I was diagnosed with NAFLD a few years ago, I had a traumatic episode where I experienced an episode of cirrhosis like 'symptoms' which led to me attempting to take my own life. A series of psychotic episodes led to me being sectioned.
After a fibroscan that showed 9.8 stiffness and 240 I was told by my liver specialist to not return for 3 years. I do not receive 6 monthly scans the specialist said that my liver had stabilised and despite having an abcess on my gallbladder a few months that led to a spell in hospital I feel in good health.
I take testosterone daily as my T was low about 9.5 but it is now up to 24 and I have a good and enjoyable sex drive.
I have two points to make, firstly 'cirrhosis' does not appear to be an immediate death sentence so resist the temptation to end it all and secondly a question:
Is it normal for the symptoms of cirrhosis to come and go? Is it possible that my liver has healed itself?
I know I should ask my specialist but I have had no contact since the appointment when he told me to go away, carry on with my lifestyle changes, and not come back for 3 years.
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Iro1
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Has anyone actually confirmed Liver Cirrhosis? If they have, then is the cause known as yet? Could you be a little more explicit with what you call, "cirrhosis like symptoms" please?
Hopefully others many be able to help you if they have some more information please.
I received the results of ELF blood test of 10.5 unfortunately my GP made an appointment with a liver surgeon consultant not a liver consultant. This meant that I had to wait a number of months for clarification of what my results meant, all my other liver blood test were normal apart from raised serum ferritin. I googled the ELF score and was gobsmacked, my reaction was to embark upon a program of serious exercise, I was swimming a mile every day. At some point I began to suffer hot flushes and could feel there was something wrong with my hormones, my sex drive disappeared almost overnight, also I became mentally dis-orientated which I put down to HE, my weight fluctuated by over 6 kg as I gained water in my abdomen which then disappeared. All of this I put down to the onset of cirrhosis, the symptoms of which I had googled. I was in such an agitated state I had what I believe is known as a psychotic episode and made a very serious attempt to end my life, which was almost successful.
To cut a long story short I later made a second attempt on my life which led to a second suicide attempt and me being sectioned.
I am fully recovered from my mental issues but still cannot make sense of what happened at the time of my first suicide attempt. Did I really have those symptoms or did I imagine them because of what I had googled?
If nothing else, it does show the potential risk of using Dr Google!
It certainly looks like you have a serious case of Google-itis.
This according to Urban Dictionary is an individual who cannot help but use Google searches to come up with all the answers to every unanswered question. As you'll now realise, there are some scary sites out there, so care is needed.
This reliably explains the ELF test. You'll notice in the highlighted section it states, "An ELF Score ≥10.51 suggests advanced liver fibrosis and is an indication for referral to a specialist in hepatology."
So, we are talking about Liver Fibrosis and not Cirrhosis. We are certainly not talking about the end-stage liver disease here.
So, further investigating will need to be done as to what is causing the liver to develop fibrosis. This is normally arrived at by ruling out what it's not. So, if it's not alcohol-related they will look elsewhere. Because we are not talking about cirrhosis here, there will be no need for 6-monthly scans at this stage.
But I should point out that you might have a problem later on.
If a person was to get to a point whereby they require a liver transplant, then they will have to convince the assessment panel that they value life and that they don't harbour any suicidal thoughts. (I've been down this road myself, so all is not lost).
On the assessment panel, there will always be a psychiatric nurse or doctor who will be aware of any history of mental episodes. They have to be sure that any suicidal attempts are in the past are now behind them and that they will both respect and look after any liver that is offered to them.
Don’t give up, the liver is a very forgiving organ, even those people who get to the end-stage liver disease, will often find that their livers have stall managed to repair themselves enough to function.
Just carry on the healthy lifestyle, begin to love your liver, and more importantly love yourself. There’s nothing damaged that can’t be fixed. Above all, find a way to value life.
Thank you for your response, if I ever need a transplant I hope I can persuade that my mental episodes are over. I do want to live and I have a loving and supportive family that I want to live for
Iro1, first I'm glad you are still around man. Even if you had it, it's not a death sentence. I thought it was to be quite honest but it's not. I have compensated cirrhosis from alcohol and my KPA is 18.7. Since I quit drinking and eating right I haven't felt better aside from the occasional anxiety of having the disease. There are certain tests that need to be performed in order for the specialist to either confirm the extent of liver scarring and whether or not it has reached cirrhosis.
On a very personal note, I have struggled with depression and anxiety since I was a young kid. I was in counseling for 7 years and should have never quit. When I did quit I starting using more and more alcohol to try to fill that void I had. Covid happened and that's when things went down hill fast because I switched to liquor. Now here I am at 39 with a disease I thought only severe alcoholics get when they are old. How wrong I was. If anything this was a massive wake up call because I wasn't really living life, I was letting it pass me by. I have a much better appreciation of life now but it sucks it took a disease to get me there. Keep your chin held high, go to counseling, eat clean, and don't let alcohol take hold of you.
The liver is an amazing organ and it can repair its-self. I'm hoping mine will but only time will tell. It's a long shot but crazier stuff has happened.
And I second Richard, stay OFF GOOGLE! Google is why we both thought cirrhosis means death which is clearly not the case. There are people on here who have been living with it for a lonnnng time.
