A really long post, I’m sorry.

[Booksand]

Hello, this might turn into a ramble, so apologies in advance.

My husband was diagnosed with F3/F4 Bridging fibrosis about 6 weeks ago. It’s been a very emotional and scary few weeks made worse by lots of googling! I found this forum this week, and since reading, feel a lot more positive going forward.

The only thing that confuses me is, his KPA is 21.5 and his CAP 290, but the hepatolgist who scanned him, confirmed that it isn’t yet cirrhosis and can still be reversed at this stage - she actually said this on the phone when my husband rang her to ask about his scores because I was so worried after googling. He then got a letter through the post confirming what she said, and that it was F3/F4 bridging fibrosis. But everywhere I have read on here and google says that his KPA score should be cirrhosis?

A friend of the family also has a fibroscan by the same hepatologist specialist nurse the same week and it was confirmed she has cirrhosis and she has since been called in with further appointments made to best deal with it etc (I don’t know what her scores are) whereas my husband was just told he must loose weight and was recommended the Mediterranean diet and been told she will see him again in 6months to a year.

My husband does have psoriatic arthritis and for a brief period was on methotrexate which he was soon taken off as it affected his liver. Research on his current medication suggests no affect on the liver.

He is very 35 and overweight, carrying alot of his weight around his stomach and his BMI is definitely over 30! These are all things, I’ve read, that could affect the accuracy of his KPA score, which I’m praying means it is not as high (although I do understand this isn’t a guarantee) He also wasn’t told to fast before and grabbed a meal deal on the journey up which included sandwich, crisps and a bottle of coke - so again I’m praying that this also affected his score in being higher than it actually is. Also, a band 7 Radiologist told my sister in law who is a nurse, that he has no faith in fibroscans, and he prefers going by blood tests and ultrasounds - my husband has had these, and while they have said fatty liver, they haven’t indicated any fibrosis?

My emotions switch between being happy and although it’s still a very serious diagnosis, he is lucky to have caught it before it turned into cirrhosis to that she must have got it wrong and he must have it - and then I fall into a dark hole and search and search the internet in trying to prove it despite not even knowing what I’m looking at.

When my husband spoke to the hepotologist and questioned it, she said she followed the guide and that’s the bracket he falls into.

Is there anything else we should be doing? He has LFT,S and was diagnosed with a fatty liver back in 2019 (if not before) but that’s the earliest letter we can find , but we didn’t understand the seriousness of it tbh and before my husband was properly medicated for his arthritis he self medicated with too much ibuprofen. We have completely changed our diets, which was takeaways at least 4 times a week, around 2 bottles of full fat coke every day, white bread and snacks - just generally really really unhealthy habits and he has since lost 2 stones with probably about and 8 to go.

His LFTS are monitored by his rheumatologist who only in the beginning of the year said they are happy with everything and said they didn’t need to see him for a year (they were seeing him every six months) obviously for his pain too but they kept a eye on his liver too. He has another LFT in about 3 weeks, and I’ve never paid attention to them before tbh, but I will this time and ask for the results - is there anything I should look out for?

If you got this far, thank you

[FlippinOut]

From what I understand a Fibroscan is not a reliable test, especially if person is overweight. Since he also had ultrasound that said no fibrosis, I would think they’d want to do some further testing to get a diagnosis. Maybe an MRE or CT scan to get a better look at his liver. Apparently there’s no easy way to get an accurate diagnosis with just one test.

Does your hubby have any symptoms? What prompted the original Fibroscan?

[Booksand in reply to FlippinOut]

No, no symptoms, bar a slight pain when his body naturally twisted slighting when wiping on the toilet (sorry, tmi) but he never mentioned it as he said it wasn’t painful really, and only lasted while he was twisted - and he said he doesn’t get it anymore.

I think the fibroscan was promoted because of his arthritis, he has regular LFTS and ultrasounds through his rheumatologist (who is fantastic) to keep an eye on his liver because his LFTS went up and down as he was trialing various medications over the years to find one that suits.

Although, I am going to phone and see if I can check the results of his last ultrasound just to make sure my husband has not taken in the information properly. But if they had said something to concern him, he would have said.

What would you suggest we do next? Or who should we get in touch with next?

[FlippinOut in reply to Booksand]

I’m in a similar situation. I had a CT scan that showed signs of cirrhosis and a FibroTest (blood test for fibrosis) that showed F3 fibrosis and my Fib4 score is F1. All my other bloodwork including LFTs is normal.

Does hubby have metabolic syndrome? I’ve been on meds for bp/cholesterol/glucose intolerance for years and was told I had fatty liver in 2015. No one was concerned or told me to follow up on it.

I have no clue what’s going on but I’m scheduling an MRE which shows the entire liver. Maybe you can look into that or a CT scan. Also try to get the details from his ultrasound to see what it actually says. And if possible get the results from all bloodwork. Things like sodium, albumin, platelets, bilirubin and PTT can help give a sense of how the liver is doing.

All the best going forward. I know how stressful this is.

[kensimmons]

What medicine does he now take for the Psoriasis? I have heard they all attack the liver, is there something new out there?

[Booksand in reply to kensimmons]

He is on Taltz

[kensimmons]

Thank you and good luck!

[BritishLiverTrust3 Administrator British Liver Trust]

Dear Booksand,

If you [are in the UK and] 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

[Tommy62]

I was 19.1 and my consultant told me I was borderline cirrhosis but told me 2 years later and I had been drinking the night before the test which good have made it higher I had an ultrasound done but my abdomen was full of gas so couldn't really see anything was sent for ct scan got a letter 12 weeks later to tell me results no red flags and no sign of liver cancer which is good news but waiting 12 weeks for results is a disgrace hope everything goes well for yous Godbless