Fibro scans

[KevinHall10_]

Anyone that has had a fibroscan , do u think they tell the truth. Had one said i was 0 to 1. When i was a 2 with my liver biopsy in 2015. My levels are in range. How can this be. Does progress keep going even while taking urso?

[Skypony]

Hi KevinHall10_

Regarding your last question, are you an Urso responder? Important to know that.

I've had 2 fibroscans with conflicting results. The first one, which showed well above normal range, was discarded as unreliable. Reason? The series of individual pulses that are aggregated to form an average were so different to each other they were "impossible". The technician felt this might be because I'm small and my ribs are quite close together. At the same appointment I also had an elastography scan, which I was told was more reliable, and it indicated a result in normal range.

At my next appointment, both types of test were repeated and this time agreed with each other - normal range.

From this experience and things I've read, it appears that fibroscans aren't always to be relied upon, especially In mild to moderate disease.

Hope this helps, and best wishes.

[gwillistexas]

Your blood levels can be perfectly normal & fibrosis can still increase. It’s a big let down but it happened to me.

[Yankeerose3 in reply to gwillistexas]

That is happening to me also.

How do they say urso is working if fibrosis is worse?

#normal blood results

#stage3fibrosis

[gwillistexas in reply to Yankeerose3]

Yankeerose3...same here. Early 2 a year ago. Now don’t know if OCA is working. Has kept bloods normal and no side effects, but not sure I can say much else in its favor. So because my fibrosis increased I have to see a hep & see what his thoughts are. But that’s ok & in my best interest. 😊

[KevinHall10_ in reply to Yankeerose3]

Question..so if you go to stage 4 this is considered cirrhosis right???

[gwillistexas in reply to KevinHall10_]

My dr said he’s not alarmed that my fibroscan was a 10. He said he gets concerned if it goes to 17. That’s all I know.

[Yankeerose3 in reply to KevinHall10_]

Yes, I was told stage 4 is cirrhosis and stage 3 is fibrosis

[gwillistexas in reply to Yankeerose3]

Well, that’s a good question. In my way of thinking, if our drugs are not keeping fibrosis at bay, then it’s not working except to keep numbers down. Bummer.

[gwillistexas]

In answer to your question about fibroscan. My dr never said they aren’t always accurate until my last one showed small increase in fibrosis from a year ago. Now he says it & also that it depends on technician. I will have no more. We can’t play guessing games. When I do finally get to see hep, I’m requesting MRElastography even if I have to drive almost 2 hours. Now, if hep says he would do fibroscan himself, I might consider it but prefer not.

[ninjagirlwebb in reply to gwillistexas]

Hepatologist usually don’t do the fibroscans themselves. The techicians do them more often & an experienced one should be okay. The hepatologist will interpret the results for you though. But I think you should go for the MRelastography, everything I read about it says it is superior to a fibroscan. I bet it is used less often because of the cost & you might need preapproval from insurance.

[gwillistexas in reply to ninjagirlwebb]

I said that about hep doing it only because the patient tutorial I watched said any dr or nurse can do it. MRElastography is supposed to be much less expensive than biopsy. I have no insurance at the present & I pay everything out of pocket. I’ll definitely check cost before I do it. 😊

[ninjagirlwebb in reply to gwillistexas]

I am in nyc; at the hospital they have dedicated technicians for the scans. Same with ultrasounds etc.

Biopsies involve a surgeon, an anestheologist, a ultrasound technician & a nurse...& takes longer so the expense is due to all of the personnel & time involved.

[Ellyne in reply to ninjagirlwebb]

Do you know which hospital in NYC has MR Elastography?

[ninjagirlwebb in reply to Ellyne]

Mount Sinai in their Radiology dept. See page under abdominal imaging.

mountsinai.org/files/MSHeal...

[Ellyne in reply to ninjagirlwebb]

Thank you for that information. My Hep is in that hospital so I will discuss with her at next appt.

[ninjagirlwebb in reply to Ellyne]

Yes, she can write you a referral to get the scan done.

[Ktltel in reply to gwillistexas]

Hi,

Here in KC, I found the Research Medical Center in MO. Cost is $14,000 for MRE. No joke. But we talked to their billing dept. and more specifically a person who deals with ones where insurance won't cover the procedure. She said it will cost us $2,630, but must be paid at time of visit. So, we're slapping it on a 0% APR credit card. I mean, I gotta have this procedure..... 😕❤

[gwillistexas in reply to Ktltel]

Wow! And they say considerably less than biopsy🤔. Go for it😊

[Ktltel in reply to gwillistexas]

Thank you for your posts and PM's. I'm so nervous about my results. Especially since I'm so symptomatic and my labs. Just have to learn to deal with whatever comes. Which is what we're all doing anyway. ❤❤

[gwillistexas in reply to Ktltel]

You’re welcome 😊. Yes, I’ve learned through all this, we deal with one day at a time. Often not easy, but that’s us 🌷let us hear🙏🏻🙏🏻🙏🏻

[Ktltel in reply to gwillistexas]

Amen sister!! 😊❤

[gwillistexas in reply to Ktltel]

🥰

[Yankeerose3 in reply to ninjagirlwebb]

My hepatologist said not all Ultrasound and/or mri places have the elastograpy machine but he feels it measures the thickness better. I'm told it's better than a fibroscan also. Dr said we can do it once a year and alternate 6 months with ultrasound. Idk if because that's what insurance allows but it's safer than a biopsy and covers more then just the spot where the biopsy is done.

