interesting convo with Rheumatologist

[CeeCee101]

Been sent to new rheumatologist to determine if I have any overlap A/I conditions on top of PBC. Was talking to her generally about symptoms getting more frequent and intense, with stronger “flares”. Follow up in 2 weeks. But the interesting part of the conversation was when I kept saying “I MUST have an overlap because my fibroscan and LFTs are stable on Urso, but my symptoms are worse!”. She’s a VERY no nonsense doc and she was basically like (not these exact words but the gist) Get Over It— you have an Autoimmune disease. And basically said I may not have any overlap. I’m passing this on because it kind of hit me—she’s basically right. I’ve had PBC for 15 years but never horrible symptoms like many of you have, UNTIL the past 2 years. Her direct approach of this is what it’s like with autoimmune diseases, period, pulled me back to reality and actually helped me put things in better perspective.

[Samanthaann]

wow, thanks for sharing. Something to think about.

[Rebekahw74]

From my experience gastros/hepatologists can be very dismissive about having PBC.

They did not explain it was an autoimmune issue. No one told me that AMA M2 attacks mitochondria (hence the debilitating fatigue). They did not tell me that urso works as an immune suppressant and that one of the side effects is fever and cold symptoms.

I should not have to rely on google for patient education. That’s a nightmare for good reason.

[CeeCee101 in reply to Rebekahw74]

Thank goodness we have the Foundation and sites like this!

[Michi1]

I have not really experienced many symptoms, but I can tell you my hematologist told me the existence of those symptoms is not always tied to the status of your LFTs or fibroscan results. There are people with pretty advanced disease who don't have symptoms and people with less advanced disease with horrible itching or fatigue. I think there's a lot they don't understand.

[CeeCee101 in reply to Michi1]

Yes I know that to be true and that’s what hit me, the rheumatologist is likely correct. We all know symptoms do not necessarily correlate to LFTs or stage, but it was hard for me to come to grips with that when my symptoms started getting worse.

[Michi1 in reply to CeeCee101]

Are you also using holistic medicine approaches to address your PBC?

[CeeCee101 in reply to Michi1]

Of course!

[Michi1 in reply to CeeCee101]

What are you doing?

[DonnaBoll Administrator]

It can be very frustrating when your lab values are 'normal' and yet symptoms appear or seem worse. Just remember that lab values and symptoms have no correlation at all. You can have mild to severe symptoms with no relationship to your lab results.

[gizocsi]

Very grateful for Your comment!