Constant bone pain, Fibro scan result not good

[Emcav86]

Hi I have been feeling unwell for like over a year now really bad bone pain, now it’s in top my back and ribs, my LFTS been raised for 3 years now, it’s only I went to rheumatologist who thinks I may have Auto immune hepatitis, due to positive smooth antibody test, referred me to a heptologist which I have Waited 10 months to see!

I had my fibro scan done a week ago and my liver was 343 shows fatty liver and 16.8 Kpa

Im worrying so much , had an ultrasound down and said was clear and a little fatty liver but how can that be?

I had a big heart attack over 3 years ago , called a MINOCA heart attack, clear arteries no cholesterol! have microvascular angina too, so my health isn’t great can’t exercise constant exhaustion.

now with this bone pain is awful and exhaustion generally feel awful, can someone help explain the fibro scan results .

my doctors literally have left me and it’s only my rheumatologist that has pushed for this , I don’t want to be left

many thanks x.

[AyrshireK]

What are your bloods doing just now? If you still have elevated liver enzymes then it's possibly your fibroscan result is falsely elevated because fibroscan notoriously can't tell the difference between actual fibrous tissue and inflamed tissue.

If it is an accurate result then the 343 CAP score would indicate the highest grade (S3) of fatty liver disease with more than 67% of the liver showing fatty change. A kPa score of 16.8 would be on the cusp of F3/F4 - F4 being cirrhosis.

As your ultrasound scan doesn't reveal cirrhotic change it potentially mean it's a false high due to inflammation.

You obviously need a lot more follow up, if AIH is confirmed then there are very effective treatments which your hepatologist might now instigate. You may need a liver biopsy to confirm the diagnosis but your symptoms and the positive SMA do seem to point that way.

If you have Facebook at all then there is a wonderful support group on there - members have helped shape the BLT's page on AIH plus the group has input from some of the top doctors in the UK who work in AIH treatment and research. There are nearly 4000 members who are at all stages of their diagnosis journey from newbies to folks who have had it for 30+ years. facebook.com/groups/AIHorgUK

Katie

[Emcav86 in reply to AyrshireK]

aww thank you for your reply, I have no idea, doctor not got back to me , but the heptologist has my blood tests that they requested to so I will get them Monday, but my inflammation in liver has always been a bit raised, yes but I have seen people been miss diagnosed via ultrasound before,

honestly I feel so unwell, I live with constant chest pain so with this bone pain is absolutely awful, I have a little boy , a little business I have from home that I have had to cut back on as I can’t do anything, I have to nap to,

Well I’m just hoping isn’t cirrhosis I worrying so much 🤦🏼‍♀️ I guess Monday will know more, the woman who done the scan was shocked and asked if I drink, I said no I do not drink don’t smoke don’t do drugs I live. Quite a boring life really lol, I take 10 tablets a day as it is , just fed up really 🤦🏼‍♀️ fingers crossed for Monday, xx

[AyrshireK in reply to Emcav86]

Hopefully you get the answers you need - my hubby was diagnosed with cirrhosis completely out of the blue (2012) and his is deemed due to AIH. He never had any of the typical symptoms of AIH and wasn't ever started on the meds as his condition was a-typical and deemed burned out. He's on awaiting a liver transplant at this time.

His cirrhosis is obvious on ultrasound - he too is a non-drinker, non-smoker and always kept himself very fit as a long distance walker. Sadly, AIH can be triggered by any number of issues - other health conditions, medications, environmental factors etc.

As regards bone pain perhaps ask whether you need a DEXA scan to check your bone density. My hubby has osteopenia/bone thinning and is treated for this.

Katie

[Emcav86 in reply to AyrshireK]

ohh so sorry bless him, yes this has all come from being in so much pain with my bones, yes it’s just very strange that it didn’t show on ultrasound, I guess we will see Monday.

Can he come back from his cirrhosis ? Or is it or far gone now?

Hopefully I will know more Monday, thank you so much for your post. Xxx

[AyrshireK in reply to Emcav86]

No sadly his has gone too far and he's now awaiting liver transplant - been on the list for 6 weeks.

[Emcav86 in reply to AyrshireK]

Oh no wow that’s really sad, gosh I hope he finds a match, do they do living match transplants? Family members ect?

So that’s from AIH so scary, I’m dreading my appointment tomorrow feel sick about it,

So did he not have any symptoms at all with AIH ? X

[AyrshireK in reply to Emcav86]

Yes live donor is possible but we have no one suitable as his own family have other health issues plus are too far away and it's not an option for me to donate being as I am his carer, driver etc.

As I said his was a very non typical presentation. It may have been triggered years ago but never presented any symptoms until he had decompensated cirrhosis. In most cases they can put treatment in place before it gets to this stage.

Let us know how you get on.

Best wishes, Katie

[Emcav86 in reply to AyrshireK]

aww I hope he finds one real soon, hope the wait not to long, of course thank you, wish you luck to xx

[Grassroots112]

Sorry you are experiencing these issues right now and while I can’t comment on any bones issues you’re having, I can tell you now my liver cap score was over 360 and my fibroscan was 22.2kpa but after a year of going sober and a healthy diet that’s now down to a cap score of 144 and a fibroscan of 9kpa so you too can lower yours and improve your liver’s health. I do suffer with joint pain, aches and pains and neuropathy but my doctors seem to think it’s because of my alcoholism and not so much liver related. I still have fibrosis which is scary enough as it can quickly lead to advanced liver disease or cirrhosis should I start drinking again for example. You have to remove what’s causing your fatty liver and I’d also look deeper into the medication you’re taking as that can cause damage to the liver. I wish you well going forward and I’m sure you can get that cap score and liver stiffness down, good luck.

[Emcav86 in reply to Grassroots112]

Hi thanks for your reply, I don’t drink nor smoke or drugs, so I’m shocked how this can be, but my rheumatologist this might be autoimmune hepatitis, so no idea.

doctor took me off arvostatin 3 years ago after precautionary after a heart attack, he thought could have been that but obviously not that,

Oh bless you, you have done amazing well done!! Have to see what they say but hopefully something can be done.

Thank you xxxx

[Grassroots112 in reply to Emcav86]

Fingers crossed for you, and hopefully the doctors will get to the bottom of things for you and you can definitely reverse the fibro scan results.

[BritishLiverTrust8 Moderator British Liver Trust]

Dear Emcav86

If you would find it useful to talk things over, our nurse-led helpline is open Monday to Friday from 9am to 3pm on 0800 652 7330 (excluding bank holidays)

Best wishes

British Liver Trust

[Emcav86 in reply to BritishLiverTrust8]

Hi thank you might do depending on results today thank you x