Gastro Appointment

[Sophia1968]

hi everyone, I promised I would update you after my gastro appointment, there is not a lot to say really, he told me the past ct scan showed diffuse fatty liver and the ultrasound showed severe liver impairment, he then told me that the fibroscan done by them showed significant scarring, then showed me the graph showing that I was in the cirrohsis bracket, he thinks I damaged my liver without realising in my twenties when I used to binge drink, plus the weight later also was a factor…. He sent me for liver screening blood test, I can’t believe they took 8 full vials lol, he said he wanted to check for hep a and b, hiv and other conditions that could also cause damage to the liver, I asked if my fibroscan could have been higher due to my high bmi, he said possibly esp as the Iqn was 28 so not totally reliable, however although he said it could come down the last read due to weight loss, he made it sound like it would only be slightly and I would still be in the cirrhotic brackets, this upset me because I guess I keep living in hope of a miracle, my questions if my next firoscan is still 21.5 but my bloods are ok will I have cirrohsis or not. ? If my bloods come back not ok will I then be referred to hepatology? I told him my inr is 1.1 he said that’s good cos it should be under 1.5 ( I thought normal was under 1.2) also what else will be checked on the liver screen , proteins etc? I tried to find a list but I just can’t see anything anywhere listing the blood liver screening, he said once fibro scan and bloods are back he will call me back in, I guess that will be when I’ll need to really ask questions , I just can’t help feel that he knows it’s cirrohsis even without the other results , thank you for listening, I would really appreciate any help and opinions xx

[AnxiousPete]

Hi Sophia - if you check the NHS full liver panel guidance it will tell you the range of tests that will be carried out - I was shocked at how much they took first time. I know cirrhosis is a scary diagnosis as I approach my one year anniversary and also suffer severe health anxiety but during my time on here I have learned to put it into perspective. You need to push for a definitive diagnosis with CT / MRI or biopsy and then the NICE guidelines can be followed. What is important is the monitoring of the condition to remain compensated, if indeed cirrhosis is confirmed. The term scarring I think is used to describe the damage caused by fibrosis that is not reversible but can indeed be halted. If you have cirrhosis then you should have a gastroscopy to identify if varices are present that indicate portal hypertension. My consultant asks for these to be repeated annually along with an annual fibroscan but this may vary between NHS trusts. NICE guidance states 6 monthly ultrasound to monitor for HCC (cancer) which I think is positive as so many people go undiagnosed with liver cancer until it shows symptoms. I also had a dexa bone density scan. I know it is very upsetting and scary at times but I think you've done everything possible to make the lifestyle choices your liver needed and I hope all of the tests have good outcomes.

[Sophia1968 in reply to AnxiousPete]

Thank you so much Pete, for taking the time to give such a detailed reply, I could not find the liver screening on the site but I will definitely look again, I am so scared to hear the actual diagnosis, but I will push for the other tests if I do get diagnosed with cirrohsis, I just can’t get it out of my head that the dr knows it’s cirrohsis already, I just have the feeling, I really appreciate your help on here always, hope you are ok, anxiety is awful esp when it’s to do with health xx

[Sophia1968 in reply to Sophia1968]

I’m useless , I have looked but can’t even find how to look for links on the site 🙄

[AnxiousPete in reply to Sophia1968]

Thanks Sophia - I think the BLT site has information on what the various liver blood tests are and what they measure.I am good thanks. I recently had 2nd gastroscopy and my oesophagal varices have got a little bigger (between stage 1 & 2) so will need to go on a beta blocker for the portal hypertension. I also had a colonoscopy as my red cell count is low but apart from some rectal varices all is OK and no sign of bleeds anywhere. Bloods ok apart from low platelets but when I saw my Hep consultant a month ago he had no concerns and says I am well compensated. I am about to celebrate 1 year off the booze and have lost 2.5 stone more since diagnosis and over 6 stones since peak lockdown weight. I feel fitter and healthier than I have for many many years. Had my 2nd 6 monthly US scan last week so waiting with fingers crossed for results.

