PBC Foundation

Any thoughts??

I am a PBC sufferer and other than horrendous fatigue, I am not too bad. My concerns are that my 20 year old son has been unwell, fatigued, weight loss for at least 6 mths. He has raised ALT and is now in the NHS system for more blood test and a scan. Dr seemed concerned , he said they were very raised, so it is all being rushed through. I know no one here is a Dr but i am very concerned, and any thoughts would be great

5 Replies

Hello obviously it could be a number of things. Has his bowel habits changed in those six months or has he lost his appetite? If either one of these it could be a gasto problem such as Crohn's disease. When they did the bloods did they indicate what his crp level was as that's a good marker for anything to do with weight loss and tiredness. If it is something like crohns don't panic as the disease can be brought under control, you can be in remission for years without a flare up and the nonsense on the Internet about the illness and the condition is not worth reading. I personally would be pushing to see a gastro specialist immediately and if they don't not what is causing it ask for a colonoscopy as that will tell if anything is wrong with the bowel. Good luck I'm sure with the right care your son will be fine. The worse part of any illness is not knowing what it is. Take care.



I'm pretty sure that you were asking for a list of PBC symptoms not for suggestions about what your son may have.

If he had a bad cough with the fatigue and weight loss and you had a parrot in the house I would say that he may have Bird Lung Disease. I say this somewhat in humor because I had that - was on oxygen for 4 mos. last year because of it.

The signs of PBC are many - you're lucky that you don't have more than the fatigue - as bad as that is.I know there are different levels of fatigue as well. You could have anyone of the others listed below as well;

Bowel issues

light to severe itching

yellowing of the skin or eyes

pain in your abdomen

dry mouth or dry eyes

a dry Hooha

a swollen stomach

body temperature issues

gluten sensitivity

Dr. Google says there are a few more but these seem to be the most common ones.

I think it all depends on how long someone had PBS before their diagnoses. If it's caught early enough and treatment is started early enough it seems to lessen the symptmons. If someone is aware that they have it early enough in life they can also change their lifestyle if they need to.

Then there is the fact that some people have PBC as a result of another immune issue. They end up with a mix of symptoms and sometimes can't really be sure about what illness is causing what. What came first? The chicken or the egg?

I have HepC also. I'm sure I had that first but that's another story. So I always suggest that someone have the separate test for it if any of their initial liver tests results don't come back in the normal range.

Are you on urso yet? A low dose a this point may be enough to halt the progression of the disease.Keep us posted about your son...


1 like

Both my mother and I were diagnosed with PBC/AIH overlap within a few weeks of each other


Thanks all, I have been wondering about AIH as his symptoms seem very similar to those. Will let you all know, as he is a young man and doesnt drink or take drugs and one of the few these days that never has ..


Unfortunately, theses diseases attack anyone. I am a massage & cranioFacial practitioner, a yoga instructor and I only eat processed foods when I am out or at someone's house. You would think I was a poster child for health!

Regardless of his outcome, they certainly are manageable. I think the key is attitude. Good luck to both of you. Sending good mojo your way


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