Worried Sick

[TeaBag83]

Hi all

I posted here a few weeks ago about my Fibroscan scores. 10.3 to 5.5 (scans 10 months apart and a fantastic reduction by abstaining from alcohol) then a score of 7.2 just 6 weeks later (I know it's still in the normal range but I was concerned about the increase in such a short space of time and the cause).

I've now had a blood test and am worried sick. The doctor wants to repeat the blood test in a couple of weeks but I'm beside myself in the meantime. Nobody will tell me anything and now I've gone down the rabbit hole of google and am convinced I have cirrhosis or advanced fibrosis.

As a brief recap of my situation:

I had Glandular Fever in June 2023 which caused significant increase in liver enzymes which was discovered through a blood test. These enzymes had 'significantly improved' when I was re-tested 3 weeks later but there was still one enzyme which was raised but I was not told which one or by how much. The doctor said something about the enzyme which is increased by an autoimmune disease but she was vague.

These tests resulted in my GP asking me about my alcohol consumption (too much - around 35 units a week - 2 pints of beer everyday after work - I'd done that for years without days off. ) So I was sent for a Fibroscan which came back 10.3 kpa. I also had an ultrasound which showed a fatty liver. The ultrasound showed my liver was 'smooth'. I changed by lifestyle significantly by cutting out alcohol completely and getting more exercise.

At the end of July 2024 I went to a Liver Trust Roadshow and had a Fibroscan in one of their mobile units. The result was 5.5 kpa - I was delighted. I asked the practitioner conducting the fibroscan if I would be able to drink alcohol in moderation now that my liver seemed to have recovered (i.e. 14 units a week) or whether I have to abstain from all alcohol forever. As I had another NHS Fibroscan coming up in 6 weeks time (the annual repeat) she suggested that I could drink VERY moderately e.g. 7-8 units a week to see if it adversely affected my liver at the next Fibroscan.

I was still VERY cautious with this advice so I actually only drank 3 alcoholic drinks in this entire 6 week period (spread out over the weeks)

At my next Fibroscan 6 weeks later (September 2024) my reading was 7.2 KPA. This was a significant increase so I was very worried and decided not to drink again. Could those 3 alcoholic drinks have caused the increase?

Following this, I had a blood test (last week) which showed slightly low sodium function (132 mmol/L when the normal range starts at 133 mmol/L) and high Bilirubin levels (my score was 30 when it's supposed to be less than 21). All the other scores were in the normal range. My GP has booked me in for a repeat blood test in a couple of weeks.

I am very very worried about this - what does a high Bilirubin score mean? What is causing this? From what I can find online it is a sign of my liver not working properly. I was so pleased when I got the 5.5 KPA reading in July as I thought my liver had completely recovered and my liver is now 'normal' but now it looks like there is more serious and longer lasting liver damage.

Why would Biblirubin be high when all the other enzymes are normal? Could it be Gilbert's Syndrome (I remembered what the original doctor said to be about the autoimmune enzyme before I had my first Fibroscan last year). But this would be a bit of a coincidence seeing that all the evidence points towards the fact that I did/I do (?) have alcohol related fibrosis.

I have been given zero info and advice from my doctor. Even after my first fibroscan when the score was 10.3kpa I was told by the nurse doing the scan to 'cut down' on alcohol. It was only through google that I found out I should totally abstain! Why don't they tell you anything?

Any advice about any of this gratefully received!

[MINTVCX]

"Why would Biblirubin be high when all the other enzymes are normal? Could it be Gilbert's Syndrome (I remembered what the original doctor said to be about the autoimmune enzyme before I had my first Fibroscan last year). "

Yes, that's how Gilbert's Syndrome is usually diagnosed. You can make a genetic test to confirm it. But check this with your doctor first.

But this would be a bit of a coincidence seeing that all the evidence points towards the fact that I did/I do (?) have alcohol related fibrosis."

I think considering all your Fibroscan results I do not think you have any significant fibrosis. Your story is somehow similar to mine (check my profile here) but of course every case is different and you should follow your doctors' instructions in the first place.

[TeaBag83 in reply to MINTVCX]

Thanks for your response. I hope it is Gilberts Syndrome and nothing more serious. But that wouldn't explain the slightly low sodium. I know it's only very slightly low but unless you're elderly, having abnormal sodium levels is very rare outside liver disease patients.