Just Diagnosed

Hi All

I was diagnosed with PBC on Thursday, this was after seeing a gastroenterologist for, I think, about 4 years. I was referred to him from the rheumatologist after going to him with my raynauds and getting abnormal liver function results on my blood tests. I went every 6 months to the gastro (& every 18 months to the rheumo) having fasting blood tests done beforehand which always came back with abnormal liver function results but which he couldn't find a diagnosis. He used to ask if I had itching, which I didn't but never asked me about tiredness which I had in bucketloads but didn't tell him about as didn't think it was to do with what was going on with my liver (researched loads to see if it was down to the raynauds!). A year ago he sent me for a biopsy which came back inclusive and still no mention of PBC from the Gastro, but due to high cholesterol he put me on statins, which after being on for a month sent my blood results even higher so I stopped them!

The time before last he told me he was going to send my biopsy off to to Cambridge for further diagnosis (I was a bit miffed that this hadn't happened already, not really sure where it was sent before!).

So that then brings me up to Thursday where I eventually get a diagnosis.

I'm thinking I must have had this for at least 10 years which is about the time the raynauds started and which I've read can often be a disease that people with PBC have (along with other autoimmune conditions).

In one respect I'm pleased to eventually get a diagnosis & be able to put my tiredness down to an actual cause but in another I'm pretty annoyed that it's taken this long to diagnose. I'm also taking heart from the fact I must have had it for a long time and it obviously hasn't got loads worse.

I wasn't too concerned when he told me but have read up on PBC a lot since then which has made me realise it is quite a serious condition. I've been put on Urso and will go back to Gastro in 4 months. I also went through early menopause starting in my late 30's. I'm 49 now and still work full time (which can be exhausting).

Just wondering if anyone else has had similar experiences with getting diagnosed and also whether early menopause can be a sympton of PBC (nothing said about this on the web).

12 Replies

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  • Ive been diagnosed very recently as well after having abnormal lfts since 2012.My specialist said i didnt need a biopsy the antibodies are showing in my blood told me i had Sjorgens syndrome as well.Ive had hashimotos/thyroiditius since 2009 so 3 autoimmune diseases now .Will not be getting any treatment she said Urso doesnt always work so she doesnt give it to patients.My Gp knows very little about it so doesnt see it as a big deal .Im 42 havent went through the menopause yet so cant help with any info on that my hormones are mad all the time .lol..

  • Hi

    Not heard of hashimitos before!

    Are they just monitoring your PBC then?

    I didn’t really question it with my consultant, he just said when I go back in 4 months he would hope to see my LFTs returned to normal as a result of the Urso.

    Just wish there was something they could do about the tiredness but reading up on it there doesn't appear to be anything to help combat that!

  • Yes back in a year to see Specialist she didnt want to know about symtoms as far as she was concerned she was just making a diagnosis .Hashimotos is a complete nightmare you dont want to ever be told you have it I cant understand why i havent been given Urso but she said it doesnt really work which i found strange !!

  • Can you go to your GP and ask to be referred to a different consultant (might have to be a different hospital). You have every right to do this. It's early days for me but I was told the Urso slows the progression of the disease & reading stuff on the web this is what most people get prescribed. My Gastro did say it might bring on some nasty side affects (diorhea) but they would look at it again if that happened and he said he only had 1 or 2 patients he had to take off it due to that. He must think it does some good. If you can't see another consultant ask to see the same one again and ask why she believes it doesn't work. Think you have to be quite bullish at times with doctors etc, it doesn't sound like your one is being particularly helpful or informative. I'm going to list the questions I have and I'll either send them through to my consultant or ask them when I next go.

  • You really need to see another Dr if your not a member join the PBC foundation they can help educate you and your doctor. You for self presivation & your gp because they really need to know and there's lots out there that don't.

  • Would also be interested to know if anyone suffers from cramp with this condition. I get it quite a lot especially when excersing.

  • Glad that at last they pinpoint the problem. Amazing how long they can take to eventually come up with the real problem. Its very frustrating for me here in South Africa because people and even drs do not know a lot about PBC. Thats why I have now turned to Homeopath remedies together with my Ursotan, which I will keep on taking, as I know it keeps the bile thin. One important lesson I have learned is to listen to your body and I have cut out gluten and fatty foods. Also I was loosing weight, but the homeopath seemed to fix that. I am also auto immune with under active thyroid, and for that I am on l.5mg Eltroxin p.d.. Glad to have my PBC friends as it is a lonely road as people do not understand. All the advise they give you for itch, as if it is a skin problem.

  • Hi Heleno

    I was diagnosed about 3 years ago but it took 2 years and a multitude of tests. I had a blood test for another reason which came back with high LFTs and that started the long process off. I don't really have any symptoms except tiredness, but that is manageable because I work part-time. I do not have the itching and since being on Urso my LFTs are now within the normal range.

    I did have an early menopause it started when I was about 40 and I also think PBC started around the same time. I noticed I was becoming intolerant to alcohol and I only drink a little as it can make me feel very ill.

    So, you may have made a link and it will be interesting to see how many others have been through an early menopause too.

    Best wishes

    Mayflower

  • Hi Heleno

    I was diagnosed in 2010 although had very high LFT reading in 2006, living in Australia at the time and nothing was done about it. I also had early menopause about 40. I am now 61 and being on Urso for the past nearly 6 years has helped although suffer the tiredness and often pain in liver area. Thankfully now retired from full time teaching so easier to manage. Take care x

  • I was diagnosed in 2009, after going to the GP in January I had 3 monthly blood tests that remained high so I was referred to the gastro, who did further testing and I got the dx on the second visit a month later so not long in the scheme of things.

    However he did say he thought I'd had it a significant number of years but the only symptom I had/have is fatigue and IBS. I was told recently that I have secondry sjogrens and fibromyalgia I don't agree my pains and fatigue is fibro but my gastro says it's not the pbc.

    I had no early menopause but an awful one, the hot flushes and night sweats were horrendous, but then I always had hormone issues and often wondered if this was related to PBC in some way. Cramp was a big problem for me but oddly I don't seem to get that now, and wonder if vitamin D has helped I was found to be deficient last year.

  • Interesting to see a couple of you had early menopause & yes I think I developed the raynauds about the same time so probably the PBC too!

  • I had a full hysterectomy when i was 42 and have felt ill ever since but no-one would take any notice of me, all I got was told you can't blame everything on the hysterectomy ( Oh can't I ?). When i got really ill with PBC before diagnosis they thought I had non hodgkin's and cut me open to do a biopsy, they didn't find any cancer but he found an old shriveled up thing that they said was an ovary, so in other words it was either something left in or the odd ovary was just left floating around in there on it's own to rot, whatever it was it was not attached to anything, so that was my menopause and i am now 65 and feel like 95.

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