I would sooooo appreciate a response/advice/opinions....
I was recently advised by my GP (family doctor) that I have cirrhosis. This is of course terrifying...I apparently had sever fatty liver in July 2021 but I was sadly not informed of this. I would have turned it around immediately...unfortunately I was still consuming alcohol without knowing and more than I should which I am incredibly remorseful about and as soon as I found out stopped immediately so I am 6 months now with no alcohol.
I am a little confused as I have a liver stiffness of 9.0 kPa (Elastology in Canada and called Fibroscan in some other place). This shows me as a Fibrosis 2 by all the charts and is supposed to be a very reliable indicator of your level of fibrosis so how can I have cirrhosis? I did present with Ascites and do show a nodular contour on my summer ultrasounds although the one I had late October does not say nodular contour nor did the elastology ultrasound...I do not think that goes away? My bloodwork all came in line within less than three weeks of stopping alcohol. My liver is also listed as fairly homogenous, is that even possible if you have cirrhosis?
My GP also says I do not have portal hypertension which is good news but something just seems wrong...to go from fatty liver (severe) to cirrhosis in 20 months? And everything I have looked up shows ascites in advanced cirrhosis which I do not think I can have with a liver stiffness of 9.0 kPa and 1.76 m/s?
Help please...any advice or thoughts are greatly appreciated!
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Confused2024
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On what basis is your family doctor saying you have cirrhosis? If like you say scan's don't indicate it and bloods are good.
Was it the presence of ascites on first presentation? - ascites can occur in alcohol related hepatitis - in fact many symptoms of very advanced cirrhosis can appear in this condition but recede when alcohol is ceased.
From the BLT page on Alcohol Related Liver Disease -
2. Alcohol-related hepatitis
This stage of alcohol-related liver disease is very serious, and about a third of heavy drinkers with alcohol-related fatty liver will start to develop it. It normally occurs after years of drinking too much. But it can develop very suddenly and severely, even after you’ve stopped drinking. It usually follows weeks and months of heavy drinking, but can happen if you drink a lot of alcohol over a shorter period of time (binge drinking). This is called acute alcohol-related hepatitis and can result in liver failure and death.
What are the next steps for you as regards treatment or monitoring? In the UK if you were told you had cirrhosis you would be referred to hospital - gastroenterology/hepatology and would receive 6 monthly scans and 6 monthly bloods. By having an expert look at your case you would get a proper and more accurate report on the state of your liver health as like you suspect you potentially don't have cirrhosis and have managed to turn around an acute episode of alcohol related hepatitis by staying off alcohol.
I don't know how it works in Canada but I would definitely be seeking a referall to get proper feedback on your liver health. If the GP has based the diagnosis purely on ascites having been present when all scans etc. reveal no cirrhosis then you want an expert to cast eyes on your case.
Obviously you need to keep up the alcohol cessation (for life now) or else your liver is likely to sustain permanent damage.
Thanks Katie - I am in Canada and waiting to get into the Hepatologist...I have also been curious about how they tell the difference as I also thought with a liver stiffness of 9.0 kPa showing me as fibrosis 2 that maybe I actually have alcohol hepatitis and no worries on me never drinking again - that is a given no matter what the outcome! I am just praying with all my heart that my family doctor is not correct. She is great but let's face it - this can be complicated stuff. I have the nodular contour as well and I think that with ascites is what led her to cirrhosis as the diagnosis.
My bloodwork came back so fast - huge drop in less than 3 weeks and then pretty much stable by mid august. I just have a hard time believing this is cirrhosis and after such a short amount of time?? The first thing she said when I went to see her with ascites was she thinks I have cirrhosis so I am not sure if my bloodwork maybe ruled out alcohol hepatitis or if she just went straight to that as the issue. She also left my for 6 weeks before having paracentesis and wanted a TIPS inserted into my abdomen which fortunately they would not do!! (I had 4.5 litres drained and knock wood have not needed it done again since with the diuretics but that seems like a dangerous thing to have left me with for that long).
My GP has not tested my AST (was 90- very high but I also had drank the night before like usual so I got an honest picture but thinking now what a bad idea that likely was), Creatinine (was 76 and that is normal is 40-100) or INR (was 1.5 but PTT was 38 seconds which is normal-she has not tested it agai either) since I stopped drinking but the other enzymes are ok with the exception of GGT which I cannot seem to hit the mark on:
ALT
Platelets are 137 ( a little low as they should be 140 and up)
CRP 1.9 mg/L (range is <8)
Bilirubin 14 umol/L (range is less than 20)
ALP - hovers around 120 (range is 120 or less - it has gone as low as 107 in Oct)
Ferritin 112 ug/L (should be 20 to 300 so this is fantastic)
GGT - 98 should be less than 50
ALT 33 U/L (shoudl be less than 40)
Albumin 39 g/L - this is fantastic!! (30-45 is the range)
Platelets are 137 - Minor divergence. Call it normal.
