What Stage am I? : I was diagnosed in 2014. I... - PBC Foundation

PBC Foundation

8,454 members7,155 posts

What Stage am I?

Balloch58
Balloch58

I was diagnosed in 2014. I have no idea what stage I am at. Due to Covid etc have not seen a consultant since 2018. Have now heard she has left. Her Secretary said I am on the waiting list for a Consultant. My 2018 appointment my Consultant wanted to refer me for a liver biopsy.

Any advice, thanks.

20 Replies

Hi there

Are you on any meds for pbc it a long time since you been seen.

Balloch58
Balloch58 in reply to kimphoebe

Yes Ursofalk, thanks for your reply.

kimphoebe
kimphoebe in reply to Balloch58

Hi there, even at the moment during this pandemic Iv been seen by my local consultant and spoken to my heptolagist in Birmingham and have had 3 us scans in the last 6 months. I can’t understand why you have not even spoke to anyone since 2018. Which part of country are you in. X

Balloch58
Balloch58 in reply to kimphoebe

I phoned my local Hospital to enquire who my Consultant would be as I found out mine has left. They could only tell me I was on the waiting list.My Respiratory Consultant wrote a letter to Cardiology in Nov 2020 asking for me to be seen.

I will contact my Doctor.

On the whole I feel well.

Thank you.

Trust that your GP has been monitoring your bloodwork? 3 years is a long time not to see your Consultant when u have been diagnosed. Not sure how it works in the UK.

Since my diagnosis, my hep likes me to see him every 3 months and I do labs at those appointments. I am in US though.

I would ask your doctor if they could speed things up for you, or at least they could arrange for your blood tests to be checked and maybe an ultrasound. That in itself will inform them how your doing and make sure there are no red flags.

Having these results ready for your consultant appointment when it comes is surely a good thing to have. They will probably need some updated results given how long ago you’ve seen someone. Given most places at the moment are telephone consultations it can only help.

Balloch58
Balloch58 in reply to Candy12

I do have my bloods taken and I have them on a graph. I am concerned that no one is reviewing them as my Consultant has left and I am on a waiting list.My LFT's are always good it's my IGG that is usually 36 or 38 and the upper range is 16. I will arrange a phone appointment with my Doctor.

Thank you for your response. 😀

I do not think they stage us in the UK, I was diagnosed in 2006 and have never been staged. Ask your surgery to take your bloods and get a copy, once you have them you can speak to the GP until you can get an appointment with a specialist. Liver biopsy is no longer needed for PBC diagnosis (and IMO something to be avoided if possible) it is only if there is a possibility of an overlap condition that a specialist may need more information. Try tuning in to the Thursday afternoon Q&A sessions details on the PBC Foundation website where you can direct questions to a specialist. Another thought if you have other hospitals within travelling distance your GP can refer you elsewhere.

Best wishes

I'm in UK and I got staged from fibroscan. I'm F2-3. I have bloods every 6 months prior to being seen or having a telephone consult with my liver specialist.

Specialist told me staging not important when I asked. Bloods every month at doctors since he's not been able to see me due to covid, ( he can check results from them and phones me to discuss them if need be). He would see me usually ever 3 months.

I’ve never been staged, I have bloods and an appointment with consultant every 6 months. Perhaps your gp surgery might be the best place to chase this up, you should be under the care of someone.

Thanks.

The last Time I saw my consultant was 2019 , I had my bloods done last year and received a letter from him on the 2nd December saying he wasn’t happy with my alp and would arrange a telephone appointment in the new year still haven’t heard anything I’ve phoned his secretary 3 to 4 times a week and left messages but hasn’t got back to me .

I am in the uk and I am stage 4.Iv had loads of scans,fibroscans and biopsy.

I must say my consultant is brilliant making sure I get bone density/pain management/bloods done every 3 weeks etc

I also attend Edinburgh transplant team.

Have only had 1 scan in 2020 mind you which does concern me🤔😱.

I am in Glasgow.

Balloch58 do you live in Balloch???

Yes, Balloch Loch Lomond.

Hiya I live in Bishopton just beside Erskine bridge so you are 10 mins away from me.

Good to know, although Covid restrictions don't permit us to leave West Dunbartonshire. I hope you are keeping OK.

I know it's a nightmare.My sister stays in Helensburgh I haven't saw her since last summer.

Theres a few Pbc meetings that happen in town so next time there is something on maybe you could join us x

Thanks, that would be great. x

You may also like...