the fibroscan from her. I did not have to pay for that scan . I was told the only device available is at that office I left. It is an onward fightThank you for taking the time to reply
Dayna
I find it is all very vague. One will say one thing, another will say something else. This causes confusion. They never actually confirm or deny anything. My Fibroscan was 39.something, level 4 and we agreed it was no great shock at all. I have endless blood test, ultras scans. No medication. Was offered a camera, down my throat, but turned it down, as I have low platelets. My NHS care in Scotland, is very good. My Liver, has probably been like this since I was born causing problems, until a decent GP finally spots the problem. I believe I have NAFLD but I am just on the border of stage 1. I have low platelets and enlarged spleen. I recently bought an air fryer oven, the amount of fat intake is very much reduced. No oils are required in these ovens. I believe people should try to enjoy life, eat normally while being care with fat and salt. I eat a lot of Bananas, Porridge, regular tiny amounts of meat and espresso decaf. I never really slept well. I remain un jabbed. I tend do be clumsy, always have been. My Muscles are going and I have lost weight naturally, although, with bad weather and bad back, a little has comeback. Best not deny the situation, accept it, don't be obsessed with it, because it will get worse perhaps over decades and although it might not kill us in 15-20 years, it will ensure a struggle, when it gets cold and energy etc. So, be aware of it and accept and adapt to it, discuss it, be open. I was never a drinker, never smoked, was always active, never did drugs, then this happens. I discovered over Christmas 0.0 Gin, zero alcohol but it wasn't really for me. I read about all the Covid symptoms, and I think yeah! I can tick 100s of them off, for past 20 years or so, Just be careful and respect, the situation and yourself.
Very well said thank you ☺️ I have an appointment on the 19th of this month to see a nephrologist about CKD3a that has been an issue since this all started. Just taking are of what is at hand.Take care of yourself!
Chronic Kidney Disease 3a (CKD) My partner, she has that. It only goes up to 5, but unlike the Liver, it can go on very slowly for decades. Although, there are other factors to take into account. But again, a lot of the time, there's little clarity one will say one thing, another something else. One will say get checked every 6 months, another will say annually. I don't think they have included my Kidney function into the on going tales of my chronic existence, but at some point they will. It all has a knock on effect eventually, leaving us Chronically ill slowly, before becoming acute. They problem is I can't live like a snail in a field of lettuce etc, so I carry on as normal, get more exercise walking, and stay active as much as possible. I just lack energy. Try to stay calm, eat and drink decent diet and rest, the less stress is best. That will help on the lead up, waiting and results. At the start I was terrified, but now, it's like, no point worrying, because if you do, you shut down and this can't happen. 'It's just another day at the office' for me. My Liver AFT/ALT went through the roof when this Covid started, wonder if it was connected? but now all normal I think. Who knows?
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