Totally ConfusedšŸ¤Ø: Gā€™morning. Iā€™m hoping... - PBC Foundation

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Totally ConfusedšŸ¤Ø

gwillistexas profile image
ā€¢49 Replies

Gā€™morning. Iā€™m hoping Robert can help me understand my question. Iā€™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 ā€œpicture 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 GIā€™s NP if I will have periodic ultrasounds & she said no. GI also said he doesnā€™t do many biopsies anymore, that he prefers fibroscan. NP says if I want true staging I should have biopsy. Conflicting info. Iā€™m up in the air to say the least.

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Ktltel profile image
Ktltel

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

gwillistexas profile image
gwillistexas in reply to Ktltel

Let me say this, this is not something new. My fibroscan was done when first diagnosed last year. Iā€™ve had a year to think about it all. But I attended a chronic liver support group this past Tuesday & thatā€™s what got my thinking in this mode. I donā€™t want to repeat but ultrasound perfectly normal. Mild fibrosis from fibroscan. GIā€™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 ā€œno, fibroscan is liver onlyā€. Contradictory to what she told me at first visit. Thatā€™s my confusion. I totally understand what fibroscan does. But something doesnā€™t add up. Thatā€™s ok, I have labs July 5th & see Internist July 12th. He will explain his definition of ā€œpicture perfect liverā€.

gwillistexas profile image
gwillistexas in reply to Ktltel

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. Iā€™ll find my answer, lol!šŸ¤—

Ballymahon2 profile image
Ballymahon2

Pbc is very complex

ninjagirlwebb profile image
ninjagirlwebb

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 weā€™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 patientā€™s lab work history. All of these diagnostic tools allow the doctor to see a comprehensive picture to help manage your condition.

ninjagirlwebb profile image
ninjagirlwebb

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.

Ballymahon2 profile image
Ballymahon2

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

gwillistexas profile image
gwillistexas in reply to Ballymahon2

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

Ballymahon2 profile image
Ballymahon2 in reply to gwillistexas

Yes

gwillistexas profile image
gwillistexas in reply to Ballymahon2

Thank you. Thatā€™s the answer I was looking for. Have a great day & weekend šŸ¦‹

Jacqui0112 profile image
Jacqui0112

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

gwillistexas profile image
gwillistexas in reply to Jacqui0112

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 doesnā€™t just scan the outside of the organs.

GrittyReads profile image
GrittyReads

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.

gwillistexas profile image
gwillistexas in reply to GrittyReads

GrittyReads...thank you. thatā€™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 doesnā€™t measure scarring in ducts, only liver. So, you see where I got confused? Your explanation is greatšŸ˜Š

gwillistexas profile image
gwillistexas in reply to gwillistexas

Typo...ā€fibrosis ā€œ in ducts.

gwillistexas profile image
gwillistexas in reply to GrittyReads

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.

Mirimaur profile image
Mirimaur

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. Itā€™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 . Iā€™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.

gwillistexas profile image
gwillistexas in reply to Mirimaur

Miramaur, thank you. Youā€™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 youā€™re doing wellšŸ¦‹

Mirimaur profile image
Mirimaur in reply to gwillistexas

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 donā€™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

gwillistexas profile image
gwillistexas in reply to Mirimaur

Thatā€™s wonderful! Yes Iā€™m feeling very well. Thank youšŸ§ššŸ»ā€ā™€ļø

gwillistexas profile image
gwillistexas in reply to Mirimaur

I personally feel you have much better care in the UK & also Ballymahon in Ireland, than we have here in the States. I donā€™t recall seeing anyone from there question their drs. We see it often here

DonnaBoll profile image
DonnaBollAdministrator in reply to gwillistexas

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......

Mirimaur profile image
Mirimaur

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. Itā€™s not nice but I guess it could be so much worse , that is what I tell myself. We will be ok xxxxxšŸ’œšŸ’–šŸ’–

gwillistexas profile image
gwillistexas in reply to Mirimaur

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. šŸ¦‹šŸ˜Š

Mirimaur profile image
Mirimaur in reply to gwillistexas

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

Xx

gwillistexas profile image
gwillistexas in reply to Mirimaur

Yes maā€™am. Hope & prayer are the two powers we should never be without šŸ¦‹

DonnaBoll profile image
DonnaBollAdministrator in reply to Mirimaur

I hope you are being positive as well. Living our best life is what we all should be doing, right? Out attitude can make such a difference. Thank you for sharing how important this is.

ninjagirlwebb profile image
ninjagirlwebb

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.

gwillistexas profile image
gwillistexas in reply to ninjagirlwebb

I have copy of fibroscan

ninjagirlwebb profile image
ninjagirlwebb

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

hepatitiscnewdrugs.blogspot...

ninjagirlwebb profile image
ninjagirlwebb in reply to ninjagirlwebb

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 90ā€“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)

gwillistexas profile image
gwillistexas in reply to ninjagirlwebb

I will look at my copy later & study it furtheršŸ˜Š

gwillistexas profile image
gwillistexas in reply to ninjagirlwebb

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

ninjagirlwebb profile image
ninjagirlwebb in reply to gwillistexas

You are fine then. Not to worry.

gwillistexas profile image
gwillistexas in reply to ninjagirlwebb

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

gwillistexas profile image
gwillistexas in reply to ninjagirlwebb

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

Rosehip19 profile image
Rosehip19

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!

gwillistexas profile image
gwillistexas in reply to Rosehip19

šŸ‘. Thatā€™s a relief for you Iā€™m sure. Iā€™m just hoping my fibrosis will still be mild with next scan.

My-life profile image
My-life

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.

gwillistexas profile image
gwillistexas in reply to My-life

My dr prefers no biopsy unless he feels necessary. He says same thing. Iā€™m ok with that.

DonnaBoll profile image
DonnaBollAdministrator in reply to My-life

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.

gwillistexas profile image
gwillistexas in reply to DonnaBoll

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 Iā€™m 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.

DonnaBoll profile image
DonnaBollAdministrator in reply to gwillistexas

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.

gwillistexas profile image
gwillistexas in reply to DonnaBoll

I have labs every 6 months by my hep and every 4 months by my internist. My hep didnā€™t say it would be the standard. I just know I had a couple of fibroscans he wasnā€™t in agreement with and he ordered biopsy. Also had an MRE that was questionable. Thatā€™s when I had one of the biopsies. My hep is very good and I donā€™t question his approach to my care. Heā€™s the specialist.

DonnaBoll profile image
DonnaBollAdministrator in reply to gwillistexas

Confidence in your doctor is very important. I hope you continue to do well.

My-life profile image
My-life

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

gwillistexas profile image
gwillistexas in reply to My-life

Some take their sweet timešŸ˜. Hopefully youā€™ll get there soon. Hope your kidneys will be ok. šŸ¦‹

My-life profile image
My-life

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

gwillistexas profile image
gwillistexas in reply to My-life

So true! Softens things when you have that faith šŸ¤—šŸ¦‹

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