Finally I have my hospital appointment.

[Twinkle26]

It's finally here tomorrow I have my first hospital appointment since my positive AMA blood test back in October. I'm not sure what is going to happen or what they will say but I will keep you posted.

[Dese]

Hi good luck for tomorrow. I just want to say I'm newly diagnosed about 4 months now with PBC the doctor never told me a thing just gave me tablets than sent me on my way I go back April. If you are diagnosed with something make sure you ask some questions I didn't get the chance. Will be waiting tomorrow for your post good luck again

[Twinkle26 in reply to Dese]

Thanks I will keep you posted.

[Goldsworthyhelen]

I'm at the hospital tomorrow to see consultant , different one to man I saw in February . I don't know when I'll be back to see them again ,will find that out tomorrow but I will have been seen twice in four months .

I am having bloods taken monthly until the consultant says otherwise and on 4 urso tabs ...250 m Good luck tomorrow

[Twinkle26]

Thank you.

I'm not expecting much as going by everyone's experiences, I just hope my mouth works lol

[LisaC22]

Good luck tomorrow. You might want to think of writing down some questions to bring with you. I did that recently & found it very helpful because I would forget half of them otherwise! I'm also keeping a running list for my next visit too. On the positive side at least you found here beforehand. If you are diagnosed then you know it's not the end of the world. Most of us find this place after diagnosis & while in a complete panic! Oh & dont forget to write down the answers too! No point in asking lots of questions if you can't remember the answers 😉 Do keep us posted & good luck again.

[Jaxter]

Hi Twinkle26,

Good luck tomorrow, I always make a list of questions like LisaC22 as as soon as I get there my mind always goes blank! I jot things down in between appointments, usually when I see something of interest on here.

xx

[Jtxx]

Definitely find writing down all the questions you want to ask is helpful so you don't forget anything. Also write down the answers and any other relevant things the consultant says. There is no cure for PBC but you can slow down the progression by taking Ursodeoxycholic Acid. The strength is dependant on your weight. Good luck tomorrow.

[Twinkle26]

I was waiting longer than I was actually in with the liver specialist.

He was nice and to the point, so after waiting since October ( when I was informed I was AMA positive after many blood tests) he told me the blood tests on record were from July last year and he wants me to have more blood tests lol and go back in 3 months. When he gets the new blood results he will be in touch with the GP to prescribe any meds I may need. He's also sending me for a scan of my liver, which I have to wait for an appointment for. He spoke about PBC quite a lot and said I'd had a few markers, positive AMA, itching, aches and pains.

Underactive thyroid, chronic tiredness. But my blood liver test wasn't high 6 months ago.

So bloods, YELLOW- LFT, GGT, AST, FE, IGS, TFT, FERR.

PURPLE- FBC

YELLOW- TTG

GREY- GLU

I COPIED THIS FROM THE FORMS.

I asked about the cold fingers and toes and he said could be related to rheumatoid arthritis, ( which I don't have, so far) mines osteo.

[amt50 in reply to Twinkle26]

I might be getting confused as I am newly dx end of November 15, I thought positive AMA was the indicator of PBC as soon as I was dx with AMA I was prescribed Ursofalk?

I might be wrong I have for the last month tried to put PBC is a box out of my head as I was getting very depressed about the whole thing.

I've had my appointment for Liver consultant/specialist for 25th Feb, when I was dx I saw a Gasro doctor.

So confusing...

[Twinkle26 in reply to amt50]

Hi amt50,

Yes your right it is an indicator and I do have pbc, I have been told I should have the urso but the specialist wants to wait for his blood results even tho I have other factors I'e itching and lethargy aches and pains etc. I was a little upset that I have to wait even longer for the medication but I suppose they have their reasons, I just wish they would let us in on it too.

I will keep you posted.

[amt50 in reply to Twinkle26]

Where are you from? I cant believe you have not been prescribed Ursofalk! Yes, please keep posting all information is very useful on this site

[Twinkle26 in reply to amt50]

I'm in London.

[amt50 in reply to Twinkle26]

In in Wolverhampton, apprantly there is a PBC clinic in Birmingham u would have thought the same in London 😀😀

[Twinkle26 in reply to amt50]

There are specific hospitals but you have to be referred by the dr you are under.

This has only been my first visit so we will see what happens next.

[queenofjunk in reply to Twinkle26]

Hi Twinkle

Can I ask where in London you are

[Twinkle26 in reply to queenofjunk]

I'm in east London e14

[queenofjunk in reply to Twinkle26]

I'm E13 

Helloooooo

[Twinkle26 in reply to queenofjunk]

Hi not so far away then lol.

How long you had Pbc, how are you getting on with it all?

[Goldsworthyhelen]

My experience today was better than I thought or expected. I saw a consultant today at clinic as I was told I would. He was excellent as was the nurse.

I had questions answered and things explained thoroughly . We went through all 3 months blood results . My consultant knew pbc now called primary biliary cholongitus. He agreed with the physio recommendations and put in place scans to see if problems PBC related or quite different. If he is happy with what is happening he will see me in 6 months, if not sooner. Liaison between GP and consultant very good. I hope you get seen soon. I would make a fuss at GP and insist they get you sorted. X