[ninjagirlwebb in reply to Yankeerose3]

Yes; after initial diagnosis, I don’t think biopsies are the best course for monitoring the liver. The technology is not available at all locations. Major hospitals in metropolitan areas should have them especially since they compete for patients.

Believe how often a procedure is done is also a function of probably how much your hepatologist believes your liver needs to be monitored. It will vary on a patient by patient basis.

[VeeWat in reply to ninjagirlwebb]

Does MRE involve contrast agents like gadolinium?

[iagra]

My doctor never ordered for me fibroscan. She doesn't regard it as an accurate test. I had the liver biopsy, when I was first diagnosed. Since then, I do wave ultrasound, which is different from fibroscan and considered here (in the US) more accurate and correlated closer to liver biopsy.

[Hidden]

If your in the F0 -F1 range your elasticity from a fibroscan is between 2 and 7. If your in F2 range, that starts at 7, so you could be borderline depending on your actual reading.

I remember getting confused because I thought I’d been booked for a fibroscan so read all the details and measurements imagine my surprise when I actually had a shearwave elastography which measures in mls, not kpa and the results were nothing like I expected.

I asked the consultant what my results were in relation to a fibroscan because I reasearched them and felt I understood them better and she said tests don’t cross reference well, we have our baseline to go with that’s whats important I’am happy with that. I will get another shearwave in 3 years, time if everything else stays stable.

I’ve added the fibroscan score range so you can see how close F1 and F2 can be, but I don’t know anything about biopsy results as I’ve not had one, is it possible the ranges of the two tests overlap somewhat, and both are actually correct, it’s a good question for your doctors. Most importantly what you do have is both results as a baseline for the monitoring of your treatment and both are early stages, and yes this is a slowly progressive disease slowed further by URSO but not cured by it. Stay well.

uhn.ca/PatientsFamilies/Hea...

[KevinHall10_ in reply to Hidden]

Did you mean stage 2?

[Hidden in reply to KevinHall10_]

Your post said you were a 2 from your biopsy, with the score card I sent, I was trying to point out how close together the stages sit in terms of the fibroscan. Kpa measurement.

[jane1964]

Hello I have had an ultrasound, a fibroscan and an MRI scan in a trial.The ultrasound gave the worst result the MRI was in the middle and the fibroscan looked to be the best.I don't know where the true results lie but I think these methods are just indicative and need interpretation by a doctor who is experienced in PBC to be meaningful.Myself I think for me the MRI maybe the most accurate it certainly gave the most detailed image.I know it's hard the uncertainties of living with pbc, but unfortunately it seems to be that way.Jane

[VeeWat in reply to jane1964]

I was not aware the ultrasound or mri could stage your liver for fibrosis

[jane1964 in reply to VeeWat]

Hello I don't know about if/how these scans stage damage in liver I am just going by what my doctors told me.In my case I have cirrhosis I don't know what would show in fibrosis.

[SunnyXXOO]

They may be vague but they have to tell you truth. Like I said they can be vague.

Next time you visit MD be ready with a list of any questions you have, make sure he speak in layman terms not medical jargon, and don’t let him go until he answers ALL questions, that is his job.

Love, Peace & Love

SunnyXXOO

[Jlruggie]

KevinI’m scared too. 20 year diagnoses here. Asymptotic beyond fatigue.

Ursodiol only delays progression of pbc from what I currently understand. Drs I’ve found don’t tell you how to keep enzymes levels down beyond quitting alcohol. I’m understanding it’s the increase in enzymes that breaks down walls of the biliary tube system and progressively blocks liver from moving bile and detoxifying the body. Then you get itchy and jaundiced. Dr will try their promising other drugs. Stand in line for liver replacement.

Ayurvedic dr will tell you to limit fats, salts and sugar and to have zero processed foods, zero alcohol, zero meat, zero eggs, zero milk. Exercise. Reduce stress.

I’ve adapted this strict regimen, do yoga, meditate, trigger relaxation response daily and to put myself to sleep through breath control and counting heartbeats. Yeah I take Urso too, just in case it works on me.

Getting my regular blood work done today. I’ll post results.

Keep communication how you ar processing having pbc diagnoses. 90 some % of pbc patients are women. Welcome to our club.

Jlruggie

[KevinHall10_ in reply to Jlruggie]

Thank you..my name is pat. When i opened this site didnt know what i was doing and put my son'sname lol. When i had my fibro scan, the office acted like i was cured!!. It was 0 to 1, from what i just read it means I'm still at stage 2. Which now makes scence. I jst didn't know for sure if we still progress even taking urso. But i guess we do. I try not to worry about this untill i have a tired episode, then i just rest. Usualy last 4 days, used to last only 2. So i just roll with the punches. I also have fibromalgia. That can make u tired. Any thanks again..pat