PBC Foundation
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Consultant appointment

Could you tell me what to expect at my first appointment. Will they examine me, will they take bloods, will I have to have any scans, will I need a liver biopsy. Will they start me on meds there and then? Sorry for asking so many questions but as they say knowledge is power.

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Hi

its always an anxious time, not sure if you are UK based but for my first appt I had a clinical examination, ( just palpation of abdomen to feel if liver enlarged) looking for red palms and spider veins. Nothing horrid or intrusive. Then I had a BC done ( becomes routine as part of every visit) My Consultant did not feel the need for a biopsy and I only had scans later on ( ultasound and MRI) after my BC's deteriorated. That was a year later

I also was started on URSO that day, they do weigh you and work out the dose from that. I am sure all Consultants have their personal preferences though?

Hope that helps and good luck

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My first appointment with the gastro registrar came about because of a referral by the rheumatology department who had carried out blood tests. It was as a result of the blood test findings that rheumo referred me to gastro. The gastro registrar had the results of my blood tests in front of him and said they showed I had PBC. He made notes of my medical history and asked what symptoms I had. He told me I needed more blood tests, some scans and a liver biopsy to confirm extent of liver damage. He did not examine me at that time or give me medication.

The choice of whether to perform a liver biopsy seems to differ from consultant to consultant and health authority to health authority.

I had an MRI scan, an ultra sound scan (similar to that which you have when you are pregnant), blood tests, blood tests 2 days before biopsy to check on the clotting and then the liver biopsy. My first appointment was at the end of October 2010 and by the 1st week in December 2010 all the tests had been done.

My 2nd appointment was in January 2011 when I was given the results by the Gastro Consultant. He went over my medical history and symptoms, palpated the area of my liver, gave me the results of my scans, biopsy etc. and prescribed me with URSO. I was then given an appointment for 6 months later and advised to have blood tests 2 weeks before that appointment.

By my 3rd appointment there had been an improvement in my readings ....sorry I do not know or necessarily understand the technical terms they use. My next appointment was 12 months after that, by that time my readings were almost normal.

Do not be afraid to ask questions we have all been and are going through this, so who better to ask than those who have already been through it.

Best wishes and take care of yourself

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When I went for the first hospital consultant appt Oct 2010 after the GP exhausted his blood tests and also had sent me for a scan, I had to endure waiting 13wks to go and in that time I thought I had had the AMA test at the GPs surgery as I failed to find out what the last blood test he performed was (asked at the hosp., it was the copper to check for Wilson's Disease).

A nurse called me and then weighed and took my height and also blood pressure and asked me for the urine sample I was requested to take in when I received the hospital appt confirmation letter.

I waited to see the consultant who asked me quite a few questions and then he felt all round my tummy area plus checked my ankles and also my hands and eyes.

He then said he was going to do special antibodies (blood) test so I said was it to check for PBC perhaps. He then said I'd heard of PBC then and yes it was one of them (I also had the ANA test same time, that was negative).

I wasn't sure about liver biopsy prior to going as wasn't sure if I had the AMA test but know that these days if it is pretty conclusive that one has PBC via this test a biopsy is unnecessary these days. (I've not had one nor has one been mentioned by the hospital consultant altho' my GP did mention the fact I would prob be offered one but he didn't know a thing about PBC and said it was pretty new to him when he got the diagnose thru from the hospital to inform me and give me the script for urso.)

I had a 2mths wait after I had the AMA blood test done for the results and then on my 2nd visit to the consultant Feb 2011 all he did was fill me in a bit on PBC but said he didn't need to say too much as I had read about it but I'll not forget that I already knew that for some it can lead to transplant eventually whereas my husband didn't seem to really wake up until he ended with this as coming from a doctor, made it even more real to him.

I chose to get the hospital consultant to agree (Oct 2011 my 3rd appt) with me that I could be discharged for now as I'm pretty stable with just the itch. I decided that since diagnose if all I was doing was visiting the hospital to be then called by a nurse to have my weight (and funnily enough not my blood pressure the 3rd time) attained and then sit about for the consultant to shout from down a corridor for me and then disappear back into his room for me to go and find him to then glance at the computer screen and ask me how I was feeling to then have to wait again for a nurse to take bloods, thought I'd rather go to the GPs for that. For now anyway whilst the going seems good.

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Presumably you have been referred as a result of abnormal blood tests or another symptom. You can expect to be weighed anf your blood pressure checked, usually by a nurse or aide, before seeing the consultant, When you do it is likely that your mind will become a complete blank so write down any questions you have and take the list with you. The Consultant may palpate your liver and will check you for spider veins. It is always helpful to have had your bloods taken prior to the appointment so that the results can be discussed with you. You may be asked to consent to a liver biopsy (I was but that was many years ago) as an aid to daignosis. You will almost certainly be required to start on Urso as soon as the diagnosis has been made. Thereafter you can expect to have bloods done every 6 months and to see your consultant annually if matters are reasonably stable, as they are for many of us for many years. Wishing you all the best, hope this helps.

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Mine was not too troublesomeAt my first consultant appointment I saw the nursing staff first. I was weighed and measured, had temperature, blood pressure and blood oxygen done and then urine test and blood test.

When I saw the consultant, he poked my stomach area, asked a few question and then spent about 10 minutes writing all my previous blood tests onto my paper file. He said 'you probably have Primary Biliary Cirrhosis, prescribed Ursofalk and that was it! It took about 15 - 20 minutes. It may be that the first appointment was just about diagnosis. Maybe the next appointment will generate a bit of action. I am not too optimistic though :-)

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