Hair Falling Out: Hi everyone. I think my... - PBC Foundation

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Hair Falling Out

chynablue profile image
33 Replies

Hi everyone. I think my hair is falling out. There's a lot left on the brush and in the drain. More than I have ever seen before. I have thick, long hair so maybe it won't thin enough to be noticeable?

I've been on Ursodiol for one month, but I noticed some extra hair falling out before I started Ursodiol. The hair loss has been increasing over the last 4 weeks. Now there is so much lost, I cannot deny that something is wrong here.

I went through a very stressful phase several years ago, and my hair started falling out then, too. But once the stress was gone and I got healthy again, my hair did grow back. No one ever questioned my liver back then, but I did have decreased thyroid function at that time. My thyroid tests are currently normal.

Any advice? What has been your experience?

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chynablue profile image
chynablue
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33 Replies

Hello chynablue.

I'm not sure about urso and hair loss. For me being on urso now for over 5yrs I cannot say I've noticed a difference at all in my hair. I've never had thick hair anyway, described as fine and needle straight.

Not sure what symptons come from thyroid issues except that with one (under active?) there is weight gain but other than that don't know any more. I've not had any problem with thyroid check previously, only got this PBC with those antibodies (AMAs) and on one occasion since diagnosis low iron level (that the cause was then discovered, nothing to do with the PBC).

Not sure but since you have stated you've only been on urso could it possible be some sort of shock of the health checks to diagnosis and then the after-effects of diagnosis. I know the condition alopaecia is stress-related. Apparently my later father developed this following being in a road accident when I was little but he then recovered with regrowth.

chynablue profile image
chynablue in reply to

Thank you, Peridot. I am hoping that it is just stress and that my hair will grow back. Time will tell.

RFriedl profile image
RFriedl

Hello, I was diagnosed in Feb and noticed a lot of hair fall once I began Urso. But As you say it may well have been due to stress. I had long thick curly hair and ended up having to get my hair bobbed it went so thin. I am only 33 and was mortified this was happening. Fotunately the hair fall didn't last very long with me, and my hair seems to finally be getting back to normal. I would strongly recommend Alpecin Shampoo for men, it promotes hair growth. If you can get past the male scent, it's fantastic. Good luck.

barotacnuevo profile image
barotacnuevo in reply to RFriedl

Hello, I was diagnosed about 2 years ago with positive AMA. My symptoms are fatigue and terrible itch. Fatigue vanished and took Questran Light for the itch for about a year and it improved a lot, almost gone and my specialist told me to stop it. I'm still having little itch, very seldom but instead of taking Questran I prefer to have it.

I'm taking Urso 750 grams a day for about a year now. I'm also having this hair fall problem, my hair now is very thin, this is a very big worry for me. I don't know if this a side effect of any medicine. I'm only taking Urso, Statin and high blood tablet. I changed my shampoo and started using coconut oil for my hair. Still don't know what will be the result.

Seajeanie profile image
Seajeanie in reply to barotacnuevo

Nothing to do with hairless but I was told Statin drugs are bad for liver. You might check that out.

chynablue profile image
chynablue in reply to Seajeanie

Hi Seajeanie, I did not know that! My cholesterol is high and the doctor might put me on statins if it doesn't come down. I have a follow up appointment scheduled for Feb. Hopefully being on Ursodiol will make a difference. I have a healthy, low fat diet so I'm not sure what else I can do to avoid the statins. I guess I have to wait and see.

chynablue profile image
chynablue in reply to barotacnuevo

Hi barotacnuevo, I hope you find a cause for your hair thinning so that it can get better. I have tried coconut oil. It does moisturize my hair and scalp, but I don't think it has helped with the loss. At least, not yet.

chynablue profile image
chynablue in reply to RFriedl

I'm so glad that your hair has gone back to normal! I will look into the Alpecin shampoo. Thank you!

June9961 profile image
June9961

Hi, my hair is falling out also. I stopped dying it as I thought it was that but its still falling out. I have been on Urso for over 15 years now and my hair started falling out about 3 years ago. I'm nearly 61 so I suppose it could be my age. I have always had very thick hair. No one I have asked knows why.

chynablue profile image
chynablue in reply to June9961

Hi June, I was thinking about letting my hair color go natural, too. I found some natural hair dyes online like henna and some other brands. I haven't tried them yet. As it turns out, my friend's hairdresser is an expert in non-toxic hair color. I am going to see him for a consultation to see what he recommends.

June9961 profile image
June9961 in reply to chynablue

Hi chynablue, let me know how you get on because at the moment I could be mistaken for Santa or worse still a wicked witch with my white hair. Lol xx

chynablue profile image
chynablue in reply to June9961

Hahaha June! Here's his website: barryrollan.com/-non-toxic-... You probably are not near him, but there's a lot of good information on the products he uses. I found it interesting.

chynablue profile image
chynablue in reply to June9961

Hi June :) I wanted to let you know that I just got my hair done yesterday with the stylist that uses non-toxic dyes and it is wonderful. There's no smell, no burning on my scalp, and I think it looks very nice. I can't imagine going back to the smelly chemicals now! I think it does make a big difference. But... my hair is still shedding, though.

