My GP rang to review my blood tests. All were normal apart from an elevated GGT. It has been elevated for a long time which is why I was referred for a Fibroscan and this scan showed Cirrhosis (17kpa). As I have mentioned previously this was alarming news as I had never drank and had a lower BMi. I’ve had 2 ,6 monthly ultrasounds in the last year which have been normal., I put the GP on the spot and said “so I definitely have cirrhosis “ He referred back to the letter from the specialist which said that the fibroscan was the most accurate and specific method of diagnosis. The results showed I had cirrhosis and I would be monitoredHe confirmed that he thought it was lean NAFLD and that I would be under specialist care with 6 monthly reviews. He also mentioned a referral for an Endoscopy to check for varices.
Since the call I rang the Endoscopy dept to chase it up and have an appointment in less than 2,weeks
I also asked the GP for referral to dietitian and he thought I might be refused (due to bmi) He was going to try though. I ended up in tears by saying I’ve led a healthy lifestyle, please help me!
I do have a very demanding, stressful job and never take time off, do not want to say anything to my employers, although I will need an afternoon off for the Endoscopy, sorry for the long rant. I’m still struggling with acceptance:
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I hope your ultrasound goes well and you get some answers. It can be a very worrying time.
When I was diagnosed I had no symptoms (apart from menopausal) just liver results that were abnormal. I have the blood test initially because I wanted to go on HRT (I’m in my early 50’s) . They said I couldn’t go on HRT with liver issues, so referred me for a fibroscan. Everyone seems to have different experiences from the posts I’ve read with different journeys.
I hope you're getting the answers and support you need, it is a stressful journey. My journey started like yours, me requesting hrt and blood tests and ultrasound showed anomalies and a benign tumour. Since then I've had a fibroscan and was given (I think) favourable results. I'm awaiting to be seen by a consultant and am currently chasing an appointment for a diagnosis. But, I have started hrt (femostin conti) recently with a follow up blood test for March at the GP surgery. Have you asked about body identical hrt, is that an option for you? To help my "liver situation" I've changed my habits, e.g. diet, exercise, total abstention from alcohol which are helping. Keep going and stay strong, you've got this.
I work in HR. You do not need to tell your employer exactly what is going on and there is no requirement to, but any decent, reasonable, supportive employer would want to help. An Occupational Health referral could be really helpful and all you would need to initially say to your employer is "I have an ongoing condition that and would like to speak to occupational health please".
To be very honest, your post sounds very defensive; you say you are struggling with acceptance and I think that comes through. There are a hundred reasons for liver issues and "fatty liver" is not always caused by being overweight or eating a high fat diet, same as cirrhosis doesn't only happen to alcoholics. It could be an autoimmune response, a genetic condition, as a result of certain prescription medications, it can be sheer bad luck. All you can do is go to the appointments, eat well, get some gentle exercise, take any prescribed medication and avoid alcohol. You don't even need to say "cirrhosis" or "fatty liver", if people ask just say you have some issues with your liver. You don't need to go into detail.
Thank you for responding, especially with your expertise in HR, may ask to speak to Occupational Health.
I’m sorry for being defensive, and I do accept the things I can’t change, just that have questions which I know I should dismiss.
Your help has been invaluable, I will continue with the healthy diet, no medication at the moment and my daily run. I’m thankful that I can continue as normal
I know it can be difficult, but try not to overly stress. Even with cirrhosis it may be something that you can live with without too many significant issues, especially if you are relatively symptom free. The monitoring will be useful and will give you a better idea of where you stand, as will the ultrasound and endoscopy.
Unfortunately liver disease can be one of those things that's just down to bad luck or even a bit of a faulty gene somewhere. There can be some negative connertations of course, especially with the associations with some unhealthy habbits. But, in reality there's a vast number of people with liver disease that are in the same situation as yourself. Its not their fault.
