Ho do you go about getting a fibrosis test or liver biopsy when your GP doesn't listen to you.
Fibrosis test or liver biopsy - British Liver Trust
Fibrosis test or liver biopsy
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54 Replies
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When you say your GP isn't listening - who ordered your CT and ultrasound which revealed nothing more than fatty liver? A finding that seems to have been corroborated by your private bloods.
I sincerely doubt any one is goind to carry out a liver biopsy as an exploratory test when there are no indications to warrant it. Some people pay for a private fibroscan - don't know where you might get one of those - London ??
in reply to AyrshireK
I paid privately for my CT scan and berium swallow the NHS done my ultrasound and now I can't afford to pay for a fibroscan, I just feel ill all the time I have nausea, hard time swallowing food muscle cramps and weaknesses, stomach cramps, headaches, flatulance, GERD, coughing and osteoporosis and depression.
in reply to
And memory problems
And pains around my liver and kidney areas
I would love a fibroscan, but my bloods have stabilised and my fib4 says no fibrosis. Ultrasound says fatty liver. My gp says as my bloods and fib4 are OK there is no need for further testing. I beg to differ. Its hard to get on with life when you know there could be something worse going on and there's no way to get it tested unless things take a turn for the worse! Are you in the UK?
in reply to Hayleypop
Thanks for the reply 👍
mozlaw in reply to
change your doctor
I've been to several different doctors. They just label me with health anxiety now so don't take me seriously. My gastro doctor just keeps prescribing me acid reducers and checking in every 3 months for me to tell them nothings changed. They won't even consider my liver as my bloods are normal right now. I'm thinking of getting a private fibroscan to be honest
Hi Hayley, did you manage to stop drinking? 8 months ago you posred that you'd had a diagnosis of fatty liver but were still drinking. Alcohol cessation and following a good, healthy diet then there would be no reason to suspect any progression. If you are getting 3 monthly check ups then you're getting more than most folks who do have cirrhosis.
Know how you feel. Been having symptoms for over 11 years now. Heavy binge drinker for 20 years up to October 2011, teetotal since. ‘Enlarged Liver’ shown on CT in spring 2012 though since told that’s subjective. Nausea, pains in Liver area, itchy legs, more sensitive to paint fumes these days etc, periods of profound brain fog (HE?), frequent hypoglycaemia (which would be caused by the Liver’s inability to store glycogen).
Only thing showing in bloods is persistently raised ALT, but not raised enough to show as a red flag.
Had 3 fibroscans over a six year period (all show ‘normal’ range). Two Ultrasounds both showed a smooth Liver exterior not indictative of Cirrhosis apparently.
It’s annoying nothing shows up when all this has been going on for over a decade & the medics offer no better explanations other than IBS or gastro issues. Joke really.
But ‘they can only diagnose what they see’.
May I ask you please, do you have a bad musty taste in your mouth or smell like garlic or boiled cabbage from your body?
in reply to Fibro2021
Don't think so, but I've always got a dry mouth, my partner hasn't commented on my on my body ouder smell
in reply to Fibro2021
Why do you ask, do people with cirrhosis smell like boiled cabbage.
Avux99 in reply to
😂
Fibro2021 in reply to
You didn't write quite correctly. I did not write about cirrhosis. I only asked about similar body or breath odor, as this can be one of the symptoms of hepatic encephalopathy (HE) and portal hypertension due to the accumulation of intestinal toxins in the blood. I don't have cirrhosis. I have diagnosed with another liver disease by liver biopsy, namely nodular regenerative hyperplasia (NRH) and non-cirrhotic portal hypertension (NCPH). I constantly have an unpleasant sweetish taste in my mouth and an unpleasant body odor reminiscent of the smell of boiled cabbage or garlic. It's sometimes more sometimes less but never completely disappears.
in reply to Fibro2021
Hi, sorry to hear about your situation
in reply to Avux99
Do you get any headaches and muscle cramps and stomach cramps
Hi ! Has anyone ran ANA tests for antibodies ?
I had very elevated ALT ASTS so they ran ANA test which came back positive for maybe AIH. That’s how I received a biopsy which came back as fatty liver and fibrosis.
They will only do a biopsy if all these are positive/ elevated I think.
Probably have to go private 
X
in reply to Wab90
My ALTs, AST, ALPs protein, albumin, bilirubin came back normal, but my gamma GT come back high the level was 87
Hi Maco, even with suspicions of liver disease, medics prefer not to risk the complications of a liver biopsy without significant justification. Its therefore unlikely, even if you were prepared to pay for it, that a medic would be willing to do it without some justification it was necessary.
For a fibroscan, the British Liver Trust has a mobile unit that they travel with to do roadshows with the public. That may be your best bet and you would only have to pay for your travel to get there. I'm sure there are other clinics that will do these for a fee, but it seems from other posts here you would rarely get any useful interpretation of the results without further private consultation with a gastro doc or hepatologist. I cant help you with any suggestions as to where you'd get this done though as I just don't know. However, I'd be concerned that you may just be throwing your money away chasing an issue that your scans and other tests have already indicated isnt there. It may therefore be more appropriate to look in different directions and the gastro region is a minefield of possibilities unfortunately but would be more likely given what you describe. Those pesky git bugs can get up to all sorts of mischief, lol.
