Cirrhosis Question: Just wondering.  I... - British Liver Trust

British Liver Trust

36,474 members17,960 posts

Cirrhosis Question

se31 profile image
se31
29 Replies

Just wondering.  I was a my GP yesterday and he was saying that there are often very few symptoms of Cirrhosis.  If LFT tests don't detect it then how do you know you have it until its too late?

Does a full blood count detect cirrhosis or at least point towards it?

Written by
se31 profile image
se31
To view profiles and participate in discussions please or .
29 Replies
AyrshireK profile image
AyrshireK

The British Liver Trust page has a list of signs and symptoms of cirrhosis on their page at:- britishlivertrust.org.uk/li...

 In my hubby's case he had attended doctors for normal run of the mill issues and had blood tests but no one ever reported he had any liver problem.  Like many others he found out he had liver disease after he displayed a late stage symptom i.e. vomitting blood from burst varices.  On admittance to A&E he was found to have deranged Liver Function Tests and after an ultrasound and discovery of burst varices via endoscopy we were told he had cirrhosis.  A biopsy and elimination of all other possible factors his was put down to auto-immune liver disease.

His LFT's now are largely normal or just out of range so LFT's can be considered a bit hit and miss.

Early cirrhosis symptoms such as are listed on the BLT site are so non-specific to the liver but if several are present it might be an indicator that something isn't right and follow up tests such as an ultrasound, full liver panel (a very detailed set of bloods - much more so than standard LFT''s) and even a biopsy might be used.  In some hospitals they have a fibroscan machine which can tell how fibrous the liver might be.

In my hubby's case when I look at that list of cirrhosis symptoms I can tick them off one by one as being symptoms he was displaying before we got the bad news.  But, we just hadn't considered he could have a poorly liver and even doctors had told him he had anxiety and depression without any physical health checks.

If LFT's are normal but you still feel there are any of the symptoms present then ask for an ultrasound scan and it should pick up any changes in your liver.

Katie

se31 profile image
se31 in reply to AyrshireK

interesting thanks Katie..

out of interest what symptoms could you tick off the list that your husband displayed

AyrshireK profile image
AyrshireK in reply to se31

Most of the list - generally feeling unwell and tired all the time, loss of weight and muscle wasting, spider-like small blood capillaries on the skin above waist level (spider angiomas), blotchy red palms, disturbed sleep pattern, ends of fingers become wider/thicker (clubbed fingers), hair loss, frequent nosebleeds, impotence and loss of sexual desire, extreme fatigue - that was all before diagnosis.

He also had a really irregular bowel habit with either constipation or very loose and sudden need.

On diagnosis he was having very dark/black tarry stools, easy bruising, vomiting blood & since then all the above plus frequent muscle cramps, forgetfulness, memory loss, confusion and drowsiness, trembling hands,

He has only been fully jaundiced once and that was when he was in hospital on diagnosis.  No ascites or oedema.

in reply to AyrshireK

Hi Katie. How is your husband now. Had he made improvements at all x

AyrshireK profile image
AyrshireK in reply to

Hubby is deemed stable at present, he was listed for transplant in 2014 but at the same time also had an operation on splenic artery aneurysms which killed off his spleen and this had the knock on effect of reducing his portal hypertension so he's not needed banding of varices since.

Hubbies continuing symptoms include:- disrupted sleep pattern - either struggling to get off at all (despite going to bed tired) or waking in the night and spending hours awake with an overactive brain, he's tired a lot of the time and struggles with concentration and staying on task. He has a diagnosis of mild Hepatic Encephalopathy. He can't drive, work, gets tired out quickly though can walk for many miles without much issue.

No 'serious symptoms' (thankfully) - no jaundice, no ascites, no further bleeding.

In some ways he hasn't improved a lot but in general I guess he's doing 'ok'. Regained weight and muscle mass which liver unit were delighted with. Recently diagnosed with cirrhosis induced diabetes.

Katie

in reply to AyrshireK

So will he get a liver transplant. With his quality of life been affected

AyrshireK profile image
AyrshireK in reply to

They don't do quality of life transplant - the shortage of organs means it's a life saving operation only. Hubby was delisted from transplant list after a 10 month wait and this was because his bloods and symptoms stabilized so he no longer meets the criteria for transplant - the risk outweighs the potential benefits.

As we've seen on here numerous times, transplant isn't always the golden ticket to a brighter future. At the moment he's safer living the life he has - IF or when his condition perhaps deteriorates again then he should be reassessed for t/p and hopefully given his chance.

When he was delisted we were totally gutted because we thought his chance of life renewed had gone BUT at the same time we had post transplant folks on here not seeing any benefit to it and we actually lost a few forum members for whom transplant didn't work out.

