PBC Foundation
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Totally Confused🤨

G’morning. I’m hoping Robert can help me understand my question. I’ll try to keep it short as I have to get ready for work. Diagnosed a year ago, Internist ordered abd ultrasound. He said all normal “picture perfect”. GI orders fibroscan & score was 8.4. He said evidence of mild fibrosis. My confusion is how in the hell can the ultrasound be so perfect but yet fibroscan showed mild fibrosis??? I thought ultrasound showed portal veins, liver texture consistency, blood flow & any scar tissue, if any. I have also asked my GI’s NP if I will have periodic ultrasounds & she said no. GI also said he doesn’t do many biopsies anymore, that he prefers fibroscan. NP says if I want true staging I should have biopsy. Conflicting info. I’m up in the air to say the least.

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I'm confused too. Sorry to hear about the Fibroscan results. This is what I think is gonna happen to me. I've learned so much on this site. Biopsies aren't the gold standard, one can be stage 3 and have really good labs, and ultrasounds don't show fibrosis. Yet, my hepatologist will order ONLY ultrasounds 2 times a year. They always come back unremarkable. I can't have a Fibroscan as I'm overweight. I need to lose weight in order to have one. Still, if my having one does turn out that I do have fibrosis...... I'm still doing everything I can right now to prevent progression. All I can do is keep taking URSO. It's all so upsetting and yes at times confusing. Fibroscans should be the go to test over ultrasound. Keep us posted please. Have you had any discomfort, pain or any clue at all that mild fibrosis was happening?

❤Stella

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Let me say this, this is not something new. My fibroscan was done when first diagnosed last year. I’ve had a year to think about it all. But I attended a chronic liver support group this past Tuesday & that’s what got my thinking in this mode. I don’t want to repeat but ultrasound perfectly normal. Mild fibrosis from fibroscan. GI’s NP told me my liver was fine. Fibrosis is duct(s). She held the support group. No one there knew anything about PBC. They were all hepatitis & either pre or post transplant. So she & I explained PBC. I mentioned my fibrosis being confined to the duct. She said “no, fibroscan is liver only”. Contradictory to what she told me at first visit. That’s my confusion. I totally understand what fibroscan does. But something doesn’t add up. That’s ok, I have labs July 5th & see Internist July 12th. He will explain his definition of “picture perfect liver”.

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Ktltel, my Internist ordered ultrasound not only to check liver, but also pancreas, right kidney, aorta. I understand it has a different function than fibroscan. But ultrasound should pick up on liver texture so I was told & have read. Also they say it checks portal vein & blood flow through liver. I’ll find my answer, lol!🤗

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Pbc is very complex

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How many fibroscans have you had? Have they been consistent along with your ultrasounds?

I have had a biopsy, 2 ultrasounds, & 1 fibroscan. Biopsy was to diagnose. Hepatologist said we’ll do US & fibroscan every few years.

This is how I understand all of this:

Ultrasound shows a picture or structural representation of the liver & abdomen which includes the portal vein, gall bladder, spleen, and pancreas.

Fibroscan measures the elasticity or stiffness of the liver. The higher the score, the less the elasticity & based on the fibroscan charts, it will define the condition of the liver.

Biopsy takes a few samples of the liver for diagnosis & shows a small representation of what is happening in the liver. Small representation because the liver is a big organ, so the findings will not be the same throughout the liver. Only it gives some idea about the status.

All 3 are not mutually exclusive & give clues about the condition of the liver. Additionally, the doctor has to consider the patient’s lab work history. All of these diagnostic tools allow the doctor to see a comprehensive picture to help manage your condition.

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Also in PBC, it is not the large portal vein that is being impacted. PBC impacts the microscopic billary ducts within the liver which can only be seen via a biopsy where the liver samples are examined under a microscope. If you have inflammation, you might see coarseness in the liver ultrasound which can be caused by any number of liver conditions such as fatty liver, alcohol induced hepatitis, hepatitis, autoimmune hepatitis, pbc, or psc. Fibroscan which measures liver elasticity has a number of established charts that explain what numbers correspond to which conditions.

