Gāmorning. Iām hoping Robert can help me understand my question. Iāll 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 āpicture perfectā. 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 GIās NP if I will have periodic ultrasounds & she said no. GI also said he doesnāt do many biopsies anymore, that he prefers fibroscan. NP says if I want true staging I should have biopsy. Conflicting info. Iām up in the air to say the least.
Totally Confusedš¤Ø: Gāmorning. Iām hoping... - PBC Foundation
Totally Confusedš¤Ø
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?
ā¤Stella
Let me say this, this is not something new. My fibroscan was done when first diagnosed last year. Iāve had a year to think about it all. But I attended a chronic liver support group this past Tuesday & thatās what got my thinking in this mode. I donāt want to repeat but ultrasound perfectly normal. Mild fibrosis from fibroscan. GIās 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 āno, fibroscan is liver onlyā. Contradictory to what she told me at first visit. Thatās my confusion. I totally understand what fibroscan does. But something doesnāt add up. Thatās ok, I have labs July 5th & see Internist July 12th. He will explain his definition of āpicture perfect liverā.
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. Iāll find my answer, lol!š¤
Pbc is very complex
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 weāll 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 patientās lab work history. All of these diagnostic tools allow the doctor to see a comprehensive picture to help manage your condition.
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.
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
Ballymahon...thank you. Thatās what I was looking for. Your US was normal & fibroscan Indicated mild fibrosis. Correct?
Yes
Thank you. Thatās the answer I was looking for. Have a great day & weekend š¦
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 ā scanning the stiffness of your liver ā instantly pinpointing any problems.'
Good luck x
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 doesnāt just scan the outside of the organs.
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 ā¦ 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.
GrittyReads...thank you. thatās 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 doesnāt measure scarring in ducts, only liver. So, you see where I got confused? Your explanation is greatš
Typo...āfibrosis ā in ducts.
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.
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. Itās 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 . Iām relieved that this was done. Like you early stages mild damage to liver . Last blood test all LFT s were normal after taking Urso.
Miramaur, thank you. Youāre 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 youāre doing wellš¦
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 donāt 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
Thatās wonderful! Yes Iām feeling very well. Thank youš§š»āāļø
I personally feel you have much better care in the UK & also Ballymahon in Ireland, than we have here in the States. I donāt recall seeing anyone from there question their drs. We see it often here
if you have a + AMA and elevated liver enzymes, that is sufficient for a PBC diagnosis. Biopsies aren't needed unless another disease is suspected. Your doctor is absolutely right about that. Fibroscans do give a much better picture of whether there is 'stiffness' or fibrosis. Sounds like you are being well taken care. Take care......
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. Itās not nice but I guess it could be so much worse , that is what I tell myself. We will be ok xxxxxššš
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. š¦š
Hi Gwillis . I just assumed that if LFT s are good it would help stop the progression , letās hope so . I was told it progresses very slowly and Urso slows it down even more , if we are responders to it
Xx
Yes maāam. Hope & prayer are the two powers we should never be without š¦
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.
I have copy of fibroscan
Here I googled it. These are the charts I was refering to:
hepatitiscnewdrugs.blogspot...
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 90ā95% 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)
I will look at my copy later & study it furtherš
Yes, I also have had this chart from the beginning of diagnosis. Dr said low end f2. Thank you.
You are fine then. Not to worry.
I looked at it. At the bottom he wrote F1 & F2, & circled F2.
And...when NP said no scarring in liver tissue, I wrote it on my sheet so I would not worry. For whatever that was worthš
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!
š. Thatās a relief for you Iām sure. Iām just hoping my fibrosis will still be mild with next scan.
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.
My dr prefers no biopsy unless he feels necessary. He says same thing. Iām ok with that.
Do you have a + AMA titer and elevated liver enzymes? That is sufficient for a diagnosis of PBC according to the Standard of Care for PBC. Biopsies aren't needed unless another liver disease is suspected. They aren't always accurate. They take only 1/50,000 of the liver. If the biopsy isn't taken from exactly where ' PBC might be" it can be missed completely. Hope this helps why biopsy is not needed most of the time.
Thank you. I have had 3 biopsies so far. My hep has determined I am not a good candidate for fibroscan due to the fact Iām so thin and not all technicians are good at placing the probe. My biopsies are done with ultrasound and the last one was done with a scope as well. I feel very confident in the biopsies considering the radiologist and GI go to the most suspicious areas. They take at least 5 samples of tissue.
I just want everyone aware that biopsies are no longer Standard of Care. Are you still having labs done every 3-6 months? I'm just questioning repeated need for biopsies.
I have labs every 6 months by my hep and every 4 months by my internist. My hep didnāt say it would be the standard. I just know I had a couple of fibroscans he wasnāt in agreement with and he ordered biopsy. Also had an MRE that was questionable. Thatās when I had one of the biopsies. My hep is very good and I donāt question his approach to my care. Heās the specialist.
Confidence in your doctor is very important. I hope you continue to do well.
Yes iam to. He still hasn't got me to the kidney dr. For the low sodium. Lol another day.
Some take their sweet timeš. Hopefully youāll get there soon. Hope your kidneys will be ok. š¦
Lol gotta have a sense of humor. Everything in Gods hand.
So true! Softens things when you have that faith š¤š¦
So confused, would love your opinions
Horrible dilemma update!
Right sided pain fatigue. GI specialist confused. 
Confused
