Not been officially diagnosed but… - British Liver Trust

British Liver Trust

36,528 members17,972 posts

Not been officially diagnosed but…

Lester14 profile image
26 Replies

Hi I’m new on here been a big drinker since uni days (25 yrs now) and had a few tests. Bloods ok apart from significantly raised GTT level that has started coming down. Ultrasound didn’t pick anything significant up. But I have various symptoms (dark pee, weakness/fatigue, and what I would call a thick abdomen, which docs have so far insisted isn’t Ascites). I recently turned down an mri scan because quite frankly I think I have it and don’t want it confirmed. Generally I feel ok and wouldn’t say I have much in the way of debilitating symptoms. Gave up alcohol 6 weeks ago. Any advice as to what I should do next greatly appreciated.

Written by
Lester14 profile image
Lester14
To view profiles and participate in discussions please or .
Read more about...
26 Replies
AyrshireK profile image
AyrshireK

You should have had the MRI if it was offered, it would more than likely have cleared you of any liver issue based on your limited symptoms and fairly normal bloods and that way you wouldn't have this ongoing worry.If indeed you do have a liver issue it would have picked that up and enabled doctors to put the appropriate monitoring regime into place going forward.

Without those results you will remain in limbo i.e. do you have it or don't you.

GGT can be elevated by a whole lot of different issues - fatty liver, bile duct issue etc.

Dark urine is commonly just associated with dehydration or even things you've eaten - in advanced liver disease it's because bilirubin is elevated and in your case you say your liver bloods are normal so it's unlikely that your liver is causing this issue.

Your ultrasound would have identified whether you had fluid present in your tummy (ascites).

The best course of action is to remain sober, take up a healthy diet and exercise regime and see if the few symptoms you have disappear. If they don't then take up the offer of any tests so you at least know where you are at and any monitoring regime can be put in place.

Katie

Lester14 profile image
Lester14 in reply to AyrshireK

Thanks for the reply. The doc said I had I part bilirubin in my urine but bilirubin in blood apparently ok. I’m a little bit in the ‘wait and see’ stage and due to go on holiday soon so didn’t want a definitive answer before then

Lester14 profile image
Lester14 in reply to Lester14

In my case ggt definitely alcohol related as I was drinking ridiculous amounts until. 6 weeks ago

Cat-B profile image
Cat-B in reply to Lester14

So a holiday is more important than your health? I think you need to have a good long think about your priorities.

redpoint72 profile image
redpoint72

hello there. as Katie has said,you really should have taken up the offer of an mri scan,a missed opportunity. that could have pointed you in the right direction. its best to know whats going on,and while I fully understand finding out results can be scary,at least you can head in the right direction. gamma gt,can fluctuate an awful lot....i have esld. mine at worst has been heading for 800....ive not drunk liquor in over 3 years.....but mine can still be very High.....my gastro consultant says its most probably down to the pain killers I take,for sciatica. all the best chris

pushthrough profile image
pushthrough

My advice is go back and beg that Dr for an mri. If you do have it, Not knowing what stage your at and whether or not you have varices/portal hypertension is dangerous.

Lester14 profile image
Lester14 in reply to pushthrough

Hi thanks. So I would have no idea if I have varices then until they potentially bleed?

pushthrough profile image
pushthrough in reply to Lester14

If you have cirrhosis they typically have you get a gastro and endoscopy to check for them. I had absolutely no idea I had them until the gi doctor. From there she sent me to a specialist because it typically indicates cirrhosis. So to answer your question yes, many people have them and don’t know until they start bleeding. Then you have to go to the emergency room.

Lester14 profile image
Lester14

What would be my prognosis if I did have advanced cirrhosis at age 44 and with no significant debilitation as yet?

AyrshireK profile image
AyrshireK in reply to Lester14

This is exactly why you need to find out whether you actually have anything to be concerned about or not. Cirrhosis can exist in two distinct phases - compensated where the the liver is still able to do all it's major jobs (the liver does 500 different tasks in the body) and decompensated where the liver is seriously struggling - even to do it's most important jobs.

In the compensated stage you may not have many symptoms or you may have many smaller ones which occur with other illnesses too, bloods can be pretty normal at this stage as the liver is coping. In decompensated/advanced cirrhosis the liver is seriously damaged and no longer coping with even it's most important of functions and bloods will often be seriously deranged (bilirubin, albumin etc.) and the more life threatening symptoms come into play - ascites, bleeding varices etc.

Before the liver reaches cirrhosis stage it has to go through earlier stages (particularly in light of alcohol related liver disease).

Normal liver - alcohol related hepatitis/liver inflammation, fatty liver, fatty liver with inflammation leading to fibrosis (F1, F2, F3 and F4) - F4 is cirrhosis.

Once the liver reaches full on cirrhotic then it is difficult to return it to full health, yes some of the fibrosis may heal but a cirrhotic liver can never be 100% healthy again. Earlier stages are fully reversible providing the agent/condition causing the damage is removed.

My husband was diagnosed with decompensated cirrhosis in April 2012 but has now become compensated, he has many of the symptoms of cirrhosis detailed on the BLT page on the condition but thankfully currently none of the signs of decompensation. His consultant has patients on his books who have had a cirrhosis diagnosis for 20+ years who are no where near deaths door nor transplant so even if you did have cirrhosis it isn't necessarily all gloom and doom.

But until you actually know what's what you can't move on with living your life. My hubby has 6 monthly ultrasounds and bloods, annual endoscopies as he nearly died from a variceal bleed and sees his consultant fairly regularly. He was also assessed & listed for transplant in 2014 but delisted as his condition improved.

