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The difference in 4 months...

Discussion in 'The Undiagnosed' started by sunlit, Jan 6, 2015.

  1. sunlit

    sunlit Established Member

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    Whenever I see women talking about TE-esque hair loss on other websites, so many say "Luckily I had thick hair to start with, so I was the only one who could really tell". All I can think is "Yeah... wish I had that luxury". I had fine hair from the outset, so my thinning got noticeable really quick.


    My hair in its normal state, just before this started:
    before.jpg

    About a month into shedding, already looking thinner:
    sept or oct hair.jpg

    Today, after 4 months of shedding:
    january hair.jpg

    I'm lucky because I don't have as much visible scalp as I thought I would by now, but the overall quantity/density has become so low. It looks so ragged and sad. It's all different lengths too, because all the longest hairs seem the most prone to falling out. My shed hasnt stopped yet, and I cringe to think about what this might look like in another couple of months' time.

    Anyone else in the same boat here? And anyone have any tips for how I can hide how little hair I've got left?
     
  2. losing_it

    losing_it Established Member

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    I know the feeling exactly. My scalp is still full, but my ponytail is down right pitiful. I have been shedding for about two years. Just recently it seems to have started slowing down, but don't let that get me hopefully as that will happen from time to time and then it picks right back up. I'm sorry you are going through this too :(
     
  3. Ruth

    Ruth Established Member

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    Ah girls, it is so painful seeing your hair dissapearing, I know.
    It is getting so bad for me now mentally that i can hardly sleep because of it.
    I don't know if ferritin could be a cause. A lot of women hope that that is the case, but i have heard very few successtories. Still hoping though.
     
  4. sunlit

    sunlit Established Member

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    I realised this morning that I was fooling myself about my scalp being covered. When my hair is fluffy from being freshly washed and I'm careful about how I tie it back, it's covered. This is my hair the day after washing, tied back without all the smoothing:

    january side.jpg

    I had no idea it was this bad. It really looks terrible. I look at this and I feel a bit disgusted.

    Has anybody else's gone this fast?
     
  5. Ruth

    Ruth Established Member

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    I do think it is very fast, which might be indicative of TE. How many hairs a day you shed?
    You als don't seem to have a Androgenetic Alopecia pattern, so that might also be a good sign.

    For me it also went fast from September onwards, though not as fast as you.
     
  6. sunlit

    sunlit Established Member

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    I'm sure I have TE - the triggers, timing and symptoms line up clearly - it's more that I'm worried the TE will turn into something else and won't grow back :( My mother and an aunt both have Androgenetic Alopecia.

    It's weird that losing SO MUCH hair and all over my head is comforting, but it is. The fact that my hair is disappearing everywhere rather than in the FPB/MPB pattern does give me hope. If it was a gradual, slow thinning it would probably be more worrying - although less of a shock. I don't know, though. I'm thinking about going to see a dermatologist in hope of some answers.

    I'm just really dreading the fact that I'm going to have to wear hair sooner or later. I never realised toppers and so on would be so expensive.
     
  7. Nerak

    Nerak Established Member

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    Hi Sunlit

    Our stories seem pretty similar. I lost half my hair in 3 months and it was shocking. Mine was not as thick as yours to start with so whilst my scalp looked very similar to your picture my ponytail is about the size of a pencil. It still surprises me everyday when I look in the mirror, going from normal to terrible so quickly gives you no time to adjust.

    If it is TE and whatever triggered it has passed you should have a good chance of recovery.

    I'm getting some good results with minoxidil and a laser cap but have accepted that wearing hair in some form is definitely in my future. If you look at some of the other posts I think there are some options out there that don't cost a fortune.
     
  8. jbnew

    jbnew Guest

    Hi Sunlit, sorry you are going through this. That is so what my hair looks like when I pull it up..That started for me on Dec 20. I also have really, really thin hair, so it took no time to get to the scalp. Don't be disgusted with yourself, it is not your fault.
     