Anyway all of my remarks here are based on my interpretations of my discussions with my hepatologist. I didn't take notes so it is solely from memory; so take it with a grain of salt.

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At my last meeting with my hep who is a professor she said my US was completely normal i have mild fibrosis fibroscan done in oct based on my last bloods which hep said were stable she wants to see me in 12 months time she said she will do another fibroscan in 3 years time i was told to have more bloods done in 6 months time i am on urso

I had an US done in 2015 and 2018 and they were both normal

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Ballymahon...thank you. That’s what I was looking for. Your US was normal & fibroscan Indicated mild fibrosis. Correct?

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Yes

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Thank you. That’s the answer I was looking for. Have a great day & weekend 🦋

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Hi

I've just read this about fibroscans and why they are more accurate than other scans, which might be why the results differ.

'In the early stages of liver disease, symptoms are almost non-existent and conventional ultrasounds are poor at confirming any damage. A fibroscan is a liver scan that offers a risk free and highly accurate alternative – scanning the stiffness of your liver – instantly pinpointing any problems.'

Good luck x

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Yes, & my ultrasound was not ordered for confirmation of PBC or scarring. It was done to to assess the condition of liver & surrounding organs. But ultrasound doesn’t just scan the outside of the organs.

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Ultrasounds do not show scarring at the level of the tiny (microscopic) biliary tubules.

These are the end stage of the division of the tubule size, from the larger tube that empties the collected bile into the gallbladder. From the gall bladder, the tubes in the liver get smaller and smaller, branching out to all parts of the liver (imagine a tree: from trunk, to branches, and then twigs) until you get to the microscopic biliary tubules, where their walls are about one cell thick, so that the waste (etc) substances from the liver cells can pass into them … to then be conducted back along the larger tubes to the bile duct.

An ultrasound can show 'mass scarring' of the liver, if the biliary ducts, tubes, tubules and the cells of the liver were badly damaged, all over. However in early stage PBC, the scarring is not all over, and only at a microscopic level. A fibroscan is better at spotting smaller areas of the damaged tissue, as the technique can detect different elastic responses from the small patches of damaged liver tissue. However, an ultrasound is often done, routinely, just to check on general abdominal and liver health.

The UK/Euro diagnostic criteria still suggest a liver biopsy for ultimate diagnosis of PBC. However, if AMA-M2 readings are high, and the various blood and liver functions tests are consistently abnormal in the way that is typical of PBC, then those two tests are usually enough for a diagnosis of PBC. Do you know why an ultrasound was requested? Are your AMA/blood test results at all ambiguous? I know things are different in the US, but I would always want to have a hepatologist rather than a gastro, and I would ask for a biopsy if there are any doubts.

Hope this helps.

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GrittyReads...thank you. that’s a big help. I sort of I had not posted because I feel some think I know nothing about liver, fibroscan & ultrasound. What threw me into overthinking was: 1) ultrasound normal

2) Np said fibroscan was contained in duct(s) & this was at diagnosis one year ago. Now NP said fibroscan doesn’t measure scarring in ducts, only liver. So, you see where I got confused? Your explanation is great😊

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Typo...”fibrosis “ in ducts.

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GrittyReads...US was ordered when ALP was elevated just to check for any possible abnormalities. In the meantime, my Internist had alreadysent bloods to a pathological lab in another city to test AMA & a host of other labs. A week later I went back to Internist to discuss results of US. While I was there, they received AMA results. M2 was positive so they then sent me to GI who ordered fibroscan.

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Hi Gwillis, I had the same I had ultra sounds special liver MRI all were normal . Only the fibroscan showed up mild fibrosis . I had the latest type of fibroscan at the Royal Free. It’s has another name! My professor just said unfortunately the other scans cannot give the same diagnosis for PBC. I also had a biopsy which gave him more diagnostic details . I’m relieved that this was done. Like you early stages mild damage to liver . Last blood test all LFT s were normal after taking Urso.

