I really need some advice

A year ago I was referred to gastroenterologist by my rhematologist as he suspected I could have PBC. Waited 4/5 months (Sept 2016) for appointment. Was told by 1st gastro that I would one day need liver transplant. Was sent for ultra sound scan and further blood test. In Nov 2016 I received a copy of the letter sent to my GP, stating the scan and bloods showed PBC and that I would be seen again in 3 months. I saw another consultant in January 2017 he was not very communicative but did send me for further tests: MRI with dye and without dye also liver biopsy.He wrote to my GP on 13 Jan 2017 I got a copy which stated: Positive AMA at 1:640. ALP 143. Deranged liver function tests. Hypertension. Vit D deficiency. Ultra sound scan possible liver cirrhosis. Possible PBC. I went to see him again last Tuesday March 2017. He looked at my results on the computer (I got the feeling he hadn't looked at these before). He kept mumbling away and said MRI showed early cirrhosis. I asked if I had PBC, he sort of mumbled something. So I asked him if my AMA is positive does that mean I have PBC. he said yes. I ask will I be given medication he said No it doesn't work. Well how does he know it doesn't work on me if I haven't tried it. He said he is going to get a stain done on my previous liver biopsy. I don't know what that is for he was just so uncommunicative. He also said you will need a liver transplant. See you in 3 months. I ask do you have other PBC patients and are they on Urso, he said yes. I walked out of there totally confused and gobsmacked. Thinking "What was that all about". Sorry for the long essay, but any thoughts anyone?

12 Replies

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  • Bullet what country are you in please

  • Jennyhadenough I'm in England UK

  • That;s absolutely unacceptable, demand to see another consultant, you have the right, or speak to Robert at the PBC Foundation, to tell you you would need a transplant is ridiculous, it dosn't always work like that, I have PBC for 10 years now, I don't take Urso, my LFT's have just been done again and they are perfect. the worst thing you can have is stress, I urge you to call Robert, he will put your mind at rest, but do ask for another opinion, and don;t worry, just try and get as much info as you can, and this site is brilliant, we have all been there and know what you are going through. Keep strong, don't let the b---------'s get you down.

  • That's shocking. I think they could have at least explained what was going on and why. Can you go to your gp to discuss it? They should be able to access all your results. 3 months is a bit long to wait for an explanation.

    I Hope you find the answers your looking for

  • Thank you Jaycee and Angel_b. I am just about to see a GP. Never seem to see the same one twice and so far none seem to know much about PBC. I also have stomach issues, Bloating, gas, pain. I will let you know how I get on.

  • Hi bullet, I originally went to my gp for IBS symptoms, bloating, pain etc. PBC was found as a result of blood tests while they were trying to see if i was celiac or there was any other cause behind my symptoms. I'm on urso and it's really helped with the IBS symptoms. I would insist on a second opinion, like I'm going to do in may if the idiots I'm dealing with lose my blood samples again!!! or i see another junior doctor who knows less about my condition than me!!!

    Keep your chin up and try not to stress x

  • Thanks SammyjoW. I just got back from GP who was a temporary one. Very nice but she's given me Omeprazole and i've read the leaflet and it states "Talk to your doctor if you have severe liver problems" Now I don't know whether to take them or not!

  • She is going to write to the hospital regarding the consultant, and we will wait for his letter of my results then I'm going to ask to be referred somewhere else.

  • I'm sorry you were treated that way. I was diagnosed last spring and also had MRI and Biopsy showing early cirrhosis. My doctor started me on Urso and my LFT's were way down after 3 months. My doctor never said anything about a liver transplant, either. I would ask to see another doctor. Good luck!

  • Thank you gingarita. I will ask to see another doctor

  • Find the best GI doctor do research . Go to the best hospital in this area of specialty and don't settle for less than what you deserve . Even University Hospitals are better than what this doctor sounds like and they take all insurances and payments ... they are up on all new developments . This is your life . You can't afford to settle for lack of communication or mistakes in translation . Be proactive by getting a copy of your medical records from all of your docs and physically take them to your appt with a new doctor . I had to do the same thing and now I have personal care that I didn't before . I filed a complaint and never went back . It was the best decision for my health I made . Now if I'm confused or have any questions I leave a message and she calls me back the same day I also Jane her email and we have checkups every 3 months to discuss and re-evaluate any concerns . You don't need the added stress of the uncertainty that this doctor is giving you .

    Best of luck .. praying for your healing 🙏🏼

    Claudia

  • Thank you Seybeaute.

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