Has anyone a record from various Fibroscan ? - PBC Foundation

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Has anyone a record from various Fibroscan ?

ritarobainapbc profile image
32 Replies

I have 3 Fibroscan taken, 2017, 2018 and 2019. The readings are increasing

0.4 kpa/year. What are your experiences??

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ritarobainapbc profile image
ritarobainapbc
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32 Replies
gwillistexas profile image
gwillistexas

I had one August 2017, August 2018. Having 3rd next week. My first was 8.2. Second was 10. So I’m dreading this next one.

periwinkle88 profile image
periwinkle88

My first was 7.2, and two years later (after being on ursodiol) it was 4.5. In between scans I learned that eating within two hours of the fibroscan can negatively affect the outcome. I had eaten about an hour before the first scan. For the second scan I made sure to eat 2-3 hours prior (and then not again), so that may have helped my score improve.

butterflyEi profile image
butterflyEi in reply to periwinkle88

hi periwinkle88

I was reading a thread the other day where different contributors were discussing their up coming fibroscans, one person had been told not to eat up to 6 hours prior and other given no guidance. No scores were discussed so I find your post really interesting. I have never been offered a fibroscan although I did have one as part of a research study a few years back but was not given the score. If I am ever sent for one I will certainly bear in mind what you have said. thank you.

gwillistexas profile image
gwillistexas in reply to periwinkle88

I’m always told 3 hours. I wonder what food to avoid at lunch that day. I suppose nothing fatty.

periwinkle88 profile image
periwinkle88 in reply to gwillistexas

I'm not sure! But I agree low fat would be a good guess for what to avoid, and anything else that is difficult to digest.

in reply to periwinkle88

periwinkle88 - good thinking, so easy on the protein at that meal too.

in reply to gwillistexas

gwillistexas - interesting - good point - What luck we have each other to share information. I was told for 3 hours. But I have slow transit, so faster-moving food would be better for me for sure.

JaneAnderson1966 profile image
JaneAnderson1966

I had a fibroscan last week as part of a research project. I was asked not to eat for 8 hours prior to the scan as what is in your digestive system can impact on reading. My reading had gone down from a fibroscan I had in May. Apparently grapefruit and other acidic berries/foods can impact negatively on results. I was under the impression that these foods don't necessarily do permanent damage, it is just that the liver has to process anything in the digestive system and different foods have different effects on the liver.

Hope this helps.

sonshine profile image
sonshine

I had one a couple of weeks ago n my score was 47... so they called n discussed that my liver was functioning st approximately 25%. I didn’t eat 3 hrs before n it was quick! Bc they said with a cirrhotic liver the rays can’t go thru. So they just bounce off n boom. So I had a feeling. But—- didn’t realize it wud b that much that had cirrhosed? First one do idk

sonshine profile image
sonshine in reply to sonshine

Actually 46.4

sonshine profile image
sonshine in reply to sonshine

Why are mine so high! Is it bc of cirrhosis? Idk I suppose. Yea I’m answering myself—-think I’m loosing it😳😢

Jeanb47 profile image
Jeanb47

My first fibroscan in July 2017 was 7.5 , and the doctor said that was fine.

In October 2018, I had a repeat and the score was 9.5 and at my next appointment on

June 26, it had jumped to 14.5.

My specialist decided a biopsy would be a good idea which was done on July 12. However, the person doing the biopsy only took one core, so as guidelines suggest 2-4 to get a proper cross section, not sure how helpful it was. I have not discussed the pathology report, but have a copy, and it shows progression of the PbC but not significantly.

in reply to Jeanb47

Thank you for sharing your results! Im under investigation for possible PBC! My fibroscan was only 4.5 with CAP of 259! Stage 1 I believe.

12 months of blood tests are now back to normal after 18 months of healthy food plan! I'm now wondering whether my consultant will discharge me in October even if I'm still getting odd nights of itchy skin and nausea in the mornings.

Trish

ritarobainapbc profile image
ritarobainapbc

Many thanks to all of you that have

given me an outlook of your personal findings.

