Hair Loss: Quite a few of us, on this forum... - PBC Foundation

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Hair Loss

butterflyEi profile image
18 Replies

Quite a few of us, on this forum and other sites, have mentioned how much hair loss they have suffered. My hair has always been fine and thin but with PBC and age the top of my head is sparse to the point where it worries me especially when there are strong ceiling lights. I have been investigating the possibility of a hair piece when I came across a product called Toppik. I have looked at one or two You Tube videos which make the product quite appealing. Before I go ahead and purchase a small tub for trial I wondered if any of you lovely people out there have tried this product and what your thoughts are about it.

I am siting the Amazon page as I hope this will be a safe link if anyone wants to look.

amazon.co.uk/TOPPIK-Hair-Bu...

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butterflyEi
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18 Replies

Always consider, whatever you put on or in your body goes through your liver, as it your body's filter.

tinypixie profile image
tinypixie in reply to

My friend used this stuff extensively and suffered permanent lung damage from inhaling the fibres. My hair has gone terribly thin but there’s no way I’d used this stuff. My solution has been to cut my hair extremely short. I miss my long hair but it’s no longer looking so thin and lank. Good luck!

butterflyEi profile image
butterflyEi in reply totinypixie

Thank you tinypixie this was the sort of knowledge I was hoping to find

butterflyEi profile image
butterflyEi in reply to

A good point Hidden thank you

Yankeerose3 profile image
Yankeerose3 in reply to

I'm wondering now if hair coloring is safe to use since it can be absorbed through your skin , can it affect our liver? What about the creams we put on our bodies... Bengay and moisturizer? Asked a assistant gi dr and she said not to worry but I don't think she knows much about pbc.... Even had a dr come in to talk to me because I was throwing so many questions at her she couldn't answer but he hardly let me question him

butterflyEi profile image
butterflyEi in reply toYankeerose3

Hi Yankeerose3

I think I read somewhere a while back that colouring hair may be an environmental trigger. I think LiverNorth recently asked their members to look out for IMIDAZOLIUM which is being investigated in a study and to report if members find this in their products.

Without wishing to be disrespectful to the medical profession I believe where PBC is a rare/uncommon disease it is only the people who are specialising in PBC such as Professor David Jones in Newcastle who have a better understanding of PBC which, in my opinion, forums such as these are so important for sufferers to share their personal experiences. I am fortunate to have a really lovely hepatologist but his specialty is AIH but he never belittles my attempts to help myself. Unfortunately many of us have experienced the same sort of attitude as you have met.

best wishes

Yankeerose3 profile image
Yankeerose3 in reply tobutterflyEi

Thank you very much

in reply toYankeerose3

I think if you don’t do the single process dye; it is okay. I do Highlights & it doesn’t go to the roots or scalp, only the hair. & I only do this once a year.

I used this some years back, my hair started thinning in my forties nothing todo with PBC or urso. However I found I could see where I put it and it looked matted ( rather like iron fileings on a magnet if you remember that from school) I found it difficult to apply, so I never used it again. But you may have more success.

butterflyEi profile image
butterflyEi in reply to

Thank you Hidden I was not sure from looking at You Tube that it would be so easy to manage I think your comment it confirms my thoughts.

Ottley3 profile image
Ottley3

Hi - my cautionary tale is that I have always had thin hair and my hairdresser recommended a vitamin called nutradol. I took it for 18 months and was thrilled with the results. But then I was diagnosed with pbc and wewonder if it may have been triggered by the nutrafol. Ugh! One product that helps me optically with the scalp is bumble and bumble dry shampoo. It comes in colors. My hair medium brunette and I use the dark blonde one and it helps to cover my scalp - not cheap but makes me feel so much better . Google you will see it’s very popular for this purpose. Xox

butterflyEi profile image
butterflyEi in reply toOttley3

Hi Ottley3

thank you I will have a look. some have cautioned against the Toppik siting very good reasons especially for us with PBC so its good to have an alternative to look at.

best wishes

I've been told that a nightly application with Castor Oil, left on overnight, will regrow hair. That means I would have to wear a plastic cap to bed and wash my hair every morning and I'm too lazy for that! I imagine it would also depend on what caused the hair loss in the first place.

butterflyEi profile image
butterflyEi in reply to

thank you Hidden I cannot imagine going to bed in a plastic cap :-) but it conjours up a pretty mental picture! :-)

Jules-S profile image
Jules-S

My hair, is fine and thin too. A while back someone on here recommend a product called Nioxin. It’s a shampoo, conditioner and a serum. I’ve used it for about 18 months now and I’ve definitely seen the difference in the amount of hair in the bath when I’ve showered. You can get it from Amazon. It may seem a bit pricey but you only need a tiny bit and it lasts for ages. ❤️

butterflyEi profile image
butterflyEi

Hi Jules-S

I can see from your photo that you are fair haired. May I ask which system you use. I am looking at the Nioxin System 6 as I have my hair highlighted with blond streaks.

thank you.

Jules-S profile image
Jules-S in reply tobutterflyEi

Sorry for the late reply. I use 3. It’s for fine, colour treated hair.

butterflyEi profile image
butterflyEi in reply toJules-S

That's great - thank you for the information.

best wishes

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