Just as the above two members have posted, please stay off Google!! Obviously, you are very fretful but none of us know what our future holds. One has to be determined and not "conjour" up anything in our minds. Our liver can rectify itself depending on the severity but even people with Cirrhosis continue to live long and fullfilling lives - I am sure you will be one of these. Our family, health and life should be the number one priority. Best wishes Iro1. x
I wish I had come across Healthunlocked when I had my original ELF test results given to me. I had no reliable source of information, my GP did not know and bless him was even apparently incapable of referring me to the correct specialism, referring me to a surgeon rather than a hepatologist, this was only sorted by the hospital out after my suicide attempt. I remember the hospital doctor saying after I had been scanned for internal damage (I had thrust a knife into my chest/abdomen) that my liver appeared normal.
What amazed me was that I had been unwell with lethargy and sinusitis for months and I had been off work before I was sent for an ELF test. My GP had sent me for lots of so called liver function tests all of which were not only normal but as my GP said 'good', the only alert was for raised serum ferritin.
These LFTs seemed to rule out my liver as the cause and gave me a false sense of security that the ELF test exploded! The ELF test seems to have some value but the liver function tests?
If anyone finds themselves in similar circumstances to mine I hope they phone the Liver Trust for help and advice.
Thank you for your response teletonetapper it is much appreciated.
I did genuinely 'mourn' my liver for a time, but then I gained acceptance of my condition and the likelihood that it is likely to shorten my life span to some degree. I regret ever letting myself become so unfit and overweight.
When I was 30 I was a 15 stone wall of muscle with 5% body fat, whatever happened to that man?.
I also regret every single drink of alcohol I have ever had. Alcohol is pure, life shortening poison, my best advice is to never get started on it.
I used to be a teacher and we had all the usual PHSE topics at school, sex, drugs, dangerous driving etc. but we never had anything about maintaining a healthy liver. I wish that PHSE would include this as we face an epidemic of obesity, diabetes and fatty liver.
Maintaining a healthy weight and exercise is the best protection against what I and potentially millions of others could be suffering from.
This liver 'thing' just creeps up on you, in my case without any warning.
Ever since I was able to ditch the anti-psychotics and the anti-depressants, life no longer feels like a monochrome sepia, no longer a water tap always set on tepid. There is colour in my life, and there is hot and cold emotions.
I can take pleasure in simple things like the day my wife noticed that my pee was no longer heavily discoloured and I noticed that my previous clay coloured stools were suddenly a deep, rich very satisfying brown.
The day I woke up and realised the crippling pains in my legs that I had put down to a deteriorating liver and that had restricted me to walking only about 50m without sitting down had disappeared overnight. Now I can walk any reasonable distance with ease and now I also take part in 5 a side 'walking' (although everyone runs!) football twice a week.
I realise that one day the changes I see and experience may not always be positive but I believe I now have the mental resilience to deal with it. I also know that maintaining my health, both physical and mental, will be a key part of any discussion about a transplant should my condition require it.
I hear about medical advances all the time, like mini 3D printed livers from your own body's stem cells that can be bolted onto a liver to improve its function as well as the new drug for treating fibrosis mentioned on here a few days ago.
I have turned from an eternal pessimist into the eternal optimist!
Thank you so much for your response. Another member who will be a true inspiration to others - remarkable. You will certainly be awarded full Grades in your exams.
😂Once again, my sincere wishes. x
Hi,
We are sorry to read what a traumatic time you have gone through.
Has a consultant actually told you that you have cirrhosis? if they have, then 6 monthly surveillance scans are blood are appropriate. If you have NAFLD then 3 year surveillance may be appropriate.
It may really help to request to have a telephone appointment with your specialist so you can clarify your stage of liver disease and provide some further info and reassurance?
When I was in put in a very secure Intensive Care mental unit I was told by the Doctor who oversaw purely physical ailments on the ward that I had cirrhosis, I think this was in response to something I had raised with a psychiatrist about my suicidal thoughts.
This is the only time that anyone has used this term in relation to my condition. My wife still thinks I imagined the whole episode! When I was treated for my gallbladder abscess (and liver abscess that also developed), I had a lot of scans including CT scans. The portal vein was 17mm I heard the radiographer say which is normal apparently. All that was noted on my record was that there was evidence of fat in my liver, which I already knew, again there was no mention of cirrhosis.
I have always felt that the sudden, precipitous decline in my testosterone from normal levels down to 9.5 with accompanying hot sweats and flushes was a definitive sign that my liver had changed irrevocably. But now I have been on replacement T I feel great and my score is up to 24 (the maximum the urologists will allow is 27), part of me wonders if my natural endogeneous production of T has improved and is leading to this high score. The reality is that I will need extra T for the rest of my life. Fortunately my prostate score is very low so this should be possible.
I agree that I really need to speak to a liver consultant about all of this, but it is just not straightforward at the moment to arrange, my GP is off ill for 3 months.
In the meantime I am enjoying life, exercising loads (but only losing a small amount of weight), finally ditched the anti-depressants and anti psychotics and loving the T surge that makes me feel like I am 29 all over again!
I would really recommend to nafld sufferers having their serum testosterone tested and if appropriate seeing an urologist, the impact of treatment can as in my case seems to lead to not only physical improvements, ability to sustain activity, sex drive etc but also mental improvements too.
Hi Iro1. Pleased to hear you are feeling well and by the sound of your reply, very positive. I was under the impression severe Cirrhosis can be confirmed by a Liver Biopsy. There are stages of Fibrosis prior to Cirrhosis. The Liver can remain stable which is known as compensated liver disease. You are doing all the correct daily activities which is brilliant. I would have thought the only person to diagnose your Liver condition would be a Senior Professional specialising in Hepatology. Please take care of yourself and loved ones. Big hugs and thoughts. x
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