Hello there, apologies for what might be a long post but I'm desperately in need of advice.
I'm 47 yrs Old, in the U.K. and was diagnosed with PBC after biopsy and blood test. Consultant said I've almost certainly had it since 2009 but despite many tests and Drs appts it was never diagnosed. And I've been diagnosed 2 yrs now.
Anyway, on to my prob.
I saw my Consultant once diagnosed, he seemed v blasé about the whole thing and basically said it's only PBC at least it's not AIH and I'm therefore a lucky girl. He put me on Urso, 3 monthly blood tests and yearly appts with him.
Just seen Consultant yesterday, bullet points of meeting...
Said blood tests show I'm stable, v reassuring, but then said it could all change rapidly with liver disease
Said prognosis v good not expecting me to reach end stage liver disease while he's my consultant, but then said he's retiring in 10 yrs and then if I progress "it's some-one else's problem"
I told him I struggle v much with exhaustion and he replied if I look on PBC forum there seems to be a "theme" of people complaining of exhaustion but it's not medically proven that tiredness is part of PBC and people do "seem to think a lot of symptoms are part of PBC, let's just blame it on that...most people with PBC don't have any symptoms and are completely unaware" (really?!)
I told him I'm struggling to lose weight (only a stone, but it's not shifting) I go to gym, eat healthily but no weight loss. I asked him if it's the PBC...his reply " oh yet another symptom of PBC you think?!" Followed by a laugh and a retort of "it's not rocket science, eat less exercise more, it DOES work...for EVERYONE!!"
Told him I'm wanting to return to work (took time out to raise my Autistic son) but concerned about the exhaustion and maybe start back slowly. He replied "well yes, you might get tired but it won't hurt you and certainly has no impact on the PBC.
Only been diagnosed for 2 yrs but he's now doing blood tests every 6 months and seeing me once a year.
Should I be reassured by his offhand blasé attitude that he clearly isn't worried, so I shouldn't be? Or should I be changing consultants? I just don't know?
Sorry once again for v long post and thank you.
Best Wishes,
Caroline-12
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Caroline-12
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I'm in the US so I can't speak for doctors in the UK, but if my doctor would've acted like that, I would definitely go see someone else. The fatigue is not a figment of ur imagination, it's really, and very difficult to deal with. I wish u luck in finding a doctor that has a better understanding of this disease.
Whereabouts do you live, Caroline? I also started out with a very blasé and offhand consultant. Rang PBC Foundation and was given details of other specialists in the area. Means a longer drive to get to my annual appointments, but it's worth it. I'm fairly sure you have the right to chose your own consultant. And tiredness is very much a PBC symptom!
Dr Steven Ryder , I see him at The Circle which is part of QMC , if you ring the reception I am sure they would put you through to the right dept and they would sort something out for you . I was diagnosed with PBC 6 years ago , after suffering for over 2 years , I responded well to Urso and just have a yearly check up now . Dr Ryder put my mind at ease on our first meeting , nothing is to much trouble , he takes time to explain things and is one of the leading experts on PBC, he always tells me to get in touch with him if I have any worries , and I would not hesitate to do so if needed , he is very down to earth , a really good Dr and I have no hesitation in recommending him to you , let me know how you get on . Good Luck x
Wow. I'm also in the US but I would be finding a new Dr asap.
Even if he was correct,not saying he is, he has no right to dismiss your concerns and blow you off. Seriously, no bedside manner at all.
You are the patient. You have a life-long, incurable illness. He should have the decency to answer your questions honestly and respectfully.
He may think PBC is no big deal, but it is a big deal to you. And to me. And to every one else on this board. I'm mad as hell for you. 😡 He has no right to just disregard all of your concerns.
You are not being treated appropriately. You deserve better.