We both just make the most of the life we have just now, hoping and trusting that the medics are keeping a good eye on him and will do the right thing at the right time.

Katie

in reply to AyrshireK

Oh right. That's rubbish. So what's his fibroscan readings etc. I struggle to make sense of it all. I've dropped back to 8kpa. After a private scan. I told my liver nurse about the reading. She went oh.... Your liver has responded well and your liver health is good. If that's the case why am I still poorly. I just don't get it all. Is it the fatty liver what's making me poorly at 326 still. Just trying to make sence of it all.

AyrshireK profile image
AyrshireK in reply to

He's never had a fibroscan. He's got full on cirrhosis (decompensated on first diagnosis) so his hepatologist says no need for one as it won't add anything to the picture.

Your kPa has been reducing, your fatty liver will take time to reverse so persevere - kicking the drink and eating better will gradually hopefully bring it down but it will take time.

Katie

in reply to AyrshireK

Thanks Katie. I've been doing abit of research. I'm more annoyed with my liver specialist nurse. She's not a nice woman. Always Sharpe with me if I ask her anything. Like she hasn't got time of day. Was her who said I had cirrhosis. She pulled out a chart when I had scan. Then said is it alcohol I said yeah I'm a drinker. Then went along the chart with her finger at 12.7 n said your in f4 cirrhosis as that chart had a cut off at 12.5 from f3 to f4. Was horrible that day. I just left confused. Never said a word about fatty liver. All the symptoms I've had are relevant to a severe fatty liver. That's what I have. My alt at time of scan was 160.thats why I was sent for scan. Not I understand with a alt that high I had inflammation going off clearly. She never took that into account. Obviously after not drinking for 14 months that inflammation has gone down. Explains why the reading is now 8 kpa. Never once has she told me to concentrate on getting the fat off liver. For last year I've been eating normal. Puddings. Snack bars. Some surgery stuff too. There no wonder my cap score not changed. I'm about to change it all now tho. Strict diet with lots of exercise. See if I improve.

gamesmaker profile image
gamesmaker

Mine was diagnosed by a biopsy - these are not done as frequently now as they used to be but they do give a definitive result (the gold standard). One of the other means - which is not invasive - is a fibroscan. This measures the fibrosis. It is a bit like an ultrasound scan from the patients point of view. Not all hospitals have the equipment or the ability to 'read' the results. If your GP is wondering if you have cirrhosis he should be referring you to a hepatologist or at least a gastrologist.  

se31 profile image
se31 in reply to gamesmaker

thanks - just having some more test first.  Does a full blood count not detect sights of cirrhosis?

AyrshireK profile image
AyrshireK in reply to se31

A full blood count is just a screening test which looks at white and red blood cells and platelets and is just used to look for a variety of illnesses.  More details about the FBC test at :- labtestsonline.org.uk/under...

It might pick up elements of side effects of cirrhosis but it wouldn't be used to give a definite diagnosis.

se31 profile image
se31 in reply to AyrshireK

i guess I am just being slightly paranoid... my FBC was perfect and only had a slightly raised ALT.  I asked to be tested for AIH as i have a family member who suffers from it - I have to wait 10 days apparently so have been googling too much!!

AyrshireK profile image
AyrshireK in reply to se31

You are causing yourself all sorts of hassle - if your FBC was perfect and all your LFT's were perfect apart from a slightly  (and it was only slightly) raised ALT all is most likely ok.

AIH is generally not thought to be passed on (I know of only one member of the AIH facebook page who has a childwho has now been diagnosed with the same).

I know it is easy for me to say but stop googling, you are causing yourself stress and believe it or not stress can bring on physical symptoms.

Get your AIH antibody tests in 10 days time and fingers crossed you will be ok. 

Katie

se31 profile image
se31 in reply to AyrshireK

:-)  I was under the impression it was hereditory although it says AIH is a It is a polygenic disease and does not follow a Mendelian distribution.  Not sure that on earth that means!!

AyrshireK profile image
AyrshireK in reply to se31

i think It means you can have a genetic disposition for it but it still takes a trigger to set it off. 

No one in Stephen's family has it or any other auto-immune illness so it isn't passed down through the family like some conditions (Huntington's Disease for example or even Haemochromatosis which is a liver illness which can be hereditory).

Just because your mum has it in no way makes you definitely have it.  But still worth having the antibody tests done.

AIH is very much still in the research phase as to what causes it or what triggers it.  It is an auto-immune response to a trigger and then the immune system goes into overdrive and starts attacking your own cells.

Katie

Bolly profile image
Bolly in reply to se31

You can have a genetic susceptibility to AIH, but its not proven to be genetic (yet). Here are other causes: Potential Causes of AIH

"Viruses such as the hepatitis viruses, measles virus, cytomegalovirus and Epstein-Barr virus can also trigger autoimmune hepatitis. However, this is difficult to assess, as viral infections may occur years before the autoimmune disease manifests symptoms, and the evidence suggesting hepatitis viruses as a trigger are very weak.