You really need to find out the issue, you may be worrying unnecessarily that you have more advanced issues than you really have.

The BLT guidance on alcohol related liver disease and the page on cirrhosis may be useful for you.

britishlivertrust.org.uk/in...

britishlivertrust.org.uk/in...

If the MRI is now off the table perhaps see if a Fibroscan machine is available in your NHS trust, this is a simple scan which can give you an idea as to actual fibrosis present in your liver and also what the fat content is.

Katie

mtk0925 profile image
mtk0925 in reply to AyrshireK

Just a question Katie do the ultrasounds see your husbands cirrhosis when he has them every 6 months

AyrshireK profile image
AyrshireK in reply to mtk0925

Yes, very clearly. Every single ultrasound has commented on the presence of cirrhosis and often they have been done by different sonographers and reviewed by different radiography doctors.

mtk0925 profile image
mtk0925 in reply to AyrshireK

Thanks that gives me a little reassurance that mine would pick up. I have a little fat but they said it’s gone I had pre eclampsia and then HELLP did a number on me plus I gained a ton during pregnancy

pushthrough profile image
pushthrough in reply to AyrshireK

That’s interesting Katie. That was the first test I had and not a single doctor from the radiologist to the GI doctor mentioned it. It took over 8 months of tests to get diagnosed. They just said I had an enlarged liver.

G.

AyrshireK profile image
AyrshireK in reply to pushthrough

In my hubbies case they aways comment coarse dense echo texture, irregular liver contour. His liver has been described as shrivelled and shrunken - like a raisin or sultana being the shrivelled equivalent of a grape.

mtk0925 profile image
mtk0925

It’s good news that the scan did not pick anything up but If you still have symptoms then definitely do the MRI to make sure as it seems more Than the ultrasound

Lester14 profile image
Lester14

Thanks all. I’m due on holiday very soon but will try and get the mri done after this

Cat-B profile image
Cat-B

Get the MRI ! You can not self diagnose and for goodness sake’s stop using Dr Google. 2nd you don’t want liver disease, it horrible. 3rd if your urine I’d dark it’s most likely due to you not drinking enough water. Good luck, listen to your doctors!

Flowergirl24 profile image
Flowergirl24

Re book the scan now. It confirmed what I had in the end and my life saving transplant.

Ewife profile image
Ewife

Hello! You need to get more answers from the Dr and tests. You don't sound like you are too poorly yet but it will make such a difference to catch anything before it becomes more obvious. You stand so much greater chance to reverse things. Count yourself extremely lucky and it seems if you listen to your Drs and loved ones you have a second chance at living. Liver damage in early stages is reversible. There are many on this forum who wish they had listened and acted when they had a scare like you are currently having, and now it's too late for them.

I hope you have a lovely holiday, but you will need to stay strong in your resolve to remain abstinent. Plan with this in mind, ask your companions to help you - as I'm guessing it will be hard. But life without alcohol can be fun - it's only a mindset that alcohol does any favours.

Wishing you all the best,

Ewife

drittz78 profile image
drittz78

Not sure what to say. The fact you turned down an MRI is head scratching. I don't mean to be harsh but if your not willing to take the advice of the doctors then I'm not sure what answer your expecting from here. You need to get the MRI scan and also take your health into your own hands. If your going on holiday to get plastered then you need to have a word to yourself (if I've read that wrong then I apologise) as the alternative is a scary path your taking.

Lester14 profile image
Lester14 in reply to drittz78

I’m not going on holiday to get plastered. Just didn’t want a sentence hanging over my head. I’m not poorly yet but have a lot of symptoms that fit

drittz78 profile image
drittz78 in reply to Lester14

I would imagine you are probably too young for Cihrosis as the liver can take a hammering before serious issues. Don't take that as a carry on doing what your doing. Follow the advice of the doctor and get it checked out. I can say from experience to get your drinking under control.

in reply to drittz78

I was 26 years old when I was diagnosed with decomp cirrhosis with nothing wrong with my liver before I started drinking, I’m also in a support group with young people with cirrhosis, there is far more young people who get it then people ever think!

drittz78 profile image
drittz78 in reply to

That's young to get Cihrosis. I'm really sorry to hear that.

Ubwa profile image
Ubwa

So bloods fine US fine, wont have MRI, have dark pee (dehydration most likely, will explain fatigue too) and you immediately go to worst case...seems like I need to bring out..

When you hear hooves think horses not zebras ;).

Yes you should cut down/stop drinking if that heavy but everyones different, what can damage one persons liver in 10 years may take 30 years to do to yours...

Get the scan done ( I am so confused by people that don't want to help themselves..), no point running if you have caught the start of something and can turn it around...although if you had severe damage between your bloods and US something would more than likely show something.

You asked "What would be my prognosis if I did have advanced cirrhosis" - if you had "advanced cirrhosis" you would know about it. What are these symptoms you speak of or are they all in your opening post? A fat stomach for someone who's drunk loads has a name...beer belly for a reason ;)

You may also like...

I been diagnosed with cirrhosis

two week they come down to 246. I am really scare. I feel ok apart be little bit weak and...

Just been diagnosed with fatty liver disease

my doctor presumed it was alcohol fatty disease but I don’t drink alcohol I’m 25 and I’ve probably...

My son has just been diagnosed with decompensated liver disease.

has an opd app to have endoscopy but he has not received an appointment. Should have had it last...

Has anyone been diagnosed with AIH wrongly?

it was a possibility of dying. He doesn’t have any symptoms at all and it’s not in the family on...

BLT is official abbreviation in my house

it was short for bacon lettuce and tomatoe, just having a laugh to me self so I shared it with you...