I hope you get some definitive snswers soon.

take care

Pete

[Sophia1968 in reply to AnxiousPete]

I’m glad you are ok Pete, they are keeping a good check on you which must help your anxiety, I kvow it’s not nice knowing the varices have got slightly bigger, but the fact that you know is good because as you say a beta blocker can be prescribed, and then you can relax knowing all is being done to help you, I kvow that helps with the anxiety, it’s when you don’t know what is going on inside and start imagining all sorts ( usually worse than what is really going on) it then causes the anxiety to really take hold …. I am so pleased to hear that you are well compensated that is excellent news how low are your platelets and red blood cells do you mind me asking, I worry about my blood cells incase I have that iron over load condition pca or something , I can’t remember the exact name, for years my red blood cells have always been higher than the cut off , I think top limit is about 485 and mine are 585 , platelets are 265 …,… wow my lovely congratulations to your first year of staying sober that is one hell of an achievement 👏👏👏 as is the amazing weight loss, you must feel so proud and rightly so, it’s these measures that not only help your liver but your anxiety as well, when you do things right you feel less scared, my anxiety has started again because I have slipped off the rails the past few weeks, not exercised as much, eaten more and put weight on, as you can imagine it had done havoc to my anxiety as I’m worried now that I habe done more damage, im trying so hard to get back on track, and I will do…. Your story is inspiring, you are so strong to have achieved all that you have, well done and keep enjoying your compensated life if we take away the fears and all the knowing of what is going on we can actually live like everyone else and enjoy life, see the check ups as a positive thing because we will be kept an eye on, there must be many in our position who do not even kvow they have bad liver damage , does that make us the lucky ones in a way, I think it probably does , thank you for replying Pete and happy future to you as well bless your heart xx

[AnxiousPete in reply to Sophia1968]

Thank you - you have been doing brilliantly and a bit of weight gain is normal at xmas time. I am sure you will get back on it as you've achieved so much already to be proud of. I will try to find my blood results and post them but I have mild anaemia and low iron and red blood cell count from memory. Take care Px

[Oscar21]

You are bound to be worried love. It’s a scary time for you but you are on the most knowledgeable liver site. I only wish I knew about this forum when I was diagnosed with cirrhosis 11 years ago. Mine was due to excess alcohol and I’ve been abstinent since.

I manage to live an ok life. Not perfect by far and to look at me, you wouldn’t guess I have liver disease. My main side effect is the fatigue and over the last 6 months I have undertaken five endoscopes with 10 varices banded.

Try not to worry and stress. What will be will be.. It’s not all doom and gloom. Listen to the Drs and attend all your appointments and fingers crossed you will be able to maintain a long future

Take care.

[Sophia1968 in reply to Oscar21]

Bless you Oscar thank you for your reassurance it really helps a stessy person like me, im glad you are living an ok life and that they are keeping a close eye on you and doing all they should to keep you safe, I will attend my appointments and who knows I may even get over my hospital phobia eventually lol, take care my lovely and thank you for your message xx

[Oldbits]

Hello Sophia, it's all so scary without knowing what you're facing but I hope the following will help. I can tell you what my hubbie was told by his hep consultant. " you will die with cirrhosis not from it" . He is now compensated. After a very bumpy time over the past 5 years ( including transplant assessment) he dealt with the reasons for his liver failure and now has almost normal blood test results but his ultra sound still shows severe scarring and cirrhosis. He was told at his last appointment in december that enough of his liver is healthy to do all the essential jobs and now has stopped all medication. He is now is just under monitoring appointments every 6 months. He is living the best life he has had for over 15 years. There are many on here who can tell you that there is a good life after a diagnosis of cirrhosis. Take care of yourself and live the best healthy life you can. Hugs 🤗

[Sophia1968 in reply to Oldbits]

Oh bless your heart, what a lovely uplifting post, reading this positivity really makes me feel better, I need to have the same mindset and lose the fear, im enjoying my life and that’s what matters isn’t it, otherwise worrying endlessley will ruin my life more than any liver disease, im so glad that your husband is living life to the full and is enjoying life more than ever, so good to read this post and to hear the heptologist speak like that as well, thank you so much my lovely for this message, it helps a lot xx

[Confused2024 in reply to Oldbits]

Oldbits what a great message, do you mind sharing what his original fibroscan was and what it is now? Also - did he have ascites as well? Did that go away/resolve?

[Oldbits in reply to Confused2024]

Hello confused... hubbie didnt have a fibroscan as his bloods showed his liver wasnt working so had an ultrasound scan as he was told this is the best way to see surface of the liver and a biopsy. Yes he had ascites, oedema and HE aswell as a UKELD score of 56 at his worse. He had no portal vein issues and was thankfully never drained. Most of these resolved themselves after he dealt with the causes of his liver problems and took about 2 years. A change of diet/exercise and abstinence made a huge difference. He still gets mild ascites if he over does things. Hope that helps.

Just read an earlier post of yours. As you can see my hubbie has cirrhosis but normal blood work. Cirrhosis is scarring on the liver surface but it doesn't mean your liver cant function normally if enough of it is well. If you can prevent further scarring you can live a normal life. You are more susceptible to cancer which is why 6 monthly checkups are advisable.

[pushthrough in reply to Oldbits]

I needed to hear this tonight, thank you.