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Miramaur, thank you. You’re speaking of MRE? (Elastography). It is not available yet in my city. I have inquired. I was officially diagnosed by positive AMA M2 & ALP. My dr prefers no biopsy unless necessary. Prefers fibroscan. Glad you’re doing well🦋

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Yes that was the scan I had Elastography. My professor wanted the biopsy he was also checking for AIH . It gave him further information. I don’t like having this disease but I seem to be ok please G d. My bloods were ok last time . He will only see me if I feel unwell or my bloods get worse. I will need another MRA. And bloods every six months .

I hope you are feeling ok xxxx

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That’s wonderful! Yes I’m feeling very well. Thank you🧚🏻‍♀️

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I personally feel you have much better care in the UK & also Ballymahon in Ireland, than we have here in the States. I don’t recall seeing anyone from there question their drs. We see it often here

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So very pleased you are feeling well. My Proff was very positive about everything I think we should try to be . Thank G D were diagnosed at early stage and mild damage. It’s not nice but I guess it could be so much worse , that is what I tell myself. We will be ok xxxxx💜💖💖

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Miramaur...thank you. Yes we are blessed in so many ways. I will know in August is my med has kept fibrosis down or if I have progressed. 🦋😊

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Hi Gwillis . I just assumed that if LFT s are good it would help stop the progression , let’s hope so . I was told it progresses very slowly and Urso slows it down even more , if we are responders to it

Xx

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Yes ma’am. Hope & prayer are the two powers we should never be without 🦋

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Ask your GI to show you the fibroscan charts then you will see how the 8.4 score fits into the interpretation. I think it was confusing because the NP could have been more specific.

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I have copy of fibroscan

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Here I googled it. These are the charts I was refering to:

hepatitiscnewdrugs.blogspot...

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It says:

Located on the bottom of the Fibroscan scoring card is Fibroscan results in (kPa) measurements 0-75, more accurately Fibroscan results range from 2.5 kPa to 75 kPa. Between 90–95% of healthy people without liver disease will have a liver scarring measurement less then 7.0 kPa (median is 5.3 kPa).

A person with chronic hepatitis C and a liver stiffness more then 14 kPa has approximately a 90% probability of having cirrhosis, while patients with liver stiffness more then 7 kPa have around an 85% probability of at least significant fibrosis.

However, research has shown Fibroscan accuracy in assessing lower degrees of liver fibrosis (F1-F2) is not as reliable compared to diagnosing advanced fibrosis and cirrhosis (F3/F4)

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I will look at my copy later & study it further😊

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Yes, I also have had this chart from the beginning of diagnosis. Dr said low end f2. Thank you.

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You are fine then. Not to worry.

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I looked at it. At the bottom he wrote F1 & F2, & circled F2.

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And...when NP said no scarring in liver tissue, I wrote it on my sheet so I would not worry. For whatever that was worth😁

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Fibroscans can also show you the amount of fat in your liver. Had my first one last month, and was thrilled to know that my result was well within the normal range. And no discernible scarring. Happy bunny!

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👍. That’s a relief for you I’m sure. I’m just hoping my fibrosis will still be mild with next scan.

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My doctor wont do a biopsy he said they are not accurate. Getting a new doctor. I need some one who understtands. If anyone is in Albuquerque New Mexico and has a good doctor plz let me know. Blessings.

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My dr prefers no biopsy unless he feels necessary. He says same thing. I’m ok with that.

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Yes iam to. He still hasn't got me to the kidney dr. For the low sodium. Lol another day.

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Some take their sweet time😁. Hopefully you’ll get there soon. Hope your kidneys will be ok. 🦋

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Lol gotta have a sense of humor. Everything in Gods hand.

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So true! Softens things when you have that faith 🤗🦋

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