I am starting to lose hope!

Hi all, my latest update and I am more scared and confused than ever. I if you remember finally ditched the gastro guy, got a fab hepatologist who did a fibro, dexa scan and just had the MRCP last week. She started from scratch. I had seen her twice she was moving fast to get me either a diagnosis for PBC or PSC.

OK so she said curiously the AMA test flickered positive but the marker?confirmation test showed negative. Does anybody know what this means?

I went today as she booked me in outside her usual clinic, to discuss results of MRCP as she was looking for PSC.

All clear (good thing I know and I am holding onto that as a positive) but I walked in and I had another fibro consultant. Mary the hepatologist has retired, we now have no heps at my hospital. I could cry and cry. My GP referred me as he said Addenbrookes or Birmingham would take longer.

He said your alk phos is better and you look well, scan clear so all good.

I said does this not mean the Urso is doing its job, he said not necessarily the bile stone has disappeared it may be that.

My husband (thank God for him) as he says I ' fake being well to make it easier on others' He said last night I woke to Jo standing in the bedroom clawing at herself and silently crying, she does this most nights and never wakes me to complain, she took two hours to wash hair shave her legs, tend to her Granny, sat exhausted then put on a dress made herself look OK to go into the world. She may look well but she took all of her day's energy to get here.

The consultant sat up a bit, I said I have been on Urso for 9 weeks that surely would (if working) be a cause for my GGT ALP to be lowering?

He said you really need to see a liver specialist you may need a transplant!!!

Then booked me in for biopsy but said Mary was against a biopsy she said they carry complications and went for all the other used tests.

He said biopsy carries the risk of organ damage, severe blood loss, permanent pain and now I am asking why if I need a specialist is he doing it?

I expected to be reassured today, now I feel back at the start, with all the usual symptoms robbing me of joy.

If I had shut up he was going to dispatch me off with a 'you look well, liver enzymes are improving, review in 6 months' his first decision, now I feel as I asked about negative AMA and he had never heard of it, he is looking to do something taken more blood but won't send or tell me results he said it's not necessary. He said try Piriton, I am sure that would be bad for my liver, anybody know? Questran failed and I know about the other meds, but without a specialist I want to hang on. He was nice, but I feel not eqipped for my medical mystery.

Waiting for the PBC foundation to call but just feeling alone as hubby had to go back to work.

15 Replies

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  • Hi Jo_Br

    I hope by now you will have heard from the foundation as I see your post is a couple of hours ago. So sorry to read that you are itching so badly with no medical relief. Not that I think anti histamine are a long term solution but I did use Pirton with no beneficial outcome. However 2 cetirizine twice a day was prescribed by the GP and I quote "for people like me" which did help for a while. Cetirizine can be bought over the counter but as I say hopefully the PBC Foundation will have been able to help you. Oddly I think for many of us who are truly ill we will try to put on a brave face but for the moment it seems you need to think of you first. Really hope someone can help you soon.

  • Not heard yet, but I know they will call. I just feel lost and without any place to turn regarding diagnosis/treatment, diagnosed with PBC, then told not, then the 'flicker of a positive'. Not having a liver specialist and the consultant freely admitted I need a specialist.

    I was not aware I could take two Cetirizine, I may do that. Piriton is a drowsy one, hence I hoped it may help, well at least at night.

  • Sorry forgot to say thank you for replying.

  • Do I remember your GP was great. If yes you may want to get a phone call to him today but certainly I was prescribed 2 twice a day for some 12 to 18 months. I did find they had a sleepy effect but I do not remember if that was a side effect. Also i did have a biopsy to determine my PBC with no horrible outcomes although the possibility of problems was pointed out to me.

    Hope something happens for you soon. Best wishes

  • Yes he has been great, I feel awkward asking him to refer again, but as he knew Mary the hepatologist and said she was the only person he would recommend, hopefully he will refer me, just want to check out with PBC people what I need to ask about the lack of diagnosis, blood tests exactly needed etc.

    I also am not sure what waiting times are at liver units. I imagine there is a wait!

  • Hi again, I know it is difficult in the NHS with waiting times and not wanting to jump the queue but not knowing your full circumstances it is a bit rude just to jump in by hey ho - here I go :-)

    it seems like many of us you do not want to push yourself forward (after all our disease is not urgent - is it!!!!) hence it was your husband's remarks that made the consultant sit up and listen. It is a real problem when looking well but we are sick inside. I think your GP needs to put you forward as an urgent case, he would if your problem were heart related! (as just happened to a friend) I agree it is good to get the advice from the PBC Foundation and I hope they are in touch soon but I really do not know how you have managed to cope for so long - my itch drove me crazy but I am lucky with the questran and the rifampicin to now have some very calm times. I am also quite cross about the specialist who ordered a raft of different tests to suit her and then goes off and retires without a proper handover.

    I wonder what the PBC Foundation think about biopsies, all things come with such dire warning these days but I wonder what the percentage fail rate is.

    Jo_Br I most sincerely hope there is an answer out there for you soon.

    :-)

  • There was a man that posted on this sight not to long ago. His wife was rushed to the hospital with Pbc symptoms I believe that her outcome was a liver infection. How does one look up old postings. Jo I'm sorry that you are going through ugh this.

    My very first AMA blood test was 1:160 my second one was .8. Don't know why it was lower.

    Jo hopefully this all turns out to be good news for you.

  • Thanks Skypony , I have had this too long now I think to be a liver infection, I also think the MRCP would have shown it, maybe. My first bloods were suspected to be a possible infection, then the GP said they would have normalised. I have felt exhausted and itchy for way longer than the 9 months ago also.

  • I would ask my Dr to cut me open and look at my liver. I read another sight that a dr did that and a pocket of pus was found. I'm just trying to figure something out for you. In the mean time how is yur diet? I would try to let sugars and wheat go. Soft drinks as well. I'm hoping this is a situation that no news is good news. Have you been checked for hep A, B and C. Probably a dumb question. Of course you were

  • Thanks Jennyhadenough no dumb questions as you wouldn't know I have been tested for I feel now every liver disease under the sun! All hepatitis alphabet so far up to D even!! From memory hemochromatosis, HIV, PSC, PBC, cirrhosis.

    There is no doubt I have a liver issue as bilirubin, GGT ALT's and ALP's all abnormal.

    Been cut open enough times to know that is last on my list hehe! But yes I get sometimes it may be necessary.

    My diet is tricky as my weight loss is still a concern. I am struggling to maintain, let alone add weight and I look frightful.

    So I am eating to gain enough to cope with any health issues.

  • Sorry to hear you are going through this. Not having answers is the worst.

  • Thanks it sucks, hope you are OK. x

  • I just had my first appointment at Kings College since moving from Leeds and feel relieved to be in safe hands. I had a biopsy for diagnosis and now been told that this is unusual because of the risks. My blood results were inconclusive so thats what was decided at the time. Hope you get this resolved soon.

  • I think this is the way forward, I need to be seen in a liver unit. I am not happy for the man I saw to perform it, does that sound awful? I would prefer somebody who carries them out routinely as the organ is their speciality.

  • I refused an earlier appointment with a Gastro because i have more confidence with a Liver unit consultant. It takes me 2hrs to get thete by train but worth the effort.

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