Went to see GP today regarding several things related to PBC. Told that all symptoms pertaining to this should be dealt with by my Hepatology Consultant. This includes rheumatological problems, itching, depression, etc. My consultant tells me he is unable to refer me to other specialists but he can recommend treatment through my GP.

Thus my depression (including panic attacks, agoraphobia etc) needs my visiting Hepatologist or A&E. Itching go to specialist (GP cannot institute treatment) and Raynauds and joint problems go to specialist.

Anyone else out there in the same position.

13 Replies

  • Hello Mary48.

    Well I am in the UK and I know that when I was diagnosed in Dec 2010 it was the consultant I saw who diagnosed (via the AMA blood test). I did go to my GP early 2010 with itching really but also at the time I did have fatigue. He started a series of bloods and said my liver function test (LFTs) were abnormal (as in higher than normal range). He then did other blood work and ruled out other things, then said one blood check said it was liver and not a bone issue.

    He said he had exhausted what he could do so referred me to hospital outpatients.

    It was the consultant who wrote to my GP late November 2010 to inform him I had PBC and some results and he was informing the GP to start writing prescriptions for urso and what dosage. From then on the GP wrote my prescriptions.

    I posted the question on here several days ago about itching and the med Questran for it. (I still itch, confined to night but as yet have not had any further medications for PBC related issues except the urso.) Apparently the GP can write a script for the Questran as well as a consultant of course.

    I know that having PBC we can also have other issues that may or may not be related to PBC. Depression is one but can come about I am certain due to the problems and irritations and even lessening quality of life (I find I don't sleep well at night now due to itching for eg) due to having PBC but I am certain a GP could if a patient requested be referred for specialist treatment there.

    Even a GP can contact your consultant who deals with PBC to ask questions if uncertain. I secretly think though that some GPs not knowing much about PBC simply prefer to 'pass the book' as it goes and then have a consultant deal with it but I am sure that an outpatient who sees a consultant for PBC and thinks they need to see another specialist in another field would write to the GP to get him/her to make the referral?

    My sister had a brain haemorrhage 2yrs ago now and she developed a type of diabetes that revolves around sodium content. She was discharged from hospital 12mths ago back to the GP but still goes to the neurology at hospital for checks and also MRIs. 6 months ago she was found to have a bit of out of control bloods due to this diabetes insipidus as it is known and her GP referred her to the renal dept of the local hospital to see a consultant there. I did think that is what our medical records are for, so that if needs be we can see different specialists regarding different parts of our anatomy.

    If you haven't long before you next see your hepatologist I'd probably be inclined in our situation to return to the GP and ask him/he to request a sooner appt with that dept. That is all I can think of.

  • Thanks. Diagnosed 12 years ago after several years of symptoms and being classed as a hyperchondriac. Having moved, this is first discussion with GP. Asked how many patients had he seen with PBC, refused to say.

    Don't know what to do next. Maybe deny having PBC and see doctors for each separate symptom

  • Hello again Mary48.

    I asked at my last GP surgery if there were anymore patients registered there with PBC but I got stone-walled. I did tell the Practice Manager that I understand patient confidentiality and all that, I didn't want to know about anyone personally but with the view to seeing the same GP that patient saw if any saw some one with PBC. Made sense to me but not to them!

    I switched GP surgery not long after. I thought the one I seemed to have to see when I got blood results at certain times didn't really bother or perhaps knew nothing, the practice nurse who took my bloods asked me on 2 seperate occasions how much alcohol I used to drink and when I took a leaflet in from the PBC Foundation don't think it was even glanced at. I think it all started when I dared to ask for a print out of my bloods that I had started getting at diagnosis, seemed to really put them out and they started to be awkward.

    I rarely went to the GP before I started to itch in 2010 but now I seem to have to go at intervals that never seem to coincide - prescription for urso, then bloods, then med review - but can't say I get treat good at the one I switched to 2 and half yrs ago now either.

    I know one GP said to me at the last practice I was with that I really should be seeing the consultant with PBC. I went to hospital for 12mths and then 11mths after starting urso I asked to be discharged as my bloodwork was considerably better, I didn't have fatigue from 2011 at some point and only have the itch. He agreed to discharge me back to the GP with the intent in future if needs be I would be referred back. So far so good and I've been discharged for the last 4yrs.

    The only thing I can suggest as before, perhaps get your GP to get a sooner appt at the hospital or like I did perhaps switch GP surgeries and see how far you get there?

    I do think that PBC is one of these things that seems to be quite puzzling and though it seems itching and fatigue are the commonest symptons, we can all have very varied problems that can be associated due to having PBC (like vitamin deficiencies - fat soluble ones are said to be the main ones. Bone health can come into it too and some on this site are on calcium supplements). I do think that due to lack of knowledge on a GP's part they seem these days not to want to deal with that patient but pass them over to a consultant.

    Have you requested a free dvd on PBC to be sent to you from Liver North at all? I got one several yrs ago now. It outlines a lot of things (I didn't see it all, flicked through some, my husband however watched it all. I prefer to just deal with what I have now, not might be as it might never be is how I see it). I'll pop the link on here for you. There is also their newsletters online you can read through, maybe print out bits to show a GP? The PBC Foundation also issue leaflets that you can take to a GP if you contact them, sure they will oblige.

  • Just giving up on it all. Fortunately my consultant is great, and very busy, so appointments have to be made nearly a year in advance. He has no secretary, so contact is minimal. Thankfully he organises my routine endoscopies, liver scans and osteoporosis scans. Got to travel to London, so expensive, but I am thankful.

