Liver Fibrosis - panicking

[Glitterinthegrey76]

I've name changed for this, as it's a bit outing (have discussed with close friends) and don't want it linked to my previous comments and posts.

I had laprascopic gallbladder surgery recently (totally successful). However, during the surgery, the surgeon has seen that I have "significant" fibrosis of my liver. He has referred me back to my GP for more blood tests. He was very clear with me that I must insist apon a referral to Hepatology for investigation.

My lovely Mum died of autoimmune liver disease a decade ago at the age if 57. When I told the consultant that he went quiet and then repeated that the fibrosis is significant, and must be investigated.

I'm terrified.

I'm not sure what I'm asking, for reassurance, others experience, maybe?

Hopeful bump?

I don't have any experience, but didn't want to leave you without any answer.

It's totally understandable that you are scared. Anyone would be, especially when thinking about what happened to your mum. The consultant could have gone quiet because he was contemplating what the outcome could be, he isn't really in a position to say everything is ok at the moment. That doesn't mean everything won't be ok, it just means things are uncertain right now.

Its positive that it was noticed and they can do further investigations. Lean on who you need to for support. Also remember treatments evolve and you won't necessarily have the same outcome as your mum.

Sending you best wishes.

@Floopani thanks so much for replying, I really appreciate it.

I'm really lucky to have a lot of support at home.

My liver function tests have always been fine, other than once when they were raised but then went back to within range. That's got to be positive. I do always have raised bilirubin, but was told that was Gilbert's disease and nothing to worry about.

I can't bear the idea of my kids having to see me go through what I had to watch my Mum endure. But she was diagnosed with very advanced disease.

That does sound positive to me, and that you have been keeping an eye on yourself so know that this is something newer rather than advanced.

Completely understand that you don't want your kids having to go through what you went through. My mum is disabled, and has been for a long time, due to a degenerative disease. Its always in the back of my mind that it could happen to me, so every time something feels off or I feel ill or in pain in some way I start to worry and think about my child going through what I did.

Really hope you get some answers soon.

Has your GP initiated the process of testing/referral? Did the surgeon put his observation in writing to the GP?

Do you mean autoimmune hepatitis or one of the others? I was under the impression that elevated bilirubin was the one most likely to cause concern about damage, so perhaps they need to revisit their response to that in light of the additional information.

There's been a lot of research in the last decade. They have specific scans now that can measure fibrosis without biopsy.

Generally, if they're investigating while you're asymptomatic because it was picked up by chance during another test/procedure then prognosis tends to be better and there is time to plan if interventions are required.

Stay off Google but do ensure your GP refers you and makes clear your family history.

British Liver Trust website is a less scary source of info than Google. If you feel information would help you.

But I'd focus on the immediate goal of follow-up test and referral. That's the only thing within your power to influence and anything beyond that is getting into conjecture and speculation.

Thank you for replying.

I've not yet heard from my GP, but only had my gallbladder surgery a week ago. The surgeon noted his findings on my discharge letter, but said he was also writing to my GP.

My Mum had PBC. Although symptomatic, her illness was discovered by chance because her GP noticed she was slightly jaundiced. She'd been putting the symptoms she was having down to her time of life. She already had stage 4 cirrhosis.

I will have a look at that website, thank you.

You should definitely be referred for further investigation. Ideally your GP can refer you straight away to a hepatologist (liver specialist) but in some areas, the GP will have to jump through umpteen hoops to get the referral accepted, so you may have to have a load of investigations ordered by the GP first. Make sure you tell your GP about your mum's diagnosis.

You will probably be given a fibroscan, which as a pp mentions, can measure the level of fibrosis without need for a biopsy.

You should get lots of blood tests -- all the usual things like liver function tests, full blood count etc etc, but also a full autoimmune screen, and a screen for various possible liver infections, and possibly other things like checking your copper levels. There may well be others that your GP will want to check.

Are you taking any medications for anything? If so, someone needs to look closely at them and make sure you're not being given anything that makes matters worse.

And of course, you need to avoid alcohol. It's a major cause of liver disease. Also, if you're very overweight, you should really try to do everything you can to lose as much spare weight from around your belly as you can (I know, it's not that easy or we all would!) Non-alcoholic fatty liver disease or NAFLD is increasingly found and in its most advanced form can cause cirrhosis, which is a step on from fibrosis.

But the most important thing is that the problem has been found, so now something can be done about it.

Oh and the surgeon probably went quiet because he was hoping you weren't going to ask him any difficult questions about possible causes! Surgeons are good with scalpels, they aren't experts on how the liver works!

@mauvish thank you. No, no medications. I'm very slightly overweight (BMI of 26.5) but I carry my extra weight on my hips and bottom rather than round my middle. I drink alcohol sometimes, maybe a couple of times a month but I never get drunk. Obviously I won't drink at all now.
Thank you for all the information around tests, it gives me a good idea of what to expect.

I am really sorry for what happened to your mum. I can't begin to imagine how much more difficult it must make this scenario for you.

As I understand it, there's been lots of promising research on PBC in the last decade and the prognosis is really quite different to a decade ago - and improving all the time by quite a significant degree.

