At what point after your symptoms star... - British Liver Trust

British Liver Trust

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At what point after your symptoms started did you seek medical help?

BLTHollyDawson profile imageBLTHollyDawsonVolunteer82 Voters

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27 Replies
Jhewkin1 profile image
Jhewkin1

I didn't know what I had it after I was told started to get pain on the right side

PCBnPBC profile image
PCBnPBC

I did not realise I was unwell !! it was bloods and Ultra sound that showed I had full chirrosis (PBC)

I had problems from the early 80s (in my 20s) various tests done but with nothing detected.

Eventually in the late 80s they diagnosed Hiatus Hernia. But problems continued until 2010 when I was diagnosed with Parkinsons, and at the same time one of the GPs must have been going back through blood tests, and found a problem. It was then I was diagnosed with Gilberts Syndrome, which they say is not serious, but when you have an acute attack it can last weeks and you feel bloody awful.

Bolly profile image
Bolly

I didnt have any symptoms until around 30 years after infection with Hep B. It was cancer symptoms that took me to the GP. After a liver resection my symptoms didnt improve (though it saved my life!) and further investigations which took about a year diagnosed 'probable' AIH on top of the Hep B. Am now on treatment for both Hep B and AIH but still have the same symptoms, mainly fatigue and aches and pains, digestive problems with high protein or high fat foods.

overworked1 profile image
overworked1

no symptoms, incidental finding on bloods

GrittyReads profile image
GrittyReads

Originally, 18 years ago, I saw a GP for joint aches and headaches, and his general tests revealed I tested +ve for AMAs. I was not diagnosed, as had no other diagnostic criteria, eg liver function tests normal, and no symptoms (headaches etc went away). No medical intervention for 12 years, told to stop annual LFTs as I would never develop anything (PBC never mentioned), then 6+ years ago a new to me GP renoticed the old AMA result and sent me to a liver consultant, who diagnosed me 'pre-symptomatic PBC'. My annual lfts were re-started, but are still normal, and other than ultrasound 6 years ago I've had no other intervention for the liver, and no other symptoms that are absolutely PBC.

barclay12 profile image
barclay12

I was found out I had liver problems after a cholesterol test

ancientadolescent profile image
ancientadolescent

I never experienced clear symptoms. I began seeking medical health help following a nervous breakdown and a long period of clinical depression.

Ph1ldad profile image
Ph1ldad

was referred to hospital for other reasons and raised LFTs were picked up. Later investigations discovered HCV and cirrhosis. Was asymptomatic for liver complaints

loulou55 profile image
loulou55

I started feeling unwell about 12 months earlier, really tired, hair was falling-out, a whole host of things that didn't feel right, I thought I needed some vitamins, went had blood test done, they came back normal, but I didn't feel right, so they did some more blood test as my LFT was slightly high and found out 2 months later I have Alpha 1, finally getting to see a liver specialist in 3 weeks time.

carmik profile image
carmik in reply to loulou55

Hi just read your post.

You are like my husband, one of the rarer "alpha's" to develop liver rather than lung problems. Hope you get on OK. There is a Yahoo group for Alpha's if you are interested.

Good Luck

loulou55 profile image
loulou55 in reply to carmik

Hi, This is all very new to me, my GP doesn't know a great deal about A1AT just said I have the MZ gene and that I am a carrier, and have sign's of liver damage not sure how bad until see specialist, so any information to help me would be greatly appreciated,Thanks

carmik profile image
carmik in reply to loulou55

Hi Loulou55

Sorry to hear about this. But you are MZ which is a good sign. MZ doesn't usually cause you problems but as you have found out it can. Not many GP's know anything regarding Alpha 1 so that is not new. Which hospital are you going to?

Make sure you see a Hepatologist who is conversant with A1AD and not a Gastroenterologist.. There are other reasons for liver problems and although you have been diagnosed with A1AD it is not beyond reach that something else is causing your problem, i.e certain meds affect the lliver, so just wait and see what they come up with. Do you know what your LFT levels were?

Keep in touch as there is very little I do not know about A1AD as my husband was diagnosed 8 years ago when even less was known about it in the general medical profession..

He is ZZ and went on to have transplant 2 and a half years ago.

Good Luck

carmik profile image
carmik in reply to carmik

Sorry forgot to ask you what area are you in

mrsk63 profile image
mrsk63

Didn't realise anything was wrong as I'd had the spots for years. Went for my first breast screening and the lady recommend mentioning them to my Dr.

Brummi profile image
Brummi

I went to my GP to get treatment for a chest infection, at that time I informed her of weight loss. I was then sent for a chest X-ray and blood test. Blood test results were not good, I was diagnosed with PBC in January 2011 And had a liver transplant in June 2013.

jan6146 profile image
jan6146

I went back to my GP after a week of taking Omeprozole prescribed for heartburn. I thought it was a reaction to the medication when my skin became really itchy and my urine turned a bright orange; a colleague at work said I looked as though I'd caught the sun. The GP took bloods and rang me that night saying I needed to go to A&E. A week later I was transferred to King's with acute liver failure facing a transplant. Following a biopsy I was diagnosed with autoimmune hepatitis and started on prednisolone - a horrible drug for it's side effects, but it saved my life and I was spared the surgeon's knife. That was 3 and a half years ago now and, although I've developed cirrhosis, most of the time I feel very well.

CMGY profile image
CMGY

Only discovered raised ALT after routine blood work at general health check. Subsequent ultrasound

showed fatty liver. CMGY

AyrshireK profile image
AyrshireK

Although hubby had various symptoms they were masked by other events going on in his life - anxiety, caring for elderly father etc. First major symptom was blood in stools then massive upper GI bleed which finally took us both to hospital via A&E. Looking at a list of cirrhosis symptoms now we can go down it and say yes, had that, had that, had that - just never considered the liver as a possible cause being t-total etc. Just though everything was stress related. 2 years later and hubby now on transplant list.

findasolution profile image
findasolution

My first symptom was the sudden overnight development of jaundice and I sought medical help during an emergency appointment with GP the next morning..

Koinonia profile image
Koinonia

I think I had liver disease for many years before I collapsed and was hospitalised,then diagnosed with cirrhosis. It had been classified as ME (perhaps it was?) etc. Eventually a diagnosis of AIH was reached.

Koinonia profile image
Koinonia

I didn't know I had AIH until Cirrhosis was discovered on hospital admittance after I collapsed in the street(in 1997) Four years ago I was told I also have PBC. I had been suffering with ME and many other symptoms for very many years prior to 1997.

Tatjana profile image
Tatjana

I was not feeling well after having baby in 1971 but had no symptoms as such. In 1991 gave blood. Received letter "thank you but no thank you."

GavBelfast profile image
GavBelfast

Very soon after I developed regular, profuse sweating. I went to a GP and said I was worried I was developing an alcohol problem. She did blood tests and these showed mildly raised liver enzymes. Been back and forth to different GPs (and hospital) and had many more series' of tests as symptoms got worse. Now know for sure I have fatty liver, but fearing it is worse than this and feel like I'm in limbo - unable to do anything other than not drink.

desmond333 profile image
desmond333

about 2yrs. sharp pain and shortness of breath

My hubby has his head buried.. 15 years of 15-20 units per day.. no pain in belly.. but yellow/orange stools worse with high fat foods, sleeps during day, has night sweats but not every day and new one was affer an hour of coming to bed wakes up hallucinating that our daughter isnt her.. he was scared.

After a month or two of severe itching and long before liver disease diagnosis, husband referred to dermatologist and prescribed a few ointments that helped just a wee bit.