    I was the only patient with it at my last surgery, and the GP I saw suggested that I knew more about it than her and left me to ask for help.

  • I see a specialist every 6 months at addenbrook hospital for a ultra sound and blood test are you on urso contact pbc foundation they might be able to give you some advice

  • Hi Mary48, at my last consultant appointment I asked her to clarify what I went to the GP about and what I spoke to her about. She said anything PBC related (normal symptoms such as itching etc) speak to her anything unrelated speak to my GP. I know my GP gets a letter with a review of my consultants appointment because I get copied in on it which is great.

    I hope you get sorted soon xxxx

  • I'm really horrified by your experiences with your GP. it was my GP who realised I had PBC and then referred me to the consultant, who said she had very little to do as my GP was absolutely right in his diagnosis. I currently see my consultant twice a year and my GP when I need to, re all PBC related symptoms. I'm very lucky, the GP's at the health centre research conditions that they are unfamiliar with, so much so that I received an article in the post from my GP that had been in the BMJ which really helped me as it related to the severe fatigue I suffer from. I also have faith that if my issues are difficult to understand, they will do their best to find out everything they can. Your experiences seem to bear out the theory that the further North you live, the better the care. Sounds a bit like your GP is palming you off. Might be worth seeing someone else in the practice.

  • It does seem like you are in a situation where seeing another GP may be the answer.

    Whenever I see my GP for anything he follows the normal route of diagnosis and does not assume it's all PBC related, on his own admission he knows little about it. If he does feel it's related he gets in touch my consulatant as I only see her once a year so it would be awful to wait that long to get something checked out.

    However the consultant i have does and has twice referred me direct to her consulatant colleagues when she felt it was needed and it was much quicker than going through the GP.

    I do hope you can get this sorted out, does your consultant have a nurse specialist you can contact? I know some do it's worth looking into I have the contact of one for ENT issues that I will have for life and she is lovely.

  • I think a lot of our problems are caused by the fact that no-one really knows which symptoms are PBC and which are unrelated. You only have to look back through the questions posted here to see that. Any chance that you can change your GP, Mary? Some are obviously so much better than others.

    With all best wishes - stick at it girl!

  • Hello Mary48,

    Whilst my other medical problems, apart from PBC, may not be as serious as yours, this sounds so familiar. I see my GP rarely but respiratory problems, blood tests, or referral for a dexa scan are all seen by my him as not his concern but that of my local gastroenterologist. Recent tests re: breathing problems suggested by QEBHAM he suggested be done by the Gastro as he 'could 'not refer me'. I have long suspected that, he is either not interested in his job, keen to save money, or lacking in skills of some kind. I suppose the only answer is to change my Gp, not always an easy option.

  • Seems so odd that everyone seems to have a differing account of their GP and their actual role.

    As far as I have read on NHS sites, a GP tends to be the first port of call for any health problems. That GP can then refer the patient to hospital as unless a patient turns up at an A & E or Urgent Care or is taken as an emergency into hospital that seems the only way you can be referred in the UK.

    A consultant can make other referrals and I think it depends on the frequency of appointments to see one.

    It is a fact though that the GP is the go-between with patients and consultants if there are any problems that renders a patient at the time struggling to seek help he/she feels they need at the time.

    For some years I had a problem with nose bleeding and after visiting my GP pre-PBC diagnosis and being shrugged off with various creams and potions that never worked one morning I got up, had a nosebleed and tho' it was only just gone 6a.m. my husband said he had had enough and that we were going to Urgent Care. Couple hours wait, nose dried up and then I was seen by a doctor there who was not happy I had gone and said that the correct channel was via a GP! When I explained that I had been to the GP a few times and got nowhere I was then informed that I would receive an appointment via telephone to attend the ENT at the hospital. I did receive a call later that day and got an appointment for the following wk.

    I had to return to my GP some months later as I didn't get anything except some more nose cream and advice and had to beg the GP that I needed to go to ENT. I was by then PBC diagnosed. I did go to ENT, been a few times in recent years and it is nothing to do with PBC, just a tiny nose graze.

    I have never felt I have wasted a doctor's time until the last couple years but at the end of the day like always, it does really come down to money once again. GPs apparently get paid extra if they can deal with a patient themselves as opposed to referring to hospital and I think this is where some patients end up having to endure a lot more to get to where they should have been in the first place.

  • Hi Mary48, really sorry to hear your GP is so difficult. Th GP practice I am registered with is great. I tend to se the same 2 or 3 GPs but everyone in the practice is good. They kept testing things due to my symptoms and although they did not know a great deal about PBC they suspected it and referred me to Gastro who confirmed it. Also whe I told GP gastro did not seem very interested and coulkd I see someone else they referred me to an extremely good Heptologist who again has been great.

    I did take PBC foundation leaflets and Compendium into the practice and they were very grateful, putting the patient leaflets out for people to access.

    I always use the GP as first point af access and they refer me on only if they feel I need a specialiust, otherwise they treat me or arrange tests.

    They have also been brillint with supporting me through the process of applying for early retirement due to ill health (the PBC) from work, which I am happy to say I have just had the approval for.

    I think as others have said it miught be worth trying to find another GP, although finding a good one does seem to be a bit hit and miss.

    Hope things go better for you.

  • Sorry for bad typing in previou message. 😐

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