Had the appointment now

I was told I didnt have pbc by my GP when she discovered the positive AMA and normal LFT in August this year. Despite this I was referred to a consultant for further tests and since then I have waited around on nhs lists hoping to see a liver specialist, but with the prospect of a 5 month wait i decided to go private.

Even if I say it myself i was well prepared for the appointment and I am glad I was because if I hadnt have been I think i would have left feeling disappointed.

I now know my AMA titre of 1.1290 is high, I didnt understand the meaning of these results prior to asking the question. I now know I do have pbc but need a biopsy to confirm what stage it is at, given my LFTs are normal I am told it should be very low level. I have stressed the need to bring a forthcoming op to remove gall bladder forward so biopsy can be done same time. I am also going to be given URSO, I had to push this a bit to be honest so I stressed the pbc foundation's desire to see URSO prescribed straight away and got it.

I am also going to have a range of other tests too to rule out coeliac disease and check whether I am absorbing vitamins etc. I am likely to have another LFT,AMA, ANA and Alk Phos test too just to see where things are.

I know the private app brought about some debate as some of you said dont waste your money and some of you said I should run with it. How do I feel now?

Well my questions got answered, all 22 of them. I got the desired outcomes I wanted.

So start URSO asap which wouldnt have happened had I not gone, my biopsy will be done with gall bladder op, in a few months probably and further testing for other things are being arranged.

All feels a bit strange as this has hung over me like a cloud for two months just not knowing what the situation was. I think it will sink in a bit more when I start the URSO and go into hospital for the ops and biopsy.

What I would say is that this site has been a god send, I hadn't even heard of PBC 3 months ago yet alone what an AMA was. I have done so much research that I feel more empowered to deal with this and to challenge health professionals on their own decision making and opinions. I advise you all to do the same,

Well thats my update, I hope that for those of you with positive AMA and normal LFT it will give you some insight into what to expect. Get in touch if there is something you want to ask.

Cheers

H x

7 Replies

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  • Hello

    I am so pleased to hear your story. Just like you my gp was to be quite honest absolutely horrible with me saying literally that I'm making an issue about nothing. I have positive tire ama -320 and normal lfts. Even the liver specialist here in mcr said just come back each year and we will see where things are at. So that's the response I got - no biopsy or anything offered. I'm wondering if this is a cost saving exercise. I now don't know whether to push for urso. I think I will give colleTte a call at the foundation. I've been experiencing hairloss and I wondered if I've not been absorbimg vits and minerals properly. Would you ba able to tell me what your private comsultant is going to testr to find this out and if its just a blood test. Many thanks nicky

  • Maybe lfts will be normal depending on the titre of AMAs? I have just got my results out from the hospital (Dec 2010) and the hospital consultant wrote to my GP (as have the copy of letter) stating I had 'a titre of greater than 2560 with normal ANAs'. I did have abnormal lfts but looking they were not positively horrifying.

    Given it seems labs often vary with the way they translate the readings, I can't say the 2 postings here I could compare as I just have a one figure number on my letter to the GP, no points or minus signs.

    I know on my last mth's repeat bloods the print-out was slightly different so was a tad confusing but I don't tend to take very much notice these days of the print-out, a case of glancing and then getting on as I think if you don't it'd send you haywire!

    hannah1973 I too had a long haul to wait to see a hospital consultant in 2010. I stumbled across PBC in ref books in library and also on the net a few mths after the itch started that yr and at the time I was having ongoing bloods at the GPs to rule this and that out. I started having blood tests in March and it wasn't until late Oct before I went to the hospital to see the doctor who did the AMA test. I never mentioned PBC at all in all those mths to the GP as I did have that way of thinking I didn't have anything like this, I was just run down and with a bit of time it would all go away (I wish).

    I know the day the GP said he would get me an appt to go to the hospital, the appt was to have been 11wks but the hospital cancelled so it was actually 13wks I had to wait before I had that first appt when the AMA was done as a starter there. Given that test took almost 2mths to be relayed to the GP to inform me I had PBC and had to write a script for urso, when I got the call from the GPs it didn't seem there was any urgency to see me to give urso to me as was given an appt for the following wk of which my husband then said he was going to take over the telephone and insisted that we had waited long enough as it was since going to the hospital and no were we waiting for a wk with the weekend in-between for the script as I had asked what medication I was to be given and when I was informed urso I knew then I was to be told PBC. I know the GP who sent me to the hospital had not much info or knew about PBC. He was relying on an NHS website when I went in to see him and he wasn't so pleased when I told him I didn't want his print-out, I had far better info myself (and appeared to know a bit more than he did at the time!).

  • Hi, Jaycee here, I was diagnosed in 2010, and have been told I am at stage 1, I know about the LFT's but have no idea what AMA tests are no one has ever mentioned this to me, can anyone tell me what they are and should I be enquiring about them?

  • Hi hannah1973

    Peace of mind at last aye!! I bet you feel as if you've had a great weight lifted off your shoulders. At least you know for sure now. I am so glad you got your questions answered.

    Try and relax a bit now because you've had a stressful time of late.

    Good luck for your op and biopsy. Look after yourself and keep your strength up.

    Cheryl

  • Hi Hannah

    well well well Good job you didn't listen to the likes of me! I suggested you didn't waste your money. I feel bad about that now!

    How much was your appointment?

    Which hospital did you attend?

    Did you need a referral?

    I'm going private now!!

    well done you! Although it's not nice finding out you have PBC it's also not nice living in limbo, and at the end of the day, They just don't know enough about it, and so are happy to send you away with "Come back in a year" let's play the watch and wait game!!!

    I'm definately going private now!

    Incidently, are you having your biopsy private? and if so, how much is it?

    Glad you have found some answers Hannah

    I've had to have my gallbladder out in June, no stones! It was just diseased...

    Goodluck with your op and biopsy xxxxxxx

  • Hi skywalker, dont worry its fine!

    It was £140 at the spire hospital in north wales. The biopsy wil not be private but will be tagged onto a gall bladder op with nhs, a private one costs approx £500 plus consultant costs for doing it.

    What I would say is there was some reluctance to diagnose pbc given i havent had the biopsy yet but I think the high titre on ama's probably sold it and lets face it the urso is on its way.

    If you need some answers straight away then dont hang around, get an appointment and have your questions ready. Do not be fobbed off, be confident (you know your stuff when it comes to pbc) so get the answers you need.

    I have to say I have felt quite ill this weekend with nausea, stomach pain, extreme tiredness and a few other things but knowing why has helped somewhat.

    Your health is in your hands and no one elses so why not take charge of it ?

    Drop me a line if you need any more advice

    Cheers

    Hannah

  • Hi Hannah

    I have read several times that the AMA titre serves no purpose in the diagnosis of PBC!!

    and that the amount makes no difference to the progression of the disease, mind you that was two years ago when I discovered I am AMA positive and lived on the computer looking up anything and everything on AMA and PBC! But things have changed now, so I'm going to start all over again now, specifically looking into the AMA!

    Thankyou for replying and I will contact you again if I think of anything.

    And don't forget that we're all here for you!

    Take care of yourself

    xxxx

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