Fibrosis

[Misn]

I recently had a fibroscan after 2 years since last one which showed 6.9 kpa now it's 7.7 they said mild fibrosis. Does this mean I'm going downhill? Really worrying I'm gonna get worse really quickly

[NotorDJP]

I really don't know for sure, as I am having my first Fibroscan today and don't know that much about how changable they can be. But I do know that the liver can vary on other tests and since that wasn't a huge change, it may be down to the first person who did the test and the variability of the equipment? if someone knows better than me they can weigh in. I just wanted to respond to you because I know how scary figuring out test results can be. I know the ALK Phos can vary wildly from test to test due to lots of factors, but I don't know about this. I was around stage 2 (by biopsy) in 2014, so I'm anticipating being further along, but I don't know exactly how these work. It still sounds pretty low to me.

[Misn in reply to NotorDJP]

Thank you for your reply. Yes it's very scary and just the unknowing, I try not to worry too much overall then the day comes when I have bloods taken or a scan then it's like back to reality of having this. He did say it was a very small change and nothing to worry about but its hard not too. This chat helps a lot getting others going through the same thing to talk to. So thank you and hope your scan goes all ok too

[NotorDJP in reply to Misn]

You are welcome! Yes, I'm going through the same thing today. I just get on with this PBC thing and then something new happens (Oh by the way, we want a fibroscan today) and I start to spiral a bit. I joined this chat back in 2014 when I was diagnosed. It has helped me so much! I don't come out here much, unless I have something to talk about, but its always a great help for me. I was more worried about the root canal I have Monday than this appointment today until they called me yesterday and said, hey we are getting a scan right before your appointment.

[DonnaBoll Administrator in reply to NotorDJP]

All of this is scary.. I know that personally as I was diagnosed at age 35. We have to remember that PBC is a very slow progressing disease. This is why it is so important to learn all you can about it, repeat liver enzymes every 3-6 months, take the correct dose of Urso faithfully, eat healthy, and exercise as you are able. Fluctuations in our results is normal. What we all need to do is look at the overall trend of our results. Most labs can provide you with a graph of past results. If not, keep track yourself so you can see the trend. Don't use all of your energy on worrying. Control what you can control... and it's not lab results. I'm so glad you posted about this as I am sure you are not the only one concerned.

[DonnaBoll Administrator in reply to NotorDJP]

You are right about the difference the scores can be from the machine used, the tech who does the test, and your weight. There are several great articles from Mayo/Cleveland Clinics about fibroscans.

[gwillistexas in reply to DonnaBoll]

This is true. I remember 2 fibroscans that the technician had to get another to come do the scan. One thing to remember also is sometimes they pick up a vibration from a rib which can throw the result off. My hep stopped ordering fibroscans on me because I’m too thin. So now it’s usually a biopsy to check fibrosis and PBC stage.

[DonnaBoll Administrator in reply to gwillistexas]

Hate to think you will have a biopsy for that. Could he possibly do an ultrasound?

[gwillistexas in reply to DonnaBoll]

He doesn’t do US unless he suspects something. He says they are not that beneficial.

[gwillistexas in reply to DonnaBoll]

I guess I should say he prefers more precise testing. He sent me to Dallas a couple years ago for an MRE. Even that didn’t give enough information so we did a biopsy.

[DonnaBoll Administrator in reply to gwillistexas]

MRE is usually pretty precise in its findings. Sorry these tests don't seem to help you find any answers.

[gwillistexas in reply to DonnaBoll]

I always seem to be the difficult one 😂

[DonnaBoll Administrator]

First of all, take a breath. You are ok. Normal Fibroscan results are 2-7. Any elevation at all just means you have liver disease -- and you already knew that.

Treating fibrosis means taking your Urso (at the correct dose), repeating liver enzymes every 3-6 months, repeating the Fibroscan yearly, eating healthy and exercise.

What is your alk phos result last time? What was it when you started the Urso?

[Misn in reply to DonnaBoll]

Thank you so much for you response. Everyone truly helps on here and it's a comfort to hear positive responses. I'm not too sure with the alk pho it's all confusing to me cos some say alt and and alk pho I'm just confused lol. I'll have to have a look back at my results. I'm not the healthiest of eaters but I'm trying my best and I deffo need to start exercising. My main struggle is fatigue right now like super exhaustion, think I'm low in b12 and I have read somewhere that it's harder to absorb so maybe I need to start taking b12 supplements too.

[DonnaBoll Administrator]

Sometimes it is confusing. Lab tests are Alk Phos, ALT, AST. The one I look at most if the Alk Phos. This is an enzyme that is released from any amount of liver damage - no matter how small it might be. It's always good to have your vitamin levels checked - Vitamin C and D can help absorb B12. Check those C and D levels. Good place to start maybe...

[Cathycomehome]

hi ,

I had a fibroscan yesterday .. took a lot of shots to get a reading that was lower than the time before but the same as the first one I had in 2020 !!!

I don’t take urso by choice and have kept my ALP just above normal by lifestyle choices

Take care

[NotorDJP in reply to Cathycomehome]

I'm hoping mine improves. I have had this awhile and my alk phos has stayed high. She wants to get mine back to the low 200s. My last doctor felt I was stable and didn't need to do anything else, but I have a pretty high fibroscan number now so I need to do something else. I don't want it going any further if i can help it.

[DonnaBoll Administrator in reply to Cathycomehome]

Great news on the Fibroscan results. I have to admit it scares me that you aren't taking Urso. Its purpose is to keep the bile ducts open so the liver can function as it should. I assume you get lab work done every 3-6 months. I'm just being honest with you.

[Cathycomehome in reply to DonnaBoll]

I have tried urso but it doesn’t suit me …. doesn’t actually work for many people so annual checks , lifestyle changes and open to new treatments is the way foreward …

[DonnaBoll Administrator in reply to Cathycomehome]

I hope you continue to do well... take care.

[Onesmallstep1969]

MRI (with echo called an MRE) are far better than Fibroscans at telling you the degree of fibrosis.

[DonnaBoll Administrator in reply to Onesmallstep1969]

I have to agree with you on that. Fibroscans, I think, are not turning out to the great diagnostic tool for many due to different machines, untrained techs, and body size.

[lovesoccer]

I’m late to the convention want to echo others’ comments. Trends, including convergent trends from different tests, are more telling than a single result. By convergence I mean can you draw a general conclusion from the multiple tests?

It’s hard not to go directly to the dark place based on one result. (I’m guilty of this.) This disease takes a mental toll despite it being slow progressing. But that’s why we’re here - to reassure and offer support. I hope we collectively brought you some of that.

[Vivaldii]

my most recent scan said 8 and no fibrosis noted …..