GP's ignorance

A couple of months ago I posted that I had been diagnosed with PBC in 1999 via having elevated AMAs, but have since been in the care of my GP . During that time I have had no treatment whatsoever , despite steadily worsening LFTs, with considerably raised Alk Phos and GGT and symptoms of intense itching and chronic fatigue. Many thanks to all who replied. Following your advice I went to see my GP and persuaded him to refer me to a consultant . The consultant was horrified that I have been left to languish for 15 years with no treatment whatsoever. The Consultant was dismayed that my GP had been telling me for more than 10 years that my symptoms of itching and fatigue could be nothing to do with PBC because my bilirubin was not elevated much. So at long last I will be getting Urso. I have had a liver scan showing my liver is enlarged. Am going for further more detailed scans. I hope that the 10 years of non-treatment whilst being symptomatic has not harmed me significantly. If there is anyone else left in the hands of a GP , do ask for a referral to a specialist!

7 Replies

  • Very pleased to hear you are now under the care of a Consultant and you will be getting the treatment anyone with PBC has the right to expect.

  • How different GPs treat patients, I went to my GP with a chest infection she sent me for a blood test , when the results came back ( 24 hours later ) she told me something was not right. Within 14 days I was with a consultant and was diagnosed within one month with PBC. OK she was not an expert on Livers but for her I would not be alive today, now we both learn from each other

  • Well done, sometimes we battle more than PBC. I hope you respond well to treatment.

    best wishes

  • What country are you in? That's terrible.

  • Similar scenario for me. I had Sclero developing slowly almost all my life from a first attack when I was 11 until emergency hospitalisation when I was 59. At that time my LFT's showed up as 'deranged' but nothing was said or done about it until 2012 when another emergency had me in hospital again for a Laparoscopy and Cirrhosis was discovered. A nine year hiatus. Fortunately once I got to a Hepatologist and was on Urso the LFT's started to normalise and now they are better than ever.

  • Hello rainbowsong42.

    Hope that you now get a plan drawn up between your consultant that brings you on to a more even keel.

    Who originally diangosed you with PBC?

    I can't say for 100% but I think that ursodeoxycholic acid is a medication that only a hospital doctor can give the go-ahead for in PBC. (Urso was originally designed for cholesterol gallstone dissolution but a patient would have to have been diagnosed with having gallstones via a scan so maybe that patient might have seen a consultant after a GP got the results back.)

    From my experience in 2010 when I presented to my GP with itching and he took the LFTs and said they had come back abnormal so onto the road to PBC I went and was diagnosed by a hospital consultant Dec 2010 and started urso. I did notice on getting print-outs of the bloods during 2010, that in the 3mths I waited to go to the hospital, my LFTs had actually dropped naturally without any medications so in my view they can actually do this even without urso.

    I think that a GP who has got a diagnosis of PBC for a patient should have taken notice of his/her patient's LFTs each check.

    This is one reason that I request a print-out each time of the bloods so I can see for myself and then question anything that to me doesn't look OK but a GP can shed more light on it.

    I know that if a patient wants to be referred to a consultant they do have the right to do so. Unfortunately some GPs make it difficult and a lot to me come across that they know best when in fact often they do not. I don't leave my full trust with doctors I have to say from past experience with family members.

    I asked my consultant Oct 2011 to discharge me back to the GP surgery as I ws finding the visits at the time were not more than bloods and a short 5 min chat. The consultant did state at diagnosis that he reckoned I only had PBC for a short period of time, ' a few years' he said. He did agree to discharge when I explained how I felt and said that at any time there is doubts I will be referred back. I can request to go back to the hospital if I want to but I know at the moment my bloods are better than they were in the beginning, at present, better than they have been over the last 4yrs but also at the same time, I have noticed that on a graph my bloods would make a slightly wavy line as certain times of the year they go up a bit, down at others.

  • Hi Rainbowsong,

    I am so sorry that you had to go through all of this, but relieved to hear that you are finally seeing a consultant, and that your treatment is underway. I hope all further tests go well, and that you begin to respond to the urso quickly, and soon feel less tired.

    Meanwhile, take care of yourself: have fun, treat yourself, live life to the full. This is all a necessary part of beating stress and feeling good: this is one of the best ways to beat PBC and all other autoimmune conditions.


    Meanwhile, can we all take this as a warning: whenever a new person posts on here can we ALL suggest that they talk to the PBC Foundation, rather than our answer just relating what they say to our own particular experience of, and understanding about PBC*. Also, can we all start warning 'new' people about how some GPs know very little about PBC - and again suggest a talk to the PBC F, or that they insist on seeing a liver specialist ... or at the least taking someone with us as a witness, and/or asking to see another GP.

    *NB I know I am as guilty of this as anyone (eg: banging on about how 'only being AMA+ve doesn't necessarily mean you've got PBC'). However, for quite a time now I have been trying to keep my own stance on 'my odd PBC diagnosis' out of my answers, unless I think it's directly relevant to the questioner's situation.

    I am also trying to remember to tell all new posters to talk to the PBC Foundation advisors.

    'Here endeth ...'

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