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Hair loss for 2 years- brows, scalp, lashes. All bloodwork normal. Feeling hopeless

Discussion in 'The Undiagnosed' started by katiekins198, Nov 3, 2014.

  1. Eunmi

    Eunmi Established Member

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    I had to use it again after 3 days, I was dealing with scalp burning.
    Not sure if it was related to being off the steroid foam, or an indication of my monthly cycle. Because 2 days after that happened is when it happened.
    Just had to be on my birthday. Made it all the more horrible.
    The pimple like bumps are almost gone now, thankfully. I think I may have overused the foam. My pharmacist nor dermatologist told me how much I should be using daily on my scalp, so I filled up the cap and used that. Probably a horrible idea. It's been almost 3 days since I've used it again, and so far so good. Just a slight warm to the touch feeling on my scalp that I can live with. Before it just kept bothering me on how much heat was generating off my scalp.
    I honestly didn't want to have to rely on the steroid foam, especially since I've never used topical steroids until I was prescribed the strongest one I know of.
    I don't know if my derm did it for speed healing, or if my scalp was just that horrible looking to him. I'm going to try my best and stay off of it as much as I can. My scaling hasn't come back at all. Luckily I didn't use the foam ALL over my scalp, or the pimples would be more widespread, they were just in the areas where I had patches of scaling. Lesson learned: NEVER leave my derm's office without asking any sorts of questions of what he's prescribing me.
    I had called my pharmacist about this first, all they asked is if the pimples were from using the foam, and asked if they had started to go away after I stopped using the foam, said yes, but told them about the burning sensations, they actually wanted me to use the foam to calm that down and call my derm. Ugh, sometimes I feel like I'm in a no win situation. But trying my best to hang in there.
    Now if only my pharmacy would let me refill my keto shampoo... I ended spilling some and haven't used it in about a week. And it's still saying it's too soon for me to refill it. Seriously, 4oz bottle of shampoo is supposed to last a month? Ridiculous.
     
  2. mycurlyhair

    mycurlyhair Experienced Member

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    Oh thats a bummer on the shampoo! At 1 point I had a few bottles because I wasnt using it. I wish it worked for me but it didnt. So no more scaling at all you mean? From the tea tree or the steroids?
     
  3. Eunmi

    Eunmi Established Member

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    Reduction in scaling has been from the steroid foam, but I may have to discontinue using it, it's leaving pimples on my scalp. Ergh. I try to combat one problem and get another, when will it end! I actually liked using the foam, it made my scalp feel normal for a change, but the pimples aren't worth it.
    Shampoo has been helping with the flaking, but barely a months use is still too soon to tell.
    I was finally able to get a refill on my keto shampoo and can FINALLY use it tomorrow.
     
  4. mycurlyhair

    mycurlyhair Experienced Member

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    Oh good!! Keep us posted. Sounds like things are getting a little better.
     
  5. Eunmi

    Eunmi Established Member

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    They are.
    And after nearly 2 weeks of not even bothering to look at my hair, I can see little hairs poking out in the front of my hairline, and in my bang area.
    I still have a long way to go, but I'm hoping these hairs stay and grow in strong and healthy.
    As I have premature graying, since it runs in my family, almost all of the hairs coming in are pigmented, aside from the grays, a few are thin, but they just popped up, so I'm hoping they grow back in nice and thick.
    This has been keeping me from losing my mind more than I already have.
    I've noticed I'm shedding less short, thin hairs now, it's gone back to being about 4 inch hairs, and my normal length, as much as it sucks to see that. I think my long-standing case of TE is possibly going into remission. I'm almost to the 6 month mark since I've started to treat the SD, but it's only been a month since I've seen my derm and started my prescriptions, but it still looks like my scalp is finally starting to slowly fill in.
    Just hoping it's nothing but good news all around for me when it comes to this.
    I've also been asking an expert on allexperts about my hair loss associated with SD, as crazy as that may sound.
    He's asked me to forward my e-mail address to him to get in touch with someone who can give me some samples to try on my scalp for this condition free of charge, just not sure if I should trust it!
    Just keeping my fingers crossed now!
     
  6. mycurlyhair

    mycurlyhair Experienced Member

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    What is the stuff? Can you google it?
     
  7. Eunmi

    Eunmi Established Member

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    I have no idea on what it is, I notified them just a few hours ago, and it takes 1-3 days for a response. Will let you know when I get an e-mail from them

    Well, this person's wife had e-mailed me. Apparently it's a free trial of Nisim hair products.
    Don't know if I should just say screw it and do it, or just kindly decline.
     
  8. Eunmi

    Eunmi Established Member

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    Well, while my dermatitis isn't getting any better as far as i can tell, it's not getting any worse.
    Other than the few pimples on my scalp now. I think it's just superficial folliculitis, since none of them hurt at all.