  9. hairlosshelp

    hairlosshelp Established Member

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    I had two bouts of TE...one when I was 19, and the other currently at 24. But that combined with the folliculitis during the excessive shedding periods have actually made me almost certain about Androgenetic Alopecia (but that's because I have the pattern, not family history. Though I also have what you have in the pony tail). So I think mine started out as TE and ended up as Androgenetic Alopecia. I really sympathize with you, but hope that it is only TE as it can be recovered in less than a year. My cousin had TE from crash dieting (unrelated by blood/genetics as she's adopted) and she recovered in 3 months simply through a healthy diet and cod liver oil.
     
  10. Jenk

    Jenk Established Member

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    I am in the same position too. Mine started to fall out at the start of July and by Oct/Nov I lost a good 65-70% . People keep saying, "oh but it's full on the top." They don't realize ALL my hair was always on the top in the front and I have about a quarter of that hair left now. The rest is an absolute mess. All different lengths, thin as hell. When you touch my sides and temples it's like baby hair and scalp! My shed finally calmed down the last part of November. It's increased slightly since but not much. I guess it's an average for me to lose between 70-100 hairs. Though I had a few days in the last month where it went to 130 or 150.

    Everyone says my hair is growing back in, and that there are small hairs everywhere.. but shouldn't then density be better then? Esp right at the scalp? I finally gave in Weds and bought some clip in extensions. I couldn't afford to lose jobs because of how crappy my hair looks. I have been modeling part time for art schools while looking for career work. most of the time no one says anything to me when I pin my hair up but the other day someone asked me to send them a photo of me with my hair "down and loose"... you can imagine the depression that brought on.

    I am supposed to see my fiance Monday for the first time since I lost this hair. He's never seen me like this so... :( Does anyone know when you should have seen your density come back if it was going to?
     
  11. rva207

    rva207 Established Member

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    It has been 18 months since my big shed and I'm just now noticing an improvement in my hair from regrowth. I didn't lose as much as you during my shed (~25%) so I would think it could take years to recover if you lost 60-70%.
     
  12. sunlit

    sunlit Established Member

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    Thanks for the kind responses. I am so, so sorry that all you ladies are going through this too. I'm just glad that this website exists so we can commiserate together.


    Good news and bad news, again:

    Bad news: My shedding is speeding up again. I don't know why. It had reduced for a little while, but it's excessive again (though never as bad as it was in October - October was awful). It also seems to pull out of my scalp very easily, which it didn't before. My scalp pain is coming back too, although it hasn't been so bad since I started using the ketoconozole shampoo. Still have no idea how to make my hair look passable.

    The good news: My GP refered me to a dermatologist!! I don't know when it'll be, but that takes me one step closer to finding some answers. Also, I have definite regrowth! Not very much, and not all over my head, but I have a number of new hairs growing at my front hairline that look normal. I am sure that taking food supplements has helped. My remaining hair grows the normal half an inch per month now, and I think it grew slower than that before.
     
  13. Wolf924

    Wolf924 Experienced Member

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    Sunlit I am SO sorry you are experiencing this. I too have been shedding since August of 2014 and I think (THINK, not sure) that is is slowing down slightly this week. I am so mired in this its hard to tell you know? I think I beat myself up a lot--like I am quick to note how many hairs I am losing but I can't seem to see small regrowth--although my husband says he does.

    Did you go on or off Birth control? I believe my diagnosed TE is from going on Nuvaring and Lower iron. We should compare notes. My dad is an OBGYN and I have been asking him question after question about this.
     
  14. sunlit

    sunlit Established Member

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    Thanks Wolf. I hope your loss is slowing down. Apparently TE commonly lasts 3-6 months, so maybe it's not surprising that both of us are still shedding.

    I have actually never used hormonal birth control, so that isn't a factor for me. My ferritin tested at 32, though, which is fairly low - I've been taking iron supplements for 2-3 months now and I think it helps. I have a bit more energy even if I'm still losing hair.

    I'm so sorry you've had such a bad side effect from the Nuvaring. I know so many women who've had horrible problems with the pill, the IUD and the injection especially - not anyone with hair loss, but so many who have had other troubling issues from hormonal contraception :( I really hope there's more research into this and we have safer options in future.
     