CRP 1.9 mg/L (range is <8) - Normal
Bilirubin 14 umol/L (range is less than 20) - Normal
ALP - hovers around 120 (range is 120 or less) - Normal
Ferritin 112 ug/L (should be 20 to 300 so this is fantastic) - Normal
GGT - 98 should be less than 50 - Not Normal but GGT it not specific to liver issues.
ALT 33 U/L (shoudl be less than 40) - Normal
Albumin 39 g/L - Normal
AFP is 3 ug/L and should be less than 9 - Normal
Why don't you just relax and go to sleep and live your life, you seem to me to be fine from these results? Of course I am NOT a doctor so feel free to ignore me.
I'm sure Confused2024 would love to relax but cannot do that just yet as her GP told her she has Cirrhosis.
Confused2024, please get back to your GP and question that diagnosis very assertively. With those blood results this does not add up and you surely have the right not to be stressed to high heaven by this confusing situation.
Good luck. Would be interested to hear the outcome which hopefully will be very reassuring.
Good catch, I had missed that the GP gave a cirrhosis diagnosis, in that case of course anyone would be scared, sorry that I missed that, my bad. That having been said, as you say, it just doesn't add up and look at the comment below (from Tommy 62). Something is not adding up. Perhaps someone mispoke or misheard something? Maybe the doctor said something like "this could turn into cirrhosis in a decade" and was misheard or misunderstood? I am just guessing here.
Thank you Castal! I sure hope it is a good outcome too...for all of us on here!
Is it the normal thing for someone with such advanced liver disease to have their bloodwork go back to normal numbers like this so quickly???...mine dropped more than half in the three weeks and then as I mentioned by August were stable and I quite drinking Jul 4th 2023.
I am on the waitlist for the hepatologist but I am hoping that my next scan things look better and better so I am trying my hardest to remove the label and accept that I have most definitely damaged my liver (ascites) and maybe the nodular contour is from the severe fatty liver - that is a stretch I know. Like I mentioned my bloodwork has come in line so quickly I think perhaps I have a chance at turning whatever they want to call this around and am exercising, staying wayyyyyyy away from alcohol and eating as clean as I can. I drank to much obviously but I really do not think I drank enough to go from fatty liver to cirrhosis in 20 months of all things! I got carried away through COVID and then had to work from home until late 2022 and so cocktail hour got a little earlier and BAM here I am. I still worked as a professional, was a top performer throughout and have ran alot of kilometres including half marathons.
Interesting - the very thing that led me here is the only thing that ever gave me solace...albeit a fake sense of solace...and now I just have to deal with things and not escape.
on my last ultrasound of my abdomen (in Canada we do one and then the elastology ultrasound separately as it is just the liver)...they did not use the term "nodular contour"...I don;t think that can go away so I am wondering if perhaps it was fatty liver - ALOT - that came across as nodules? Sorry this will look long but I will put the impression from the last ultrasound and elastology to give you guys a better idea of what the doctor is seeing so based on your experiences you might have thoughts?
Here is the Elastology - now one more point - the GP was kind enough to put that it was NAFLD which is very nice however then the stiffness reading is out of whack a little because they have a lower threshold...a 9,0 kPa for NAFLD would be more serious than for me:
FINDINGS
Liver: Hyperechoic liver fairly homogeneous, although there is mild contour irregularity at the subcapsular areas of the liver which could be in keeping with underlying chronic hepatopathy such as early cirrhotic/fibrotic change. Measures 15.3 cm in sagittal dimension. Normal echogenicity.
Median Elasticity: 9.0 kPa
IQR/Median: 13%
Median Speed: 1.73 m/s
IMPRESSION:
Hyperechoic liver in keeping with steatosis, although there is minimal irregularity of the liver contours today and as seen on the previous study dated October 30, 2023. Allowing for this, underlying early cirrhotic change would not be excluded
Here was what the last radiologist put in his impression - abdomen ultrasound:
Liver: Measures 16.0 cm in sagittal dimension. Heterogeneous with mild increased echogenicity and irregular contour in keeping with cirrhosis. Normal hepatopetal flow within the portal vein with a PSV of 25 cm/s and TAPV of 23 cm/s. Normal directional flow within the hepatic veins and splenic vein
IMPRESSION
1. Cirrhotic hepatic morphology. No focal hepatic lesion.
2. Small volume ascites throughout the abdomen and pelvis
I already commented on another post. Your bloodwork results are somewhat similar to mine/past and present.
