How can I help myself?

[Melani1]

Hi everyone, I'm new to this, I was diagnosed with PBC last week, came as a bit of a surprise as my doctor had advised full blood test for something else & this showed up! I also have an under active thyroid and I'm feeling rather tired & my memory is pretty awful at times!

So, I'm thinking there must be foods, drinks, exercise, etc that can help, what works for you guys? I did ask my consultant who suggested oily fish and multi vitamins but I'm guessing there's much more I can do to help myself. Thanks in advance.

[LindyRich]

First thing- try to resist "Googling" PBC. Lots of wrong , old and useless info out there. I did and really frightened myself.

Second. Make sure to have your regular thyroid tests. I got so distracted with PBC and my thyroid went all out of wack. When i finally realised i was well under active. Tiredness is a symptom of both conditions.

Lastly, join PBC FOUNDATION.

The link for PBC FOUNDATION is pbcfoundation.org.uk

You can download the compendium. It's informative and understandable.

So good you prepared to look for ways to help youself. Positive attitude is helpful.

Best wishes ☺

[Hidden]

Hello Melani1.

To find this site you've probably come across PBC Foundation but there is also a free dvd that can be sent to you from Liver North in Newcastle (UK). Details PBC. British LIver Trust site also has leaflets you can check out, there is one on diet but as I understand it, it's only if you are in a later stage of a liver condition that diet can come into it.

I did ask when I was diagnosed in December 2010 and my consultant just said to continue as I was dietary-wise. (This consultant said he gave GPs talks on PBC.)

Pre-PBC I did eat what I considered pretty healthily, fruit and vegetables, not much in way of fried foods and fast foods. I have continued but since diagnosis I have done a bit of experimenting myself but can't say that anything has made much of a difference to having PBC.

I don't believe in a drastic dietary change, moreso with having PBC now. I find for myself it is best eating grand at breakfast, good at lunchtime but then less come the evening meal. I find this seems to work better for me.

I've never been recommended to take any multivitamins. I've had a short course of iron tablets since diagnosis but the cause was found to be nosebleeds (which was nothing to do with PBC, due to a tiny pinprick nose graze I did have some ENT appts for).

My philosophy here with PBC now is to just eat as best I can so I can try to remain healthy and don't succumb to anything else.

livernorth.org.uk/

britishlivertrust.org.uk/li...

[ranrace]

Of course take care of your body like stated in the post above. The biggest thing for most of us. Get your head around having a diease. Enjoy every minute and live life. Get involved with your healthcare professionals. They respond better if you care and become knowledgeable about your care. I had a big blood scan and they found I was really low on some areas. Changed up my diet, made a point to be in the sun more. 6 months later checked again, I got some over the counter tablets. After the new year I'm going to have it checked again. To make a long story short. Accept, modify your life a bit, do awesome things and enjoy life.

I once said that finding out I got pbc was the best thing that has happened to me. Was in a rut before, now I really enjoy my life. If I die tomorrow from liver failure, at least it will be with a smile.

Take care and enjoy this network of support

Randy

[Gaspereaux in reply to ranrace]

Hi Randy, i just read your post from seven years ago. How are you doing now? Is m recently diagnosed (in November of 2023) and am still coming to grips with the idea. My biggest thing is major joint pain. I am 64, and have always been fun-loving and active, and do NOT want to change that! I am out of my country for the winter and am wondering if acetaminophen is okay to take for the joint pain. Have you experienced this?