Haven’t posted for a long time and thought I’d feed back on my recent experiences of ultrasound and fibroscans - two of them because the first wasn’t accurate - in case this is of interest. Also a more philosophical bit at the end.
My US was reported as ‘slightly coarse echo texture’ which presumably indicates some degree of scarring. I know I don’t have fatty liver which can also produce that effect I think. Nothing else abnormal, ducts we’re patent and normal width, etc.
I then had a fibroscan which, despite the operator trying hard to get good readings, showed a very significant change since my previous one, which I didn’t believe! Specialist nurse came in and checked my previous fibroscan score, the test was then repeated with me stretching my arm right over my head to, I assume, provide more space between ribs, and a much happier score was obtained, normal range and in line with the previous one. Phew! This is not the first time that’s happened to me and I wanted to share with you what I’ve been told, that people of small stature may get this effect (I’m 5’ 1”tall)
My bloods are pretty good, and I know that the whole picture of our health is made up of several indicators combined. I was cautioned not to be too concerned about one aspect (the US) and as I hadn’t had an US for around 5 yrs I guess some change is to be expected.
Strangely though, I didn’t expect it! Probably I’d become a bit complacent, even though I’ve always known that microscope changes are going on, invisible to most imaging.
Anyway point is, other than the fibroscan anomaly that I wanted to share, this was a good wake up call for me! I’m 66 and though I’m quite well now (apart from severe fatugue in the afternoon/evening) I’m going to get on with things - go on those holidays, etc! Because although I’m an Urso responder and my disease has progressed really slowly, it is progressing. This is only about me remember, we’re all different, my friends.
Best wishes to you all xxx
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Skypony
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Thank you for sharing your experience. I’m still relatively new to my diagnosis so this was helpful for things to come. And I love your philosophy and outlook!
I just got the score back, a nurse called and said F0; 4.3, normal. Phew, I guess she got what she needed. Whenever a tech takes a long time or had trouble i get paranoid and think she is seeing something horrid on the screen.
Hi there can I ask how long ago you were diagnosed? I think I tend to block progression in my brain as I’m an urso responder too and it’s easy to pretend that somehow I can prevent any progression by taking the meds. I wonder if anyone has actually remained in the same stage all their lives with no further damage. Thankyou for your useful comment.
Hi TylerA, I was diagnosed and treated with Urso in 2012, but met criteria in 2002. You ask such a good question! I don’t know if everyone progresses measurably through stages, but it seems sensible to ‘block progression in your brain’ (lovely phrase!) while things are stable, because that approach has most utility. I’ve tried to unblock my brain in response to (what may be only a small) change, because for me, *that* now appears to have the most utility.
Hi Skypony I got diagnosed in March 2020 after a year of investigations after my lfts became elevated. They went back to normal after a year on urso and apparently my liver is currently fine. My main problem is fatigue and some digestive issues. I’m a very active person and it can be really hard mentally to make my body exercise if that makes sense!
I’m very stubborn so I keep challenging myself but sometimes it’s SO hard. The hepatologist has discharged me back to my GP so I’m very glad that I have the wonderful PBC foundation!
Your story is very inspirational Tyler! There seems to be a fine line between ‘listening to your body’ and pushing on a bit in order to maintain stamina, which supposedly helps fatigue. Don’t think I’ve cracked it yet!
I don’t think I’ve cracked it yet either! I’ve currently got covid so forced into resting but I think you’re absolutely correct about that fine line. I still do have a tendency to ‘push through’ even when I’m shattered and probably take the movement is medicine thing a bit too far! I have found that I back out of social events a lot more than I used to - I panic about late nights as they knock me out of synch for days. Are you uk based?
If you fancy meeting I’m not averse to going to Brighton at some point spring or summer - feel free to PM me. Presumably you’ve checked with your local Foundation volunteer that there isn’t a group?
Thank you so much Skpony. I’m glad you were retested with the more positive result. I’m the same height as you so that’s very helpful information to know.
Thank you Turquoise. I don’t want anyone else to get a worrying or inaccurate score because the pulse is bouncing off the wrong bit of them! I assume you can only get a falsely high reading when this happens, not a low one. Incidentally I was also told to fast for 4 hours before, not sure if I’ve always been told that.
Thanks Skypony. I did get advice to fast so I did. I remember being asked to put my arm above my head. I wonder if I stretched far enough? My kPa score was 7, which isn’t too bad at the high end of the normal range, but would be great if it was lower 🙂
If you’ve got printed out results you might see a reliability rating on there. My operator said (about the first score) that it was well within their tolerance level for accuracy, though. I believe an unreliable score is noticeable when the individual readings that get averaged out are too ‘scattered’, if that makes sense.
Best not to think about it! My consultant said that looking at my numbers I should be fine until I’m about 70! I don’t know what not being ‘fine’ looks like but I’m going to retire at 60 and spend all my money travelling for 10 years! Bon voyage x
I am 49 (50 in April) was diagnosed with PBC in 2020. I have never had a fibroscan. Since I to am 5"1" I will keep your tips in mind if I do need one. I had a biopsy to be diagnosed since I am AMA negative.
The ultrasound at the time said my liver echogenicity was normal. My gallbladder was also normal.
Now only 2 1/2 years later I have a coarsened echotexture of the liver(it did not say slight or mild) and gallbladder sludge.
I received the results online and haven't spoken to my Dr. yet. I am wondering if the progression is faster than normal? I am really grateful for this community as no one I know has even heard of PBC.
Hi Larrysgirl, sorry I only just saw your comments. Have you spoken to your doctor since this post? It’s probably best to ask for their assessment of your whole picture since your recent ultrasound is only one part. It’s also more qualitative than quantitative, so your other data (bloods etc) may be more informative.
It’s not nice when you get a worrying piece of information and don’t have access to discuss it, been there myself! If you haven’t yet seen to your doctor, maybe let them know how you’re feeling. Some departments have a nurse specialist who can call you.
I’m glad you’ve found this community, it’s so supportive and knowledgeable! Also the PBC Foundation. If you want more responses maybe start a separate post.
Thank you so much for the support.❤️ I'm not too concerned, mostly just curious. I go see my specialist this Thursday. I'm a very " glass half full" kinda girl😊 I'm sure it will all work out, God's got my back. He knows I need to stick around for my grandkids( we have custody of them) Xoxo Anni
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