Newly diagnosed

[FAB1962]

I still feel unsure as the information I have been given is quite sketchy. My initial fibroscan in July 2022 seemed to be quite disconcerting as had a liver stiffness of 41.9Kpa with CAP 400, which apparently is the most they could record, so was a little concerned. But nothing was really discussed and then told I needed to a have MRI scan and then a endoscopy.

I already struggle with several other conditions, depression, gout, osteoarthritis, potential diverticulitis and in Jan 2021 was hopsitalised for Covid-19, which has turned into long covid as still struggling with breathing and fatigue. As a result tests were carried out, hence now the issue with Cirrhosis, as recently informed and when I asked about diagnosis and prognosis was told to check on this site. I was told I have compensated cirrhosis but that felt like a guess, and a advised to lose weight and will be referred to a dietician.

Let's say I am not overly impressed with the information and advice, and my mental health is a best quite fragile now, already on antidepressants and painkillers for arthritis. I was already aware that I needed to lose weight but that is not easy due to lifelong psychological issues linked with depression.

Looking for some guidance

[kensimmons]

Go to a bookstore or library and look for recipe books for those with liver conditions. There are so many that it would be no use linking to one because everyone's situation is different. If you are compensated and lose weight things can start looking up. And the BLT phone line is an awesome resrouce. Take the time to make the call, you will get great information there. '

Good luck!

[Readlots]

Hi, Ken’s advice to call the British Liver Trust helpline is good - it’s supported by professionals.

It’s normal to have lots of questions when you’re going through tests and you would normally expect you consultant to answer them. People on here can provide support based on their own experiences but not provide a diagnosis and certainly not a prognosis. Until you know what you’re dealing with it’s really hard to move on and the uncertainty will be affecting your mental health. If they are sending you for an MRI and endoscopy it sounds like they are still investigating and don’t have all the answers yet which may be why they haven’t given you a diagnosis or a prognosis. Id suggest talking to your GP after Christmas and asking them if they can get any answers from the consultant for you based on what they do know so far. They can also support you from a mental health perspective.

Re weight, this is standard doctors advice for just about everything and it really annoys me, particularly when weight gain is a side effect of lots of medication. As my daughter would say ‘correlation does not equal causality’. I read some research the other day that acknowledged how hard it is to lose weight when you’ve got other illnesses going on, particularly ones affectin mobility. I’d say, avoid alcohol, eat healthily and move as much as you can because it will help your mood but don’t beat yourself up about it and don’t make yourself miserable.

Try and take each day as it comes, you’ll get answers in due course. For now know that ‘compensated’ is OK. Lots of people on here strive to hear that word. There are lots of people on here to support you, it’s just a bit quiet because of Christmas.

[55spenc]

hi FAB1962 wasn’t going to post this until New Year, if you read my posts about diagnosis we are on the same level as follows. Diagnosed 22/10/2022 F4 fibrosis/ cirrhosis. It was a case of there’s your diagnosis there’s the door now …. Off and crack on! SO spoke with my GP finally 23/12/2022 in short he has gone absolutely mental with my diagnosis considering now and prior to diagnosis there were/ are NO symptoms! Endoscopy perfect no hyper portal ie ( liver working perfectly) no varices no acites no nothing! However Fibroscan 23.6 slight course echo texture on ultrasound! Yes I’m lucky boy I feel lucky, but my doctor GP is not happy! Feels now a NEW thorough investigation into the diagnosis and in his words he’s sending a snotagram to reflect his thoughts! I keep you posted!

[pushthrough]

Hey Fab, the lack of information I received when I was told my liver was damaged really upset me and that’s putting it lightly. It was back and forth non stop. Was this a GI you saw or a Hepatologist? Basically when they first discover you have liver damage they tell you to cut out what they suspect caused it. In your case it sounds like being over weight. I can only speak to what I experienced in the states.

Looking back they identified an issue that was out of their area of expertise. I was even told by the GI it could be reversed after an mri. I was sent to a hepatologist and around 9 months later I received the diagnosis.

It was extremely frustrating. The most important thing you can do is lose weight. I know it’s hard because I even have trouble getting back to the bmi they want me at but it can be done. Im also on antidepressants and anxiety meds so I know the mental struggle is extremely difficult. It sounds like a cop out but stay positive. In many ways being told I jacked up my liver was a wake up call. I would listen to Ken, he is very knowledgeable.

G.

[FAB1962]

Thank you for your messages

I will speak with my GP and hopefully the referral to dietician will be helpful. I do feel the post-viral (Covid) has not helped. My endoscopy show mild PHG but no varices and have an ELF test score of 11.7