Just been diagnosed liver cirrhosis by video call due to covid. Autoimmune cirrhosis the think , had blood test to eliminate hepatitis. Had letter to say re assessment in 8wks [18th March]. Been left for 7wks not knowing what to do or not do. No information. Feel like I don't know what the hell is going on.
Told you have cirrhosis of the liver speak in 8wks time.
My son was diagnosed last year with AIH and cirrhosis. The Facebook group for AIH is an invaluable source of information and support.You can find the link here through this webpage. aihsupport.org.uk/
Hi Kingy, my hubby has cirrhosis due to auto immune hepatitis. He was diagnosed in April 2012 having presented with end stage symptoms. No treatment was put in place for his condition at that time and it wasn't for a couple of years until they tried him on some steroids - his AIH is deemed burned out and inactive so he isn't on any of the standard treatments for AIH.
What tests have you had done to date? Normally a diagnosis of AIH is done on the basis of a whole multitude of tests and often by eliminating others. There is no one blood test that is definitive for AIH and often diagnosis involves scans, liver biopsy and response to medication.
When is your follow up appointment? - you've put 18th March which is only next week.
What symptoms do you have that have led to the cirrhosis diagnosis? If you are relatively free of major symptoms and with no ongoing inflammation (hepatitis) then you are good to wait a little while without major intervention. Due to covid contraints etc. my hubby who has confirmed cirrhosis hasn't had any consultation with a doctor since January 2020 - just his routine scans etc.
A bit poor that they've only given that diagnosis and left you dangling.
Katie
Letter says ANA Positive, weakly SMA positive, raised IgM,raised ALT, F4 Fibrosis on Fibroscan.
Ultrasound scan mild fatty infiltration (no sign of advanced liver disease).
Viral screen negative.
Tired all the time, after eating feel sick or can't eat much. Itchy back. Not sleeping well.
A couple of things stand out there which might point to things not being as far advanced as cirrhosis.
Although your fibroscan says F4 fibrosis this can be inaccurate and give a false high in circumstances where your ALT (liver inflammation marker) is raised. Fibroscan can not differentiate between inflamed liver tissue and actual fibrosis so although your kPa might be in the F4 bracket this may be a false high due to the inflammation.
That would tally with an ultrasound that doesn't reveal any advanced liver disease - cirrhosis is often very evident on ultrasound since in cirrhosis the liver tissue is distorted, liver shape is distorted and common terms that appear are things like 'coarse, dense echo texture' and such like. If your ultrasound doesn't identify cirrhosis then it differs from your fibroscan so might point to inaccuracy of fibroscan.
Antibodies obviously point to an auto immune thing going on so in all likely hood at some point in the future you are going to need a liver biopsy to see which cells of the liver are involved as there is more than one auto immune illness of the liver and they affect different zones/cells of the liver.
Diagnosing auto immune hepatitis can take a bit of time as they do all the different tests and draw the pieces of the jigsaw together.
The BLT has a page all about AIH which might prove useful to you, or the Facebook group which has already been mentioned. I am also a member on there as I support my hubby with his health condition.
Katie
Thank you.
Forgot to add link to AIH page on BLT website. britishlivertrust.org.uk/in...
Katie
Hi Kingyc I think most people will say stop drinking and eat healthy with good exercise, I am just questing this will be a change of life stile but when you are diagnosed with cirrhosis it generally goes hand in hand. I’m an alcoholic waiting for liver transplant stopped drinking over 17 years ago and changed my life to a better one, you will find lots of support on this website if you want it good luck my best wishes to you and your new life 😀.Stay Safe All
Dogbot 🐶🌈
As someone who does have AIH, I can say that I was never told to stop drinking, in fact many others with AIH, do drink, in moderation of course!
Also, many of us with AIH are told diet will make no difference. Of course once you develop advanced liver disease, that is affecting your absorption of protein, the advice changes, but many with cirrhosis from AIH, get told "diet makes no difference" & so the advice for everyone with cirrhosis does depend to some extent o the cause. Just adding my experience here, as someone diagnosed over 10 years ago.🙂
Hi CarpeDiem11 I am so sorry if I offended or insulted anybody that is not my intention I apologise if I have 🤝.Stay Safe All
Dogbot 🐶🌈
Hi there Dogbot. No offence taken. I just wanted to say advice given can depend on the cause & we don't all get given the same advice. Written word can convey a certain tone that wasn't intended. 👎
Hope you're having a lovely weekend.🙂
Hello,
katie has directed you to our AIH info but you might also want to have a look at our Patient charter - what you should expect from your care. It would be helpful to look at his before your appointment, particularly as at the end it has suggestions for questions you might want to ask your doctor.
britishlivertrust.org.uk/li...
We do have a free helpline as well if you feel you would like to talk to one of our liver specialist nurses. It is open Mon- Fri 10:00 - 15:00 0800 652 7330
regards
Try Eurax cream for the itching. I'm AIH & taking no meds other than fluid tablets & Hep said it was ok to use it. Antihistamines may work but not sure about using both together. Try not to worry too much...if the Drs were really concerned about it they would be chasing you!
Thank you
Hi Kingyc, I often feel nauseous and I know it can be really awful. I discovered by drinking at least 1.5 litres of bottled/filtered water a day. It’ll help move the bowels, sorry 
and the build up of toxins that causes the nausea.
You’ll feel much better and more inclined to eat. With liver cirrhosis it’s better to eat healthily. I twice saw a Liver Dietician, referred by my Hepatology Consultant, which said to keep a food diary for a couple of weeks.
Fatigue is one of the symptoms and I’ve learnt to rest or nap when it’s necessary.
As for not sleeping well at night, I just mentioned to my GP and she sent me a link here it is:
guysandstthomas.nhs.uk/reso...
Suggest you have written questions ready to ask on the 18/03/21. I hope it all goes well.
Hundochick
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