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Hair Shed Count Questions For Telogen Effluvium? In The Shower, Etc

Discussion in 'Women's General Hair Loss Discussions' started by sleepywaif, May 10, 2019.

  1. sleepywaif

    sleepywaif Member

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    Hi,

    so basically I've put off counting my hair shed for years because it stresses me out.

    I'm 90% sure I have TE...just based on the wads that I get without counting. My mom complains about it clogging the tub. I think i have Androgenetic Alopecia too though..but that's another topic lol

    when counting hairs lost, it says >100 or >150 per day means TE? I need the most specific guidelines

    also does less than 100 or 150 mean in just the shower, literally, or is that including hairs lost in my hair brush ?

    thanks everyone, dreading this... :(
     
  2. TinaM1968

    TinaM1968 Established Member

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    Has the loss been happening for years? That imho wouldn’t be just plain te could be chronic te low vitamins minerals thyroid Androgenetic Alopecia Ect te is usually short lived after a traumatic effect. Could last up to a year but usually no longer and occurs 6-9 months after the event. Chronic te is usually multiple triggers and can last 10yeats if the trigger isn’t found and eliminated Everyone shed is different. I stopped counting a long time ago but after shower I may have 40-50 sometimes less. seems low huh but I sweep up hair and pull it off everything all day. Even a low count if not regrowth is a major hit for some. ( that’s me). So for some the shed just depend on what you normally lose compared to what makes you think it’s loss and how thin, patterned ect the hair loss is making your hair. Hope that answered some of your questions hairloss is a tricky strange beast. One I personally wished I never met lol! I am undiagnosed and going on 5 years of what seems like a losing battle
     
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  3. unefemme

    unefemme Member

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    I'm in year 7 of CTE and female pattern hair loss. My initial trigger was a beta blocker, so everyone thought that I'd deal with the hair loss for a year or so after ending the medication... nope. Since then, I continue to lose hair - especially in the shower, when I comb my hair after the shower, and when I blow dry (gently!) my hair, I wash my hair 2 or 3 times per week and lose between 275 to 350 each time. Thankfully, I am still getting growth, but my hair has thinned dramatically since this loss began. Daily, probably between upwards of 50. I feel your pain.
     
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  4. sleepywaif

    sleepywaif Member

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    Yeah I see I just washed my hair and I'm terrified to even look at it, it's a huge huge wad. I'd murder a puppy just to lose 50 hairs in the shower, I definitely lose more than that.

    I'd say at least 150 washing my hair and then who knows how many brushing my hair.

    This would be chronic too because it's happened since my late twenties. I'm 35.

    The texture of my hair has changed a lot too, when I put it in a ponytail it turns to frizz like instantly. My hair is not dry. Does anyone else know what I'm talking about? It's like a halo of frizz

    I only wash my hair 2-3x a week too...that's actually a very good point if I washed it everyday the hair loss would be less and thus affect the counts

    My last labs were, low ferritin (but I've always had low ferritin????) , Low tibc (which means my body doesn't try to absorb iron), dht at 25 percent of the range aka low, normal ft4, low ft3

    I also have hypermobility (ehlers danlos syndrome), low c3 c4 (these are immune system markers). I've had these tested twice and they were at the bottom of the range. But I've also had extensive autoimmune tests and they all come back negative. Eds is not associated with hairloss

    My 23andMe report was full of hair loss snp's but I'm not sure how normal that is

    I currently dump minoxidil on my frontal and temples, hair part is okay...I'm sure not like it used to be but definitely not like I've seen in women with female hair loss. Minoxidil does work
     
    #4 sleepywaif, May 12, 2019
    Last edited: May 12, 2019
  5. sleepywaif

    sleepywaif Member

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    @unefemme did you have really thick hair before the beta blocker?

    My hair was freakishly thick which is why I ignored my hairloss for so long. But now it's not thick so I'm freaking out
     
  6. unefemme

    unefemme Member

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    Sleepywaif, My hair was unbelievably thick prior to the beta blocker. In fact, I had visited my dermatologist for my semi-annual check up in May (1 month after starting the bb) and he started to check my scalp for moles... He laughed and said that he'd try again when I was in my 80s (I was 58) b/c my hair was too thick for him to see my scalp! A few months later, I was losing hair by the fistful.
     
  7. unefemme

    unefemme Member

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    And, yes, the text ure of my hair has changed dramatically. It used to be shiny and prone to "underneath" frizziness in humidity, but now it's an odd texture - almost straw like - and it frizzes all over in humidity. However, the "on top" frizziness is, I believe, a good thing b/c I can see the shorter hairs growing back... even thought I'll likely lose many of them b/c of the CTE and whatever else is going on. Any positive note is good!
     
