I've had an AMA test and lots of other tests and all come back negative. Has anybody else had a negative PBC test ?

[Katiecat]

I'm still getting loads of PBC type symptoms. I ache like crazy every day and feel exhausted, I have severe itching every evening and red marks that appear on my body without scratching, acid reflux, diarrhoea when I eat fatty foods. Of course I'm happy that everything is ok but I've got no idea whats going on with my body as GP and I were convinced it was PBC.

I'm just worried I'll just be seen as a hyperchondriac !!

I have a hospital appointment in January and just wondered what I need to ask the consultant.

[Nissa]

Hi Katiecat,

Yes, I had several blood tests come back negative for PBC. In fact, I didn't start getting positive results for PBC on my blood work until after I had a liver biopsy (which really isn't as scary as it sounds). Even then, my liver specialist wasn't 100% sure I had PBC (partly because my liver enzymes were bouncing around- they would be high on one test, but normal on the next) but she put me on Usrodiol, and my liver enzymes started coming down.

There are other things that could be causing your symptoms, but if you are concerned about PBC, don't be afraid to ask for more blood tests. If you think the consultant thinks you are a hypochondriac, you could tell him/her that doing the tests again will give you peace of mind.

[Katiecat in reply to Nissa]

I'm so glad you replied as I was so convinced it was going to be positive. I had severe cholostasis when I was pregnant with my twins 16 years ago so I know what that itching feels like. I remember at the time my bile acids didn't show up until some time after the itching started.

Thank you for helping me not feel like a crazy woman !

[Kaywal]

Hi Katiecat. I'm AMA negative but a liver biopsy showed positive for PBC. It took two years for me to get a diagnosis from first seeing a liver specialist (after GP found elevated LFT results).

[Katiecat]

Thank You Kaywal, My first set of results showed elevated levels and I had chance to discuss it with GP when they did the tests the second time The nurse just told me 'everything is fine' and bascially made me feel like what shall I do now. Will let you know how I get on at the hospital in Jan

[Kattyjones in reply to Katiecat]

Hi,

Have you thought of being checked for fibromyalgia???

I have fibro and was diagnosed 15yrs ago, have had high ANA levels for 18yrs with no diagnosis to why and then they diagnosed pbc high AMA levels 2 years ago.

Fibromyalgia symptoms are quite often mistaken for PBC symptoms and vice versa.

Hope this helps a little