hairloss after hormonal therapy

conley05

I'm a 6 yr. BC survivor and I'm having severe hair loss.  It came it great after chemo, but the past year I have lost 60%.  I'm beside myself.  I had taken the hormone inhibitors for about 1 1/2 yrs., but then I refused them because of side effects.  I didn't know they would destroy my bones and cause me to lose my hair.  Doctors say it's probably due to lack of estrogen.  I had estrogen receptor + BC, so I can't take estrogen.  I'm realizing how much a lack of estogen has aged me.  I really don't want to go bald.  Are there any answers?   At first, my MD said it was hypothyroidism.  At first, the thyroid medicine seemed to stop the hair loss.  Recently, he said the thyroid range is great, so the thyroid is not causing hairloss. So, I just recently went to an endocrinologist who seemed to be no help.   He said it was the lack of estrogen and no doctor would give me that.  Then he said I should have an ultra sound on the thyroid (which is in a good range) and use the name brand Synthroid.  ??!!!  Do these doctors just want to look like they're doing something?  I don't see where the generic synthyroid causes hairloss.  Besides I had the hl before synthyroid.  The dermatolgist said my DHEA was too high.  When the female hormone is low , the male hormone raises (DHEA) causing male pattern baldness.  They put me on spirolactin 50 mg.  I hope this helps.  I won't know for 6 months, at which point, I'll be bald.   I shouldn't complain; I'm alive.  Does anyone have any advice for hair loss?

sweetbean

Conley,

I'm really sorry this is happening to you?  Have you tried seeing a naturopath?  They sometimes look at things from different angles that conventional doctors.   

pj12

Conley,

 It seems to me the hair loss is just adding insult to injury. I did not have chemo so no way to blame hair loss on that. I did take Arimidex for about 18 months post lumpectomy and my hair came out like crazy. I could be standing in the kitchen cooking and would feel hairs fall out and cascade down my arms! I didn't have dust bunnies in my bathroom, I had hair bunnies in the corners and along the baseboard. The hairs were not breaking off...     you could see the whole root intact on the fallen hair!  I stopped AIs because of complicating factors with a neurologial condition I have. I switched to Tamoxifen about two years ago. I would say the hair loss slowed, maybe stopped, but my hair is no where nearly as thick as it used to be. I just found a photo of my about ten years ago. Wow, my hair was so thick! My hair is thinnest in the classic Male Balding pattern... forehead and temples are thin. Also my hair just does not grow as fast as it used to. I do not have any thyroid problems or other medical conditions to explain the hair loss. I can only attribute it to the loss of estrogen. Since tamoxifen works in a different way than an AI things have gotten better. 

But I am alive and well. I would have stayed on an AI even with the hair loss had it not been for the neurologic problems. But I am hoping my hair with thicken up with time. A friend of mine uses Biotine (?) and thinks it helps her thin hair. I tend to wear a cute hat a lot of the time. But if I make the effort to style my hair and use some styling products it looks decent. I'm just lazy and Florida humidty and heat and rain don't make for good looking hair anyway.

You are not alone! 

dltnhm

I have wondered how hair cycle patterns play out after chemo. After reviewing the hair growth cycle on several sites, I learned that hair has thee phases and one of those is the growth cycle. The growth cycle can last from 2-6 years. About 85% of hair is in this growth cycle at any one time. But different points of the growth cycle So that 15% accounts for the normal hair we 'lose' and see when brushing our hair, showering, etc. those blonde hairs on our black sweaters or those black hairs on our white shirts .. And every color in between.



What I had been wondering as my hair is growing back ... and I wonder as I read your post ... Is it possible to have dramatic hair loss 2-6 years out from chemo because the bulk of our hair is synched to the same cycle? Could it be that women think they are losing their hair due to early menopause or hormone therapy and are actually just experiencing a huge end of growth phase?



I do realize that some women who have never had BC and never had chemo or hormone therapy like Tamoxifen experience thinning hair and hair loss that coincides with menopause. But I am curious.

bevin

HI there, Gosh do I sympathise with you and know what you're going through. My DHEA and testosterone were too high too. I also had male pattern baldness coming at the crown of my head.  My endocronologist put me on Spironolactone, 100Mg 2x day and dexemethasone, .25 mcg per day. This greatly helped and stopped my hair loss.  It's took about 6 months for the meds to bring my levels into the normal female range and after 7 years on these meds, I have reduced my levels; I am down to 50 mg spironlactone and the dexamethasone is the same amount. My endocronologist explained it was an adrenal gland problem causing this issue with me.  Ask about the dexamethasone and ask if they'll add that to your tx.

