Question....

debrajo
debrajo Member Posts: 1,095 Member

I am over six years out of all treatment.  With Taxol/Carbo I lost all my hair.  Grew back to a respectable length in six months.  Flash forward five years, Im losing all my hair again.  Anyone ever hear of this?  What do I do?  Dr.s can't find a thing wrong with me...no "pattern baldness" on either side of my families.  Thanks, Debrajo

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Comments

  • DrienneB
    DrienneB Member Posts: 182
    Hair Loss

    Hi Debra,

    I am sorry to read this. Is it coming out as fast as it did when you got treatment, or in a similar way?

    -j

  • debrajo
    debrajo Member Posts: 1,095 Member
    DrienneB said:

    Hair Loss

    Hi Debra,

    I am sorry to read this. Is it coming out as fast as it did when you got treatment, or in a similar way?

    -j

    hair

    I have a brush full every morning.  There are bald places on my scalp that are as big as my hand.  I literly do not have  enough hair to cover up the places.  It is coming out slower than when I got treatment....over several months instead of a couple of weeks with treatment.   i went to a hair dresser and she said there was nothing she could do.  She suggested a wig or wiglet, but was hoping for something more restoritive. Does anyone know if the vitamin supplement,"Hair, Skin, and Nails" works?  Thanks for replying!

  • Tethys41
    Tethys41 Member Posts: 1,382 Member
    edited December 2016 #4
    Hair

    Do you have hypothyroidism?  Do you have other symtoms of it?:

    • Fatigue and sluggishness
    • Increased sensitivity to cold
    • Constipation
    • Pale, dry skin
    • A puffy face
    • Brittle nails
    • Hair loss
    • Enlargement of the tongue
    • Unexplained weight gain
    • Muscle aches, tenderness and stiffness
    • Joint pain and stiffness
    • Muscle weakness
    • Excessive or prolonged menstrual bleeding (menorrhagia)
    • Depression
    • Memory lapses
    • Missing the outside 2/3 of your eyebrows

    I know many of us have autoimmune conditions.  I am wondering if this is Hashimoto's.  That would not show up on regular thyroid tests.

     

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,814 Member
    Sorry this is happening to

    Sorry this is happening to you Debrajo. :-(

    I am only one year out from chemo so I don't have long term knowledge. I will tell you that I continue to lose my lashes off and on. Not all at once but definitely gaps. This happens often....

    I hope this resolves itself for you.

    Love and Hugs,

    Cindi

  • Nellasing
    Nellasing Member Posts: 528 Member
    You might research

    castor oil and rosemary essential oil- those are supposed to be helpful..... I hope someone has a good answer for you  (((HUGS)))

  • derMaus
    derMaus Member Posts: 558 Member
    edited January 2017 #7
    debrajo said:

    hair

    I have a brush full every morning.  There are bald places on my scalp that are as big as my hand.  I literly do not have  enough hair to cover up the places.  It is coming out slower than when I got treatment....over several months instead of a couple of weeks with treatment.   i went to a hair dresser and she said there was nothing she could do.  She suggested a wig or wiglet, but was hoping for something more restoritive. Does anyone know if the vitamin supplement,"Hair, Skin, and Nails" works?  Thanks for replying!

    Thyroid?

    Have you had your thyroid checked? I started losing hair a few years ago and nobody could figure out why; not my doctor, not a dermatologist. Turned out my thyoid was 3.8 - in the "normal" range per the lab range of 0.4 to 4.0 - but in actuality was way too high for me. I worked with my doc to increase my dosage of Synthoid, and am now at 100 mg which keeps my levels at +/- 1.0. I don't experience the coldness, lethargy and hair loss to the extent that I once did. I still have thinner patches from that experience, and I have to keep blobbing minoxidil on my hairline every night to keep it from receeding any more, but the overall downhill slide was arrested. Hope this information is useful to you! 

  • Editgrl
    Editgrl Member Posts: 903 Member
    edited January 2017 #8

    Sorry this is happening to

    Sorry this is happening to you Debrajo. :-(

    I am only one year out from chemo so I don't have long term knowledge. I will tell you that I continue to lose my lashes off and on. Not all at once but definitely gaps. This happens often....

    I hope this resolves itself for you.

    Love and Hugs,

    Cindi

    Eyelashes

    Cindi, I've noticed this, too.  My lashes came back luxuriously thick after chemo ended, as did the hair on my head, but now, my lashes seem to do the same thing...  all of a sudden I'll notice they are extremely thin, then they get thicker, then thin again.  And my hair that grew in wavy has straightened out as well.

  • debrajo
    debrajo Member Posts: 1,095 Member
    derMaus said:

    Thyroid?

