I was diagnosed with pbc 3 weeks ago after not being well for about a year iam getting referred to a specialist but have not heard nothing a

[leanneee]

iam 37 and have just been told I have pbc I havent felt well for a while now but dont know what is going to happen ive been told there a 8 month waiting list to see a specialist does any body know what they will do

[kimphoebe]

Hi can I ask who diagnosed you

[Lucylongstockings]

Who,told you it was 8 months? Are you in the uk? I think for a first appointment you should be seen within 18 weeks on the nhs. Unless you ve had all your tests already ? Ultra sound, bloods and some places do a biopsy, some don't.

[Hidden in reply to Lucylongstockings]

I am in the UK and a biopsy is usually done if a doctor can't decide from other means if a patient has PBC or not.

I know in the US a biopsy seems standard regardless.

[susanburgess]

Don't worry l have had this for many years. have you been given urso. you will also be given a ultra sound and blood test, Every one worries at first but you learn to live with this. Don't panic many people over the world has this. Ask the pbc of a hospital near to you they maybe they can help I think this is there number 01315566811. keep well.

[spoul]

8 months wait is unacceptable in UK as already stated. When I saw the specialist 17 yrs ago it was him who made diagnosis from blood tests done by Gp. I was then started on urso and had ultrasound.......hope you get seen soon 😃

[Hidden in reply to spoul]

Hiya spoul.

I never had the antibodies blood tests done at the GP surgery. He did inform me that he had exhausted all the ones he could do.

I've found it a bit patchy with regards to antibodies checks done via a GP. I have noticed on this site a few have stated that their GP did the bloods for this but for myself I had all those weeks (13) wait to go to the hospital and just have the blood test on the first appointment and then a further 7 for the results via the GP after the hospital consultant wrote to him. Though I thought at the time the GP could have informed me that sooner as he did receive the letter with details on it a lot earlier than I was informed (I got a print-out when I went to see him as I asked) but then got to think that I wasn't an emergency.

I know for me at the time I did think that on reading certain literature on PBC if it is supspected then a patient can be started on urso. I now wish I had of been as the itch was pretty horrible during 2010 compared to what it is these days.

[spoul in reply to Hidden]

It wasn't antibody check peridot it was grossly abnormal liver function tests that the Gp did which are pretty standard for 'tired all the time' symptoms.

[Hidden in reply to spoul]

Hello again.

So where did you have the antibody check test done then spoul? I presume at the hospital maybe?

I had my liver function test done originally for the itching.

[spoul in reply to Hidden]

Yes I had antibody check done at hospital prior to diagnosis

[Hidden in reply to spoul]

thanks for your reply. You went down the same route I did by the sounds. My hospital consultant took the antibodies test and then informed the GP who relayed the information to me. Then about 2 months later I returned to the hospital for my second appointment with the diagnosis and blood check to see how the urso had started to respond.

[Hidden]

Hello leanneee.

I presume that now you have been diagnosed with PBC that you have been prescribed urso.

I was diagnosed by a hospital consultant after my GP informed me he had exhausted all the tests he could do. This was back in 2010. I started itching early 2010 and took myself off to see the GP a fortnight later as it wasn't letting up. I started with blood checks and was found to have abnormal LFTs (the liver function test). I then had further bloods done to rule other things out (one was for copper overload, another to decide whether bone or liver related and various others) and then I had to go for a scan at the hospital. (My liver was found to look pretty much normal, as were surrounding rogans.)

I was then referred to the hospital Hepatology Clinic but had to wait 11 weeks for the appointment date to come round. In this time I was still itching, my GP had signed me off to the hospital so I just had to wait. 2 weeks prior to the hospital appointment they sent me a letter saying they had cancelled the original appointment and sent a new date. A date when I was to be away for a week on holiday as my husband and I booked the holiday after I received the original appointment. I then rang the hospital and explained and they gave me an appointment for the following week after my holiday which meant it was 13 weeks before I saw the hospital consultant.

Now under the NHS you are supposed to have a decision on the way treatment if required is to go or have a diagnosis in 18 weeks. The clock only starts to tick down when you go to the first appointment at the hospital. It took a further 7 weeks for my diagnosis. For me mine went just over the 18 weeks as it took my GP around a week to ask me to go in and see him so he could tell me he had received results back from antibodies check I had on my first hospital appointment that gave the diagnosis of PBC.

