New diagnosis

[Buddy73]

1 year ago I had a reading of 5 on the fibroscan, a few months ago I was getting a scan on my stomach and they noticed my liver was enlarged , sent for another fibroscan and the reading is now 19.5, I was to.d I had liver disease and was sent home with a load of leaflets to read, I have since had another appointment this time with a specialist who says he does not know why I have such a high reading as my bloods don’t reflect this so no have to get a biopsy done, I have felt so ill for months and have recently been diagnosed with rheumatoid arthritis as well, I am 51 and very rarely drink, I have a lot of pain where my liver is but doc says that this is normal, some days I can barely drag myself out of bed, no one is telling me anything, from what I have been told it’s already at cirrhosis and stage 3 whatever that means, will I always feel this ill or does it get better?

[WoogieBoogie]

I wouldn't unnecessarily worry as biopsy is gold standard so try and keep calm until then. The fact you had wildly varying fibroscan results is maybe reassuring. Maybe you should have the more sensitive blood tests (eg ELF or maybe Hyrulonic Acid) as they will give further insight into level of fibrosis. My fibroscan was 10.9 but my biopsy came back as only mild steatosis. Best of luck to you

[Hidden]

I've never heard of a liver going from an apparently healthy condition to stage 3 cirrhosis in only a year so wait until the problem is identified before assuming the worst. It would be most unusual for such a big deterioration in the health of your liver to happen in only a year so your liver may not be cirrhotic.

The change from a FibroScan score of 5 a year ago to the recent score of 19.5 is massive & the second score may reflect whatever has caused your liver to become enlarged rather than your liver having gone from healthy to cirrhotic in such a short period of time. FibroScan scores are notorious for being inflated in situations such as the liver being stressed at the time of the scan so the second scan score of 19.5 may not be accurate.

Once the biopsy has been performed your consultant will hopefully be able to give you a diagnosis. In the meantime avoid liver stressors like drugs & alcohol & focus on looking after your liver by getting plenty of rest, eating a healthy diet & trying not to worry too much. When I felt horrible almost two years ago I was terrified that I had cirrhosis but it turned out that my liver was stressed from overuse of painkillers & once I made lifestyle changes my health improved. Hopefully your story will be similar to mine or at least not as bad as your liver going from healthy to cirrhotic in a year.

Your liver enlargement has been caught early & may be able to be reversed once the cause is identified provided it's not cirrhotic. My mother had an enlarged liver for many years and lived to age 72.

[Buddy73 in reply to Hidden]

Thank you and they have re done the fibroscan another 3 times just to double check but it’s always the same reading , I appreciate all your suggestions as I have to admit I’m truly terrified , and no one seems to be able to give me a straight answer, the specialist did say that there are drug trials that I may be able to get on, the tiredness gets me down, I’m exhausted all the time but yet I can’t sleeo and I have the itching which drives me mad, but the fact that your father managed to live with this condition gives me hip , so than you

[Hidden]

Hi Buddy

None of us can say whether it will get better, or even worse as we don’t know your background medical history nor are we doctors (although there may be one or two incognito- who knows 😁).

All I can say is you should do what I didn’t do and that is read the leaflets. I thought it was probably too much trouble at the time - I can’t remember 👎🏻. However I did give up drinking because I was told or else.. I didn’t like the sound of “or else” 😁.

I was never told ANY blood result values and I never asked. I think it just makes you worry, maybe unnecessarily. My reasoning was that the doctors/consultants should know lots more than I do, or ever will do, so I just went along with what they said or advised. Long journey, but worked out great for me in the end.

Good luck 👍

Miles