    Have you had your thyroid checked? I started losing hair a few years ago and nobody could figure out why; not my doctor, not a dermatologist. Turned out my thyoid was 3.8 - in the "normal" range per the lab range of 0.4 to 4.0 - but in actuality was way too high for me. I worked with my doc to increase my dosage of Synthoid, and am now at 100 mg which keeps my levels at +/- 1.0. I don't experience the coldness, lethargy and hair loss to the extent that I once did. I still have thinner patches from that experience, and I have to keep blobbing minoxidil on my hairline every night to keep it from receeding any more, but the overall downhill slide was arrested. Hope this information is useful to you! 

    Hair

    I do have thyroid problems, since I was a child.  Dr. said all is well, but I don't think so.  I am cold a lot, I had more energy after treatments were all done, now the thining hair.  All this points to thyroid to me!  I keep having low grade fevers.  White and red blood cells are ok.  I go back to my GP January 5th. so think it's time for a more indepth thyroid scan panel!  Think you!

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,814 Member
    edited January 2017 #10
    Editgrl said:

    Eyelashes

    Cindi, I've noticed this, too.  My lashes came back luxuriously thick after chemo ended, as did the hair on my head, but now, my lashes seem to do the same thing...  all of a sudden I'll notice they are extremely thin, then they get thicker, then thin again.  And my hair that grew in wavy has straightened out as well.

    Thanks for letting me know

    Thanks for letting me know that Chris! Always seems to be an adventure when I put mascara on.

    I got my first hair cut a couple of days before Christmas. Pretty much lost all my curls with that cut.  And, I got it colored. Back to pre-chemo days. Makes me feel more like me again.

    I hope everyone has a very special start to 2017.

    Love and Hugs,

    Cindi

     

  • debrajo
    debrajo Member Posts: 1,095 Member
    edited January 2017 #11
    Editgrl said:

    Eyelashes

    Cindi, I've noticed this, too.  My lashes came back luxuriously thick after chemo ended, as did the hair on my head, but now, my lashes seem to do the same thing...  all of a sudden I'll notice they are extremely thin, then they get thicker, then thin again.  And my hair that grew in wavy has straightened out as well.

    hair

    I lost all my lashes and brows during chemo...they never came back.  I draw on the brows and just leave my lashes, what few didnt fall out, and leave my reading glasses on.  Perched on the end of my nose, at least I look somewhat studious!

  • debrajo
    debrajo Member Posts: 1,095 Member
    Nellasing said:

    You might research

    castor oil and rosemary essential oil- those are supposed to be helpful..... I hope someone has a good answer for you  (((HUGS)))

    Hair

    My sister in law just bought me some Doterra essential oil and some of their Hair,Skin, and Nails vitamins today.  Going to try them for a month and see where I am.  Thanks!

  • debrajo
    debrajo Member Posts: 1,095 Member

    Thanks for letting me know

    Thanks for letting me know that Chris! Always seems to be an adventure when I put mascara on.

    I got my first hair cut a couple of days before Christmas. Pretty much lost all my curls with that cut.  And, I got it colored. Back to pre-chemo days. Makes me feel more like me again.

    I hope everyone has a very special start to 2017.

    Love and Hugs,

    Cindi

     

    I did have mine colored and

    I did have mine colored and it did help(at least my self-esteem!)  I've heard so much against coloring, but couldn't stand it!  My neighbor said I looked ten years younger!  I'll take it!

  • debrajo
    debrajo Member Posts: 1,095 Member

    Sorry this is happening to

    Sorry this is happening to you Debrajo. :-(

    I am only one year out from chemo so I don't have long term knowledge. I will tell you that I continue to lose my lashes off and on. Not all at once but definitely gaps. This happens often....

    I hope this resolves itself for you.

    Love and Hugs,

    Cindi

    Thanks Cindi, I hope it does

    Thanks Cindi, I hope it does resolve, but it's still a small price to pay for being alive!

  • derMaus
    derMaus Member Posts: 558 Member
    debrajo said:

    Hair

    I do have thyroid problems, since I was a child.  Dr. said all is well, but I don't think so.  I am cold a lot, I had more energy after treatments were all done, now the thining hair.  All this points to thyroid to me!  I keep having low grade fevers.  White and red blood cells are ok.  I go back to my GP January 5th. so think it's time for a more indepth thyroid scan panel!  Think you!

    Make them work with you to

    Make them work with you to get your TSH down to a level that works for you. Don't let them shuffle you off with the standard lab ranges. I take Synthroid, which is a bioidentical to our own thyroid hormones. In my experience tinkering around with the dosages took several months, but I got much better results once *I* took control of the situation vs. letting my GP get away with telling me I'm within range and therefore OK. The dermatologist I saw is who actually mentioned the thyroid-hair loss linkage, and he turned out to be correct.

