Hello, I am not too sure where to start, so much has happened. I am a 50 year-old female. A couple of years ago, I had a pain in my abdomen on the right side and my stools became orange. The GP sent me for an ultrasound where they saw I had polyps on my gallbladder. The GP phoned me on the 31st Dec to give me the results. When I asked what could cause this she said spicy food and alcohol. The gallbladder polyps didn’t worry me but that put in my head something far scarier; cirrhosis. That made me take a good look at myself and admit I was drinking too much; binge drinking at parties, wine with dinner, wine at the weekend for decades… I also mixed very strong antibiotics when I had TB (!) with drinks and took Prozac and alcohol for a long time. All in all, that message triggered something in my mind which sent me to hell where I am still 2 years later. I believe I have cirrhosis but it has not been diagnosed.
I decided to go and see a gastroenterologist in May 2022 privately about the polyps and did not tell them about my liver worries. I had another ultrasound, normal. An MRI, normal. (Still had the polyps but nothing else diagnosed).
Still it was on my mind. Fast track to March 2023 where I saw somewhere on Google that a black toe nail (which I had and still have) could be liver disease. I decided to book a Fibroscan; 3.3kpa. Good but radiologist did say only a biopsy would be conclusive. From then on, I descended into real dispair. I consulted 1 new gastroenterologist. This time I told him the truth about why I was worried; alcoholic cirrhosis. Ct scan: normal. LFT blood test: normal. Sheer wave elastography: 3.4 KPa. But I have spider angiomas; DR only saw one very small, but I see more. Veins on my face too. And I believe my fingers showed signs of early clubbing. He did a colonoscopy and an endoscopy to rule out anything else. There was a polyp in my colon which he removed. He ordered an ELF test which was 9.16. He said that was not high but I know it is not low either! I did the test after having Covid but I can’t see that having an impact. My platelets count was very high probably because of COVID. He said that while I have symptoms seen with cirrhosis I do not have cirrhosis and he won’t do a biopsie. He dismissed me as someone with mental health issues (and did not like the fact I asked for a second opinion).
I decided to seek a second opinion with a renowned hepatologist (while consulting with the gastroenterologist). He did a Fibroscan; 3.3 kpa again. He ordered blood tests. All normal. He repeated the ELF test; 9.2.
At that point I went into a full depression. Incapable of functioning, requiring medical help. Stopped eating. Life not worth living. Read all scientific research articles I could find. Bottom line is that LFT tests are not even recommended by NICE guidelines to diagnose cirrhosis but clubbed nails and spider angiomes are highly indicative.
The hepatologist was the most caring doctor I have ever seen. He did tell me all the tests were good apart from the ELF one but even this one did not indicate cirrhosis. He won’t do a biopsy as he think that I won’t even accept that result and because it is too risky.
But why do I have Spider angiomas and the start of clubbed nails (I of course saw a dermatologist who confirmed this is the case).
I haven’t drunk anything for over 1 year. It was actually easy as I am so scared. Everyone thinks I am over the anxiety but I am not. I get red blemishes on my cheeks and new SA and just freak. My nails are awful - they have a strange reddish/pinkish tint as if blood is accumulating in some parts. But I am in limbo. My GP won’t do anything and frankly I don’t want to speak to them. I can’t see anymore specialists so I am left to wait until things get worse and it might be too late to do anything. I have started doing sporty activities and I have reduced my sugar intake (I am quite small and have always eaten quite healthily). I generally feel really well but a lot of people with cirrhosis do. And I don’t drink anymore. But deep down I know it’s not good. I think if anything I needed to share my journey. My husband is wonderful but for 6 months last year he went to hell with me. My children, my sister and my mother too. I can’t trouble them again. I have been on antidepressants for now 9 months. So I deal with this alone. Or don’t deal with it rather.
#Fibroscan # ELF
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Hi, good on you for not drinking. When you have liver disease, liquor is a poison to your liver. Great for you to take many of the tests. My ELF is 10.52 and I also have cirrhosis.
The best thing you can do is eat healthy, lean poultry(chicken breasts) EVOO, coffee black no sugar or cream. Exercise, think positive. You can overcome this. Cirrhosis is not a death sentence.
I’m in the U.S., I believe you are in Britain. In my view the best definitve test you can get is an MRE. I don’t think they have that in Britain. Fibroscan is about 70* percent accurate where MRE is over 90 % accurate.
I pray for you and wish you and wish you all the best 🙏.