Some medications may be the culprit including oxyphenisatine (a laxative withdrawn by the U.S. Food and Drug Administration), methyldopa, nitrofurantoin, minocycline, atorvastatin, interferon, and diclofenac.  

Pollutants such as carbon tetrachloride (CCI4), an organic compound once used extensively as a cleaning fluid, refrigerant, and insecticide may also account for the condition.

Another environmental pollutant is trichloroethylene (TCE), an organic solvent that was widely used as a metal degreaser" 

So as you see its difficult to say EXACTLY what the cause is because nobody really knows!   

Its also difficult to diagnose, and should not be diagnosed on the basis of elevated liver enzymes alone, as many things cause that. You should have other things checked, including iGg, Autoantibodies, and ideally a biopsy. Lastly a good response to steroid treatment can point to a diagnosis. 

 You say your mother had AIH, how was hers diagnosed and is she seeing a specialist?

se31 profile image
se31 in reply to Bolly

my mothers was diagnosed by biopsy 20years ago as she became really ill.  She has lived a pretty normal life on steroids.  In those days it was called chronic active hep and there was very little known about it at all

Bolly profile image
Bolly in reply to se31

Today patients with AIH are weaned off steroids as soon as possible and given an immunosuppressant drug instead.  Is she seeing a hepatologist or is she relying on her GP for monitoring/treatment.

Its still rare, around 1 in 17,000 of us in the UK, so many GPs will have never seen a case.

se31 profile image
se31 in reply to Bolly

she sees a hepatoligist every 3 months i think and a gp once a month.  Her gp knew nothing about it initially and had to learn himself.  She had the sae one for 15 years in bristol until he retied

Bolly profile image
Bolly in reply to se31

As she has so many years experience of AIH and from what you say is being well monitored (not sure about the medication though!) I'm sure she can reassure you that a slightly elevated ALT on its own is nothing to worry about.

briccolone profile image
briccolone in reply to se31

very high GGT levels can be an indicator >500 but can also be caused by other things. My liver tests were always ok other than GGT. There are people on this site who had no symptoms and blood tests also fine who end up being diagnosed with cirrhosis but it's not commonplace I would say....

se31 profile image
se31 in reply to briccolone

yeah surely people must have physical signs of some kind even if the bloods are good.  Anyway i guess medicine is strange in that way....doesnt follow a pattern sometimes 

briccolone profile image
briccolone in reply to se31

mine was digestive issues mainly but that was fatty liver-caused by alcohol. managed to reverse symptoms with diet and abstinence although GGT levels remain high

briccolone profile image
briccolone in reply to se31

the liver is very very complex-everyone's experience is different but there are common symptoms-I've had most but there's a lot of similarity between fatty liver symptoms and cirrhosis-there's a lot of confusion about it especially as a lot of journals say that fatty liver has no symptoms-I can assure you it does-at least in my case.

gamesmaker profile image
gamesmaker

No - you need a much more complex blood test including amongst others the liver function tests.

se31 

Liver function Tests are generally reliable, but the cause of anything damaging the Liver is very important.  Some Auto Immune and viral causes "can" be difficult to detect.  Hep-c can slowly chip away at the Liver with tests being normal or near normal for inflammation, thats why it can take 20-40 years for someone to notice, they notice when it starts to fail.

Acute Liver inflammation is unmistakable and you would know if you had this because you would be very very ill and likely yellow etc etc.

Alcohol damage is one the easiest to detect with LFTs because the damage occurs as the Liver gets fatty and swells, the inflammation markers should pop up, especially GGT.

If you have text book clear LFTs and say an ultrasound all normal, chances are that you are in the clear.  A relatively new test is a Fibroscan, its a very good test, if you are clear on this then you should be fine.

angse profile image
angse

Hi se31 my lfts were high for 3 years before my GP even told me anyway my platelets dropped then I was sent to gastroenterolgist who ordered biopsy on liver that diagnosed cirrohiss so you will need testing. Annette

You may also like...

Cirrhosis questions..

them about getting blood work done. Anyone else had or know someone with these symptoms?...

Cirrhosis questions for my MIL

here.... My Mum in law was diagnosed with cirrhosis a few months ago. She wasn't a drinker, and the...

Progressive cirrhosis question.

after abstaining from alcohol cirrhosis will continue to slowly develop until the liver shuts down....

A simple question on Cirrhosis..

perfectly OK to him, too, Whilst I know that a doctor needs to have proper test results to hand...

Cirrhosis Reversal Question

around 8 years. At that time I was diagnosed with Cirrhosis , platelets around 64 000 , enlarged...