Hi Caroline-12, I had a similar experience when I was first diagnosed 16 years ago, I was told that I had pbc and there was no treatment and no cure and I just had to get on with it, I went back to my gp and asked if I had to go back there and he said absolutely not and referred me to a different hospital with a new consultant who is amazing, I couldn't ask for a more supportive doctor,I think when you are faced with a lifelong condition you need to have a doctor you trust and you are comfortable with so I would definitely go back to my gp and asked to be referred to someone else, take care 🌼
Just totally disgraceful is he really a Dr? In my opinion this Dr should not be practising regardless of what the disease is this is totally the wrong attitude and he is so totally wrong about PBC symptoms. Change Dr, do not go back and seriously think about making a complaint.
Im 52 in the West Midlands, dx at 50, been on Urso nearly two years.
I too think extremely difficult to lose weight, I am not sure if that is PBC related but who knows certainly not your Dr.
I agree wholeheartedly with the other comments, but I would add that it seems encouraging that your condition has been stable for several years, and your prognosis was described as very good. Great news! Blood tests every 6 months sounds fine, and if something changes you can be seen more frequently.
I've similarly been told that my disease seems stable, and I've felt that my experiences of living with it - my symptoms - seemed overlooked by comparison with my test results. I understand perfectly why this is the case; my consultant sees people who are far more ill than I am, but I try to ensure that I can be heard if need be. This includes (for me) tracking my own test results, which I find empowering, and remembering that no-one knows better than I do what I'm experiencing.
The PBC foundation produce an excellent leaflet called Pbc for professionals, you should get one and send it to this Dr. It lists the known problems and symptoms of PBC, including fatigue. I would include a note saying , just thought you might like to update yourself on this chronic illness, which for many people is life changing!
I hate that jokey patronising way some Dr's have, it really makes you feel rubbish. I agree with others defo get another Dr, you will be seeing them yearly for many years if things continue well, so its important to feel you trust them, and can ask anything should things change.
PBC for professionals...right, I'm on it! Thank you!
Also looking into moving Consultants. Thank you so much.
Caroline-12
ho u sound like me i been diagnosed 8/9yrs routine blood picked it up sent me to consultant donemore bloods went back for results he z yes pbc don t worry about it you won t die of it but with it due to slow progress told me gohome have a glass of wine and he will go home and i certainly wont be one he would worry about since then i have seen a host of drs some yrly one wanted me to be managed by gp coz classed as stable i refused im on urso i also have fibromyalgia so get fatigue with that but then i had one dr who z fatigue was due to pbc i like u don t really understand the last dr i had told me i was fat round middle and needed to exercise but coz fibro makes it difficult plus a heart rythm prob he just z was excuses so like the men i whitecoats no i don t worry about it now have u had your thyroid check as u mention weight and fatigue could be underactive good luck x
Hi Caroline sounds like you need to change your consultant, if you can make it to see Proffessor Jones in Newcastle who really understands about PBC , it's like finding your new best friend as he knows exactly how you are feeling, people travel from all over see him. Take care.
Hi there, I've just spoken to my GP who said they will refer me to another hospital but no guarantees which Consultant I see, unless I pay private! Did you find this to be the case? ( I'm assuming he's an NHS Consultant?)
Hi Caroline you should not have to pay private to see Proffessor Jones. We thought my daughter had PBC so asked her doctor to refer her to Newcastle they said it would cost. So I rang Prof Jones secretary who told me there would be no charge and she would speack to my daughters doctor who then back tracked about having to pay, it turned out my daughter did not have PBC thank goodness. Take care hope you get sorted.
Hi there I've spoken with my GP and they've said they can refer me to another hospital but can't guarantee which Consultant I would see unless I pay private? Is this actually the case?!!
I had to find a new one as well as mine was a dead loss and didnt know a thing about PBC a lady from the foundation told me who to go and see in wales,
When i was first ill the diagnosed a type of cancer at first when i got my diagnosis of PBC i was told the same, well you are lucky they were wrong with the first diagnosis, and i just turned to him and said why? two of my friends were diagnosed with cancer on the same day i was diagnosed with PBC, they are now both cured, i am not, he looked sheepishly at me and said OH sorry i get you, I then just walked out and found a new consultant and got the shock of my life with having a fibroscan that came out at 19.4 after being told by the first one i had a mild dose, some of these people need to go back to med school.
