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.

[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...