Have you been diagnosed with a liver c... - British Liver Trust
Have you been diagnosed with a liver condition by a professional?
Please select all that apply:
portal hypertension oesophageal varices, cavernoma, right lobe haematoma and intrahepatic haemangioma
Liver cancer arising from genetic haemochromatosis
Liver cancer
PSC
Primary Biliary Cirrhoses
I test +ve for AMAs, have done for over 22 years with no other issues.
For the first 12+ years this was never explained to me - other than I might develop a liver/rheumatoid condition (no internet etc then, and I was young-ish). I had annual liver function tests, which were always perfect, and was told to stop the tests after 12 years, on the grounds I would never get anything.
Over 6 years ago, a new-to-me GP, in a new area, got wound up about the old AMA result ,retested me, then told me I had PBC without explaining it (we were already running over time !!!). I went home, googled and had the worst Xmas of my life. I saw a liver specialist pretty quickly, but as my lfts were still perfect and there were no other signs or symptoms (ultrasound clear), he told me I'd probably never get anything and sent me away thinking I was fine. Except that when his letter arrived he'd diagnosed me as 'pre-symptomatic PBC'.
I've since been told (informally, by a leading PBC expert*) that this is not a recognised diagnosis: and as I found to my cost, Travel Insurance etc don't recognise it. I have to say I have PBC - and then say 'no' to all the questions - in order to get TI. I still have perfect lfts, and no obvious signs and symptoms. My (other) GPs are supportive and say I don't have PBC and will possibly never develop it, but because of my TI paranoia and the stress of being neither one thing or the other, they are supporting me in the idea of going back for a re-diagnosis.
NB The expert* did tell me that far more people test +ve for AMAs than will ever get PBC, and also that, strictly, the diagnostic criteria for PBC demands at least 2 out of 3 tests be +ve, before PBC should be diagnosed (that is, +ve AMAs, abnormal lfts, and biopsy showing bile duct damage). I'm trying to pluck up courage to go back to be retested. I know there are things like MRCP scans and fibroscans now that could help decide things, but I keep vacillating. I'm thinking I could end up with a slightly worse diagnosis, yet be no different (most consultants now seem to say that AMAs automatically = PBC), or I could find I've had it all along and that there's liver damage. I know I should get checked, to be sure, but I'm afraid. NB I get very little support, my partner just gets annoyed and thinks I'm a hypochondriac, friends don't seem to want to know, and I don't think the GPs are that bothered.
Fatty liver nafld
I had my gall bladder removed and the surgeon said my liver was scared and hard and he thinks i have early cirrhosis.
hep C
Polycystic liver disease
PBC on the waiting list
hep c and cirrhosis
NASH and they ain't got a clue why I have it!
Aih and pbc
Aih
Suffering from polycythemia since 2008 ,was Jak 2 ( Jakus kinases) +ve till the latest test made in 2014 turn out to be -ve., abnormal liver functioning due to perhaps my epileptic drugs (levetiracetam 500 mg with glycerol- alcohol coating)(and very soon starting statin to reduce my cholesterol.Quess what , I was also referred for psychiatry assessment next week.Keep you updated about the ongoings
Gilberts Syndrome
Alpha 1
HCV (cured) leading to cirrhosis and liver cancer. Waiting for assessment
Pbc with liver lesions???awaiting results on them
Choledochal cyst in bile ducts (complete bile duct reconstruction 2007) Have liver fibrosis and nash
cirrhosis, portal hypertension, oesophageal varices, inferior mesenteric thrombosis.
Primary Hyperoxaluria type 1
AIH overlap PBC
Cirrohsis and portal hypertension. Alcohol presumed to be the cause.
Hep c ..
Diagnosed circa 3 years ago with Autoimmune Hepatitis and Fibrosis at an advanced stage. This has since advanced to Cirrhosis which became de-compensated about one year ago with the advent of moderate Ascites. I have been under the care of a medical professional at local hospital throughout
Hepatitis C from Blood Transfusion, then diagnosed with HCC which turned out to be a primary Liver Lymphoma - extra nodal marginal zone lymphoma.
i was diagnosed with NASH and I've had a enlarged liver for about a year now. I have gallstones wich I'm Finally...Hopefully...Going to have my Gallbladder out....I haven't drank for 30 years and the SPEACIALIST' advice was watch what you eat...I had lost 20 Ibs??? And the PAIN is unbearable.....also too much iron in my liver.....