So sorry for what you have been through, it's just not acceptable is it and just seems all too common.
I totally understand your thinking with the friends now cured of cancer, I understand where you are coming from there!
At the risk of sounding ignorant...what is a fibroscan? I've had ultrasound and biopsy but never heard of fibroscan? Is it something I should be looking into?
I agree with Rosehip and many above. Talk to the advisors at the 'PBC Foundation' who host this site - link to website with email and phone contacts, above. Ask about Liver consultants with PBC experience in your area.
If Birmingham is not to far for you, QEH is brilliant, ditto Prof Hirschfield. I'm in Devon and went up to see him as my Devon consultant (liver, but no PBC experience) had labelled me PBC-ish, when I don't actually have it. Also, if you read around on here, it is a rare condition, and even many liver medics - but especially Gastros - just don't know enough, often don't get to see it.
I also agree with Wass about copying the new form on the 'PBC F' website - which is aimed at GPs and other Medics who don't know enough about PBC. Send him that!!! Maybe with the bit about: 'exhaustion/fatigue being one of the main symptoms of PBC' highlighted!!
You don't have to pay or anything to be referred to a specialist outside your area, my GP happily sent me off to see Prof H.
Above all, learn as much as you can about PBC, from the 'PBC F' website - join!, it's free, and their advisors are great ... but, above all, don't stress. Have fun, do things you love, eat, sleep well, exercise in moderation and don't push your self when you feel exhausted ... but make sure you have fun & enjoy life: it can help the exhaustion, and helps us get beyond the PBC.
Thank you for replying. Your advice is very helpful and I will be acting on it with an appt to my GP asking for that referral to Birmingham. In the meantime I intend to keep smiling and take care of myself 😊
That's the spirit! Also utter rubbish about not getting to see the consultant you want, or having to pay. My Gp wrote to Prof Hirschfield and a letter came through with an appointment very quickly .... admittedly the appointment ended up being put back, but that was mainly because I didn't have PBC, so wasn't as important as someone with it [Nb I just have the AMAs, but my liver function tests are always perfect and I have no symptoms - it was just that the local consultant I saw had given me a 'PBC-ish' diagnosis, which played havoc with Insurance.] You have definitely got it, so should be much higher up the list than I was. Good Luck, but do talk to the 'PBC F' people
I'm in the U.S. and it's fairly easy to switch doctors. I'm not sure if that's true in the U.K. However, his attitude and your gut feeling that he is brushing you off would make me go to another doctor for another opinion. Your current doctor's opinion may possibly be correct but if you don't feel that he is listening to your concerns.. well, that would make me very uncomfortable and uneasy. Maybe you could give a new doctor a try and see if you like that doctor any better, if not, your current doctor doesn't need to know anything.
If you feel so pls take a second opinion of any other doctor. You will be relieved from all your worries.
Kindly don't think much on what's happening inside just take care of self regular visits to doctor and suggested tests to check everything is fine.
Avoid or stop non veg food. Change your diet. Have plenty of fruits especially papaya, steamed vegetables and reduce intake of salt as much as possible. Consume lot of fresh juices and liquids. Do not eat outside food. You will definitely witness changes.
No to alcohol and cigarettes.
Be relaxed donot think much, do daily activity, live a normal carefree and stress free life.
My dr told me same not to worry about pbc and told me to live normal life too..I'm trying to live normal life still once in a while if something hurts or happens to me like even if I snitch the frist reaction of mine is Always like "shit must be my liver,"lol rather then that I'm doing ok..
@ Caroline, have you checked your thyroid? Person with thyroid problem has difficulties to lose weight as well..
I'm in the UK . Have a lovely lady consultant. She seems to know about pbc . I kno I've read a lot about doctors not knowing enough about it. I was diagnosed nearly 4 years ago. Have bloods done every 6 months & see consultant yearly . My bloods are not right atm. So had a biopsy 5 weeks ago . Still waiting on results. I would try see someone else if I was you . Wouldn't be happy with those comments. Hope you get things sorted. Good luck x
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