Desperate Newby needing advice

Please can anyone help? I recently tested AMA and M2 positive and my GP said it was PBC. I went to see a consultant at the hospital who said I haven't got PBC, I'm just AMA positive. He isn't going to give me any treatment and told me to go to my gp and get my bloods tested every six to twelve months. I originally went to my gp with terrible tiredness and itching and I have had a persistent ache in my upper right abdomen since December. An ultrasound scan was clear.The consultant was dismissive and said it can't be my liver and said it was fibromyalgia. My gp said I was vitamin D deficient and gave me a course to take. The consultant said it was unnecessary. I have recently developed cataracts in my left eye and this has been followed by rapid hearing loss and tinnitus. I'm told these can't be connected to PBC but if I'm lacking vitamins because of poor liver function, it could be connected couldn't it? i also have episodes of low blood sugar. I feel as if I'm being pushed from pillar to post and no one is taking me seriously. Any advice will be very much appreciated - thank you!

5 Replies

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  • Hi. I was told positive AMA was PBC. I would get a second opinion.

  • Thanks, that's exactly what I thought. Will look into getting a second opinion.

  • Hi Worriednan,

    I agree with Skippy, I would get another opinion. You are positive for AMA which is highly specific for PBC and you also are suffereing from 2 of the commonist symptoms, fatigue and itch. Even if you are in very early stages, the medication Urso which is used to treat PBC could be very beneficial. I was diagnosed just a few weeks ago, I had a normal ultrasound but I have been confirmed with early PBC. I also have intermittent dull upper right abdo pain (which my doc said couldn't be liver too) but having heard from others here it is frequently reported with PBC and though the liver has no nerve endings, may be related to the sac around the liver.

    Good luck,

    Puddles

  • Thanks Puddles, I will look into getting a second opinion.

  • Hello.

    The only thing I can think of with regards to you not having any treatment if you've been informed you have PBC is because your LFTs are normal possibly.

    The only treatment available for PBC is ursodeoxycholic acid (urso). I was diagnosed Dec 2010 after an AMA test. I had various blood tests over the 8mths prior to being informed I had PBC, my LFTs remained abnormal and were slowly climbing. I had a pretty normal-looking ultrasound scan 5 months prior to Dec 2010.

    Due to me originally visiting the GP after itching for over a fortnight (the fatigue I didn't think anything about due to work commitments at the time) I was known as symptomatic once I got a diagnose of PBC as itching is one of the main symptons it seems alongside fatigue. (Fatigue is no longer a problem for me, left me quite some time ago.)

    I did have a Vit D reading that was said to be 'a bit low' but on looking at the figures, it was on the line between normal and notso. This was said it could be due to PBC but also the fact I was not a sun-lover (like I do now, make the most when I can) and I also was working in the times when it was sunny indoors). My Vit D reading was perfectly normal and adequate 6 months after diagnose as I was utilising the sun a lot more than I did prior.

    I think if you are not satisfied with your doctor's response I'd certainly be inclined to ask to see a different doctor and find out what his opinion may be. But given you have been informed you have PBC and you are going to be monitored at intervals via the bloods as we all are with PBC then it could be the case there comes a time when they show that you may need urso. I'm not sure but love to know what is the criteria for being given urso, I somehow think either one - symptomatic or over a certain abnormal level of LFTs along with GGT - or perhaps both.

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