Waiting for diagnosis

Hi I am new to the site and wondered if anyone has had a similar experience or can offer advice about PBC.

In August last year I was tested for coeliac as I was having digestive problems. Test results showed no allergy but I was quite anaemic and put on iron straight away and referred for an endoscopy.

This started a whole chain of events that has led to a referral for PBC. The endoscopy showed blood vessels that were oozing (watermelon stomach it's called) and these were cauterized. A test was then done for liver function and the abnormal results meant a referral to see a a specialist. I had a liver biopsy in January as the liver function tests were borderline and this has shown both PBC and AIH so my consultant has written to a liver specialist at another hospital for a second opinion but has started me on Urso in the meantime. Is it normal to wait a year for a diagnosis? Also my gp had never heard of PBC and is as much in the dark as I am! Any advice would be helpful, this seems like a supportive, friendly site :-)

19 Replies

  • Hi Happy,

    I went to my gp in June 2014 with fatigue and dizzy spells. He suspected hypothyroidism and sent me for tests. They came back positive for hypothyroidism, but my liver functions were all awry. From there it was one test after another until a biopsy last April, confirming PBC, and possible AIH.

    I don't know if this is the norm, but it was 10 months in my case. I'm on urso and prednisone and

    Doing well so far.

  • Hi thanks for letting me know about your experience. Glad you are doing well and I'm not the only one waiting what seems like forever for a diagnosis!? My gp is going to test my thyroid also as I've been having symptoms that are similar to under active thyroid.

  • Your story sounds similar to mine my PBC was found by accident after I had digestive problems I went down the same route of blood tests then biopsy. I don't have any complications of the disease yet like varrices. But it took me a year to get diagnosed snd on urso....far to long it was very frustrating. My gp openly admits he knows very little about it so he's learning along with me. I was sort of told I have it then just left too it. I've got all my info from the PBC foundation it's excellent. After a while I've managed to put it to the back of my mind and get on with life .

  • Yes my gp too admits she has never heard of it but is trying to help me as much as she can! Good to know the waiting time for diagnosis is not unusual. Thanks :-)

  • Hello Happy43 and welcome to this site.

    Much like yourself I had a long time in between starting problems and getting a diagnosis. Two GPs at the same surgery misdiagnosed my condition but fortunately I was sent to the local hospital where there was a specialist who knew about the condition. I later saw another specialist at a different hospital who knew little of the condition and that was the last time I went to the hospital. That must be over 5 years now. The current GP knows about PBC, following blood tests earlier this year all was apparently as it should be. I have been diagnosed now for over 10 years although believe I have had PBC for about 15 years.

    The main thing is that you are on Urso, this should help and I hope you find an improvement soon.

    There are a smashing group of people on here who are helpful and supportive however if you run into any problems the PBC Foundation has he experience and knowledge to answer your questions directly. Go to their website, google - PBC Foundation.co.uk and join the members section (free) not only are there some interesting articles and a blog but there is a regular magazine called Bear Facts. The Foundation also has a leaflet for patients and a separate one for the medical profession which you might like to read. The PBC Foundation can also be found on FaceBook as can PBCers Organization from the USA. There is another group which I keep meaning to have a look at but have not done so yet is LiverNorth. I think other contributors will also mention this and may be able to give you the link.

    I am now 64, PBC is a slow progressive auto immune disease, fortunately you are more likely to die with it rather than of it - cheerful thought!

    best wishes

  • Thank you for your advice and help, it's good to know there are people to talk to on here about things. Unfortunately I feel like I'm in a void until I get a definite diagnosis but hopefully when I see the consultant in September I will have a clearer picture of what's going on! I have so many unanswered questions going round in my mind. Trying to stay positive :-)

  • Waiting so long is really difficult. Not long to wait now.good luck with your diagnosis x

  • It took 3 years for my diagnosis and again my GP had never heard of it and even now I am the only patient the whole practice has with it, my gastro doesn't seem any the wiser either.

