1st appointment. What to ask

[Trots]

I was diagnosed in August by hepatologist based on my gp blood test. They did further tests on the day and I've had ultrasound and fibroscan. I'm taking Urso daily. Tomorrow is my first appointment since august. I expect they will explain results from the various tests.

Is there anything specific I should ask them?

Should I ask for bone density test? Is that done as standard or only if other concerns?

I'm on waitinglist for rheumatology but could be another 2-3 before I get appointment. I'm based in Northern Ireland.

Could my pbc diagnosis and possibility of comorbid arthritis speed up appointment?

[butterflyEi]

HI Trots

It is good that you have had an ultrasound and fibroscan it will give a base line. It is now being recommended by the PBC Foundation that we know our numbers so a copy of your blood test results is always a good thing to ask for. It is not so much that you need them from a visit by visit point of view but it does help to build a bigger picture. I have them on an excel spreadsheet since diagnosis. Once your PBC is under control and if you do not have any symptoms then I suspect you will be seen once a year. A bone density scan (DEXA) was only recently offered to me after asking about it (diagnosed 2006) and will be redone about every 4 years. It may be different for you once you are under the care of rheumatology. It maybe worth reading the new EASL guidelines on the PBC Foundation website (free to join although donations are gratefully received) they also have some useful video (link below) which you may like to look at.

pbcfoundation.org.uk/existi...

There is also a rather old recording, but still relevant, by LIVErNORTH which you may like to look at youtube.com/watch?v=UO83trY...(Not working as expected?)

I see you posted 12 hours ago so your appointment is today. Ask what will be your treatment plan and if you have any symptoms such as fatigue or itching ask what they can do for you.

Let us know how you get on.

[ninjagirlwebb]

My US based hepatologist ordered a Bone Density test shortly after my diagnosis 5 years ago to establish a baseline. I have had 3 of them so far.

Pbc makes us more prone to low bone mass. To counteract, I make sure I take calcium & vitamin D.

Yes, get copies of all your tests. In the US, we get them on line via a patient portal. And my doctor already knows to give me hard copies of all reports not in the portal. He said you should have copies for yourself.

Have a good appointment.

[gwillistexas in reply to ninjagirlwebb]

Do you also take a k2 supplement to direct your calcium to your bones instead of your arteries?

[ninjagirlwebb in reply to gwillistexas]

No...I am not aware of that. I will ask my endocrinologist about it.

[gwillistexas in reply to ninjagirlwebb]

Let me know😊