  15. Wolf924

    Wolf924 Experienced Member

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    Sunlit--by my estimation we should stop shedding by March 1--hopefully. I will pray that yours stops as well as mine (I pray every night this is over)

    As a side note gals--NEVER USE NUVARING. I swear I know, KNOW this is what triggered my hair loss. I also read that Nuvaring can inhibit Fe absorption.

    I am interested to know if I will have the dread shed. I have been off the ring for 2 months, and I think my shedding is actually getting a bit better. But I seemed to have hair loss ON the ring-not off it. I was on for 8 devastating months. I have not read stories about success with regrowth after the ring, but I hope I can get some of my hair back.

    Today, I noticed that when I put my hair up it is no longer really covering the bun-springy round thin I wear to make it look like I have more hair. When will this stop??? This is a nightmare.

    What is normal shed anyway--I have read anywhere from 50-100, my derm said more like 40. Thoughts?
     
  16. Jemsgirl

    Jemsgirl Established Member

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    I have the exact same loss and it started July 2013 and started to recover but got pregnant again and all the regrowth fell out during the pregnancy. I don't know if mine will eve recover. I bought my first wig. Sigh
     
  17. sunlit

    sunlit Established Member

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    Shed's picked up a lot. My hair is definitely abandoning my head in 2015.

    I find it difficult to tell just how bad my hair actually looks to outside eyes. I mean I know it looks like a 'bad hair day', but I don't know how obvious it is to others that I'm losing it. I find it very difficult to be objective about my own appearance. And because friends and family want to reassure me, they'll say "it's not that bad". I don't know whether "it's not that bad" means "you wouldn't really know you were losing it" or if it means "I wouldn't run away screaming".

    I don't know how much longer I can get away with my bio hair being the length it is, or if that moment has already passed. It's just past my shoulders right now and because of how thin it is, it separates. In the meantime I've been using a clip, but I don't know whether I should cut it shorter (or even short). Any time I suggest I'm thinking about it, the people around me grumble against the idea... it's stupid that even in 2015, even young people seem so resistant/judgemental about short hair on a woman. Ugh.

    I guess I'll get a wig eventually, but the expense is just not something I want right now.
     
  18. rva207

    rva207 Established Member

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    My hair separates less now that I keep it at an angled bob that just hits the collar bone at the longest part. It helped a lot.
     
  19. sunlit

    sunlit Established Member

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    side february.jpg side feb 2.jpg july or august.jpg

    First two pics: my hair today. Third pic: my hair in July/August.

    Honestly, WTF. The sides are much worse than the top (the top is affected, but my parting is not that bad as far as I can tell). And I don't know if you can see from these photos, but my hairline has been hit really badly and now is the shape of a man's hairline. I used to have a small widow's peak which has now completely disappeared, and there's literally no hair left in the sort of.. 'triangular' area where the temples meet the forehead (do you know what I mean?). I have a bit of regrowth right at the front hairline and a little in those 'triangles', but wow, this is looking pretty bad.

    Knowing it looks like this wet or tied up is what makes me feel so crazy when somebody says 'your hair looks nice today'. I know the loss at the sides isn't really visible when my hair is down, but I'm sure 50% of my hair is gone, so I feel like people are swearing black is white. I still haven't got a date for my dermatology appointment.

    - - - Updated - - -

    It's all I can think about today. Uuuugh.
     
  20. sunlit

    sunlit Established Member

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    Shedding is still high as heck and my hair seems to be getting rapidly thinner. This is crazy. I now have such a thin patch in the 'bangs' area that it shocks me. I'll upload a photo when I get home this evening. Would really appreciate it if anyone who knows about this could tell me if it looks as Androgenetic Alopecia-esque as I think it does. This thinning just behind the hairline looks just like my aunt's, which has developed slowly over years, and she has Androgenetic Alopecia.


    Increasingly I think there's a hormonal element to this, though I'm still waiting on blood test results. My period is always late and suddenly I have bad skin, when I had great skin before. Could a hormonal problem cause high and prolonged shedding like this?
     

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