  • Oh gosh and I thought I was waiting a long time! It is frustrating that I am the only patient at my gp with this, I keep wanting to ask questions but all she can say is speak to the consultant next time you see him. Hopefully I'll get some explanation at my next appointment in September :-)

  • Well they first diagnosed me with cancer ( non Hodgekins lymphoma ) and were about to start chemo when the said they would do a biopsy first and no trace of Cancer, then after another biopsy diagnosed with PBC so it being PBC instead I was very relieved apart from the itching and joint pain, and exhaustion etc.

    I think you get more support on here and the foundation than from the medics.

  • You have had a bad time by the sound of it, sorry to hear this. I hope you are managing well now. Is joint pain a symptom? I have recently developed symptoms of this and wondered if I should mention to my gp.

  • Well I didn't have joint or muscle pain before, My gastro said PBC doesn't cause pain, my GP doesn't know but the rhumatologist ( not spellt right ) said it does in my case and she put it in writing and i obtained a copy :o) I don't think everyone has it but you should ask if the pain is bad, I think a lot of mine was caused by Muscle wastage / loss as i had lost 7 1/2 stone by the time they had figured out what was wrong with me.

  • Thanks I will talk to my gp :-)

  • Good afternoon Happy43,

    I have sent you a direct message

    Best wishes PBC Foundation

  • Contact the PBC Foundation - link at the top of this page to their website - where you will find phone numbers and emails for their specialist advisors. There is loads of accurate and recent info on their site too, but if you join you can get their fact file and others advantages - maybe even get a fact file for your GP too!

    Many of the online sites on PBC are out of date and over-scary: things have improved for many sufferers since the development of urso.

    Most people are detected by abnormal lfts (liver function tests), which a GP would do, because they have gone to their GP with fatigue or itching - the 2 most common symptoms. However, I believe there is increased evidence of PBC people having (or seeming to have) coeliac disease, so that may be what led to your liver checks. Formally, PBC is diagnosed when lfts are abnormal and by the presence of AMAs (antimitochondrial antibodies), sometimes a biopsy will take place to confirm the diagnosis. In all cases other checks should be done for all other liver conditions, and for certain other autoimmune conditions (as AMAs can be involved in other conditions) and maybe for vitamin and mineral levels and for osteoporeseis (as PBC can effect absorption of certain nutrients such as the fat soluble vits and calcium if there is a lack of Vit D).

    Strictly speaking, AMAs alone are not enough for a diagnosis of PBC, although other checks should be made.

    Hope this helps, it sounds as if your case was one of the more confusing ones, as you didn't present with the most common symptoms. I hope you get sorted soo , and mange to get back to a full life. Try to treat yourself and have fun, don't get stressed as autoimmune conditions thrive on stress!! Things are much better than they used to be. But talk to the PBC F people - it may help if you have all your results and times and treatments etc. to hand, so they can advise whether all things have been checked and covered.

    Take care

  • Hi thanks for your help and advice. Yes it was a shock when my gp told me I had the marker for PBC, she also told me that it could lead to a liver transplant. I went in thinking I had a stomach ulcer and came out thinking I was going to die! Obviously having researched it a bit I realise it's not as bad as I first thought and life goes on but I still have trouble accepting that this is going to be with me for the rest of my life and the medication that goes with it. I have no itch at all which I'm grateful for but I do have sudden bouts of fatigue and right side pain. Will contact PBC foundation for some more info. :-)

  • I tried to give my consultant the fact file, he refused saying he didn't need it, I left thinking " thats what you think" :o))))))))

  • Hello Happy43

    I was diagnosed in March 2014 and am still coming to terms with this strange condition that no one knows much about. I don`t itch much but do get very tired and have some digestive problems but apart from that, and with careful pacing of myself, I live a fairly normal life and enjoy my life and my family.

    Get your advice from the PBC Foundation and support from this group of very understanding pbcers and do what you can to enjoy life. It is still very much worth living. Keep in touch x

  • Hi liver-bird thank you for your positive message, I certainly will look on the bright side and carry on with things as much as I can. I have found I have to pace myself sometimes which is hard with working and 2 children to look after but I always find the good outweighs the bad. It's great to talk to others in the same boat :-)

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