22/09/22 Had my diagnosis of F4 Cirrhosis. Fibroscan of 23.6 (F4 Fibrosis = 18.6) as you all know). Ultrasound showed mild course nature (NOT enlarged liver).
So get this!!! NO OTHER SYMPTOM at all NOTHING, Had my endoscopy 07/12/22, totally clear NOTHING no varices at all. ALL Bloods perfect, Since diagnosis I've had no drink at all for 11 weeks and not a drop. Eating like an athlete, sleeping like a baby, looking and feeling fantastic.
Unrelated excruciating pain in elbows and don't know if this is related???? (please advise)
Should I be looking at mis-diagnosis here guys? I took the Healthunlocked survey and advised them that there is not enough content for people with compensated liver Cirrhosis on here SO I AM SO SORRY IF I AM SOUNDING SMUG. But in the next breath what are your thoughts?
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55spenc
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Good morning 55spence I saved your post to reply back to later today ..but as your so intrigued I shall tell you what I think.
I was diagnosed with kpa of 28.kpa ,end stage liver disease caused by alcohol.. this read was taken in 2017 so I have no idea what it was like when I was in hospital at deaths door in 2008 .
Understand I'm no Dr or hepatologist but I had no varices, I wasn't jaundice, my ultrasound scan said the same course but not enlarged or shrunken liver .
I changed my diet since that 2017 test result, bloods perfect , cap score within range , so not fatty liver as such , I haven't drank any alcohol for many years now ,and my kpa is now 12 . .. so what I'm saying is ,to have a kpa read that high there is something causing liver issues ..cirrhosis obviously in my opinion but that's only my thinking .. I've been healthy many years with no symptoms of cirrhosis other than I know I'm living with the disease .
We are all very different where readings are concerned and any symptoms etc
Hi Linda. Many thanks for your prompt reply. There is something just not right with the Diagnosis. I must say you have had some journey from being very poorly in 2008 to where you are now that's a testament to you. My Fibroscan was conducted after a normal days drinking, I had no realization of the significance it meant so carried on as normal. My stomach was like a pot bellied pig at the time and I was 98kg, I am now 76kg. My diagnosis was surreal. i.e. here's your diagnosis (letter extract;- He was seen by the liver nurse specialists earlier on in the summer and underwent a Fibroscan. This revealed that he had a median KPA of 23.8 resulting in fibrosis score of F4. As you know, this is consistent with significantly advanced fibrosis in the cirrhotic range DIAGNOSIS;-Advanced fibrosis/cirrhosis on fibroscan. . I explained to him that his liver disease is at a critical point and that any further alcohol could result in possible fatal consequences. More specifically, I explained to him that the long-term effects of advanced fibrosis/cirrhosis are a cause of this but also in the acute phase alcohol excess to this level may cause an acute alcoholic hepatitis which can be quite significant.
On examination today, there were no findings of decompensation. He was not jaundiced, did not have any ascites and there was no evidence of any encephalopathy.
Your most welcome! Why is there something not right with the diagnosis?
Reading what you have just written in regards to the findings etc from drs ,it seems to me very honest and a straight forward finding etc.. .
Even having a fibrosan after a so called normal days drinking tells you that the damage to the liver is already there .
May I ask how long you've drank alcohol for and was it high amounts etc. Any spirits or just lager ? As i wasn't a spirit drinker ,I started on just lager through most of my teens upwards, only towards the latter stage was I on cider . The smell of both actually now cause me to heave lol , which is a good thing.
May I ask, are you saying that you think these results you had are incorrect and that there is nothing wrong with your liver or that you don't have cirrhosis? .
I wished I could help in that direction but I cannot , please talk to your liver team... are you under a hepatologist team ? do you or are you waiting on any more appts as usually cirrhosis patients have 6 monthly checks to keep an eye on any changes in the liver..
What were your bloods like at the time of the fibroscan? Fibroscan on it's own isn't a sufficient tool to provide a confirmed diagnosis since any ongoing liver inflammation (hepatitis as the highlighted section mentions) can actually be picked up on fibroscan and misread as a higher than accurate reading. Fibroscan can't tell the difference between actual fibrous tissue and ongoing inflammation so if your bloods were elevated at the time of your scan then your kPa figure could be ever so slightly elevated too.
That being said you mention that your ultrasound also showed course echotexture which shows the liver has changed in density and shape. Like Millie09 says my hubby who has cirrhosis doesn't have an enlarged liver but indeed a small and shrunken one.
It sounds like you are on the cusp of full on cirrhosis if not quite there yet so you should be monitored and treated as though you do have cirrhosis and indeed you should treat yourself as though you have it so as to avoid worsening the condition and give your liver some chance of recovery.