Thank you for taking the time to read my message and answer me. I have not been diagnosed with cirrhosis but I do have symptoms. All the tests are negative but I think my ELF is high but the consultant says it is not. I have to have faith. I wish you all the best.
I am sorry you are going through this period of despair but you seem to have given yourself a cirrhosis diagnosis based on two very insignificant potential symptoms - the spider angioma and 'early' finger clubbing (as you describe it).
Although these can arise in liver disease they are not 100% diagnostic of a liver issue because they can and do happen in normal healthy people and in other health issues, hormone changes etc.
SPIDER ANGIOMA - The cluster of vessels is web-like, with a central spot and radiating vessels. Spider nevi (plural) can be caused by injuries, sun exposure, hormonal changes, or liver disease, but often the cause is unknown. For most people, the nevi are not a medical concern. In some cases, they cause discomfort.
FINGER CLUBBING - finger clubbing can also be found in some people with thyroid problems or other conditions such as ulcerative colitis and Crohn's disease.
You seem to have had all screening available and certainly more than many and they have ruled out advanced cirrhosis - my hubby was diagnosed based on an ultrasound (and obvious symptoms) but you've had more advanced screening with MRI and fibroscans. Clear bloods, clear scans and even your ELF score triggers no cause for concern.
ELF Score Risk of Disease Progression (Development of Cirrhosis or Liver-Related Events)
<9.80 Lower
≥9.80 — <11.30 Mida
≥11.30 Higher
As a lay person looking at all your test results I would see nothing indicative of cirrhosis at all and am in total agreement with all the medical experts you have seen who also say you do not have cirrhosis.
You probably do have a very genuine case of health anxiety which is driving you to despair and has obviously put a lot of stress and strain into family life BUT I also wonder if your symptoms and anxieties may be 'hormonal change related'.
I note in your profile you are a 50 year old young lady (as am I). Have you had any hormone tests done? I would hazard a guess that you are potentially starting to go through the change i.e. becoming peri menopausal/menopausal. Hormone changes can cause your SA and thyroid problems your clubbing and the anxiety/depression too.
You are doing brilliantly with sobriety and keep that up. Although you don't have liver disease (proven by all your tests) you do have anxiety and alcohol is a depressant drug so it's no good being on pills to treat anxiety whilst fuelling anxiety with booze. Also good is your change to a healthier diet and increased exercise.
We just need you to get on top of the anxiety, cease the worry about your healthy liver and perhaps see if there is another cause of your continued mental health issues and I wouldn't be surprised if it - along with your two symptoms of concern are all hormone related.
I hope you can get liver out of your head and move on to be the genuinely happy, healthy person that you and your family need you to he. Check whether this is age/hormone/menopause related.
Wishing you the very best of luck to conquer this.
Thank you Katie for your very thorough and thoughtful response. I have to have faith in the tests and in the consultants. The hepatologist told me that the SA and clubbed nails are not a diagnosis of cirrhosis and that none of my tests point to advanced liver disease. I am just scared that somehow it hasn’t been diagnosed and that I am slowly getting worse. But apart from not drinking, eating healthily and exercising I am not sure what else I could do. I just pray I don’t wake up one day very ill and it will be too late to do anything as I am not under the care of any DR. I have gone through the menopause already. I just don’t know if it would really cause my symptoms.
You truly do not have cirrhosis - hepatologists are experts in their field you've also had all the top tests (MRI wouldn't miss cirrhosis because cirrhosis massively changes your liver shape, texture and density). Your fibroscan is clear, your ELF test is low.
Your two symptoms (as you see them) can occur in hormonal conditions and do nothing to suggest that you have liver disease.
You are allowing this anxiety to destroy your life, you are doing everything that would be advised to 'love your liver' which is great now to address your Health Anxiety before it does you more harm.
The NHS has a good resource about Health Anxiety at:-
Thanks Katie. I am working very hard to try and be objective but my brain is hard at work putting blocks to that! When I had the MRI, I didn’t tell them I was worried about my liver. So there I am, thinking they didn’t even look at it (but I had a MRI of the abdomen and the gallbladder is very near the liver so surely they must have looked at the liver too). And I wonder if it’s early cirrhosis whether it would all be internal changes or no changes that could be seen on an image. I am mentally much better than I was last year but I wish I could just put all my worries behind once and for all.
