Just an update: I was diagnosed with PBC in... - PBC Foundation

PBC Foundation

8,178 members6,950 posts

Just an update


I was diagnosed with PBC in August last year and had gall bladder out in December.

I have felt fine for the last 3 mths but have to say have been disappointed this last 2 weeks with having symptoms I thought were linked to gall bladder problems and long gone.

I asked my consultant if i was absorbing vitamins and he said yes your skin tells me that, i insisted on a check anyway. I have since found Im calcium and vit d deficient and now take calcichew twice a day. I have been under a dietician for 6 mths as my weight is too low as im 6 stone 12 and aged 39 / 5 ft tall. I now take Ensure drinks every day under prescription.

I take iron tablets for chronic anemia but have been worried that i may have pernicious anemia as i am sometimes short of breath and my heart rate keeps varying in pace and rhythym. I need to take this up with GP as she doesnt know about these symptoms.

The tiredness has been a killer this last few days it has felt like a spell has been cast on me and the need to sleep has been so desperate i have had to park car in carpark and just nap. When i sleep my breathing deepens and it feels like my body is trying to repair itself.

I hope these symptoms are just sayng Hi and having a passing visit because thought of feeling like this every day is very worrying.

Oh yes as I am on Calcichew i have requested a dexa scan as im at risk of osteoporosis.

Take urso twice a day, LFT normal, liver scan normal, liver biopsy normal, AMA was about 1:320 on last check and rising.

Thats all folks

3 Replies

Hannah -

Please have your GP have you checked for COPD. The shortness of breath and variance in heart rhythm could possibly be from that. My symptoms went so far as to nearly passing out before I finally was diagnosed with COPD. I am not diagnosing - "just saying". -:)

Be blessed and stay in touch.



Defo need your B12 checked . Vit D deficiency, iron and B12 are commonly low in people with autoimmune conditions. Also - have you had your thyroid checked? I have hypothyroidism, and before i started meds i was absolutely floored with it, i,ve never known such desperate tiredness

Have you been checked for sarcoidosis. or even diabetes. My daughter has been loosing weight. I wanted her checked for sarcoidosis as my son was diagnosed with it in the autumn and they expect that I also have it. as my ACE levels are elevated. What they discovered was that she has diabetes 2 and what I did not know is that weight loss is one of the symptons

You may also like...