Hi all, this is not quite the first post from me - have tried to answer a couple of questions some while back - but could really do with some help for myself now. I've not been diagnosed with liver disease but am pretty sure I have it - weight loss, fluid retention and also - for nearly thirty years' now - basic medicines like painkillers and antibiotics - no longer work. Curiously though - apart from one LFT - alkaline phosphatase I think it was - and every so often unfortunately low white blood cells - my LFT blood tests have been normal. (I used to drink a lot a very long time ago so that would probably be the cause, esp as a small woman, but haven't touched a drop for nearly 40 years.) Thanks to Covid though and the casual way the UK government now handles the pandemic (and this in spite of the huge number of infections - over 1 million estimated to have Covid, down from around 4 million a few weeks' ago!) and my health issues I feel very unsafe out and about. As those who live in England know, hardly anyone bothers wearing a face mask, and there's no social distancing or other mitigations to protect yourself or others, which makes life very difficult. As I'm undiagnosed - have tried to get doctors to listen with no luck - I feel very exposed. And there are times I have to take risks, like now. I may have to make a shortish train journey next Monday (bank holiday) and feel far from confident about it. I'm really worried that that might put me at risk of catching Covid which if I'm right about having liver disease, could make me extremely ill or worse. (I am fully vaccinated but I know the vaccine often works less well in liver patients). I would wear an FFP3 mask but almost certainly no one else on the train will. I hope this is clear - and by the way if there is a blood test that will determine if you have cirrhosis or not - I'd love to know that too - but if not of course I'll try and explain better. I am puzzled too as to why my illness seems to have progressed in spite of such a long period of total abstinence. So many here seems to find it improves. Many thanks for any help or advice you can give and sorry for such a long post.
Travelling on public transport with li... - British Liver Trust
Travelling on public transport with liver disease
Hi Daphne, I can understand your concern about staying safe and avoiding catching Covid. I do have a diagnosis and was told to shield at the beginning of the pandemic. I’m fully vaccinated and still wear a face mask if I’m indoors in public. If I needed to travel on a train I would wear a good one and keep as far from other people as possible.
However, your doctors have not diagnosed any form of liver disease and the symptoms you’ve described could be caused by any number of conditions or none. I don’t think you should necessarily worry about having liver disease and vaccines not working at this point. Problems come quick enough in life without anticipating them.
You are being careful, you are vaccinated and if you need to make this journey then just do what you can to keep yourself safe. Worry about liver disease and vaccinations if you get a diagnosis.
Have a safe journey
Hi Readlots, thanks for getting back to me so promptly. Believe me I've been trying to get a diagnosis but GPs aren't necessarily the best at diagnosis I've found and if you can't even get them to listen it is incredibly frustrating. It is no fun every time you're in pain finding that the simple painkillers that used to work don't now, that if you get an infection antibiotics don't work either. Anyway I wish you well and hope you manage to keep safe.
I've had the opposite since developing cirrhosis, I now take a half dose of painkillers and find it lasts way longer. Your symptoms don't sound like liver disease, I would go back to your GP and tell them your symptoms and start from scratch.
Thanks for getting back to me hells456. How long have you had the illness? I had around ten years' of other symptoms - skin colour change (slightly sallow from being very white) and texture change (waxy) were the first things I noticed before the medicine thing kicked in. Plenty of other things too. The first medicine that stopped working were bet blockers (for too rapid pulse) At the same time basic painkillers, whatever dose, no longer worked, even morphine which I was given for excruciating pain (bowel surgery) did not relieve the pain at all. It's clearly connected to my metabolism and I do remember hearing about a patient with advanced cirrhosis who was taken in to hospital for treatment for septicaemia but the intravenous antibiotics didn't work. I'm pretty sure I'm right unfortunately though I'd much rather not be. I'm glad painkillers still work for you. By the way I have tried that other approach - starting from scratch -and have got nowhere.