If you are in the UK and would find it useful to talk things over, our nurse-led helpline is open Monday to Friday from 9am to 3pm on 0800 652 7330 (excluding bank holidays)
You’ve gone down that research rabbit hole and now you can’t get out! It’s just horrible but listen to the doctors who are reassuring you. Stop looking on Dr Google - it doesn’t help and can make things worse. Just for arguments sake - if the doctors said yes you’ve got cirrhosis, what would you do? The same as you’re doing now - stop drinking and try to live healthily. If it’s alcohol induced then removing the cause would turn things around.
I think Katie maybe right about the menopause. It can certainly have an impact on your mood, energy levels and mental health. I felt like I was losing it until I went on HRT. Not for everyone know. But sometimes just knowing why you feel the way you do helps.
As you’re already on antidepressants it might be worth talking to your doctor about how you feel. Sometimes doses need changing and maybe some counselling would help?
Hello there.....i would like to support what others are telling you here. Sounds like you are really struggling with anxiety around your health. Even if you were to have Cirrhosis of the liver - at this stage the best thing you or anyone could be doing is avoiding any damaging substances to your liver such as alcohol - and sounds like you are doing fantastic. Try to focus on this - as i believe it will help your anxiety. I believe your anxiety will lessen as you start to feel in control of your health - and you absolutely can control what work you give the liver to do, be kind to it.
Eat healthily, exercise and enjoy your family and friends.
Thanks Ewife. I am trying hard to concentrate on the positives. But thinking I could have cirrhosis, I struggle to put it out of my mind. I do need to listen to the consultants and hope for the best.
As someone who has suffered with extreme health anxiety all of my life ( we used to call it hypochondria) I recognise how hard it is to overcome but it can be done. You certainly don't have cirrhosis. Mine was diagnosed by a CT that I pushed my GP for as I thought I might have pancreatic cancer (which I did not have). Any abdominal CT or MRI will definitely detect cirrhosis. I think that your best course of action is counselling / clinical psychologist sessions to look at therapies such as CBT that may help you focus on things you can (and need to ) control. Anxiety is an awful and potentially life-ruining condition but there is help out there and I wish you luck. I am sure you didn't wish to cause offence but I don't think anyone in this group would agree that cirrhosis is a 'death sentence' . That narrative is something we all need to challenge and create a better understanding of liver disease and liver health.
Hi AnxiousPete, first of all thank you for pointing out my very insensitive remark. I am looking at the absolute worth scenario which I know is not even the reality of a cirrhosis diagnosis. I have edited my comment. I apologise for this insensitive remark.
And thank you for taking the time to respond to me. I am stuck in a dark tunnel. Some days I am more objective than others. But the thought I have cirrhosis is omnipresent. However, having completely removed alcohol from my life, I know I am taking the right steps for my liver health.
I thought I had cirrhosis too, after decades of daily drinking you’d imagine it would be just a matter of time, I had itchy skin, numb toes, lack of energy etc. it seemed inevitable in my mind . Turns out I had a perfectly healthy liver, and my symptoms were largely psychological. I cut back on drinking, improved my exercise (exercise is key for both phycological and physical recovery in my opinion), and feel like a new person. I still intend to improve my lifestyle even more, but it a major change for me made easier with a change in attitude. ( I know, easy to say, not so easy to do sometimes !).
You are in a high state of Anxiety. I have been there too. I was constantly checking my eyes for signs of yellow, my belly for signs of swelling. Couldn't leave my flat out of fear I was going to throw up a load of blood and die in the street. I did have a red Liver spot on my belly that is still there, some spiders on the sides of my nose that are still there.
That was in 2014. I had 4 GPs check me out, 3 sets of bloods with LFTs, 1 ultrasound,1 Fibroscan and a consultation with a Liver Dr. After the Fibroscan I finally sorted my Anxiety out, 4.2kpa. In 2017 I was brave enough to drink again, I was drinking about ~40 units a week pre 2014 and got up to about that again during Covid. Now cut down again. I'm still here 10 years after my initial scare.
I'm 48yo now, and you are 50yo. We are all going to die at some point, you are worrying yourself to death though. The extensive tests you have had are as good as they get ! You do not have Cirrhosis. Yes, Biopsy is the "gold standard", but all other tests combined make a strong case to not do one. Even then you could say that the Biopsy needle went into a healthier part of the Liver and its a false negative. Fibroscan scans are very good and cover a bigger part of the Liver than the Biopsy needle.
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Fibroscan criteria
Confused
Answers at last and amazing good news!
What is the Kpa score on a Fibroscan that indicates cirrhosis?
Liver Cirrhosis