HCV and cirrhosis
cryptogenic cirrhosis
Do you ever get frustrated with this diagnosis? I have had this same diagnosis for nearly 4 years now and I keep thinking of all the things that I could have possibly done or things which could have happened that have caused it. I also worry constantly that if I do something that it might affect my liver and make the cirrhosis worse. I was recently taken into hospital with a gallbladder infection and also have suspected crohns disease which I can't help but suspect is all linked. I find it very frustrating!
Not frustrated, no, liver is scarred, blood results are high, now diabetic, varices have been banded, high bilirubin. Can't change what's happened. Concentrating more on keeping relatively fit & well whilst waiting for a transplant. Have been on transplant list for 7 months
Yeah I think that is the most important thing. Thankfully I think my cirrhosis is compensated at the moment despite the recent infection but I hope all goes well for you! You have my best wishes.
That's good, keep well, all the best.
No myself but yes Hubby has - Advanced Cirrhosis due to auto-immune. Portal hypertension & varices.
Cirrhosis from NASH, enlarged spleen, portal hypertension.
Diagnosed at Kings 2009/10 with NASH Child Pugh A Cirrhosis, portal hypertension, enlarged spleen, thrombocytopaenia, diabetes 2. No medication for diabetes, bloods have remained static, GGT improved to within range, slightly high bilirubin. Exercise and diet keeping it under control - so far.
Idiopathic cirrhosis of the liver
Hep B, Liver cancer, AIH
micro nodular cirrhosis due to Genetic Haemochromatosis
Liver cirrhosis and portal vein thrombosis.
Hep c
Fatty liver, portal hypertension, early stage scarring, encephalopathy - still investigating, drank wine for only a few months (first time ever) but damage is too severe to be due to this. Investigating iron overload and autoimmune problems (although tests have been negative so far). I see the consultant this week with, hopefully a diagnosis as went into complete liver and kidney failure with sepsis at the end of last year, was in ITU 6 to 8 weeks, given hours to live and medical support stopped to make me "comfortable". After 4 days medical support was restarted as kidneys showed signs of recovering. Will be good to have a final diagnosis so I know what I am dealing with or facing.
progression of the fatty liver to NASH with portal hypertension and oesophageal varices
Hep c
Recurrent Intra hepatic cholestasis
non alcoholic fatty liver disease just diagnosed after abdominal scan, have a lump on the liver and one on my kidney, i am told they are more than likely cysts, no further treatment has been offered, just advised to lose weight, i am grossly overweight, i haven't a clue on what i should or not eat except the obvious ie. greasy
foods, some help would be greatly appreciated. Having read some of the comments i guess my problem is minor but it would help
thank you
Have you tried natural remedies to lose weight? I have struggled for years with my weight, after seeing an article about green coffee bean i gave it a try and miraculously I lost weight! Another one to try is raspberry ketones google it, they sell them at good prices on amazon, good luck.
Wilson's Disease. Awaiting a biopsy on the 12th. Fibrotest and Fibroscan neg. for cirrhosis but I have diabetes now and my hep says fibrotest and fibroscan can be wrong. Scared out of my mind.
Cirrhosis. Alcohol was a factor, but so were genetics and my epilepsy medications!
Budd chiari
PBC
PBc
PBC
PBC
Cryptogenic Cirrhosis
aih
Stage 4 colangiocarcinoma. 4 tumors in the liver now in the peritoneum & under the diaphragm. Receiving chemotherapy in an attempt to hold advancement. Diagnosed 9th March 15.
Cibble
Haemochromatosis
AIH and PBC
polycystic liver disease
Portal hypertension, gall stones, iga syndrome, varisces, stomach erosion.
Initially cryptogenic cirrhosis but PSC after transplant.
PBC, NASH
PBC
PBC
Autoimmune for 1st liver transplant. Wear & tear cirrossis made my need for 2nd transplant greater
Fatty liver was casually mentioned a while ago. Not once did anyone emphasize how dangerous it can be and that if I dint change my eating I could get cirrhosis! Not once! Now I've been told I have fibrosis. I don't know how severe and I don't know what to do. Still no one has told me what to do. I'm googling to get answers. Do I get my affairs in order and wait to die? Do apply for disability? I had to ask multiple times to be tested for hepatitis, thankfully that came back ok, so it's really fatty liver. So how is that treated? How could it get so bad?
Biliary Atresia
Cirrhosis/end stage liver, non alcohol non fatty.