I never take painkillers because they can potentially cause Liver or Kidney damage. I was never told to shield. I had a diagnosis in 2020. I have a Liver specialist nurse and consultants, scans and blood tests every six months. Always speak to your medical professional, GP, Consultant or Liver nurse; they are the people that have your information and knowledge to advise you. I can only tell you of my experience as somebody diagnosed with Liver cirrhosis. However, I cannot give you medical advice and neither should anyone else on this forum. Read the T&Cs
Hi there,
My husband has a diagnosis of decompensated cirrhosis, he is vaccinated.
He caught Covid from a routine hospital appointment, he did mention he felt poorly on the Friday after his appointment on the Monday, but then he complains about feeling poorly most of the time anyway so I didn’t take much notice. He did however complain of a bad headache. I didn’t think much of it to be honest, until the following Wednesday when I felt like I had a cold, and tested positive ( have to test for my job) my daughter then got my husband to test and he was also positive but a very faint line, and the following day was negative.
He described it as a mild cold, with a headache and fatigue, but again not sure if the fatigue was down to the cirrhosis or Covid.
He was absolutely terrified of catching it, but unfortunately it’s still out there, and all you can do is take precautions.
I’m sure you will be fine.
Take care x
Hi Lils2019 thanks for getting back to me. I'm very sorry to hear that your husband caught it from a hospital appointment. I think that this is the case a lot unfortunately, not that that helps. It sounds as if he - and you - fortunately escaped quite lightly - and I can understand why he was terrified. It's a horrible disease. I wish the UK's public health messaging was better. It feels like the wild west out there. Some countries manage it so much better ie Italy with its mandatory FFP2 masks on public transport - compliance good too apparently, unlike in the UK. Take care and thanks again. x
I was diagnosed at the end of 2019 in very early cirrhosis, literally 0.3 over the line in a fibroscan. My LFTs were 8x max, my bilirubin was 3x max and mildly yellow (I couldn't see it but doctor could). Platelets, sodium, vit d and b and total protein low. IgG, IgE, IgM high. My inr was fine though my platelets were low, though not dramatically low. Ultrasound also showed cirrhosis.
For symptoms, tbh I thought I had cancer. I lost over 3 stone in weight over about 4 months, but was so knackered I didn't even notice until my clothes kept falling down when I stood up. I would go days without eating because I had no appetite and again didn't notice I hadn't eaten until I got headaches and lightheaded. I was so itchy, scratching until I bled in my sleep. My muscles almost seem to melt away until I couldn't rest a remote or phone on my lap because it would fall through the thigh gap.
The worst was the exhaustion. It is hard to describe, the best I can say is that if the house was on fire, I would have to persuade myself to move, and might not have done anyway. The smaller things were a lot of cramp, especially in my feet, pins and needles in my hands, wrists and hips aching. I lost my sense of smell and finally I had big yellow lumps appear over my eyes from excess cholesterol. That's what finally seemed like a solid thing to see a doctor about and I was diagnosed within a week.
It sounds very unpleasant and I hope you are feeling better than that now and are getting treatment. I had a look at the British Liver Trust site just now and a professor was saying that there are very good tests now for cirrhosis which will show scarring - much better than LFTs which are still routinely ordered by GPs. Also I read that - and I've heard this before - one big problem is that you can have it for years with no symptoms . I think that patient experience varies so I'm sure that doesn't help with diagnosis.
My husband was similar for a year or so and was misdiagnosed twice. He is now confirmed with a rare autoimmune disease and is now finally on a liver transplant list. Autoimmunes could be something to explore with your gp
Hi, wear your mask and gel your hands. Luckily It’s doesn’t sound like you have liver disease, you can’t look at just one test. Maybe try to talk to your doctor about your anxiety, there’s lots of help out there. Good luck, deep breath
Hi maybe ask for a scan
Thank you, Belleben. Can you tell me what scan to ask for? It is frustrating when you read that there are more reliable tests for cirrhosis that will show scarring if there is any but these are not being ordered by GPs who probably don't even know about them.