There is also a UK charity for PBC specifically who may be able to support if you need it.

https://www.pbcfoundation.org.uk/

Please don't panic (I know it's easy for me to say, but I'm going to ask you anyway).

@user628468523532453 thank you so much. I'm trying very hard not to worry, especially as nothing has even been diagnosis yet.

I'm going to give my GP until the end of the week, and then contact them if I've heard nothing. I've also been looking into private fibroscan, we don't really have any spare cash at the moment, but might be worth it for reassurance/peace of mind.

but might be worth it for reassurance/peace of mind.

I'm not sure about that. A fibroscan won't show you a cause for any scarring, and without that, no treatment can be suggested. And after all you already have the news that there is fibrosis - and that's the main thing that the fibroscan will tell you. I don't think it will necessariloy give you any reassurance.

I think it might be better to wait until you see the liver specialist. If there's a long wait to do that, maybe you could pay to bring that initial appointment forward rather than pay for a scan? I suspect that would be cheaper too, especially if your GP will do a batch of screening tests on the NHS (this shouldn't be any problem) so you can show the consultant the results.

You're probably right, I just want to feel like I'm doing something.
My GP has received the letter from the consultant, and has sent off the Hepatology referral, so that's positive.

I agree with @mauvish , I don't think paying for a fibroscan would achieve much. It's a useful tool once you know what disease (if any) is being managed.

Your brain is faced with a possible threat so your body is being flooded with adrenaline, which is driving that "I need to do something" feeling. That can sometimes push us to do the wrong "something" in a situation like this.

I am not convinced you'd gain much by paying for a consultant appointment either at this stage. They won't be able to give you any answers until more tests have been done. It's unlikely you'd get any firm answers or diagnosis from a single consultation (NHS or private).

If it is PBC it will take a bit of time to work through all the tests and some of them might be have to be done at specialist labs rather than your usual local lab. I'd imagine it would be a series of appointments while they investigate.

It's good that the referral has already been made. If you can, sit tight for now and see. It might not take as long as you fear for the wheels to turn.

I would also observe that doctors can sometimes be a bit severe when they're trying to make sure patients follow their advice. It doesn't sound like this is an urgent referral? That is an important distinction you should take some comfort from.

You could go 4 a liver mri with contrast

Vista health - 500 gbp

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I was in exactly the same position. Went in to get my gallbladder removed and came round to be told that I had liver damage. After a couple of scans, I got diagnosed with AIH. A course of steroids and now permanently on azathioprine and it's under control and apart from tests every 6 months, I'm continuing as normal. I'm under the hepatology dept at the hospital and they really look after me.

Please don't worry although I fully understand why you are. Get the tests done to find out what you are dealing with and take it from there

But the OP doesn't need imaging to show whether she has any fibrosis. It's already been seen. And all the scans in the world aren't going to look at WHY the fibrosis has developed, or what treatment options there are going forwards.

Sorry, meant scans and blood test.

@OhFFS! thank you for sharing your experience!

I'm really worried, just want the Hepatology appointment to come through. I'm not great with patience! I'm continuing to get the upper right abdominal discomfort that I had before my gallbladder was removed, it's a constant reminder that something isn't right.

I was the same. The good thing was that they did the biopsy when they saw the state of my liver so didn't have to have that done separately.

I agree with you that it's the waiting that is the worst bit. I'm 13 years in now and the cirrhosis hasn't got any worse and all my stats are stable. I work (very) full time, rush around after the kids and am on several external committees so always busy. It's a pain for holiday insurance etc and need regular blood tests and am always catching colds etc due to the lowered immunity caused by the azathioprine. It also means that I get all the extra covid jabs (had 7now) as do all my family to protect me. I can get extremely tired but that's partially my fault with everything I do.

Clearly some people have it worse than me and some even require transplants but fingers crossed, I will keep going as I am.

I really want a biopsy
I want them to check it 4 sure
So much anxiety

From what I remember of mum getting liver biopsies, they are super invasive and painful. Fibroscan is much better although wouldn't have been available when pp was diagnosed I don't think (certainly it wasn't when my mum was alive).
I'm hoping to avoid biopsy, because I'm a wimp, although that may not be possible.

@OhFFS! thank you so much for your reply, it's really reassuring. Although obviously I don't have a diagnosis yet, it's good to hear positive stories and that a liver disease diagnosis doesn't necessarily mean the worst.

At least they have caught it before hopefully too much damage is there. I don't think I knew they had done the biopsy initially. I did think it was weird that my consultant called me on the Sunday night to check I was ok and taking painkillers. He seemed quite surprised when I said I didn't need them

My grandmother died of liver cancer so all these tests are great as it means we know that isn't an issue. My AIH was triggered by some other medication . Feel free to pm me if you have any questions at any point

So, I've got a Hepatology appointment... in nearly 6 months. Feels so far away when I'm so anxious.
Blood tests being done next week, which is something I guess.

I'm now reconsidering whether to try to get a private fibroscan appointment. I've no idea how to go about it, and whether I'll need a letter from my GP first? We haven't really got the money. But I just feel like I need to know how bad the fibrosis is.