Living with pbc and under active thyroid and hopefully nothing else!!!!

[Lcagar63]

I am a 53 year old woman from London.was feeling ill for over 2 years. Feeling tired washed out depressed and angry. A routine hospital appointment picked up wrong blood levels in August 2014. Wrong blood tests carried on until November 2015 when I was diagnosed with under active thyroid. Still felt unwell after starting medication.had to get a bit shirty with my gpafter more wrong blood tests. Finally sent me to a liver specialist at st Mary's Paddington. As soon as I sat down she said I think you have pbc. Never heard of it!!! Was officially diagnosed in June 2016. On 1000mg of urso a day. My bowels seem to be affected the most.yellow putty stools one day then constipated and then normal for a few days.doctor says if liver tests don't settle I will need a liver biopsy. Have had a bone scan and ultra scan will get results in 6 weeks. Hopefully they don't find anything else wrong. Can cope with what I have but don't want any thing else.

I have so much gas I could blow balloons up for a living.

[Hidden]

Hello Lcagar63.

It is early days on taking urso (I was diagnosed with PBC December 2010 when I was 46) and in the beginning it's not uncommon to encounter a few side-effects. I started on the urso and had a bit of tummy bloating, I thought the itch I developed early 2010 (reason I went to see my GP) that had gotten worse, I developed heartburn I never had pre-urso and I started becoming constipated. The side-effects did vanish after a few months on urso but I had to readjust the fibre I already had in my diet to overcome constipation that at times I can now have. Stools can go paler on urso but they can also get paler with PBC. It is due to bile in stools that cause the normal colour.

I am sure you eat healthily as most of us state on this site but now you have PBC it does pay to take even more care I find. I go for quality as opposed to quantity. I reduced fat intake that bit more as we need bile for breaking fats up so I personally think it helps in not overdoing fat consumption but we do need fat in the diet for the fat soluble vitamins. We can be deficient in Vitamin D that we can make with the sun (that's been a joke this summer, I am in Lancashire and it's been overcast here since June and every other day rain!) hence I expect you went for a bone scan as Vitamin D is required for bone health.

I was diagnosed with PBC due to symptons (I was fatigued in 2010 but sometime 2011 it vanished, still got the itch though that has improved over time and now it is usually later at night until around 6a.m. which then causes broken sleep), my blood work (the LFTs or liver function test as they are known were found to be abnormal as in higher than normal) and then when I finally saw a hospital consultant beginning November 2010 he took antibodies tests and I was found to have a high titre (measure) of a certain antibody (known as AMAs for short) to give diagnosis. I've not be asked to undertake a biopsy nor would I agree anyway. Though it can diagnose PBC if there is any doubt, I am dubious about stages as they are known in PBC as I just do not care to know. I am confident a scan can show the liver condition (mine was said to look pretty much normal in 2010). A biopsy doesn't change treatment in PBC either.

[Lcagar63 in reply to Hidden]

Thanks peridot for your reply.to be honest I still eat some crap but I am trying to eat more healthy. They said they would like to do a biopsy to see if I have an over lapping illness. Not keen on a biopsy but will cross that bridge when I get to it.

[Twinkle26]

Hi I too have underactive thyroid with Pbc and few other things. I had the biopsy few weeks ago, I was dreading it but to be honest it hurts for a few minutes and you get some discomfort afterwards for a while but it's not as bad as I was thinking it would be. You have to lay still as they use a scan to see the best place usually the base of the ribs near the back, but after you rest for a few hours and then you go home to hopefully rest more, you can't lift anything heavy for a few weeks but you should get back to what's normal quite quickly.

If you haven't already sign up to the Pbc foundation they can give you any information you may need as the Pbc progresses etc.

Best wishes

Carol

[Lcagar63]

Hi twinkle what were they doing the biopsy for? Have you had your results.

[Twinkle26 in reply to Lcagar63]

Hiya, it was more for their records, I have fatty liver but the liver was as expected apparently, little scarring nothing too bad.

So I'm no wiser for having the biopsy but at least I know there's no going back now as I need to believe I have Pbc lol and it's not a mistake as I'm sure we all want to believe it is.

Carol

[Michiganpbc]

I was told to have the biopsy to make sure what disease you have and what stage you are in , I have 2 liver diseases PBC and Hemochromotosis so I wanted to know how damaged my liver was from going undiagnosed for a few years I have stage 2 PBC and am on URSO, I feel good knowing what stage I am in as I don't like surprises as these diagnoses shocked me ...

I think it's a personal choice for you but also helps the Doctor choose the right medicine for you and to give more accurate picture for the future...

Hope this helps everyone is different this is a good place to get lots of good information then think about it all later when you have the information you need spend some down time thinking about it .

Good luck to you let us know how you are doing later.