Hi Cat-B, I'm not asking anyone to diagnose my condition - unless you happen to be a liver specialist. My skin colour changed from white to sallow my skin is waxy (doesn't absorb moisturiser), no painkiller works - including morphine which I was given for extreme pain just before bowel surgery - ditto antibiotics and other medicines. I could go on. GPs in my experience are rather ignorant about liver disease. That one liver function test that was positive - alkaline phosphatase - the doctor said happened rather late. She was clearly wrong about that as i'm still here. These tests are it seems a reliable indicator of liver disease - you can have normal ones and have cirrhosis. Other tests are meant to be more reliable but these do not seem to be suggested by GPs according to a professor on the British Liver Trust site so a lot of cases are being missed until it's too late for treatment.
I’m sorry if I was short, had a bad night, yes GP’s don’t do livers or kidney, they are highly specialised, it sounds like you need to get a referral to your liver team and get an ultrasound and repeat bloods. Sorry again if I was rude. Good luck and fight the disease. A high protein, no salt, no alcohol and plenty of carbohydrates are the basic things for improvement of liver health and of course fruit and vegetables to make a well balanced diet, try to walk about as much as you can.
Not at all, Cat-B. I'm so sorry you had a bad night and hope you will feel better during the day. Thanks for the advice. I'd heard to avoid salt - find that so difficult! - partly because I prefer salty to sweet foods and partly because it's so often added to foods - I do try to avoid ready meals but sometimes it is nice to not have to cook! - no alcohol, no problem, not touched or wanted to touch a drop for over 30 years, love fruit and veg and carbs so that's easy. Walking? Thanks to Covid that's really how I get around! Will try and find a sympathetic GP who will listen and refer me. It's not easy and am not happy with current surgery and the one I was thinking of trying to move to have now heard less good things about them, too. The NHS of course is under huge strain. Take care and thanks again.
Try using herbs and spices, and black pepper to replace the salt, I used to make a big amount and then put a good portion into several pots to freeze ( like chilli and rice or chicken potatoes and veg or a fish dish) and then I could just microwave them when I didn’t feel able to cook. Processed foods have been banned for 8 years now ( I tried a few crisps last week and they were so salty I couldn’t eat more than 2 lol) it’s a hard diet but your liver will appreciate all the effort. X
I admire your strength of will! I only have a very small freezer - logistics of my kitchen but I will try and adapt my cooking to cut out the salt. Have managed it at times before and I know what you mean about eating a salty food after abstinence - tastes horrible! (You can get unsalted crisps - Tyrrel's 'Naked' (shame about the picture on the front!) and Smith's do a multi pack with those little blue packets of salt in them so you can eat them salt-free). Thanks again. X
Hi for you it is you that needs to wear the face mask someone else wearing a face mask does very little to protect you the mask filters as you breathe in when you breathe out the mask comes away from your face and the bad air if any just comes out the sides
Not sure what hospital you are with my wife was at Addenbrookes and they were great are you at a liver type hospital or just going to an A&E department your GP
if you do have cirrhosis nothing you do will improve it, the scaring it causes is permanent it will never get any better only get worse and to be honest I think if you had a liver problem it would have been spotted by now your symptoms could be caused by many things I think you need a good sit down talk with you GP and push for some actual results
Dave
Hi X19Dave, thank you. I wear either an FFP2 or FFP3 which help protect others as well as me, but if you're the sole person even with a good mask on in a busy, poorly ventilated environment you're still at risk. Even if others wore more basis masks on ie public transport it would help. I remember hearing about what things were like before and after mandatory mask wearing on British Airways flights. Once mandatory mask wearing was abandoned by crew and staff, sickness shot up. ...On the cirrhosis front. I have seen posts on here where people have managed to get themselves from decompensated to compensated so while I agree that scarring is irreversible it does seem you can help to prevent it progressing. Maybe there's a certain amount of luck involved here too, I don't know. I need a good GP! (Don't we all....)
Hi, if you're fully vaccinated you should be OK but the main issue is how you really feel about things generally. I'm vulnerable being on anti-rejection meds. I'm now pretty relaxed about catching COVID but I do appreciate there's a risk. I keep away from crowds and "mask up" on public transport. But I'm not going to be a recluse and live in fear. I've actually had 5 jabs but I do keep away from large groups of people in close quarters and anyone with signs of nasty colds or coughs which are still things to be wary of.
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