  • Tethys41
    Tethys41 Member Posts: 1,382 Member
    edited January 2017 #16
    Hashimoto's

    I am guessing you have Hashimoto's.  It is autoimmunity of the thyroid and it's very common among people who have had the chemo treatment we have.  The only definitive way to diagnose it is to run a TPO (thyroid antibody) test.  Many conventional doctors don't recognize this test and may not run it, since they don't understand what it is showing.  Most doctors would treat Hashimoto's the same way that they treat any other hypothyroidism, but there is much more to it because it is an autoimmune disease and you have to do certain things to keep your body from continuting to attack the gland.  An excellent reference is the book "Why Do I Still Have Thyroid Symptoms If My Lab Tests Are Normal?" by Dr. Datis Kharrazian.  

  • derMaus
    derMaus Member Posts: 558 Member
    Tethys41 said:

    Hashimoto's

    I am guessing you have Hashimoto's.  It is autoimmunity of the thyroid and it's very common among people who have had the chemo treatment we have.  The only definitive way to diagnose it is to run a TPO (thyroid antibody) test.  Many conventional doctors don't recognize this test and may not run it, since they don't understand what it is showing.  Most doctors would treat Hashimoto's the same way that they treat any other hypothyroidism, but there is much more to it because it is an autoimmune disease and you have to do certain things to keep your body from continuting to attack the gland.  An excellent reference is the book "Why Do I Still Have Thyroid Symptoms If My Lab Tests Are Normal?" by Dr. Datis Kharrazian.  

    That is super helpful

    That is super helpful information to have, thank you for posting. I'm used to my body's 'normal' thyroid problems, not potential new ones brought about by chemo!

  • Charissa
    Charissa Member Posts: 129 Member
    edited January 2017 #18
    Temporary Alternative

    Although, I didn't have to undergo chemotherapy, my hair did thin immensely three months after surgery. Sally's Beauty Supply sells hair extensions that clip in with small, flat barrettes. I have to wear them now and hoping my hair will someday be thick again. In the meantime, it is a quick, easy fix and makes me feel better about myself. They sell them in a package that would cover about four layers. However, you'd be surprised with how much hair is added with just clipping in one row/layer (two extensions). It is amazing!  It's real hair, which can be cut and colored.

    As far as supplements, I have always taken Biotin, which seems to help with my nails. Therefore, I'm assuming it also helps with my hair - when nothing else interferes (medications, physical imbalance, trauma, etc.). ;)

    My mom has expereicned this problem (occasional bald spots).  She sees a dermatologist who injects cortisone in the bald spots, which in turn causes the hair to grow back. Unfortunately, I do not know what it is called or the medical diagnosis. She explained it as her immune system attacking itself.  If your tests come back okay for your thyroid and you would like me to inquire more about my mother's condition, I will be happy to do so.

    Keep that positive, fun, loving personality that radiates through your words and posts.

    HUGS!!!

  • debrajo
    debrajo Member Posts: 1,095 Member
    edited January 2017 #19
    Tethys41 said:

    Hashimoto's

    I am guessing you have Hashimoto's.  It is autoimmunity of the thyroid and it's very common among people who have had the chemo treatment we have.  The only definitive way to diagnose it is to run a TPO (thyroid antibody) test.  Many conventional doctors don't recognize this test and may not run it, since they don't understand what it is showing.  Most doctors would treat Hashimoto's the same way that they treat any other hypothyroidism, but there is much more to it because it is an autoimmune disease and you have to do certain things to keep your body from continuting to attack the gland.  An excellent reference is the book "Why Do I Still Have Thyroid Symptoms If My Lab Tests Are Normal?" by Dr. Datis Kharrazian.  

    Thanks Kate!

    Hashimoto's I have heard of TPO I have not.  Something has to be wrong, not just not the hair, but the fevers are really debilitating!  I have also  have had six major falls since Sept.  I'm on crutches now, with two brused ribs, a severly twisted ankle and a bruised upper arm and knee>  maybe related?  I going ove to read tne artical you sent.  Thanks so much!

  • pinky104
    pinky104 Member Posts: 574 Member
    Losing hair

    I agree with some of the other women on here who say it could be your thyroid.  An overdose of your synthroid can also cause this.  I had a co-worker who had something called alopecia areata, and you might want to google this term and see what the comments are about that.  One website I found said that it's more likely in people who already have one autoimmune disease (and yours would be thyroid disease).  That site also said it can happen because of allergies.  It said that people who have alopecia areata tend to have divots or roughness in their fingernails.  I know that the older we get, the thinner our hair gets.  A lot of mine fell out at menopause, and a lot more fell out around the time I probably came down with cancer.  Then I lost it all with chemo.  I've read that the older we get, the wider our parts in our hair get, and that'swhat's happening to me now. We find ourselves in a lot of (not so) hairy situations, ha, ha! 

  • Peggylee
    Peggylee Member Posts: 13
    edited February 2017 #21
    Hair, skin and nails supplements

    I tried the hair etc supplements and developed facial hair...no thanks.