Hi, Don't know what bloods were like at the time, however the day of diagnosis they were within range. Liver was normal apart from the description. So you don't think I have full on cirrhosis? Had my endoscopy last week and took a biopsy, it was a biopsy of a small area of inflammation and it was a negative result, so the inflammation in nearly all but gone it seems. I am treating it as I have full blown cirrhosis, not touched a drop and no intention of doing so. Hoping I can recover somewhat.
As Katie mentioned, the fibroscan on its own is probably not sufficient to reach a formal diagnosis as it could be influenced by other factors that may lead to an increase in the results. Its a useful tool but only part of the picture.
The results of your ultrasound, when considered with the fibroscan, may be more indicative. I'm not sure if you have got the terminology quite as i normally see it, but if the US report suggested a "course echotexture" or "Course" in nature then that would suggest that there is some scarring in the liver. Being described as mild and without enlargement is though a good thing as the effects of the scarring may currently be quite minimal, again thats a good thing.
Now, that's not a reason to be complacent. Of course, there is always a possibility of a misdiagnosis. But liver disease is known as a silent disease for a reason. For lots of people they can have it, and it can worsen, without many clear symptoms appearing. Blood tests too are only a snapshot in time. Liver damage may not be constant, it may be sporadic, sometimes happening sometimes not. As a result, it can be missed in blood tests if its not in an active phase at the time or if the cause of the damage has been suspending, for example alchohol or medication.
So, by all means get a second opinion, but for me i think your tests so far would be a warning to take it easy on your poor liver. Looks like you've done a lot already to prevent further damage, so keep that up and hopefully you will remain symptom and complication free for many years to come.
Never had Fibroscan, only symptom of liver disease I had was vomiting up blood. Bloods, ct, ultrasound all ok, 2 biopsy both came back inconclusive, felt perfectly fine. Didn't believe I was ill, took several doctors to persuade me to meet the transplant team, apparently when they did my transplant I only had weeks to live. Talk to your doctors if they believe you have something wrong with your liver listen to them, avoid alcohol, eat a sensible diet and exercise.I hope you are ok but in my experience doctors are right.
Hi it sounds like you are doing well, I should think your elbows need to be looked at separately. Keep up the good work, livers have an amazing capacity to repair, but just like the time it takes to damage them it takes a long time to heal, just keep looking after your liver. I had decomp 8 years ago and now I’m compensated and my liver is holding it’s own steady course. Let me know if I can help xx
That screen capture from an old post is incorrect. Fibrosis stages run from F0 - F4 with F4 fibrosis being cirrhosis. All stages of fibrosis up to and including early cirrhosis may be reversible.
Fibrosis Stages
F0 - Normal Liver
F1 - Mild Fibrosis
F2 - Moderate Fibrosis
F3- Severe Fibrosis with bridging septa a.k.a. incomplete cirrhosis
F4 - Cirrhosis
The staging of cirrhosis detailed on that picture arn't quite correct but from what you've already written about having no ascites, no varices etc but having a cirrhosis diagnosis you are sitting in that early cirrhosis stage of Stage 1 Cirrhosis.
Stage 1 Cirrhosis - No Varices, No Ascites (compensated)
Stage 2 Cirrhosis - Varices, No Ascites (compensated)
Many folks never get told what stage they are at, they just get on and live their lives to the best they can and do all they can to prevent their condition getting worse or to improve where it can.
My hubby was stage 4 cirrhosis, decompensated and nearly died from burst varices back in 2012. Today he's in Stage 1 cirrhosis - cirrhosis isn't going to go away and he just gets on with living his best life.
hi Katie, I’ve not been told I am assuming the stage I’m at due to lack of symptoms and a good endoscopy result! Like most it was the case, there’s your diagnosis, there’s the door, now crack on!! I can only focus on my recovery! Seems feasible after the amazing progress your husband has made! BR Darren
Hey welcome. I don’t think it’s deluded at all because I’m hoping for the same. However in most cases it’s not reversible once you hit f4 unless it’s from hepatitis from my understanding. My specialist said it’s extremely unlikely mine can be reversed I had a kpa of around 18.7 from alcohol. There’s still always outliers and I hope I’m one of them. I feel great as well.
Hi outliers? Sorry for asking, thanks for your reply it’s much appreciated! .1 over for F4 diagnosis seems harsh doesn’t it! I can only see what the future brings but it won’t be for the lack of trying on my behalf!
I had a diagnosis of cirrhosis( no Fibroscan),presented with ascites(no varcies) 3 years ago. Had my first Fibroscan in September..8.8kpa. Everyone is so different. I can empathise with the lack of information and clarity tho!!
Ascites is generally caused by cirrhosis,my consultant seems to think it was the inflammation that caused the portal hypertension. My consultant wasn’t even bothered about doing a Fibroscan,I pushed for it
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