Frustration after appt: Just looking for a... - PBC Foundation

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Frustration after appt

mvilmin profile image
6 Replies

Just looking for a little insight - went to the doctor due not feeling well. Fatigue been the number one symptom. Had labs done and while my liver tests came back perfectly fine, my AMA 2 came back positive. I've waited weeks to see the GI specialist. I saw her today and she was so incredibly dismissive of my symptoms and positive AMA due to my liver tests not showing anything. She said my symptoms (fatigue, dry eye/mouth etc) have nothing to do with pbc as those are only symptoms you feel when your liver is not well. She said just because my AMA came back positive means nothing st this point until my liver tests would become abnormal. She stated she would not start me on any mediciations until my labs show that my liver is being effected. I left upset and frustrated. While she did offer to have a biopsy done she told me it really wouldn't show anything since once again my labs are fine but I insisted. Has anyone gone through the same thing? Did you get a second opinion? My next step will definitely be a second opinion as I don't believe she is going to be of any help. any help, thoughts or insight would be great appreciated!!

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mvilmin
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6 Replies
teddybear7 profile image
teddybear7

I'd have the biopsy cause you can have normal liver tests mine go up & down all the time. I was diagnosed on ama alone. & Dry eyes etc are a symptom of PBC. You can check this with the PBC foundation. I saw a different Gastro this time as my original one was on a sabbatical. She was awful & said I didn't have a poorly liver etc. I was so deflated. Hope you go on ok. X & yes everyone is entitled to a second opinion. Xx good luck.

tinypixie profile image
tinypixie

Would you consider having a fibroscan? That is less invasive than the biopsy and might give valuable information. I had a biopsy and found it incredibly painful and the results were not conclusive.

Crozes1 profile image
Crozes1

Hi My Gastro has arranged for me to have a fibroscan and said he said that he will wait for the result of that before even thinking of biopsy as he says biopsy can be inconclusive as it very much depends on what part of the liver they take it from. You could have disease in one part but not another. I do have High LFTs Not acted on for 5 years by GP so I think you could ask for a scan as why wait for possible damage. It would set your mind at rest.

mattiasw profile image
mattiasw

Yes, do the fibroscan first. Harmless, which cannot be said for biospsy.

moepag profile image
moepag

Are you in the US? I agree with Fibroscan if they have it in your area and would definitely get a 2nd opinion, hopefully, with someone who specializes in this. You are your own best advocate! If something doesn't feel right, keep looking for answers until you're satisfied!

Ktltel profile image
Ktltel

Sometimes doctors forget.... They are employed by us. Get a second opinion. Better safe than sorry.

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