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Real members of myPBCteam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

How many people are losing their hair? Just wondering if it's coming from the disease or the medication!!

A myPBCteam Member asked a question 💭
Montvale, VA
September 23, 2025
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Answer Summary

Members connected over concerns about hair loss, with many attributing it to Ursodiol rather than PBC itself, describing symptoms like... Read more

Members connected over concerns about hair loss, with many attributing it to Ursodiol rather than PBC itself, describing symptoms like thinning, breakage, dullness, and hair falling out in handfuls. Several members shared potential contributing factors and helpful strategies, including checking iron and thyroid levels (since low iron and hypothyroidism can also cause hair loss), taking iron supplements to boost energy and hair health, and understanding that some experienced improvement after adjusting or stopping medications. A recurring theme was the frustration of managing overlapping symptoms and side effects, the challenge of distinguishing medication impacts from disease progression, and the importance of working closely with doctors to monitor bloodwork and explore underlying causes like vitamin deficiencies or thyroid issues.

A myPBCteam Member

I've been taking 900 mg Ursodoil per day for about 5 years and my hair is definitely thinner. I think it is the medication not the disease.

September 25, 2025
A myPBCteam Member

Hi Zipporah, my hair is falling out by the handfuls, I'm not sure why. I stopped taking my ursodiol as it was making me so nauseated and my lower back to hurt so bad I couldn't sleep. So its not the medication for me.

September 23, 2025
A myPBCteam Member

Been on 600mg Urso daily since June, and so far I haven't noticed any hair loss. I realize it's only been a few months, but could hair loss be dosage-related?

September 23, 2025
A myPBCteam Member

Mine has been breaking- and thinning I think. I started taking iron ( I was low iron in bloodwork) -helped my energy and might be helping my hair.( low iron puts your hair follicles in hibernation ).
Started Urisoil a month ago and my blood numbers are much better, skin is better….haven't noticed any problem with hair.
Good luck to you.

September 23, 2025
A myPBCteam Member

When I went to the er on Friday, they did some imaging and blood work and everything come back good. The doctor at the hospital was calling a neurologist and asking him different things he suggested her do! He said she had done everything. I was reading up on where anxiety and stress could cause it but I don't really know. I have been to two ers and neither one of them could find anything, it's really frustrating not knowing what is really going on!!

September 24, 2025

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