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Hair thinning on tamoxifen - experiences, suggestions?

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I'm experiencing a lot of hair loss on tamoxifen. No noticeable bald spots or anything. But an alarming amount of hair falls out every day and my previously thick hair is noticeably thinner (at least to me). Any suggestions?

One thing I'm planning on trying is Viviscal. Anyone have any luck with it?

Comments

  • chisandy
    chisandy Member Posts: 11,407
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    Are you taking Biotin? That’s been helping slow my postmenopausal and now AI hair thinning. Also make sure you are eating sufficient protein—keratin, which is what hair is made of, is a protein and depends on adequate dietary protein intake. Hair follicle cells have cycles—growth, resting, loss (telogen). Usually, they’re staggered so that nothing changed. But anything that messes with the cycles—especially hormonal upsets (menopause, aging, pregnancy, or estrogen suppression) can cause a greater proportion of the cells to go into telogen status that loss increases (telogenic effluvium). But in a few months you might notice a growth spurt. Tamoxifen doesn’t usually do this because it doesn’t alter the nature of or reduce the amount of estrogen in your body—rather, it blocks tumor cells’ estrogen-receptors’ access to it. Are you anywhere near peri-menopausal age? Hair naturally thins as your estrogen production decreases, and it decreases the closer you get to menopause.

    Meanwhile, be gentle with your hair—don’t do anything that could pull it out like tight ponytails or pulling while heat-styling or winding on rollers. If you get salon treatments or color, tell your stylist you are concerned about thinning.

  • mellee
    mellee Member Posts: 220
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    I haven't tried biotin yet. However, biotin is part of the Viviscal formula, which I'm just starting. So hopefully that will help.

    Thanks for the protein tip! I'm a vegetarian, so I might need to be a little more vigilant about my intake.

    No, I'm not near peri-menopausal age, and the hair loss directly coincided with me starting tamoxifen (it became quite noticeable about 2 months in). So I'm virtually certain it's definitely related to the tamoxifen (nothing else of note has changed in my diet, routine, treatment).

  • mellee
    mellee Member Posts: 220
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    Doing more digging and found an interesting 2016 article on the management of hair loss associated with endocrine therapy in patients with breast cancer. The authors cite research showing that 25% of patients receiving endocrine therapy experience hair loss or thinning:

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC48648...

    A few reasons they cite as causes of hair loss/thinning from tamoxifen and AIs:

    1) rebound increased levels of androgen alongside the diminished levels of estrogen decelerate and inhibit the proliferation of the hair follicles in the skin.

    2) Reduced estrogenic effects encourages the hair follicles to go into the resting phase

    Interestingly, I've also found that hair loss can be caused by too much estrogen, as well as too little. Which gets super confusing with tamoxifen, because apparently, although tamoxifen is considered an anti-estrogen against breast cancer, it has known estrogenic side effects. I found at least one study that indicates that long-term administration of tamoxifen may significantly increase circulating estrogen levels in women with breast cancer.

    Honestly, it makes my head spin. So confusing!

  • macb04
    macb04 Member Posts: 756
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    Hi,

    I experienced the same thinning of my initally really thick hair a few months into using tamoxifen. That took months to go away after I stopped use of the tamoxifen. I also read that the androgenic (male hormone )effects become more pronounced which having estrogen suppressed with tamoxifen.

    Have you heard of Ketoconazole (Nizoral shampoo) and its use for male pattern baldness? Similar situation, hormonally, as DHT is the thing that impacts hair follicle growth. I used the Nizoral 3 times per week for a fewmonths and it seemed to help.

    Hope that helps too.


    Ketoconazole, (Nizoral) shampoo, is also known to inhibit 5AR, the enzyme which converts testosterone to DHT. Preliminary research suggests that ketoconazole shampoo may be beneficial in men suffering from androgenic alopecia.

  • mellee
    mellee Member Posts: 220
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    Thanks for the Nizoral tip! My husband actually uses that shampoo already, so I'll swipe some and see if it works for me.

  • Ileepak
    Ileepak Member Posts: 21
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    I disagree about Tamoxifin. I have been living this nightmare that did not start until I started taking Tamoxifin. . . about 3 to 4 months into it. I have been so frustrated by people saying that Tamoxifin does not cause hair loss, and more frustrated that the doctors just gloss over this "horrible" side effect . . . like it is no big deal . . . it is just hair thinning . . . this is not "hair thinning . . . this is hair loss! The dermatologist I went to see in Sloan was of no help whatsoever, except to want me for part of his study.

    When I started, I didn't say a word . . . . I took the tamoxifin . . . dealt with the pains in my legs, weight gain, and horrible constipation . . . but when my hair started falling out in droves . . . . I lost it. It is one thing to lose your hair from chemo and have it come back but to not know where and when this will end with hormonal therapy and not know if I will have a hair left in my head . . . . I'll take my chances but I am never taking Tamoxifin again. . . . . I am still losing my hair and I haven't taken Tamoxifin since September 2019. I do not have hair loss in my family . . . . this is not a pre-menopause thing . . . this is far greater than "thinning that comes from menopause" . . . . I have had all kinds of blood work . . . . it is not my thyroid . . . not my iron . . . etc. etc. . . . I take biotin and eat heatlhy. I get so frustrated when people tell me it is not the Tamoxifin . . . . because I know it was the direct cause . . . and still is the cause . . . . I am constantly doing research on this . . . . I would love to hear from anyone who has experienced what I am experiencing.

