so confused and scared

[Millyjack]

hi there I don’t know if anyone can offer any help as I’m completely confused. Four years ago I had just a routine blood test and my liver function tests were through the roof. I had a liver biopsy which came back as clear so my gastro doc said it’s NAFLD and to lose a bit of weight and that was it. Since then all my blood tests have been normal including my latest one a month ago. However my doc ordered a fibroscan and an ultrasound recently which apparently both show I’m borderline cirrhosis and he then tells me that fibroscans aren’t always accurate! All he’s saying is 6 monthly ultrasounds to keep checking on me. I’m so confused, how can I have borderline cirrhosis but feel well and have normal blood results? I’m going mad with the worry x

[pushthrough]

Hey Millyjack. If this was a gastroenterologist that gave you that diagnoses and not a liver specialist- hepatologist, I would try to see one. Since the liver is such a complex organ you need the hepatologist to run the tests. I found most gastro docs don’t know nearly enough about the liver. Fibroscans are not always accurate as your doc said. It can be thrown off my your weight, liver swelling, the tech messing up etc…. If you do find out you are borderline from a liver specialist you might be able to reverse it just enough to get to f3 since it’s from nafld. Don’t touch alcohol, eat healthy and excercise.

G.

[Millyjack in reply to pushthrough]

thank you pushthrough. Yes it’s a gastroenterologist and I’ve been wondering just how much they know as I just can’t seem to get a definitive answer. The problem seems to be that that’s all you get referred to on the NHS, I’m not sure how o get to see a liver specialist without paying for it? x

[Kristian]

The answer to your question is actually really simple. Even with a fair degree of scarring the liver can work pretty well. It does everything your body needs it to do. Essentially it has lots of reserve capacity. So, it actually takes quite a lot of damage before you really start to feel it.

Remember also fibrosis is generally reversible if whatever is causing it can be removed. Cirrhosis can also be either slowed down or stopped for the same reason.

Abnormalities in blood tests tend to appear when any disease is active, I.e. damage is occurring at the time of the test. Many things that cause long term liver damage may not be constantly active, so any damage can go undetected for a long time. It's one of the reasons many liver diseases are known as silent diseases.

As liver disease and scarring progresses then the liver does start to struggle and the tests that detect that are a bit more reliable indicators of liver performance, things like albumin and sodium start to get affected as well as clotting factors. Low blood cell counts can also be seen, as can an increase in bilirubin. These abnormalities will also be constant rather than sporadic. In early stages of liver disease these test may come back in the normal ranges. Again, because the liver is managing to perfectly adequately keep doing its thing irrespective of any damage present.

What your gastro doc is telling you is also true, just reading the posts on here you can see the variability with fibroscans. Whilst gastroenterologists may not always be absolute experts on things affecting the liver, they are still generally very knowledgeable about them and the protocols that should be followed. Fibroscan is a good supplemtary tool, especially for picking up early stage potential changes that aren't seen on ultrasound. It's at that stage where it's easiest to make lifestyle changes or other changes that can completely reverse any liver damage that may be present. For long term monitoring to help see if cirrhosis is present, then ultrasound is probably a bit more reliable. Fibroscan may still have its place, but ultrasound is the pretty common protocol that's followed.

Hope that helps.

[Millyjack in reply to Kristian]

Thsnk you so much for replying Kristian 🙏 that does all make sense. I guess what’s really worrying is the just not knowing for sure how far along I really am. I’m living in constant dread of the worst happening within the next few months! x

[Kristian in reply to Millyjack]

Hi again, A couple of more things that should be reassuring. Liver disease generally progresses slowly. You are still in a relatively early stage of any damage manifesting, so the likelihood of anything sinister or significant happening any time soon is very slim indeed.

[Millyjack in reply to Kristian]

aw thank you so much for the extra reassurance Kristian x

[Iro1]

Stop worrying I was borderline, the six month check show he is doing his job.Focus on lifestyle change

[Millyjack in reply to Iro1]

Thank you Iro1 🙏

[Iro1 in reply to Millyjack]

The phrase 'cusp of cirrhosis' was used with me loss of about 8 kg brought my fibro down from 10.8 to 8.8. The specialist liver nurse helpfully pointed out that I had not actually had cirrhosis but was f3/4 and was now f2It is great news they are montoring you any abnormality will be picked and you will get feedback on improvement

[Millyjack in reply to Iro1]

thank you 🙏 that’s brilliant news for you!

[Iro1 in reply to Millyjack]

And for you NO ALCOHOL ever again as well

[Millyjack in reply to Iro1]

I don’t even drink! I haven’t drunk alcohol for donkeys years. That’s what I struggled to get my head round at the beginning until I started to research it all.

[Iro1 in reply to Millyjack]

Feel free to message me focus on mental health read my backstory about the dangers of anxiety.

[Millyjack in reply to Iro1]

thank you so much for your help and replies 🙏

[Iro1]

I just mention because any form of impediment to your liver is unwelcome. I am glad your specialist is on the ball and has you under surveillance mine did not bother and I had 3 years of thinking I had cirrosis.After much persistance I actually spoke to the specialist Nurse who understood the issue and arranged a fibroscan within a weel.

KPA 8.8 you DO NOT have cirhosis, she said.

For the majority on this forum this is something you will die with not from.

Live a happy life, change your lifestyle, you will die one day and your scarred liver will just be a speck of dust on the crematoria wall.

The happy memories of those you leave behind will persist.