  8. RoxyT

    RoxyT Member

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    @sleepywaif I, too, have Ehlers-Danlos (hypermobile type). I know hair loss is not thought to associated with EDS, but there's so much scientists have yet to figure out about these conditions. I'm posting about my situation in case it's helpful to you and others with Ehlers-Danlos who are searching this forum.

    I'm 52. It's hard to say when my hair began to thin because I had so much of it, but I can see it photos starting in my mid-thirties. I noticed a change in texture (coarser) and natural color (, turned darker from honey/strawberry blonde to red-brown with blond highlights) starting in my early 40s. I attributed these changes to shifting hormones. I began peri-menopause at 35 and menopause at 42.

    When I was 46 or 47, I noticed that a patch on the front of my scalp about an inch from my hairline, was shorter than the rest. I figured my hair stylist had made a mistake or I'd done something stupid when trimming my bangs.

    When I was 48, I had a major bout of what dermatologists said was seborrheic dermititis: red, itchy, swollen, slightly greasy patches on most parts of my scalp. That's when I noticed that some places were thinner, some had noticable stubble mixed in with longer hairs.

    Nine months into the seborreah phase, I began a series of telogen effluvia. Large hair accumulation in shower, lots of hair shedding when I ran my hands through it, you know the drill. Meanwhile, arms, leg, pubic hair and eyebrows began to thin. A scalp biopsy revealed inflammation but didn't suggest any particular form of hair loss. I saw four derms, including ones from John's Hopkins and George Washington University.

    I was also experiencing exhaustion, less resilience to stress, and major sleeping issues, as well as general body aches. When I was almost 50, I decided to take a break from my career and try to figure out if something was seriously wrong with me. The seborreah, which had not responded to a dozen medications, resolved almost immediately. Exhaustion, pain, sleep issues, telogen effuvium continued.

    Investigations revealed Ehlers-Danlos, hypothyroidism, extremely low levels of sex hormones, vulval lichen sclerosis (ugh) AND finally, in January, frontal fibrosing alopecia (FFA) It's a scarring form of alopecia that tends to be seen --though not always-- in post-menopausal women.

    I'm afraid of my computer crashing and losing all of this so I'm going to post and finish in a separate post.





     
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  9. RoxyT

    RoxyT Member

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    This is a continuation of my post above regarding frontal fibrosing alopecia (FFA).

    The dx of FFA was based on my loss of body hair together with the hair loss at my front hair line, along my forehead and temples. It became smooth--not even stubble--with the skin somewhat atrophied (slightly indented). That is FFA's hallmark. Interesting thing is that a second scalp biopsy on the edge of that area just a few months prior didn't show the disease, at least according to the pathologist.

    I have been taking oral minoxidil for past six months. That has stopped the telogen effluvium, which was coming generally from my whole scalp. Thinner hairs are growing on the hairline that had become smooth, but I continue to lose thicker, "normal" hair, from the strip behind that. Thinning continues all the way around my hairline: above forehead, temples, above ears, around the nape. Plus, the back of my head right at the top is thinning. So much for "frontal"!

    I've recently started taking hydroxychloroqine, an immunosuppressant, which takes up to six months to begin working. FFA is thought to be autoimmune. I also take 40mg of doxycycline to ease inflammation, use clobetasol as needed for inflammation, and have monthly injections of kenalog, a steroid.

    My research indicates that FFA can be slowed down but not eradicated by treatment. However, sometimes the disease course stops on its own.

    I hope this helps someone, and I wish everyone reading this the very best!


     
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  10. alexia35

    alexia35 Member

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    Bonjour. Vous avez fait une nouvelle biopsie pour confirmer? avez-vous des cheveux de vellus ou est-ce lisse?
     
  11. alexia35

    alexia35 Member

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    Hello. You did a new biopsy to confirm? do you have vellus hair or is it smooth?
     
  12. sleepywaif

    sleepywaif Member

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    Please keep us posted about the immunosuppressant!! I definitely do not have a loss of total body but my c3 and c4 are suuuuper low. Even tho my blood tests don't show an Alopecia Areata disease. Nobody I've spoken to with eds mentions their complements being low.

    I'm terrified by the time I'm 45 I'll need a topper which I can't wear, it's too painful. Right now I just dump toppik around my temples and frontal and it's okay but when I'm shedding so much it's terrifying. I've used 5 percent minoxidil for about a year

     
  13. sleepywaif

    sleepywaif Member

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    I have not
    I'm in Atlanta and need to find a place to get it done....I definitely see what I think are vellous hairs but I also shed like crazy amounts so I guess I have both?