Now a GP can only refer a patient to hospital as out-patient going off their criteria for how soon a patient can go to the first appointment to be in the system. It might sound more like an emergency to us but with a PBC diagnosis unless we are at a critical stage (I wasn't, apparently I'd only started with a few years prior the hospital consultant reckoned and my bloods though abnormal weren't abnormally so plus I only had the itch and nothing else that could come with PBC), well the wheels of the NHS turn very slow in my experience.

Not sure how long you might have to wait for the out-patients appointment but I am pretty certain (from when I attended ENT the year before last as an out-patient) that you have to receive the first appointment date within the 18 weeks timeline. I remember when I went to ENT in 2012 for a first appointment I got some paperwork after seeing the consultant as at the time he asked me to go back a month later. I saw on the sheet that there was a clock box.

Reading NHS literature in leaflet form at the GP surgery, it does state that a patient referred to hospital should be seen and know some result or how they are going to be treated within 18 weeks.

At the end of the day if you are taking the urso now and have the diagnosis which I am also curious to know how you were informed, did your GP take the antibodies blood test and were you like myself diagnosed via symptons (I had itch and at the time fatigue) and abnormal bloods.

Once diagnosed with PBC the bloods can improve immensely. Mine have improved over time. I was 46 at diagnosis but I am now almost 51. i just have the itch these days and still the abnormal bloods which are said to be quite fine for someone with PBC.

[GrittyReads]

Hi,

So sorry to hear you are feeling stressed about all this. It is a shock, and could have/should have been handled more sensitively. As others have said, it may depend on whether you are in the UK, US or elsewhere, as I can only comment on the UK.

HOWEVER, as already stated, in the UK you should be seen by a consultant within 17 weeks - that is your right, any longer and complain. Also, if possible, find out who is in your area. If you can post on here where you live, we can tell you if you are near one of the best ones to see.

Also, do you know exactly what tests have been done, and on what grounds a GP (if that's who it was) has diagnosed you???

In the UK, many GPs know only the bare basics about PBC (if that?!?!), and many have never treated a patient with it - I am the only one, ever, in my practice, and my GP has just done loads of swotting up on PBC, my behalf.

Also, in the UK (in my experience) the labs who do the tests may say to the GP that the tests strongly indicate the risk of PBC, but I'm surprised that anyone would diagnose you before you've been seen by a specialist. Even the specialists disagree about the finer points of diagnosis.

If you don't know about the tests, go back to your GP - or just reception - and ask for a printout of all your test results - it is your right (in the UK) to have this, and there should be no quibble. You may have to pay a small charge, per page (ask how much, and how many pages, first) I think 50p or £1 a page is typical, although mine don't bother. Then you can come back and tell us what it says.

OR, better still, phone the PBC Foundation (there is a link to their website at the top of this page) and talk to one of their advisors. They are brilliant, and helpful, and know most stuff.

As wonderful as we all are on here, a lot of us only quote our own experiences, or give our own opinions ...

And we know what they say about opinions:

'They are like belly buttons: we've all got them, but they don't hold much water.'

Also, if you do actually have PBC, it is not the major nuisance that it used to be. With the medicine available, now, most just get on with living life to the full - and coming on here to have a moan!

I hope it goes well. Take care, try to relax and not stress - one of the worst things for any condition. Treat yourself, have fun, exercise, and rest.

[Karaliz in reply to GrittyReads]

Without wishing to rain on your parade Gritty and I do find your comments extremely insightful, for a significant number of us, PBC is far more than a nuisance: major or otherwise!! In my own case it is a serious disease process that has seen me develop cirrhosis, commence on a trial drug 2 years ago due to becoming a non responder to Urso while juggling raising my 4 children, working as a nurse and trying to forget that I am on a one way street to eventual liver transplant !! I am genuinely glad that large numbers of us can get by with minimal symptoms / impact on life quality but the fact remains that while I may not shuffle off directly from having PBC, it has huge ramifications that need to be dealt with daily! Wish it was as easy as taking the Urso and forgetting ( and it was in the early days) but the deck of cards has changed and I - and others - must play as best we can.

