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PBC Foundation
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Latent consultant

Hi is it just me or does anyone else have trouble getting their follow up appointments with their consultants. Mine said he wanted to see me in 4 months, back in June.

I had to go for an ultrasound on Tuesday because I have been having some trouble...keep having weird do's that feel like heart attack, but it's not my bloods and ecg are fine.

On the 28 Dec, I was sat watching telly and had a very odd bursting sensation, my entire digestive track felt like it was on fire and I mean the whole front of my body; and within 30 seconds I had to run to the loo.....not pleasant to speak about but what came out was also very acid hot....it was pure bile in it's liquid form..... and nothing else.

I had my gall bladder removed and wonder if it could be related to that, or the fact that I use to have a stent in ,my bileduct.....really unusual and quite scary because with AIH/PBC you never know what will happen next.

Take care

8 Replies

Good morning.

Sorry to hear that, that does not sound fun at all


My consultant also says he wants to see me in four months but as he says that it others it never is so it stretches to five or six. I had my gallbladder out 4 weeks ago and have problems with digestion its early days as I hate to think its permanent. I also found out yesterday that I have fibrosis on my lungs too. Not a good new year so far.


Hi Conniefused

Can you speak to the secretary of the specialist and see what you need to do to get an appointment or if the hospital that you go to has a booking system telephone them and get an appointment. Your condition on the 28th sounds awful so I hope you get an appointment soon. If all else fails I think you must go back to the GP.

best wishes


Hello conniefused.

When I was seeing the consultant at local hospital my appointments were made before I left.

I got an appointment card given to me that had my personal details on it already when I turned up for my 2nd appointment in 2011, this being the first appointment after being diagnosed with PBC Dec 2010. I thought in the UK that is how it works.

I have been to ENT several times in the last few years and what usually happens is the appointments are made before I leave. When I went in December (I have a minor nose graze, at the moment due to it not being active the consultant said he'd see me in 3 months and then decide from there), due to the appointment being a longer timescale and the receptionist not having appointments so far ahead she said I'd receive one in the post. That occurred the very next day.

I know I got a 6 months appointment for ENT from my previous visit but I rang the hospital after I started having a few very minor problems and the person I spoke with said she'd bring the appointment forward for me and I received the confirmation appointment she made over the phone with me. I know this is ENT and not PBC related but I haven't been to Hepatology for 4yrs (I asked the consultant if he'd discharge me. He agreed unless I need to return), but I am sure if you were to ring the hospital direct and explain you'd be given your appointment.


I had to ring up and demand an appointment with my gastro as he left me for 18 months. Also I have had cramps in my chest that feel like a heart attack, i went to my GP and he seems to think it was nothing to worry about, also last week I woke at 5 AM in the morning with a terrible pain in my lung, could not take a deep breath etc. I took one ibuprofen ( not telling you to do that though) My chest is still quite sore up the centre though, I felt like I had been kicked by a horse at the time. please let us know how you get on X


I am finding that from time to time some of my hospital appointments cancelled both for my pbc and lymphoma check-ups, sometimes already having had my bloods done in readiness for those appointments. That makes it longer between appointments but I am fortunate as apart from tiredness I do not have any other symptoms at present.


Well I didn't get to see a consultant. A saw a registrar who Googled pbc and said I would have to have a biopsy until I told him they were no longer common practice! I always think it's good to be nice to the secretary until she remembers you. I was also told every six months but my appointment is eight months from my first. Here in Dublin you tell the secretary after you are seen that you need an appointment in, say, four months and they post your appointment out. ??? But I'd have no problem pleading ignorance and ringing them up. Best of luck.


Unfortunately, in the London area, the doctors don't have secretaries but just a central typing service and a call centre. Frustrating for both doctors and patients. Also individual phone numbers and email addresses are being withdrawn, saving money. Now used to having appointments changed for no reason, and cannot find out if these changes have anything to do with medical opinion.


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