Love your liver roadshow

[Liberty82]

Hi everyone, I live in Ireland but I am considering travelling to the north of England next week to the love your liver roadshow to have a fibroscan done. I have real concerns even though my blood work has always been within the normal range. I will be requesting an ultrasound through my GP when I see him tomorrow but I'm unsure of how far I'll get as they usually go off blood work. I would even be happy to go private for a fibroscan but I'm unsure of costs and the length of time it would take. In the past year my symptoms started. All of a sudden my periods which have always been regular to the day (I'm 36 but have had my hormones checked and I'm not in the period menopause) became irregular. Pain in front right side under my ribs and my back where the liver would be. My other symptoms is he one that scares me the most is the sweating. It's almost feverish at times going from boiling hot to freezing cold, usually during the night, it's horrible and keeps me awake. I drank 2 pints of beer last week and the pain and sweating the next day was worse than ever. I have also had a reflux cough which causes no heartburn but has me coughing up phelgm every morning. It came out of nowhere after i drank heavily 3 nights in a row on holiday back in June. I feel its to do with my lower esophageal sphincter becoming relaxed when I lie down. Could this be caused by varices? I did read somewhere that varices could cause lower esophageal sphincter motility problems. Has anyone else experienced this kind of thing? I have decided to quit drinking as even though I don't drink often any more when I do its very heavy. I was also a very heavy drinker in my 20s. I drank most nights - heavily. I also had some paracetomal overdoses in my late teens and early 20s. On 2 occassions i didnt even go to hospital and on the 3rd I did. Its just as well as i was there for a week and id have died otherwise. No-one explained that this could have caused me long term damage. I thought id been saved and my liver was fine. There needs to me much more awareness to teenagers about overdosing. I dont think they understand the implications. They are seen by mental health and then sent home. Nothing has changed in 20 years as my friends 17 year old daughter took a paracetomol overdose just there at the weekend. Thankfully she was fine but there desperately needs to be more awareness on this subject as 52% of liver transplants in Ireland are paracetomal related.

Sorry, I went off track. Anyone else been to the roadshow? Would it be worth the trip?For me it would be some peace of mind that whatever damage I have done could be reversible, and even if it's not at least it would get my GP to spring into action. I was also going to bring my sister in law who is a nightly drinker in her late 20s. She has no symptoms execpt some upper right quadrant pain but I do feel with liver disease there are little or no symptoms until it's too late. It's very sad. Thanks

[Hidden]

Hi,

I think we had a chat about this on the helpline earlier? Based on the information you provided we would suggest trying to see your GP again and discuss requesting investigations such as an ultrasound scan and possibly a gastroscopy on the NHS.

The LYL roadshow is for awareness of liver disease and should not be used as a diagnostic tool.

In this regard, we would suggest you may have a few medical issues going on and it may therefore be a good idea for your GP to organise tests within a hospital setting, and ensure you are under the care of a consultant who can manage your conditions appropriately.

Warm wishes

Trust1

[Liberty82 in reply to Hidden]

Thanks trust1. You were very helpful and informative earlier today. I'm still considering the trip even though I don't expect a full diagnosis I would just like some idea as it's all I think about at the moment. I'm also concerned about my sister in laws drinking. She drinks very heavily, just like in did and she's also had some paracetomal overdoses. I love her like a sister and she is the type to bury her head in the sand, I'd guess this would flag up something and I'd hate for her to end up in the same position I have. Id be hoping that this would be the kick in the bum she needed to quit, or certainly cut down. Would we be told anything at all or would they just say we are referring you to your gp for further testing? I will certainly push for an ultrasound when I see my gp tomorrow but it's all the waiting and at the moment it's having a very negative impact on my life. I'm really scared but I rather just know. I know something is wrong, I would just hope that the damage is reversible and if it's not the sooner I know the better . I think the word reversible can be misleading when it comes to the liver. I know it regenerates itself but it's not like you can just keep on reversing all the damage, it must have some effect. I think I believed that every hit my poor liver took I'd stop drinking for a few weeks and it would be back to new. I will absolutely make sure I'm referred for an ultrasound, the fibroscan was just to help me build a bigger picture. I haven't booked anything yet. I would have been interested to see if anyone on here attended. Thanks for all your help trust1. The british liver trust has given me plenty of help and support this past week and it's very much appreciated x

[Hidden in reply to Liberty82]

Hi again,

Thank you for your reply.