You clearly have a wide range of symptoms and sometimes it can be very difficult to narrow down a particular cause. But, save your money, or at least if you are going to spend it, possibly look a bit broader than focusing on your liver. What you are experiencing may even just be a complication of one of your other conditions. So, keep an open mind and hopefully the cause will eventually be identified.
in reply to Kristian
Thanks for the reply
I was diagnosed with nafld when I was 38 (I’m 54 now). I had regular blood tests and an ultrasound every 3 years. It was only last year I had a fibroscan because my blood tests were high, my fib 4 and elf test showed fibrosis so I got referred back to consultant and had a fibroscan which confirmed it. If your bloods are not indicating fibrosis you won’t get referred and I’ve never had a biopsy. I also have never had pain in that area even though my liver is enlarged and scarred.
in reply to jbrking
I was diagnosed with a fatty liver on the ultrasound, but I get pain in the liver area.
jbrking in reply to
but you say your bloods all came back ok? So it’s probably not your liver giving you these issues. I also have a bowel condition called bile acid malabsorption, and I know from having lack of vitamins that certain ones can cause you cramps. Maybe ask your GP or start taking vitamins B12 and D would be the main ones. Dry mouth could be for various reasons too. Have your sugars been tested? I’m diabetic and I get a dry mouth if my sugars are high. Also look at low fodmap foods that will help with wind etc.
in reply to jbrking
The last private blood test results were all ok apart my gamma GT nearly three times higher than normal 87, I have B12 deficiency and have a b12 injection every three months, my vitamin D levels were 128 nmol/L, which is normal, but I've ended up with osteoporosis and avascular necrosis of both hip's and just generally feel unwell all the time
jbrking in reply to
my GGT has been over 100. Just that result alone doesn’t mean anything to be honest - as long as your other results ok then please don’t worry. A good diet will help, eg low fat. You’ll prob find it will come back down. I would say yes setraline can make your mouth dry like that, my son takes it.
in reply to jbrking
Thanks 👍 mine was 528 last September 21
in reply to jbrking
I take sertraline that could be causing the dry mouth and eyes
in reply to jbrking
Sorry to hear about your situation q
in reply to jbrking
Thanks for the reply and sorry to hear about your situation.
without labs indicating issues with your liver, I don’t think a liver biopsy is warranted
My gamma GT is nearly three times higher than normal
AyrshireK in reply to
Your GGT is now where near 3 x upper limit of normal which on GP Notebook the normal range for men is 11-50 i.u./l.
Raised or high GGT
Gamma-glytamyl transpeptidase is an enzyme which is found in hepatocytes and biliary epithelial cells. GGT may be high in liver disease. In particular it is a feature of biliary outflow obstruction rather than hepatocellular damage.
GGT (in men) = 11 - 50 i.u./l
GGT (in women) = 7 - 32 i.u./l
Note reference ranges may vary between laboratories.
GGT serum measurement provides a very sensitive indicator of the presence or absence of hepatobiliary disease. However the usefulness of measurement of serum GGT is limited by its lack of specificity. Raised GGT levels have been reported in a variety of clinical conditions including :-
pancreatic disease
myocardial infarction
chronic obstructive pulmonary disease
renal failure
diabetes
obesity
alcoholism
Drugs such as phenytoin and barbiturates may cause high GGT levels.
Suggested protocol for investigation of a raised GGT in an asymptomatic patient without risk factors for or clinical features of liver disease
Recommended investigation for isolated raised abnormal gamma glutamyl transpeptidase(GGT) in an asymptomatic patient without risk factors for or clinical features of liver disease in primary care (1):
GGT has limited utility as a primary liver test
the measurement of GGT is recommended in particular to establish the likely origin of a raised Alk Phos
there is no clear consensus on thresholds for further investigation (1)
suggested that if a mildly raised GGT (<3 upper limit of normal (ULN)) then this is a justification for interval retesting
if GGT rises >5 ULN justify consideration of ultrasound if cause is not apparent
My doctor said he's gonna do another blood test mid February, I think it might because of drinking 12 440ml cans of 3.6% bitter Xmas day and boxing day. Let myself go.
Ubwa in reply to
That explains the slightly elevated GGT...
My albumin and globulin are total protein of 74g/L does that indicate my kidneys are ok.
Fibro2021 in reply to
These data rather show that your liver synthetic function is preserved. To a greater extent, kidney function is indicated by the level of creatinine, urea and potassium.
in reply to Fibro2021
Sorry? I don't understand your liver synthetic function is preserved.
Fibro2021 in reply to
I wrote about your liver. Your liver synthetic function is preserved. For me, my total blood protein is slightly below normal but my albumin levels are normal. In general, the level of protein and albumin indicates the ability of the liver to synthesize proteins. That's exactly what I meant.
in reply to Fibro2021
Thanks, mines in the normal range
maco100
I don’t know have the knowledge that others on here have had but what I will say ,having a liver biopsy is no walk in the park. Some people have bad experience, I did and cried when my consultant suggested another one couple of years later.
I would assume that if the doctors you have spoken to don’t think you need one then take their word. Look up the free scan with the trust if that would put your mind more at ease.
in reply to Mcd04
Thanks for the reply 👍
You can pay for one privately namely at the Royal Free Hospital in London. Many of their hepatologists also have a private practice..just look on the website. How long have you had symptoms and which ones? I have many symptoms I do also get headaches by the way. I don't have cirrhosis but Nodular Regenerative Hyperplasia which was only diagnosed by biopsy.
in reply to Alibaba80
I think it could be my pancreas I keep getting stabbing pains in my chest and back and stomach area
in reply to Alibaba80
And I was told Last week I have osteoporosis
Yes could be pancreas especially if you feel discomfort from the front through to the back
How old are you( if you don't mind me asking)?
61
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