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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. katiekins198

    katiekins198 New Member

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    Hi guys,

    I have been trying to stay off of these hair loss sites since my hair loss "journey" began almost 2 years ago. At this point, I am completely desperate and need help. I no longer know how to cope with this.

    My name is Kate and I'm a former model. 2 years ago, I was put on a week-long round of steroids to combat a strange onset of pleurisy. It completely rattled my system and I had every side effect in the book- panic attacks, rapid heart beat, insomnia, intense sweating, constant shaking, you name it. It took me 3 months to be able to leave the house. By March 2013, things started to settle down. I was told by numerous doctors that it was impossible that only a week of steroids could keep me housebound with side effects for three months. However, the more I learn about doctors, the more I understand that they are often useless and only add to frustrations. Many times, they are also completely unknowledgable and try to pass off their ignorance as fact.

    In March, I switched birth controls. I was on Loestrin 24 and was recommended to switch to Microgestin, which is the "generic." It's free, so I did that. That June, I noticed the inner corners of my eyebrows were starting to fall out. I was alarmed, but since I had such incredibly thick hair to start (think Lorde), doctors were not taking me seriously. Simultaneously, I was coming off of Celexa, which I had been on for only about six months before deciding to come off of it because it was useless. So medically, there was a lot going on during this time that caused constant stress. My skin developed horrible acne- deep, painful cysts all over my cheeks, jaw, chin, and neck. I had developed also what they call "steroid-induced rosacea" and ocular rosacea. My seb derm (which I had dealt with for years) also got worse. All of this happened over the course of a few months.

    By September, my beautifully thick lashes began to disappear as well. And then, I noticed more and more hair in the drain while I showered. As most women probably do, I freaked out. I began seeing every doctor out there. So many tests, so much blood drawn, even had a scalp biopsy.

    After visiting rheumatologists, endocrinologists, gynecologists, dermatologists, eye doctors.....everything in my blood is considered normal, besides a positive ANA. No found lupus, thyroid condition, hormone problem (I'm on birth control and there's no way to assess if I have PCOS unless I go off of it for three months), nothing. All I have to show for all of this is continuing skin problems (which have now left my once clear skin covered in scars, clogged pores, and acne) and sparse eyebrows and lashes. My scalp is thinning diffusely, but it is most noticeable at the temples and right in the center where my hair parts, towards the front.

    The scalp biopsy showed normal hair density (which is ridiculous because it might be normal for some people, but they have no idea what my hair started as, so normal means nothing) and very mild inflammation with mild miniaturization.

    I am 25 years old and have lost more than half of my original hair density. The most recent doctor basically let me know that they were not going to find the cause of this hair loss in my blood. There is no hair loss in my family on either side, going back to great grand parents.

    I am hopeless. After two years I have no answers as to why this is continuing. Telogen effluvium made sense, as I went through a horrible year last year, however, I was told that it would've resolved by now if that was the issue. There was also no scarring found in my biopsy.

    Please, I am in desperate need of some help. I have relied on my looks for my entire life, and I feel like I am nothing without them. I am losing confidence in myself. I don't know how to proceed now that I have exhausted all medical options. All of the hair on my body remains as thick as always (of course, why would I lose the hair that I DON'T want?) and so I am only missing hair in the places where it is most important to have hair. My skin is inflamed, painful, red, and scaly, completely covered in acne and red veins. I don't know what to do or where to turn next.

    I pray that someone will read this and reply. I feel like I am at my wits end with this situation, and it's hardly even noticeable to anybody else yet. I don't know what I will do when I can no longer cover these flaws with makeup. I have also not seen ANY stories online that correlate with mine. I have not seen anybody lose lashes, brows, and scalp hair without the presence of autoimmune alopecia.

    I will include some before and after pictures if it helps. Thank you so much to anyone who takes the time to read this and respond. I am deeply in need of encouragement and guidance.
     

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    #1 katiekins198, Nov 3, 2014
    Last edited: Nov 3, 2014
  2. alohakels

    alohakels Established Member

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    Hi katiekins198 ,

    My situation is different than yours (I'm suddenly losing tons and tons of hair in my bangs area, with a widening part and miniaturization) all in the matter of a couple months. No history of Androgenetic Alopecia in my family at all :( I'm also 25 years old. I'm so, so scared and I feel very similarly to you. I've always relied on my looks and my hair as my security blanket, and I feel myself slowly unravelling. I know it doesn't help, but your hair looks really great right now and I'd never notice your loss in either your eyebrows or hair. Try to take it day by day and appreciate what is there :( thats what i'm trying to do. I have no idea what to do to stop the loss. I hope you feel better. <3
     