INR of 1.5 is high. I’d see a specialist so they can monitor that. My INR was 1.3 when I was ill. It has since gone down to 1.0. My platelets were higher too (were normal!😳) when I was ill, and have since stabilized around 130’s-140’s. Also slightly nodular, mildly heterogeneous etc… I had ascites and it has been gone for a year now.
I was unsure and still am not convinced whether mine was alcoholic hepatitis or cirrhosis but it’s a moot point for now until it improves enough to prove otherwise.
The action plan will be the same either way so it’s your call. I am seeing a specialist and treating it as worst case scenario (mild cirrhosis) with hopes that it will shake out proving to be reversed hepatitis/mild cirrhosis. It will be fine no matter what. Time is on your side for improvement. 😀
Greengal314 I agree - they can call it whatever they want I suppose - time and new scans will tell the tale which I hope is a great one...2023 was not my year but I am hoping that turns around in 2024!!
Thanks Tommy62 - see my reply above - I totally agree! Did you have an ultrasound that showed any abnormalities to your liver? Nodular contour etc...ascites? What prompted them to check your liver stiffness?
That was was 2018 when I got the fibroscan done but didn't tell me the result till 2020 that I was 19.5 I get ultrasound every 6 months I got it because I had backache and liver function was high over 900 I still drank but eventually stopped for 10 months and got liver function down to 76 but unfortunately I have relapsed many times but all my blood work has been within normal range got full blood count 3 months ago all in normal range when I get an ultrasound I've always excise gas so get sent for a ct scan that's what I'm waiting on now so when I had the ct scan in 2018 but didn't get results till 2020 I was drinking full for 2 years not knowing where maybe I could have reversed it but hopefully your fine and can get the all clear goodluck 👍
Have they not done another fibroscan since then? What liver function do you mean..which blood test? I am glad to hear you have stopped drinking - do they still say you are borderline? Good luck on your CT!
They don't tell me anything in fact very little I have always had to chase results up waiting months at a time no I have only ever had the 1 fibroscan since 2018 probably I'm guessing because all my blood work has been satisfactory
Ultrasounds and Fibroscans are useful. But in diagnosing cirrhosis, neither is accurate enough. Fibroscans in particular can vary quite a lot depending on the skill of the operator. You could gave a Fibroscan taken on the same day by two different operators and the results from one might come out normal/mild fibrosis and the results from the other could come out F4/cirrhosis.
One way the designers of the Fibroscan technology (Echosens in France) try to correct for this is with a measure of the variability between the scans. If there are 20 readings taken and they vary wildly, the the IQR/median number will be high. But this doesn't fix the variability problem enough to make the test reliable enough to justify changes in treatment protocol, for many heptologists. For that, you need either a biopsy or a Magnetic Resonance Elastography. Academic studies have found that the MRE is about 98.5 to 99% accurate, which is even better than a biopsy because the biopsy just samples a small part of the liver whereas the MRE is a scan of your entire liver.
Anyway, about your tests, I would pay attention to the abnormal results. The ultrasound tech noted an irregular, nodular surface. You also had ascites. Having normal ALT, AST and GGT will not rule out cirrhosis because even after all the inflammation is gone, the scarring can still be there. I also would pay attention to the fact that you have below normal platelets (though only slightly) and are on the low end of normal albumin. Your liver is not functioning at the midrange of normal (say 200 or so platelets and 43 to 45 albumin). Better to proceed in a super conservative way for now, assuming that you have cirrhosis until a test such as the MRE proves otherwise.
Happy to see that your fluid flow through your portal vein is normal!
If you want to help your liver, then do everything you can to lighten its load. You should avoid getting constipated. Try to eat more plants, and fibrous fruit such as apples. Search this site for posts by people who have reversed the fibrosis in their livers. You'll see that many of them eat plenty of vegetables and fruit, maybe adding in a bit of fish and eggs if you're having nutritional deficiencies. It also will help to keep walking, stay active, avoid stress and stay as positive about your life as you can. A long journey this is. You will get through it in fine fashion!
