Hair loss with PBC anyone else?

[Michiganpbc]

Hair loss with PBC anyone else experience this ?

[Suekloo]

Yes, but the docs all say it's not PBC its thyroid. My thyroid was taken out over 20 years ago, yet my hair falling out started about three years ago.mmits so thin now, I used to have a thick head of hair. I am working with my dermatologist on this. He give me shots of steroids in the head, I also take a low dose diuretic, use rogaine men's strength solution to foam and use hair thickening shampoo and conditioner and will ask my doctors if I can take biotin. Last time I asked PRIMARY doc said no, but many patients I see use it. Dermatologist says it will tKe nine months before I really see a difference. But the shots are helping to reduce the amount of loss. Thank goodness we have a dog who sheds so I can d,are him for all the hair on the floor! 😜

[Michiganpbc in reply to Suekloo]

Thanks for the reply! My thyroid levels are normal and I take synthroid I have for 26 years so I don't think it is my thyroid had it checked recently also.....

[Suekloo in reply to Michiganpbc]

I don't believe it is my thyroid levels either! Just like I didn't believe my then doctor oh about 16 years ago who would say your level is "normal" when the normal range was 3-5 and I was always kept right around 5, well now the normal is 1-3 or 0-3.. Nor did I believe him when they pulled Synthroid and gave me a generic (which I thought yay maybe this will work better for me - ah nope) and he said same exact stuff no difference - maybe you need a therapist....I fought and fought and after a month of being the biggest bitch ever and gaining weight like mad the pharmacist changed it back and but you will have to pay more because insurance won't cover I said I will pay anything pleaseeeeeeee.....OMG it was $5 more a month then. Then a coworker says I hate to tell you but I switched to Generic form of the Armour stuff and I feel better. I said, listen to yourself please. YOU FEEL DIFFERENT! does not matter which way it goes......different. She gives me a blank stare and says oh yeah.. Faster forward to new doctor and she says you can just take the same does of the generic it does not work the same! You have to calculate a difference strength. So she is the first doctor in my life - except my kids pediatrician who was amazing - that I actually trust and still I will argue with her at times, but she listens and lets me try or explains exactly why what I am proposing will not work. It is so hard to get through all this stuff......

[teddybear7]

Yes I've lost a lot of my body hair. & Half my eye brows. It's nice to be less hairy on my legs. I have my eyebrows tinted. My head hair has been ok till recently. I've always had very thick hair. But unfortunately the last two months it's started thinning & I find it had to control. X

[Jackie71]

For couple of years after first diagnosis hair coming out was an issue but I put it down to the body not getting right nutrients. Since then though hair has stayed thinner than it was but I don't have the same issue. I too lost leg hair and under arms. Leg hair is now growing back which is annoying but underarms hasn't returned. Been diagnosed for almost 6 years now and during that time also lost the itch. But biopsy at start did have me pegged at stage 4 so although I have PBC they class that as borderline cirrhosis so there is no getting away from anything..

[dollydaydreams]

Yes and i am using rograine and it's growing back, i started first with the womens one and have now changed to the mens as i got it cheaper, I was also taking biotin but it didn't work for me that I noticed.

[Suekloo in reply to dollydaydreams]

Dolly daydreams

Glad to hear the Rogaine worked for you! Gives me hope and my dermatologist told me to use mens strength from the get go! But I bought foam and he said to use the solution as it is much easier to work with.

[dollydaydreams in reply to Suekloo]

I use the foam, I find it dry's quicker as yo can massage it in to almost dry, the mens dries quicker than the woman's lot i had, both are foam and the same strength 5% I am now at 22 weeks.

[Michiganpbc]

Thanks everyone for the comments this is the best place for real life experiences! Gives me lots to ponder.....

[kgohn]

This is my biggest PBC complaint. I was part of a trial at a big university here in the US. I brought the hair loss thinning up to the hepatologist. He immediately said--"that you can chalk up to the PBC." I was trying to blame it on URSO. He said he sees it in many PBC patients and others with liver disease. So, I think it is the PBC--the liver is so important in our supply of vitamins, minerals, etc....

[Michiganpbc in reply to kgohn]

Thanks I haven't seen my doctor since it started so good to hear it's not something new and could be PBC .....

[liver-bird]

I was losing hair but then a blood test showed I was low in folic acid. A two month supplement put me right. I have never been low in anything before so I think the PBC might have caused this. Diane

[Michiganpbc in reply to liver-bird]

Thanks, something to ask my doctor when I see her next....