You've had some good advice from Rugby mama too about Occupational Health referral. I appreciate you may be nervous about approaching your employer, but in my experience, for me it was nothing but positive and supportive. Time for tests, scans and appointments etc was never an issue. This was part of normal procedures and policies. It may be worth checking out your own companies policies on such things to see what their approach is.
You may also be covered by the equalities act too, just check out whether the criteria that applies to long term conditions matches you. If it does than you have some extra protections. You may need to declare what condition you have, you don't have to say cirrhosis, you can just say liver disease or advanced liver disease, but that's really so they know they too have certain obligations to meet. You don't have to declare it, but that may put you at a bit of a disadvantage if you later claim that you're being treated less than favourably due to your condition. You know your employer better than we do, so you'd probably just need decide what best suits you. But, for me, I'd be letting them know at least something so they at least have something on record you could claw on to later should it be necessary. It should be confidential anyway.
Your post is my exact story , I was diagnosed 6ms ago, just had my second round of checks and my liver nurse say she has no concerns with my liver I have cirrhosis (which I dispute) my fibroscan went off the scale 6mts ago ( checked by a student ) my liver nurse told me I was stage 4 , 6mts later with a strict Mediterranean diet and Weight loss , she has no concerns, it absolutely awful the way the NHS treat liver disease, my doctor hasn't a clue and just refers me to specialist, I have asked to speak to my specialist, I asked 5 time to be referred to a dietician, still waiting 6mts later for both . Don't read all the SH1T that is printed on the WWW. just stick with this site .gov.uk and nhs site. Cirrhosis is controllable, I hope in the next 6 Mt's to start revesing it. Everyone says it not possible, my answer to that is The liver is the only organ that can repair its self, you just need to give it a hand up.
Thank you so much for your reply and reassurance, it has really helped. You too have gone through a similar experience and your positive attitude is one I will take on. I’ve adopted the Mediterranean diet too, but have still made that request to see a dietitian. I’ll check on the referral in a week or do, but realise it will take months. I’m being more assertive now, I chased up an Endoscopy referral after waiting 9 months and the appointment was made for within 2 weeks (all it needed was a phone call)
Thanks again, yours and the other replies, have put me back on the straight and narrow.
Just shout up if uou need any more info ,not sure if posting my daily diet would help , Hope to join a gym this week ,on a 1on1 basis , I need putting though the mill to loose weight, my 6 meals a day had helped my liver , but have stopped loosing weight , my goal from the next 6mts is to get fitter, including loosing 2/3stone , I am also looking at fasting either 24 or 48 hrs the jury is out on this atm, ideally a dietician maybe able to advise me.
My wife had an Elevated GGT during her last hospital visit. They called it an isolated rise, as it would drop into the 30's and shoot up into the 70's and back down. But her AST/ALT/ALP all remained normal. Her Bilirubin would shoot up and down also.
Now for her, the GGT issues were due to a Drug Induced Hemolytic reaction, so the amount of Indirect Bilirubin was extremely high. It exceeded the ability to fully clear it, so was causing sludge to form in the Gallbladder which caused the GGT to bounce up and down.
In her Case, the US was normal except for enlarged liver. The Biopsy's showed a maintained architecture, with severe ballooning, the second showed the ballooning resolving.
Were am I going with this? An Isolated rise is not concerning unless there are other issues. I would ask for a repeat Fibro scan.
The body is a complex machine, and looking at one or two numbers in isolation does not give a true indication of what is going on under the hood.
If you have Cirrhosis which should be seen in the Ultrasound, you can easily lead a full normal healthy life.
I would ask to have an ME Elastography. It is the most accurate non invasive test to evaluate the liver. The fibroscan can be operator dependent. I recently had a fibroscan that indicated I was F2 and S2, my doctor was skeptical of those results. He sent me for the MR Elastography. Those results indicated I have a perfectly normal healthy liver with only 2% fat and normal stiffness with no fibrosis.
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