Thanks for your response...my "fibroscan" was actually MRE in Canada..my IQR was 13% so that shows as pretty reliable so hoping my 9.0 kPa and 1.73 m/s is correct and goes down again net time!! In Canada albumin is 45 at the highest so a 39 is pretty decent! I will plug along and do my best...the anxiety is the worst
The kpa reading is apples and oranges depending on whether it is Fibroscan or MRE. If the MRE is 9 kpa, then that is equivalent to a 27 kpa using Fibroscan. The MRE's kpa is calculated differently than the Fibroscan's kpa. Check with the doctor to be sure about how to read your kpa from an MRE. They should have broken it down for you!
ahhh ok - they show me as Fibrosis 2 on the Ultrasound Elastology I had - my mistake maybe that is not the same as an MRE...but the 9.0 kPa is a confirmed number but yes I will ask!
I have confirmed cirrhosis. My diagnosis was in March 2021 and was caused by alcohol. My bloods were deranged, I was a shade of yellow that Homer Simpson would have been proud of and had moderate ascites. My scan showed irregular contour consistent with chronic liver disease. My endoscopy showed two small grade 1 varices. I was diagnosed when seriously unwell with acute on chronic liver failure which had been triggered by a deeply rooted infection. I was lucky to get out of hospital alive. I stopped drinking the day I was admitted. I also took my health seriously for once and followed all the clinical advice and adhered to a dietician recommended diet. I’ve been followed up by a hepatologist, initially 3 monthly and then when things had settled down 6 monthly. My bloods are all normal. My platelets hover around the 180 to low 200s. All my liver function tests are normal. My GGT can sometimes get a bit elevated….normally after Xmas when my diet has been a bit rich. It’s a very sensitive test and my consultant puts it down to too many mince pies and turkey. It always returns to normal in the summer. My latest endoscopy showed that my two varices had packed up and gone home! So I’m now completely clear of anything from an endoscopic perspective. This all belies that my ultrasound still shows cirrhosis. I feel amazingly well - better than I have felt in years. Which given I’ve made a lot of lifestyle alterations isn’t surprising I suppose. I always ask my consultant if my diagnosis is correct…he’s always adamant that it is. He then reminds me that I should continue to feel like this as I’ve stopped damaging my liver further…it’s now stable because I've been abstinent for nearly 3 years. I’m so used to my diet and my alcohol free lifestyle now that I can’t ever imagine returning to old ways…Even if my consultant is wrong (and there have been examples of folk on here who have reversed things because it’s tricky at initial diagnosis when there is so much else going on, as it was for me, to know if it was inflammation or cirrhosis that was causing the deranged bloods, ascites and minor varices) the treatment for alcohol related cirrhosis(no alcohol, correct diet, exercise) is now my way of life. So in some ways it doesn’t matter.
I love your story and I also feel so much better but I find my anxiety very high! The exercise helps a lot and I try to add yoga and mediation. I hear what you are saying but I would still want to know if I was fortunate enough to reverse it. Do you know your liver stiffness?
I’ve never had a fibroscan. My diagnosis was through ultrasound plus clinical judgement. My subsequent ultrasounds have all shown liver changes consistent with cirrhosis. My consultant has been around the block so I’m sure that he’s not wrong. He describes cirrhosis like a scar on your skin. It is deep and noticeable when first damaged but over time the scar fades. It’s still there but it isn’t something that is quite as obvious. My liver is damaged but I’ve stopped it getting more damaged by the actions I’ve taken. If I’m absolutely honest, it’s only when I get my follow up with my consultant that I even think about it these days. That wasn’t true at the start when I was very worried about it. I’ve become less and less anxious as the years have gone on. I used to ask about life expectancy a lot (I wish I’d done that when I was putting away 100+ units per week!) but the fact is no one can be sure for certain. As my consultant told me…even if I didn’t have cirrhosis then he wouldn’t be able to tell me how long I was going to live because no one knows what’s around the corner. He can be certain that being abstinent, exercising and eating my now very well attuned diet will all maintain my well-being. So that’s what I do. Beyond that…as long as I feel well (which I do), then I’m not too bothered about what numbers show up on a fibroscan.
Right!???? If I did not have ascites I don’t think I would have been diagnosed with cirrhosis but I do t think it’s possible to have it in fibrosis without cirrhosis…the one thing I have learned though is that with li we disease anything is possible!!
And…if I had ascites from Cirrhosis that would put me at stage 3 and I would think a much higher stiffness? And…I haven’t felt sick even a little bit or had any other symptoms
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