  • BCat40
    BCat40 Member Posts: 121
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    Hi lleepak, so sorry you are going through this frustrating experience. Both estrogens and androgens play a big part in hair growth so it makes sense that the Tamoxifen could have caused this problem for you by interfering with estrogen receptors.

    https://www.ncbi.nlm.nih.gov/pubmed/16877675

    I am wondering if you might benefit from seeing an endocrinologist and having your hormone levels tested to see where they stand now that you have discontinued the meds.

    Best of luck to you.



  • labmum
    labmum Member Posts: 1
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    THANK YOU. I agree with everything you wrote. I switched from Arimidex to Tamoxifen in November mainly due to bone loss. I did have hair loss and thinning as well...BUT now after 8 months on Tamoxifen I am losing hair in clumps. I agree that it seems to be one of the most dismissed side effects of adjuvant hormonal therapy. I'm distressed about the thought of quitting altogether but not sure I can deal with this much longer. I feel like I should see a DERM to rule out other possible causes, but don't feel hopeful about that. I read the post from lleepak and feel like it is the exact experience I have, why isn't this taken more seriously?

  • mellee
    mellee Member Posts: 220
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    I lost a lot of hair on tamoxifen, and it's a known side effect (hair thinning is due to hair loss!). I don't get why it's brushed off.

    I did a lot of research and also got advice from a dermatologist and my sister who is a plastic surgeon. There are a few things that helped:

    1) Viviscal - pricey but it absolutely works. My hair loss really slowed down after I started taking it.

    2) Biotin on its own doesn't have a lot of evidence to back up its usefulness, but I found a recommendation from dermatologists at Cleveland Clinic to take the following biotin/b-vitamin combo:

    • 3 milligrams (3000 mcg) biotin
    • 30 milligrams zinc
    • 200 milligrams vitamin C
    • <1 milligram folic acid

    The brand I found that has this combo is Nature's Way Biotin Forte 3mg with Zinc.

    Although I haven't used it myself, Rogaine is also recommended. It's a foam you put on your scalp every day. There's a formula for women (pretty sure the only thing different from the men's is the packaging). You can buy it over the counter and it's affordable.

  • moderators
    moderators Posts: 8,285
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    Ileepak, welcome to our community, and thanks for sharing your story. Tamoxifen has indeed been found to cause hair thinning. You've received great answers from great members Medicating


  • Ileepak
    Ileepak Member Posts: 21
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    Thank you for your reply!! I appreciate your information. I am thinking that I had hormone levels checked at my gynecologist . . . I have been to so many doctors. I never thought about an endocrinologist. Thank you . . . I will look into that!

  • Ileepak
    Ileepak Member Posts: 21
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    And thank you melee . . . yes, the term "hair thinning" makes it sound like no big deal . . . it is HAIR loss that the doctors don't know much about and if you notice it is not one of the first adverse reactions that pops up when you research it! They try to avoid it . . . . I think that is so wrong . . . to gloss over it when it is such a terrible side effect that the doctors don't talk about!!! If they had told me or warned me, I never would have started taking it. Not knowing if and when I may loose all my hair???? And if you do research, with years of hormonal therapy, there is no regrowth . . . scary . . . they don't tell you that!!

    I have tried everything you mentioned . . . even with the minoxidil . . . my hair is still falling out? My gynecologist said that even with hair growth , . . . my hair will never be what it was . . . so I have accepted that . . . I do not accept going bald and never having regrowth.

  • bcincolorado
    bcincolorado Member Posts: 4,710
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    I had fine hair to start with an Tamoxifen made it even thinner. I found that Pantene thickening shampoo worked wonders to help me. No prescription necessary. It took a bottle to really make a difference but the benefit of meds to cancer was more important to me than my head.

  • Truffles1214
    Truffles1214 Member Posts: 1
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    mellee, I have a couple questions regarding your experience with Viviscal. First, did you notice any weight gain? I’ve heard that is a side effect. Second, did you notice any hair regrowth? I’d love for my thinning to stop, but some regrowth in my hardest hit areas (temples) would be wonderful! Thanks

  • mellee
    mellee Member Posts: 220
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    I really can't say with weight gain, because I was having trouble with weight gain, but my MO, PCP, and psychiatrist have now narrowed it down to the antidepressant I was taking. I don't think the Viviscal contributed, but I can't totally rule it out.

    It's also hard for me to say as far as regrowth. Before I started losing so much hair it was quite thick even though my hair is fine. So I never saw receding hair lines, bald patches, etc. I just could tell when styling it, putting it in a ponytail, etc, that I had much less hair than before. When I started taking the Viviscal the hair loss slowed down dramatically. My guess is that it would help with areas where you seen visible thinning, but I can't say for sure. Rogaine might work better for that: https://www.rogaine.com/products/womens-hair-regrowth-solutions/womens-foam/WRUFXX.html


  • misskb
    misskb Member Posts: 3
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    Hello! I just wanted to post to say that I lost a lot of hair when I started taking tamoxifen. The shedding was horrendous and it was heartbreaking. I started Rogaine and it has worked incredibly well for me. I'd really encourage you to try it if you are experiencing hair loss with tamoxifen. It does take some time to work so you need to give it 3-6 months. It was so bad, at one point I actually started wearing a hair piece. This made me feel A LOT better - I'd encourage anyone down this route too. There are some great hair solutions out there - I went with a topper, and when my hair started coming back in, extensions. I think this reduced the stress which could only help the hair situation.