You are most welcome to attend one of our days as long as you do appreciate it is not a diagnostic tool.

If you have a FibroScan at one of our events and there is an indication of possible liver stiffness, then following the scan you would have a discussion with a health professional present on the day, given a letter of explanation and be recommended to visit your GP. Emphasis is then on the individual to discuss the result with their own doctors, who can then refer on for further investigation and tests.

We look forward to seeing you there and thank you for your support

Warm wishes

Trust1 ( Rebecca)

[Dougz50]

I went to Newcastle, had fibroscan...got there early...gave me peace of mind. Private Scan is around £400.

[Liberty82 in reply to Dougz50]

Thanks trust1 and dougz. I saw my GP toda who told me to stop worrying about cirrosis. That I don't have it. He believes it's gallstone related but I'm still not convinced. You know your own body. Thankfully he has referred me for an ultrasound so I was glad of that. I still think I'll go to the road show next week any more peace of mind I can get I'll take. If it's not cirrosis it's certainly a huge wake up call. But I won't be truly convinced until more investigations are done. Thanks again for your help x

[Liberty82 in reply to Liberty82]

How early would we need to get there? Would 11 pm OK? Just we are travelling down from Manchester x

[Hidden in reply to Liberty82]

We would advise to get there at the start of the event if you want a scan, it will be busy. Full details are on the website

[Liberty82 in reply to Hidden]

Thanks. I'll book us the early train then. Thank you.

[Roy1955]

If your looking for value for money Google Royal Free hospital in London.

Then look for private liver screen

I went there recently.

The screen involves a consultation with a professor of hepatology.

Full blood tests

Heart and lung function

Ultrasound examination

Fibroscan on the basic fibroscan machine.

in addition an Ultrasound guided fibroscan on the latest machine. (rarely available as it's so new and a huge advancement on the old one)

All scans are done by a Dr specialising in the liver not a general radiologist.

Immediate results and advice after examination.

Email full report once the blood tests are done with the invitation to call or email the professor if you need anything explained.

Total cost £500

[Hidden in reply to Roy1955]

If you don't mind me asking how did you make out I've followed your posts over time did your scores improve sorry if that is too personal a question

Take care

[Roy1955 in reply to Hidden]

Not too bad, thanks for asking.

The Dr wrote that I certainly have cirrhosis but as long as I remain abstinent it should not impact on my life expectancy.

Seeing that in writing was like winning the lottery.

He did note though that I have severe NAFLD that in his oppinion is not related to my previous alcohol intake and that it will worsen and push cirrhosis forward if I do not address it. (double whammy).

Also Gallstones but leave them alone unless they cause symptoms.

He put me on a very low carb high fat

diet and I have to work towards exercising regularly.

If that does not work within 6 months he recommends going on a med called pioglitazone but that will involve having a liver biopsy before the NHS will provide it.

Fibroscan score went up to 21

the ultrasound guided one was 17.

I was hopeing for a lower score but happy that it's stable and compensated.

[Hidden in reply to Roy1955]

Roy, the "PIVENS trial" seemed to indicate Vitamin-E was at least as good as pioglitazone for NAFLD, without the weight gain associated with pioglitazone. Something you might want to ask your doc about.

[Liberty82]

Thanks Roy. I'm a lot more familiar with the north of England so travelling to London even though I've been there before is quite daunting. I'd also have to pay for flights and transport in and out of London plus hotel too. So it would be more likely to cost me the guts of a grand which I just wouldn't have have. But thanks for your advice. It's costing me around £400 for travel and hotel in Wolverhampton which is great value since I'm paying for my sister in law to come with me. I would have the scan done here privately at the RVH but my GP thinks I'm jumping the gun and has categorically told me I don't have cirrosis but until I know more I won't be convinced. However he has referred me for an ultrasound as he thinks it's likely my gallbladdder. He gave me no indication of when that would be so I'm in limbo and paying to travel to England will have been worth it regardless of outcome. Thanks again everyone for relies x