Cheers from down under

Karaliz

[GrittyReads in reply to Karaliz]

Hi Karaliz,

You are right, and I apologise.

I was trying to be positive, given the worry and stress that Leannee is obviously already going through, when it may not, yet, be certain what the actual situation is for her.

I wanted to reduce her fears during the weeks before a consultation.

As someone who was bluntly told by my GP that I 'had PBC' ... without any explanation - just before Xmas ... with family ill - And then I went home and looked it up on line ...

(?!*??!!)

Well, I don't want anyone else to have to go through the terrible time I had, until I talked to Collette at the PBC F.

Nevertheless, I agree that the 'nuisance' remark was tactless: sorry, I was rushing. I think I do - usually - try to be more careful when posting on here.

I have suggested to the hosts that it might be helpful if 'new posters/members' were given some guidelines, eg about explaining more about their situation with regard to PBC, for the benefit of all us readers, as there is a danger assuming that everyone with PBC is the same. But I've heard nothing back.

I also suggested that all of us perhaps need to be reminded to be more tactful when replying: particularly when replying to new, scared posters - but I was obviously 'hoist with my own petard' on this occasion.

Apologies again,

take care.

[Karaliz in reply to GrittyReads]

Hi Gritty, I wasn't really looking for an apology but thank you! I too was told at 38 with 4 young children "I think you've got PBC but I know nothing about it except it will lead to liver failure " While I have no wish for any one to go through unnecessary anguish I see no benefit in playing things down either...this also can be detrimental. Armed with the correct information allows one to be prepared rather than shocked if things do veer off script...and in life they invariably do! I My motivation for writing was really to remind people that this is a serious disease....thankfully it can be kept at bay for most but it is a reality to live with it at full throttle!

Take care.

[badpiglet]

Hi Leanneee,

Eventhough most of us seem to live in the UK, we all have differing symptoms (some have none), differing additional medical conditions in many instances, live different distances from hospitals and what is concerning, is that even within the UK we have significantly differing responses from our GP's and consultants. So although we can say what has happened to us, it may not apply to you.

8 months sounds way too long to get to see a specialist when you're feeling ill, but is it because you live in a remote area, possibly outside the UK? If you're not sure what will happen, maybe go back to your doctor (or phone) and ask them. I always forget to ask at least one thing when I see my GP due to an appalling working memory and a brain fog that descends when I'm in a consulting room. Your doctor shouldn't mind you asking, especially when it's causing you worry. Also, as mentioned by others, the PBC foundation are very knowledgeable and supportive and can be reached by e mail or phone.

In my case, my GP ordered various blood tests to try and get to the bottom of problems I had feeling the cold and getting numbness/pins & needles in arms & legs. I sort of expected it to come back with underactive thyroid but instead the only pointer was positive AMA. The lab then automatically does an additional test for AMA M2 antibodies and that too, came back positive. My GP explained about mitochondria and said I would need annual blood tests repeated but said virtually nothing else (PBC was not mentioned), so naturally I googled, researched and worried myself senseless. Then I requested my blood test results from the surgery and insisted on an appointment with the nearest consultant. The letter giving the appointment day/time took about 2-3 weeks to come and the appointment itself happened 3 months after I asked for it.

When I saw the consultant, he asked about past illnesses/operations, looked at my hands and eyes, prodded my liver. I did not have any ultrasound/fibroscan. I guess I looked too healthy to warrant any further tests (in medical terms healthy - in reality I look... well....grey...very grey... crap really) . So even having an ultrasound examination by your specialist is not a foregone conclusion. It all depends on your symptoms, your blood test results, other conditions you may have etc etc.

It is surprising that your doctor diagnosed PBC, usually they hedge and wait for confirmation from a consultant/specialist. Even if your specialist does confirm PBC, it seems to be a slow moving condition in many instances. Try not to worry too much between now and seeing the specialist. As I found, too much researching it on the internet can play havoc with your mind and send the levels of stress sky-high. There are too many internet articles that are old, out of date, badly written - so try to avoid if you can!