June9961 profile image
June9961 in reply to chynablue

Thanks for letting me know. My hair seems to have slowed down a little bit with the shedding. 😊 Wishing all the best for 2016 x

2bear profile image
2bear in reply to chynablue

Hi there. Can u let me know about the findings of the hair colorist specializing in non toxic hair color ? Thanx.

CathieG profile image
CathieG

Me too, posted the same question a few months ago, still the same but I forgot to ask the consultant yesterday!!

chynablue profile image
chynablue in reply to CathieG

Hi CathieG! I just read through the responses on your question from a few months ago. It seems like this is a common problem. I hope we can all find ways to improve it!

cazer profile image
cazer

Hi i have pbc when i was first ill my hair was dropping out also lost 50p piece size patches which grew back had a few on the go at same time.....it was before i started taking urso...but i had been pretty poorly as far as i know it was autoimmune ...alopecia which we are more prone to if we already have autoimmune condition.also i was very low on vits a e d and k which i think make you more likely to have problems.ask gp for prescribable vit n mineral tab....better than over counter ones as they have everthing in.i went from shiny long hair to short limp but had it cut shorter to let the new growth catch up....also it seem thicker when layered...i was sad to loose my hair but it has eventually grown back.i resigned myself to the fact its part of poor health.do try the vits though.cazer.x

chynablue profile image
chynablue in reply to cazer

Hi cazer! I'm glad your hair has grown back. Hopefully mine will too. I don't think there is much I can do about it right now, except to try and be as healthy as possible. :)

teddybear7 profile image
teddybear7

I'm of the opinion it's the condition not necessarily urso. My bodily hair is greatly reduced especially my eyebrows. I used to have really bushy ones not any more. I have bouts of clumps especially when I wash my hair but it fluctuates & my head hair still looks OK.

chynablue profile image
chynablue in reply to teddybear7

I think you might be right, teddybear. It might be more condition-related than the Urso.

butterflyEi profile image
butterflyEi

I have always had fine hair but with age and PBC I notice my hair is thinner than it used to be especially at the front so I side sweep it so that you cannot see the scalp. I do not think it is the Urso more likely the PBC and the stress that comes into our lives.

best wishes

chynablue profile image
chynablue in reply to butterflyEi

Thanks butterfly :)

liver-bird profile image
liver-bird

I noticed my hair was thinner and then my blood tests showed I was low in folic acid which I understand can cause hair loss. I think the reduced folic acid was caused by my compromised liver as I eat a varied diet. I took 2 month course of folic acid and my hairbrush is no longer full of my hair.

Underactive thyroid can also cause hair loss - I no longer have to pluck eyebrows or shave legs despite taking tnyroxine everyday.

Hope this helps

chynablue profile image
chynablue in reply to liver-bird

Hi liver-bird! I don't think I've ever had my folic acid levels checked. I was surprised when my Vitamin D levels came back very low, so maybe folic acid is low as well. I will ask my doctor when I see her next. Thank you!

dollydaydreams profile image
dollydaydreams

My hair got very bad and was falling out in handfuls before and after i started taking urso and I started to take Biotin 1000mg each day and a vitamin B complex, i also use Biotin shampoo and conditioner and my hair is thickening up again and growing back in places. :o) GP does no I am taking it and did not say not too but did say vit B complex was a waste of money but as they are only cheap in ASDA i will continue to take them.

chynablue profile image
chynablue in reply to dollydaydreams

Hi dollydaydreams! I have heard that biotin is good for hair. I think vitamin B complex is not a waste of money. Years ago, I took it because my energy was low and it made a big difference to me. It did make my urine turn bright yellow, so it appeared that most of it was going to waste, but I think my body was using what it needed from the supplement.

I stopped taking my vitamin supplements for now on doctor's orders. I'm only taking Ursodiol, blood pressure pill, and Vitamin D supplement prescribed by my doctor. I might add my multi vitamin back (it contains vitamin B complex) after my follow up appointment in Feb.

dollydaydreams profile image
dollydaydreams in reply to chynablue

I am still taking vitamin B complex as i think it is bound to do some good, i suppose they all have different opinions on things. I also take vit D with calcium all in one fizzy drink

.

Tracy181 profile image
Tracy181

This happened to me. When I first started the meds. I believe it was just my. Odyssey adjusting to the new stuff I was putting into my body. I am happy to report it has stopped now and I am back to normal. Good luck!

chynablue profile image
chynablue in reply to Tracy181

Hi Tracy! Hopefully, it will be the same for me. I have had a stressful time lately with liver problems, PBC diagnosis, starting new meds, and other stuff going on in my life. Perhaps all this will pass, my body will adjust, and things will go back to normal!

chynablue profile image
chynablue

Thank you everyone! This gives me hope :)

cazer profile image
cazer

Still try and get those vits and mins on prescriptoon if not buy a good one that gives yoi a r d and k i yjonk you will be surprised at resilts but will take a while to work through so have patience.x cazer

cazer profile image
cazer

Should say a e d and k !!!

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