    I think I can officially rule out PCOS related hair loss. PCOS hair loss would've most likely hit me like a ton of bricks already.
    PCOS hit me right at puberty, and as far as I've been told, there's a genetic predisposition to the PCOS hair loss pattern, and if testosterone levels are high enough, it would've manifested itself already. My T levels were a little bit above normal when I had first gotten tested at 16. Now they're normal. and after losing almost half of my hair over the last 2 or 3 years from SD, there's no MPB pattern, or FPHL pattern as well. My part is still tight, my hair is just less dense all over. No noticeable thinning at all, just less density. While I can't exactly rule out Androgenetic Alopecia, my hair loss doesn't follow a specific pattern.
    I'm thinking it might be a case of CTE. Due to my SD, stress from the hair loss, and a possible iron deficiency, plus my vit. d, and possibly zinc as well.
    I've started taking 50mg extra of zinc, and started on slow-release iron tablets.
    Still need to set up an appt. with my gp to test for these deficiencies, but I don't eat an iron rich diet, and definitely don't get much zinc in as well, even with my multi.
    After being away from these forums for a few days (I desperately needed a mental break from my computer all together) I feel a bit more at ease, but know I'm not out of the woods yet. My shedding is still a bit above normal for me, but it's hair I would've lost 3 months ago.
    I'm trying to tackle the inflammation by trying to avoid sugars and fried foods.
    I'm not noticing any really short hairs shedding, it's mostly my full length.
    I have noticed a few thin strands here and there, but they're way past the length of being miniaturized.
    I think they're just hairs that desperately tried to grow with my inflamed scalp.
    I'm hoping that this SD starts to reduce down, but I can no longer use olux, it causes my scalp pimples. No longer feeling a bad burning sensation when not using it for about a week, but I've noticed that sugar and white breads set me off.
    I think I need to just stick with my diet of wheat breads, brown rice, and low amounts of sugar. Since my PCOS may be IR related. Thankfully my hormone levels for testosterone and free testosterone are all normal. Need to get the rest tested, so going to set up an appointment with my GYN to be retested for PCOS.
     
  9. mycurlyhair

    mycurlyhair Experienced Member

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    Suger always makes my SD worse too. I dont eat it anymore. Glad you are feeling a little bit better. Still using the tea tree and keto?
     
  10. Eunmi

    Eunmi Established Member

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    I ran out of tea tree oil.
    It didn't seem to be effective after a certain duration.
    Still using the keto, but with limited success, even though I've only been using it for 5 weeks.
    I stopped using the clobetasol completely, getting superficial folliculitis wasn't worth it at all.
    After 3 days of using 50mg of added zinc, it's been helping a little bit.
    Trying to get used to the iron pills though, I've never been able to take them because they were harsh on my stomach, but taking slow release has been a bit easier.
    Still need to get my iron tested though, just using the slow release for therapeutic measure until I can see my gp.
    My shedding is non-stop though. It's not REALLY bad, but it's still more than I'm used to. While my hair continues to fall out after this long, my part is still intact surprisingly, it's just less dense all over. Getting a bit tired of it.
    I still think I'm facing CTE from multiple different issues. SD, Vit. d, possibly iron.
    Ugh, it's been hard. I have days where I'm fine, then for a full week I go into self pity mode and find myself crying ,begging and praying to God that the loss stops and I get more regrowth. I seem to have had some this entire time, but it just can't keep up with the loss. It's so infuriating.
    And on a side note, I really need to stop counting hairs every time I come out of the shower and comb my hair, it just makes it worse for me.

    - - - Updated - - -

    I think my SD is finally having some turn-around.
    I felt around my scalp earlier, which I've been obsessed with for the last 6 or 7 months, I don't feel as many scales anymore, my scalp is getting super flaky though from it healing (at least that's why I think it's doing it). 4 days in on oral zinc, my scalp doesn't feel hot to the touch anymore, it just feels warm. So I'm thinking the inflammation is finally starting to die down (fingers crossed!)
    I hate it though, both of my maternal grandparents have eczema, so does my sister.
    And a few days ago I found out my mom had SD when she was around my age as well, hers just didn't get as progressively bad as mine. So now I know why this manifested itself. Boo for genetics and faulty immune systems.
    I've sifted around my scalp as well, desperately looking for regrowth in certain areas I've been concerned about, and I see little 1/4" hairs everywhere, some are thin, but I'm praying they grow into terminal hairs as they start growing more. But almost all of them are as thick as my normal hair, and pigmented. Aside from the newly forming grays I have, courtesy of genetics as well. Honestly, I started graying when I was around 19 years old. I still have this one spot, right at the front of my central part near my forehead that's a little sparse, but I think I'm also suffering from traction alopecia, need it be minor. When the SD started, I was so embarrassed about it that I kept my hair pulled back ALL day long, and when I slept. Except for the days I washed my hair. The worst hit areas for that are right above my ears, a little bit in the back near my nape, and right in the front near my forehead. At least it still has decent coverage. I haven't worn my hair up in 7 months, it doesn't feel that great because of the density loss, but at least no one else can tell I'm missing hair. I'm seriously hoping it's just the SD that's causing my delay in hair growth, and now that I've got most of the inflammation down, my hair can start sprouting thicker hairs now.