Healthy regards.

smokylake profile image
smokylake

I had an exceptional technician do my most recent Fibroscan. She explained how opening up my ribcage by stretching my hand above my head would lead to a more accurate reading. (I am short-waisted) She suspects that the poor results on my previous scan were due to a rib being in the way of the Fibroscan. Readings taken prior to the hand above head position were higher than those taken after the hand above head. Grateful for a patient, proficient technician!

gwillistexas profile image
gwillistexas in reply to smokylake

My first technician had me stretch my arm so far over my head I was actually uncomfortable. Second technician didn’t have me stretch as far. Had no confidence in her. I’m short waisted too. 😊

in reply to smokylake

smokylake- good point - the best scanner is only as good as the technician. I am grateful for an excellent one.

gwillistexas profile image
gwillistexas in reply to

I’ll probably ask this next technician to stretch me until I hurt😂

in reply to gwillistexas

gwillistexas - go girl! You did say you'd start getting out more, so no harm limbering up :-)

gwillistexas profile image
gwillistexas in reply to

Forgot to mention, I also have moderate scoliosis and my spine curves to the right. All the more reason to stretch me far. I’ll be sure and tell her. 😊

in reply to gwillistexas

gwillistexas - stretching can be an issue for some of us whose bones are thinning faster from PBC. We have to be all over it when anyone asks us to perform any bends or stretches don't we?

gwillistexas profile image
gwillistexas in reply to

Yes😊

Skypony profile image
Skypony

Hi ritarobainapbc, if your results indicate early stage then small increases may not be significant since fibroscans are not the most accurate for low level changes. I've had a sequence of 3 results over 2 years with the first being disregarded as unreliable because the scores were too scattered and inconsistent with other markers of disease. The next 2 were stable, but I guess they're just part of the overall picture. Best wishes

in reply to Skypony

Skypony- have you had MRE? When the low scores are not neccessarily indicative of fibrosis, and the bloods also are saying all is well but not necessarily lining up with liver stiffness, what timely assurances do we have about disease progression?

Skypony profile image
Skypony in reply to

This is a good question 4thPlinth. No I haven’t had an MRE, have you? I actually tried to find out where they’re available (either private or on NHS) without success.

I’ve had SW elastography though, and used in conjunction with fibroscan and bloods, I feel this probably gives as good a picture as most of us are going to get. I’d be interested to hear your views and experiences.

in reply to Skypony

Skypony - haven't had one, but was thinking about it. From my wanderings elsewhere on HU, it seems King's has one. I'd have thought anywhere with specialst liver centres. My urgency to have one has been slowed by dx of osteoporosis. I don't choose the bone meds, but to try to raise levels thro diet and exercise. This involved study, big change in diet and activities, so I've been attending to that. But on the whole, if I am truly doing all I possibly can healthwise, I ask myself what difference would it make if I discovered my liver was worse than I thought? Especially as I was told point-blank by the consultant at dx age 64, that I was too old ever to even be on the transplant list. I'm going for quality, not quantity now!!

Skypony profile image
Skypony in reply to

That’s a considered and intelligent approach which I’m sure will stand you in good stead, 4thPlinth. But no reason why you can’t have quality and quantity!

Re osteoporosis, I do take bone meds, so far without any ill effects, but I understand your doubts. I hope you’ll report back in due course on your success with your bone health regime.

in reply to Skypony

Skypony - thank you - will do - and I wish you well, bones, liver, and all the rest that keeps body and soul as one :-)

ritarobainapbc - thank you for posting this. You have helped me. I have a fibroscan next week. I will take much more interest in what has been my score over 8 years, if the change is low and steady as yours, and I shall be sure to eat in the best way to get the most accurate results possible.

ritarobainapbc profile image
ritarobainapbc in reply to

I am glad my question has helped you. Good luck next week and please informed us about your results

in reply to ritarobainapbc

ritarobainacpbc - will do. Thank you.

VeeWat profile image
VeeWat

I had one 4 years ago and ate beforehand and it was 5.3

Then had one a couple months ago did not eat for 12 hours before. It was 5.1.

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