MRI looks good... am I in the clear? - PBC Foundation

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MRI looks good... am I in the clear?

chynablue profile image
12 Replies

My MRI results are in! I have fatty deposits in my liver, but no bile duct damage or scarring and everything else looks ok.

My blood work showed elevated AST and ALT, which is consistent with fatty liver. I also tested positive for AMA M2 antibodies. ALP and bilirubin were normal. I have pretty bad fatigue, but no itching.

I see the doctor tomorrow to discuss everything. So, it looks like I can be diagnosed with Fatty Liver Disease, but negative for PBC? What do you think?

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chynablue profile image
chynablue
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12 Replies

Hello chynablue.

I was positive for the AMAs back in later 2010 after seeing a GP early 2010 for itching (had fatigue I never thought much of at the time). I was then found to have abnormalities within the liver function test which led me to the path to being diagnosed with PBC.

I never had an MRI scan nor liver biopsy, just the standard ultrasound that showed my liver and surrounding organs to look normal as did the bile ducts as the consultant said at hospital on my first appointment as he said he could make them out.

I thought having AMAs were for PBC. You can develop a fatty liver even in PBC apparently. If you have fatty liver disease I expect it will be NAFLD as the terminology I understand is. There are leaflets to be read online at British Liver Trust for this and of course PBC and several others to do with the liver.

chynablue profile image
chynablue in reply to

Thanks, Peridot. Its good to hear from someone who also had normal looking organs and bile ducts on the imaging. The British Liver Trust website is really good. I enjoyed the articles. I went to the doctor today and he diagnosed me with Fatty Liver Disease and PBC. He said he was quite certain that I have PBC because of the AMAs. He said that the blood work and imaging scans were consistent with Fatty Liver Disease, and while we were checking that out, we got lucky and caught the PBC early.

He said my bloodwork doesn't show elevated Alkaline Phosphatase and Bilirubin (which is common with PBC) because we caught it early, not because I don't have PBC. I was thinking that I might be in the clear because I did not meet all the diagnostic criteria, but no. I have my diagnosis.

So, I start on Ursodiol tomorrow and follow up appointments have been scheduled. I think I'm going to do another post to go into detail with all my doctor said today.

teddybear7 profile image
teddybear7

Well we're all told different things sometimes. I was told it was only a biopsy that could positively confirm PBC that it was pointless having a scan. But when I tested positive for AMA's they didn't even bother with that.

chynablue profile image
chynablue in reply to teddybear7

Hi teddybear, I hope I can avoid biopsy. Sounds scary!

dianekjs profile image
dianekjs

Hi, that's great that the MRI indicates no bile duct damage at this stage, and hopefully it will stay that way. However, the fact remains that positive AMA's are highly specific for PBC. Do you know what your titer is? My highly regarded liver specialist told me that people with positive AMA's nearly always have or will develop the disease. Mayo Clinic agrees - "An analysis of your blood may reveal anti-mitochondrial antibodies (AMAs). These antibodies almost never occur in people who don't have the disease, even if they have other liver disorders. Therefore, a positive AMA test is considered a very reliable indicator of the disease. However, a small percentage of people with primary biliary cirrhosis don't have AMAs."

So - are you in the clear? With your elevated enzymes, symptom of fatigue, and positive AMA, I think most doctors would place you on close "PBC Watch," as the probability of developing the disease at some point is unfortunately high. I don't mean to worry you more, but rather to encourage you to remain proactive about continued interval testing so that if any bile duct damage develops you can intervene with Urso, which can significantly slow progression when caught early. Best of luck to you.

chynablue profile image
chynablue in reply to dianekjs

Hi dianekjs, my AMA M2s were 118.8 units. Anything over 24.9 is considered positive. I kept searching for whether you could be AMA positive but PBC negative, so the quote from the Mayo Clinic is very helpful. Thank you :)

dianekjs profile image
dianekjs in reply to chynablue

I'm glad you found the link to be of help. Even though the evidence would seem to support a PBC diagnosis now or in the future with that high of an AMA level, we will hope you are able to beat the odds and remain asymptomatic. You may want to have an ultrasound in 6 months or if symptoms develop. An MRI is fine as well, but if they are insisting on contrast, please try to avoid repeat scans. The gadolinium used as a contrast agent is a heavy metal and is very toxic to human tissue. While most is excreted, it is now known that some remains in brain tissue as well as other organs and is cumulative. Ultrasound and MRI's without contrast are the safest choices. Lots of new evidence and research surfacing about this. Best of luck to you - please keep us posted on your progress.

chynablue profile image
chynablue in reply to dianekjs

Yikes! Yes, my MRI was with contrast and the doctor ordered another one in 6 months. I will ask him about doing it without contrast or using something else!

Donna2641 profile image
Donna2641

R u just newly getting dx? It could be so many things or nothing. I'm sure your doctors are looking into it. What are your ALT and AST levels? Have they checked you for other things already? ANA, SMA? The only way to tell for 100% is biopsy is what I've heard.

chynablue profile image
chynablue in reply to Donna2641

Hi Donna, yes, I'm new to the PBC stuff. ALT is 170 (normal is 0-32). AST is 113 (normal is 0-40). ANA is negative. Actin (Smooth Muscle) Antibody is negative.

Andrei profile image
Andrei

Hello to all.Regarding Ama and pbc i think that before developing PBC a big nr of pacients have fatty liver.My case was :For 4 years i have ast and alt elevated.This tear found Ama 26 .After urso 12.5/kg and diet ( removed all SUGAR) in 3 months liver enzime got normal, reduced my weight from 85 to 79 kg and AMA droped from 26 to 20 (equivoch) Now my dr reduced urso at 10 mh/ kg and in january will see the evolution.I admit that i introduced some sugar in my diet in the past 2 months.

I think also tha Ama appear as a result of the fatty liver in a big nr of patients.When the inflmation drops also the Nr of Ama is lower.So please try to reduce the fatty liver by reduce the sugar in your diet for tree months ..Than see the Ama Titre and let us know. Mine droped to almonst NEGATIVE after i removed the sugar .Best regards to all

DonnaBoll profile image
DonnaBollAdministrator

great on your MRI results. It's important though to continue liver enzymes' lab tests every 3-6 months and regular check up with your doctor. A + AMA and elevated liver enzymes are often sufficient for a diagnosis of PBC. I would want to make sure if I have it or not....I would ask about taking Urso in the meantime.

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