    This has been a long, depressing journey for me. Never in my life have I had this many depression episodes in a matter of months. I almost called up my old psychologist to see if she could recommend anyone I could talk to, I even considered going back on cymbalta because I couldn't take it anymore, but I'm hoping there's some light at the end of this dark tunnel for me.
    Just today I broke down and cried out of frustration. But I did this to myself. I could've avoided all of this had I listened to what my mind was telling me, instead I stupidly ignored it and let it get this bad. I could've avoided SD all together, but, you live and learn I guess.
    Hopefully my hair loss doesn't progress to anything worse than what it is now.
    But like I said, I've had PCOS since I was 13 years old, the genetic factors would've shown themselves a long time ago when my hormone levels were WAY out of whack.
    If I notice anything different once my SD is more under control and possibly in remission, I honestly don't know what I would do.
    But I'm hoping that won't show up for years to come, even though I've been told there's a high chance it may never happen.
     
  11. mycurlyhair

    mycurlyhair Experienced Member

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    Good news! Zinc has been on my list of things to try. I will add it soon! Started on vit D and bettle tea and I am seeing a lot of growth myself. Wishing yours stays away for you! Keep posting.
     
  12. Eunmi

    Eunmi Established Member

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    Well, may as well finally post a pic to get some opinions.

    Here goes nothing!

    I honestly don't know what to think about my hair anymore.
    101.jpg

    Funny thing is, as far as I can feel, most of my loss is on the sides and nape. The top of my head looks okay, just less dense than I'm used to.
    My part has always been a bit wider than normal, it's just less sparse around the edges now, unfortunately.
     
  13. mycurlyhair

    mycurlyhair Experienced Member

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    I have no loss at the nape. My hair is really strong there. Weird! Do you have scaling at the nape? I have those thin side areas too. More so lately.
     
  14. Eunmi

    Eunmi Established Member

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    I think my thin sides are a combination of traction and SD related hair loss. I noticed that some of the hairs that do manage to grow are slightly thinner. I had mild scaling on my nape, there's still a tiny bit. Since I've been sick, it's like my scalp feels a lot better, but holy crap the flakes from the healing SD areas. I keep forgetting to buy salicylic acid shampoo to help loosen scales lol. Could've asked my derm about it, but now I have to wait until March
    24th.
     
  15. mycurlyhair

    mycurlyhair Experienced Member

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    I bought mine at Whole foods. When you said Holy crap do you mean it is back since being sick? Scaling...
     
  16. Eunmi

    Eunmi Established Member

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    It's not back with a vengeance, but some of the spots I had are flaking from healing. I still have minor scaling, but the spots are pale pink now instead of red. I can live with mild SD, without inflammation, but seriously never letting it get horrible again.



    Ugh, back from urgent care. Now I have bronchitis and tendinitis. Hooray!

    WELL, since it has nothing to do with my SD, one of the prescriptions the doctors prescribed me sort of does.
    He advised me to take a 6 day course of prednisone to get rid of anything bacterial that's causing the bronchitis.
    I got kind of scared when he told me he wanted me to take it, since I know hair loss is a side effect of taking oral corticosteroids.
    I'm praying I don't have a horrible reaction to this, I just want to feel better again.

    Honestly, if it's not one thing it's another with me lol
     
  17. Eunmi

    Eunmi Established Member

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    Hoping it's a good sign.
    I see little baby hairs around my hairline.
    Hopefully they grow into thicker hairs. I mean, it's an area near my forehead where my SD was at its worse on my hairline, did nothing but pick at it, so it's a shocker to see little pigmented hairs in areas I haven't seen hair in nearly 3 years.
     
  18. mycurlyhair

    mycurlyhair Experienced Member

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    Oh nice, must be!!
     
  19. Eunmi

    Eunmi Established Member

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    2 weeks in on 50,000 IU's of vit. d weekly, shed has decreased a little bit. Now losing 4-5 hairs per shower. Still horrible when I comb though, especially with 2% nizoral.
    Since my gp wouldn't write me off a prescription for a clear deficiency, I'll just take otc vit d3 at 50k IU's for a few more weeks and see where it gets me.
    I'm actually starting to see more regrowth. They're a little thin since they're about 1/4th of an inch long, but my part is looking more dense than it was before.
    Still taking 65mg of slow release iron daily as well.
    I'm not sure, but with iron deficiency, has anyone experienced a change in hair texture, or noticed with darker hair you have like, a red hue to it?
    My hair feels more coarse than it used to, it's not horrible, but it just feels different.
    I've never noticed it before, but running my fingers on the length of my hair, it almost feels like it's grown unevenly. There's like, breaks in the hair itself. My hair just feels dry, stringy, and looks dull.
    I dunno, it's kind of hard to explain.
     
  20. mycurlyhair

    mycurlyhair Experienced Member

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    Niz was drying to my hair. You are much better off with the D3 then the D2 you will get from the doctor.
     

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