    If anyone's had a biopsy in Atlanta please let me know
     
  14. sleepywaif

    sleepywaif Member

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    i wanted to show you guys my halo of frizz without posting pics bc it stresses me out

    https://www.youtube.com/watch?v=paQGV3g47ZY

    this guys hair
    so i've seen so many women online with hairloss and it's still healthy and silky looking.
    whereas my hair looks like this. tons of short frizzies especially at the front (Androgenetic Alopecia??? or is that minoxidil????)

    also have you all compared your 23andme promethese reports? i'll share mine. i definitely had hairloss related ones.

    update:

    i have to add my "plan" to deal with my dumb hair. it looks SO BAD and i've been ignoring this for 6+ months

    i've never had to use bobby pins literally in my life? so this is going to see laughably obvious to most people.
    i refuse to put any chemicals in my hair or oils unless my scalp is feeling oily, then i might try some rosemary oil or tto or scalpacin. and i refuse to heat my hair
    i henna my hair every 2 months or so


    daily "styling" (if you call it that..it's cringey):
    brush out my hair completely to where i can run a comb through it
    then put in a "tighter" not too tight pony tail
    run my hands in the opposite direction along the top of my head to catch all the short frizzy hair, comb them into a twist, twist and hold them back with two bobby pins on the top of my head. it's like pinning back bangs but it's the thinnest bangs ever. let the very short hairs stay and push them down on my forehead with my hands. they look like baby hairs/regrowth which is good, hides thinnning.
    hairs near my ears definitely feel miniaturized. they feel like frizz but they're so light and easy to tuck behind my ears, i can just ignore those.
     
    #14 sleepywaif, May 27, 2019
    Last edited: May 27, 2019
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  15. Sandy

    Sandy Established Member

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    Wow it sounds like i have exactly same however i had a scalp biopsy that ruled out FAA and i went to see Donovan and he said he also doesnt believe I have it because the back of my hair is very thick but it also shows inflammation. He thinks it could be TE but also amdrogenic alopecia and said i should use finasteride and the hair max lasar comb for 6 months and if doesnt work he recommended transplant.
    I do have hashimotos, i have lost most body hair, i still have eyebrows/lashes although of course less, and my hairloss is front center and temples and i see in the crown at the end of my part a balding spot. He says i have numerous thin hairs throughout but i dont see them. My hair is course and tends to ‘puff up’ so it looks thicker at times but no disguising the loss in the front which very distressing. I taking stinging nettle root that seems to have helped the loss considerably after two months, and recently started flax seeds-1 tablespoon/day which i read could be alternative to finasteride but Donovan said that is not so, but i read it helped some women so want to try before loading up on prescription meds.
    I never heard of ehlers danlos but will look it up.
    I am not keen to get transplant because will freak out if i get shock loss.
     
  16. Sandy

    Sandy Established Member

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    I just looked up and dont have ehlers danlos but i have symptoms of FAA although biopsy and docs say it is negative for that and FPHL. Why then do i have body hair loss?
     
  17. Sandy

    Sandy Established Member

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    Hello, I want to post a couple fotos. My symptoms sound much like yours, loss of body hair, loss at front hair line, forehead and temples. Mine happened right at menopause and all this is symptomatic of FAA, however the scalp biopsy came out negative and the dr found inflammation in the back which doesn't seem to have been affected by this. He ruled out FAA as well. He said to take Nizorel, the hairmax laser comb (I read terrible reviews about it though), finasteride and if doesn't work in 6 months to do the transplant. Here are some images:
    I don't want to take minoxidil. My loss has decreased since starting stinging nettle root, I am primarily concerned with regrowth now. Are the meds you taking such as hydroxychloroquin supposed to create regrowth? The doctors are think I am ideal candidate for transplant to do good donor area, but there is shock loss which scares me terribly. I don't know what to do. My hair used to be my best feature.
     

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  18. Sandy

    Sandy Established Member

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    So I have another question, in the photo below, I see small like holes in front hairline where I imagine hair used to be , does anyone know if this means it is hair lost forever, or just temporary loss? This is all very recent, in that it seems my front hairline is getting much worse, I didn't have this even a couple months ago........
    I am really getting more and more inclined to have the transplant....
     

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  19. TinaM1968

    TinaM1968 Established Member

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    I can’t see them in the picture. Maybe just open pores?
     
  20. Sandy

    Sandy Established Member

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    If you zoom in you can see them front center. I didnt have them before.
     

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