PBC and Hair loss

[N-Sedky]

I know hair loss is one of the things I was anticipating with the diagnosis but never imagined it would be in this massive amount! I am losing hair every minute and my pony tail now is so thin and empty I wonder if this is because of PBC or because of URSO and is there anything that can make it better or lower this side effect a little? Thanks x

[Hidden]

Hi N-Sedky,

I found i lost alot and begining of medication,even got hairdresser to cut me short. Not advising that drastic action though 😁. It did settle and my hair did get nice and thick again after a few months 😊. I am experiancing it again but just changed for urso to obeticholoc acid so putting it down to the that and hoping it sorts itself out again.

Take care xx

[N-Sedky in reply to Hidden]

Hi Angel, oh very strange! So the medication causes it not the pbc? Is it related at all with the progression of the disease? Hope it settles for you again soon.

[Jw120]

My doctor has found that Urso can come with anemia. Once we got my anemia under control my hair started growing back. There is hope! I lost a ton of hair and it’s all back to normal now.

[N-Sedky in reply to Jw120]

Oh so glad to hear that! I do hope it's a temporary thing x

[DRK1960 in reply to Jw120]

How did they get your anemia under control?

[Odieweb]

I found that I had an extreme amount of hair loss pre-diagnosis. With urso and other supplements that I am taking it seems to have settled down. Good luck N-Sedky I hope it settles down for you too. Maybe check whether your are low in other minerals and vitamins, as absorption of nutrients is impacted by PBS and other AI conditions.

[N-Sedky in reply to Odieweb]

Hi Odie, thanks a lot. I do take a Multivitamin and Omega 3,6,9 everyday but you're right I might need a blood check in case something is particularly low.

[Odieweb in reply to N-Sedky]

I am trying to have a comprehensive blood test every six months last done in January 2020 - including Liver Function Test (Bili/ALP/CGT) Vitamin D Iron (which tends to be low) and Thyroid Function Test. Also hormones. I'm taking some supplements recommended by a doctor that specialises in liver (though not a liver specialist - Australian Dr Sandra Cabot), however my general practitioner thinks they are a waste of money, but I will still take them as I don't think I'm getting all that I need from my food. Though I wish I was. And I've changed my diet for the past almost 2 years since the GP and a Chinese Medicine practitioner both thought there was something wrong with my liver, before a PBC diagnosis - no alcohol, gluten or dairy, or sugar - lots of fresh homemade food - though am getting tired of that so easing up a little - likely won't ever drink alcohol again though.

[Ellyne]

Biotin helps hair come back and it doesn’t impact the liver. But it takes a few months to see results

[N-Sedky in reply to Ellyne]

Hi Ellyne, yes I heard it's really good for hair growth. Will give it a try, hopefully it works. Thank you x

[Texasliz]

I have taken daily Biotin (a B vitamin) for years. It has really helped me and worth your trying.

[N-Sedky in reply to Texasliz]

Hi Texasliz, oh good to hear that, will give it a try. I know Biotin is very good for hair growth. Thank you x