I probably had PBC since about 2009, but, was formally diagnosed in 2016. I started noticing some hair loss around 2014-2015, when I had longer hair. Now, I have a very short cut and I even though I don't notice any actual shedding, I can clearly see thinning see-through areas, on the sides of my head. Besides PBC, I also have Hashimoto's Disease (Hypothyroidism). Hashimoto's I have for about 25 years, but, I didn't experience any hair loss until about 5-6 years ago. I wonder how common is hair loss that can be attributed specifically to PBC. My hair genetics is quite good, so, I doubt, I am loosing hair strictly for genetic reasons.
I'd appreciate your input. Thank you.
Written by
iagra
To view profiles and participate in discussions please or .
After i was on urso about a year and lfts were still very high i was losing alot of hair, that's when i went short again. I always had a good head out hair. It settled down and hair went back to normal. I have had same hairdresser for 18 years now so she knows my hair pretty well and knows straight away any changes. Fortunately i haven't had any more episodes, even when i started azathioprine which has it as a side affect.
Damn! As if we don't have enough troubles! My hair is not as thick as it used to be. I attribute this to the fact that I am getting old. Most of my thinning seems to be around the temples. But I do notice hair at the bottom of the shower more frequently these days and I find it a little settling.
Hi Pam, yeah, it's a bummer. I never thought I'd have a problem with thinning hair (good genetics from both parents), but, here I'm am... Let's hope it's not fast progressing for both of us. Hugs.
iagra i am with you on the hair thinning. It is a listed side effect of URSO...and I also am on Thyroid replacement and my TSH levels started roller coasting at the same time I started URSO... and Thyroid problems are a cause of thinning too..
so it's hard to figure out the cause but my thinning is getting worse..
I just changed levothyroxine Med levels and we will test to see my TSH level
and hopefully if we get meds tweaked better the thinning won't be as bad.
Hair loss here too although not hugely noticeable as I have thick hair anyway. I just notice loads of it in the shower/bath plug hole and on the bathroom floor. I swear my hair takes up half the contents in the vacuum cleaner too (have a dyson so can see through!)
This started happening in 2015 after I had my 3rd baby. My LFTs started being unstable after my 3rd baby too, so I am putting hair loss down to PBC.
I was diagnosed in September/October 2018 and after 15 months on urso, hair loss is still an issue. I had hoped that starting urso and LFTs being stable would nip the hair loss in the bud but it doesn’t look like it. Just hoping the hair loss doesn’t come to a point that it starts being noticeable!
I also have thining hair to the point that I was referred to a dermatologist. My next appointment is at the beginning of February when I hope to be given the results of the biopsy. In the meantime I have joined a facebook alopecia page where I am learning about wigs and toppers. Even many with hair use them as a fashion accessory.
The dermatologist has suggested (in advance of the biopsy results) that it could be another autoimmune disease (he gave it a very long name!) but also suggested one of the meds I take could be causing it but he did not mention the URSO as a problem. When I have seen him and have something concrete I will share.
I would love to know the name of the autoimmune condition, if you ever do remember it. I have very little hair on the top now, I don’t believe mine is due to medication or PBC, I started to loose it only on the top, in my mid 40,s think mines genetic or autoimmune.
I wish I’d started wearing a hair piece before it got so bad, then it wouldn’t be such a shock. If I put one on now it looks so false . I'am about to have a second consultation for one at a different studio, in hope, but they seem to make them so thick it looks so unnatural for me. Far to expensive to get one then not be able to wear it for some reason, I just started itching a little too , so that’s now another consideration. Do let’ us know how you get on, I hope your well.
Thank you Candy12 I am not doing too badly. It was called Lichen Planopilarius (I think but not sure of the spelling). It was the hepatologist that referred me to the dermatologist, my surgery would not have been interested had I complained to them. I have already invested in a wig (about £450.00) a bit expensive but my esteem was low and I needed to do something but as I learn more there are others than can be purchased from Amazon and elsewhere at more reasonable costs. Mine is synthetic but looks very real (so I have been told by my very honest granddaughter :-)) Human hair is very much more expensive. I think being fitted for the first time is a good idea and there are lots of videos on YouTube which I found very helpful. The downside is I find in certain circumstances I become very warm which makes me itch so will have to find a solution by summer!
Morning everyone....I too had an issue with hair loss. I am one of the people here who does not take URSO. My trigger was too much DHEA in my BioIdentical Hormones. As soon as that was cut, the hair loss slowed, the basically went to the normal. Remember, we humans shed about 100 strands daily. The added shock is if you are curly and do not wash frequently. Wow, it will look as though a whole head of hair just left when you do wash.
I also am on thyroid replacement and sometimes if I get a little high or a little low on my T4, I will notched hair shedding more. It's such a fine balance. Might be time for some labs.
Thank you for you input. With me, it is strange. I hardly shed any hair, maybe in single digits, just a few a day, or nothing at all. If I pull hard on hair, nothing comes out. Yet, the sides of my head are thinning, as if something is simply blocking the hair growth.
Yes, it was out into my troches. I was also reading about using black Janacian castor oil to assist thinning hair grow back in. Haven't tried it yet. I have regular cator oil I use on lashes and brows and it gas made a huge difference
My hair also had been falling out what felt like, by the handful. I always had thick hair and has really thinned. Biotin was suggested and may has helped some. It was suggested to see a skin Dr so I did but he didn't have any suggestions. Good luck
I also read about Biotin. I already it take it orally as a part of the Vitafusion multivitamins for women. But, I'll try shampoos as well. I'll start with Suave Biotin, as use other Suave shampoos and familiar with the brand. I don't have big hopes, but, what do I have to lose? Good luck to you too!
I have hair loss which doesn’t look good as I have fine hair to begin with. I found a clinic called Lucinda Ellery which looks good. It gives me reassurance that if my hair gets worse I can get something about it.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Hair
Hair color
Urso - Hair loss and weight gain...
Getting too thin 
