Liver Biopsy Negative can it still be PBC?

[Needmercy]

I had elevated Alkaline Phosphate of 146, ALT (SOGT) of 45 and a positive ANA with a titer of 1:320 so my primary doctor sent me to a gastroenterologist. He thought I just had fatty liver but did more bloodwork and scheduled me for an ultrasound, He called when the labs came back and said he wanted tod do a liver biopsy because he was concerned about PBC. My Actin (Smooth Muscle) Antibody was fine at 9 but my Mitochondrial (M2) Antibody was high at 23.8, the notes below on the report said that 90-96% of PBC paitents have a positive (M2). My steatosis score was also elevated at 0.56. I had a liver biopsy and the results came back showing no damage or signs of PBC and less than 5% fat in my liver. Can you have PBC and also have a normal liver biopsy with no signs of PBC?

[4pjx__]

Hey, Needmercy! I am pretty sure you can have PBC and no liver damage. Sounds to me like they caught it early! This is great news. Usually people with PBC will test positive for AMA and have elevated ALP and bilirubin. Did the reports say what your bilirubin is?

-Pam

[Needmercy in reply to 4pjx__]

Bilirubin was good 0.2

[4pjx__ in reply to Needmercy]

Well it’s good you have a doctor figuring it out! They’ll get to the bottom of it sooner or later.

Best wishes!

[Flid]

hi Needmercy

Has the doctor said it definitely isn’t?

I just had PBC confirmed. My liver is also not fatty, no fibrosis etc. Pbc confirmed by high AMA and Alp, and then finally with another blood test for IgM. Smooth muscle and the other multitude of tests etc all negative. My liver levels are only slightly higher than yours although bilirubin is 6.

So yes, it’s possible. You should definitely keep checking until you get a definitive answer but there is no sign that you need to worry about the extra time it takes to get a clear picture. I know it’s frustrating not to know immediately but you are in a good situation having investigations so early.

Of course it’s also possible it isn’t pbc!

[Zelda5 in reply to Flid]

Hi Flid can I ask what your Igm was and do you know if it can be high in other autoimmune conditions? I have Hashimoto's and fatty liver and Alp is 169 but the Dr has waffled a bit on whether it's the fatty liver or pbc that's causing it. My Igm has never been tested.

[Flid in reply to Zelda5]

My IgM was 3.46 when upper limit is 2.5g/l. I don’t know if raised is indicative of anything else. I already had consistent raised Alp hovering around 175-185 (and a few other raised but not startling high liver enzymes) when they found the very high AMA. The consultant used the IgM as final word - my fibroscan, MRI and ultrasound all showed no liver damage and no fatty liver.

The AMA and IgM seemed to be the signs for me because the other LFTs had been hinky for 18 months before they tested AMA which raised the red flag for PBC and then the IgM was used to confirm it.

[Zelda5 in reply to Flid]

Yeah sounds like he made the right call.

[Needmercy in reply to Flid]

It doesn't look like they checked my IgM. I see rheumatology next month so I assume they will do more bloodwork. Thank you for the feedback!

[Zelda5]

Yes, you can, early PBC can be focal and patchy in early stages and can be missed by a biopsy. A biopsy only tests 1/50,000 of the liver. So, it can miss those affected areas. I think that's one of the reasons they are steering away from them anymore. I think once your Alp gets up to 1.5x upper limit of normal then they should treat it with Urso.

[Needmercy in reply to Zelda5]

Thank you for sharing! This is a lot and I'm shocked to see the difference in treatment and advise from physicians.

[Flid]

I am pretty new to this but it seems to me that it’s not so much the treatment that varies. There aren’t that many options so it’s really just degrees of treatment according to what kind of symptoms you have and how far your condition has progressed. Each person is individual and reacts to drugs in different ways and has a different starting point depending on their condition or multiple conditions .

Pbc seems to be rare enough that many in the medical field haven’t seen it before and perhaps don’t know enough about it so you have to choose your specialist carefully (or be lucky). The fact that severity of symptoms and degree of fibrosis do not always match means it can manifest in such varied ways that each consultant has to prescribe according to what they feel is the best approach for their particular patient but they are largely the same. There is a lot of juggling involved in seeing what is tolerated and what works best to ease the symptoms but treatment for the pbc itself, urso, is pretty uniform.

I was lucky to find out so early, by chance, when they were looking for something else, and I think that’s true for many who are diagnosed without any significant symptoms. That being said the symptoms themselves are ambiguous enough to be markers for many much more common issues so it does take time to rule out the more probable causes. Also I think many people have more than one issue going on and separating the symptoms to make more than one diagnosis can be a puzzle.

[Zuske]

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[Ackie123]

I have Pbc diagnosed with blood tests . Never had a liver biopsy