Good luck, I hope you have as good success as I did.  Feel free to PM me if you have any specific questions.

Bevin

conley05

Thank you for your replies.  We learn from each other's experiences. 

Thanks Sweetbeans, I have considered a naturopath.  I'm taking a crazy amount of supplements (24) and superfoods to help rebuild, protect the cells, and hopefully stop the hairloss.  I'm looking into phytoestrogens.

Thanks pj12!  My hairloss sounds like yours.  I feel it falling as I walk.  I had blamed it and boneloss on the arimidex. Yes, I take biotin too.  

Thanks dltnhm.  That is interesting about your thoughts on the growth cycle.  You may have something there!  Thanks for giving me hope. When I was going through treatment for BC, the hair loss was the very worst part.  But, I felt sure that it would come back.  Now, it's the fear of the unknown.

Thanks Bevin! For sharing with me what worked for you.  I went to a Dermatologist a few weeks ago.  He was the one that found the high DHEA and put me on spirolactin 50 mg. 1x a day.  I called him yesterday and gave my hair count loss of over 200 per day (that I actually see) and he raised it to 50mg. 2x per day.   Maybe I should ask about 100mg.  I hate to take any drugs, but I really want my hair back.  Did your hair come back to normal?  I have only been taking the 50mg spiro for 2 weeks, but it feels like new hair coming in .  You know, it feels like a short burr (bristley) all over.   I'll check into the other drug. 

Thank you so much!  Sandy

Pessa

I have the same problem.  After chemo my hair grew back but then I started anastrazole and it is falling out on the top (male patterned baldness).  My doc suggested biotin but I haven't tried it yet.  It is definately from the lack of estrogen.  I found a powder made to cover balding areas and it works well for now.  If this continues, however, it won't be effective at some point in the future.  I was thinking that I may end up wearing wigs again!

joanieM

I have tremendous amount hairloss too!  I attributed it to my hepactomy and possible digestive problems due to bile duct blockages.  I have seen at least 5 doctors and they all tell me its my age.  I'm 56, no one in the history of my family has had hairloss.  I have tried Amino Acids and biotine, tried illiminating meds, used vinger rinses and drank it! Now Im using Zinc, B-6, B-12, Folic acid, biotine, with no results.

The hair started falling out about 6mos after my hepactomy 2011.  I have convinced myself it will never come back.  Its so thin and fly away, it doesn't hold curl, I just want to cry. I have lost 2/3 of my hair and it's still falling out. Unfortunately I can't take estrogen due to my Triple neg BC.

Pessa

I have sent away for a wig catalogue.  I think it may come to that for me in the forseeable future.............

conley05

Hi Pessa,

  I was looking on wigs.com; they have a large variety.  You can get a color ring to make sure you order the right color.  Their prices looked good too.

I have been taking the spirolactin 50mg 2x a day for about a month a half , generic rogaine 5%, and  about 22 different supplements.  This past week, it seems to be slowing down.  It's too soon to tell, but when you're counting a 100 hairs in the sink- and then there's only 50, you start hoping.

  I may not need the wig.  I have found a large lump in the breast.  I don't think there's much hope when BC returns.  I just don't know.  I think it's pretty advanced.  I always have  this odd pain in my back and I have trouble sleeping.  I worried it was a tumor, but my oncologist kept telling me it was probably a pinched nerve.  So, I did not have it checked out when I should've.

Pessa

Conley:  I hope the lump and the symptoms turn out to be benign.  Since I started anastrazole I have had problems sleeping.  That is one of the known side effects of the drug.  I have a good friend who developed a new cancer in the same breast.  They did a mastectomy and more chemo and she has been fine for years! Wishing you well.  Let me know how you are doing.

Thanks for the info about the website.

conley05

It worked! Hair loss stopped and is growing back!!  I just wanted to post a follow up. After taking the spirolactin (50 mg.2x daily) and using male Rogaine for a few weeks, I could feel the hair growing back! ( When you rub your scalp, it sorta feels like a  short stiff burr at the roots.)  Within about 6 weeks, the hair stopped falling out.  After 2 months, I noticed increased facial hair so I stopped using the Rogaine. It's almost 6 months now, and I'm still not losing any hair!  I think the spirolactin balanced those hormones.

Pessa

thanks for the update