Newly Diagnosed

Hi I have recently been diagnosed with PBC and I'm pretty scared about it.

Abit of history, I had a total thyroidectony Jan 2016 due to severe Hashimotos goitre etc and felt instantly better afterwards. ( having had the worse 2 years )

I went to my GP with a swollen tongue and itchy rash on my chest, I was tested for all allergies etc my bloods showed a 1:320 positive speckled ANA and my anti-mitochondrial antibody titres were high at 1:160 and my FBC showed a low MCV

U&Es and LFTs normal

Symptoms I've notice are tired, leg aches and night cramps, had a bloaty stomach ( looked 9 months pregnant ) a few times, itchy chest a few times.

My TSH levels are great and have been for awhile now.

Any advice will be greatly received. I am calling the hospital today to make an apointment to see a consultant as recommended by my Dermatologist who found my condition.

Thank you in advance

4 Replies

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  • I don't understand all of your abbreviations. But your AMA is the same as mine1/160. That is a weak positive. I am now a .8 for AMA M2. I'm Ana beg but smooth muscle positive. Only very early Pbc showed in my biopsy with no aih. My aih was 1:80. Now 640. Something isn't right here. I went to Mayo for a second opinion and they will get me right. My alt enzyme is the only enzyme elevated at this time. From late January they alt, ast and alp was elevated just a little to high for me.

  • Thank you for replying, I'm having more bloods done and a scan on my liver so I'll know more then. I hope everything goes well for you x

  • Hi Mmw-15

    Welcome to the group. If you have not already done so join the PBC Foundation (free to join through the logo above) it has a wealth of information in its members section.

    The main symptoms of PBC seems to be fatigue and itching with brain fog also beginning to be recognized. You have certainly had a bit of a time getting through your other condition but do try not to worry, easier said than done - I know, but stress is an enemy for us and our condition.

    You say you have been diagnosed with PBC but have to call the hospital for an appointment to see a specialist. Have you been prescribed Ursodeoxycholic acid yet? URSO is the first line of defence at the moment and for those who respond will find that URSO will slow down the progression of PBC however currently there is no cure. A drug just recently on the market Ocaliva is now available in the UK for non responders.

    Hope you do not have to wait long for an appointment

    best wishe

  • Hi thank you for replying back, I have private health insurance through work so when I received the copy of the letter they sent to the consultant I called for an appointment. I saw him last night, he's taking more bloods to check everything again and I'm having a scan done on my liver, I have to then go back for the results, he's ordered more blood tests because my levels had increased within the 6 weeks from when I had them last done. Thankfully my liver function was normal last time so if all is the same when the results come back he said he will see me in 6 months time to check everything again. I'm going to look at my diet as I've read that helps as well. Once again thank you x

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