  3. Jenk

    Jenk Established Member

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    You really need to start on a good regimen of vitamins. For all the stress you are going though I can't recommend enough Magnesium in a Glycinate form. This is absorbed much better than regular cheap magnesium that you buy in most drug stores (mine costs around 13 dollars a bottle). This calms the stress response and helps your hormones balance out. The pill is VERY VERY damaging to hair.. period end of story. It turns off your natural hormones and replaces them with fake stuff that doesn't really work optimally in your body. I take 400 per day of Magnesium glycinate and after years of docs telling me I HAD to be on the pill for bad PMS.. this has really helped!!!! It took a few months but it helped a lot and it helps with anxiety. I was on Loestrin. I found out after going off it and losing about half my hair in 2 months, that loestrin is THE WORST pill you can possibly be on for your hair. THE WORST! It has the highest androgen index, which are male hormones that can kill your hair if you are sensitive to it. You can lose your hair while on it or when going off. Mine happened when I went off. I had been on the pill for years before this round of the pill.. but it was Ortho Novum 777 and I never had hair loss from that. Still, if you want to be on the safe side I would up my nutrients to protect yourself and plan to get OFF the pill forever! I was off the pill for 3.5 years and the doctors talked me in to going back on it..my hair has always been thick and beautiful. One bald grandfather.. but my father had beautiful hair all his life til the day he died, so did his brother, and all their children. My mothers family.. NO hair loss. I never had an issue until I went off this pill. However, I am glad to be off it. The doctors would have kept me on it til I was in menopause if I let them. That would have been A LOT worse. Please look into this website, for insight into what The Pill, antibiotics, steriods and other stuff does to your hair and body and what you can do about it! Spironolactone is another drug that interferes with ovulation. You need to get your own hormones back on track. I don't know, maybe you want to wait until all the stuff from the steriods calms down- also, anti depressants are just horrible for your body. Find natural ways to deal, they absolutely exist. Unless you are a paranoid schizophrenic drooling on the floor.. you don't want to mess with that stuff. I would start nurturing my body and don't let the doctors treat a drug induced problem with another drug. That is a slippery slope. Ive been there.. even before I lost my hair. Irony was, that at a point in my life I decided I wanted to be on as few drugs as possible, which included the pill. I went off it and for the whole three years all docs did was try to get me back on it, and when they finally succeeded - this was the result. I can't even wear my hair down- since the first week of august- it's so uneven and thin. And, btw.. the pill has been closely linked to depression in recent studies and a permanent loss of libido! http://www.larabriden.com/causes-of-hormonal-hair-loss/

    http://www.larabriden.com/8-ways-that-magnesium-rescues-hormones/

    http://www.larabriden.com/the-pill-is-bad-medicine-7-ways-that-hormonal-contraception-harms-women/
     
  4. katiekins198

    katiekins198 New Member

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    Thank you so much for the replies!

    SarahS, your post today actually inspired me to create my own. Our hair loss pattern looked very similar and I had just gotten the news from my endo that we weren't going to find any answers. I will attach a couple of pictures to this message but for real, our pattern is more similar than anyone else's that i've seen. Have you had any change in your brow/lash density? That's honestly the most upsetting and noticeable part for me so far. As far as antibiotics go, I was on them a lot for my whole life for sinus infections. I'm on them now from time to time but not recently. I was on them, however, at the same time as I was on the steroid taper for pleurisy. Hmmmm. And I have IBS, so I worry if that also effects nutrient absorption. I mentioned that to my endo today and he said it was possible but since I haven't dropped weight recently it's probably not. Do you have any skin diseases btw?


    alohakels, thank you for the reply and well wishes. I also hope the same for you. This is so devastating, it's easy to stop appreciating that we still look normal while we wallow. Then I say, yeah, I look normal, for NOW, but we have to try and have perspective I suppose. :heart:

    Jenk
    Thank you for all of that great information! I had tried a few pills that made me barf or insane, and Loestrin worked wonders for me from probably 18 years old to 24. I am not sure that the pill is what caused this, but it's certainly something to explore. My hair loss is pretty slow compared to some others around here but it is persistent and my doctors worry that going off of the pill might cause it to fall out more quickly (just another shock to my system). I am planning to go off of it in January anyway. I had horrible cramps and irregular, heavy periods which is why I went on it at 18. I have heard that periods return to how they were before the pill once you stop, but that part would be worth the risk. Should I start taking magnesium now? I finally took my last dose of celexa 3 weeks ago and am having some stressful withdrawals. Would the magnesium possibly help that? I am like the queen of side effects from drugs so I worry, lol.

    IMG_1217.jpg IMG_1219.jpg
     
  5. Chamsgirl

    Chamsgirl Guest

    Telogon Effluvium

    This is my first time posting as I am new to this forum. I have been reading this forum and its one of the most informative ones out there. I suddenly started to have hair loss also. It wasn't in patches. It first started in my temple area and within a matter of weeks my entire head diffused. I swear it feels like I lost half of my hair density. Washing my hair seemed like a task, only because I knew I was going to have so much hair afterwards. Every time I brushed it there were tons of hair in the brush. If I even ran my fingers through my hair there were hairs between my fingers. I actually was told to count the hairs in the shower and there were 328 Telogen hairs (Hairs with the white bulb at the root). It was devastating.
    I went to a Dermatologist (one of the best around) and as told that I have Telogen Effluvium. He told me if I want to kick-start my growth I can use Women's Rogaine 2% Topical solution 2X a day. My GP also diagnosed the same thing. I have had my thyroid checked and a complete blood panel. All were normal. My ferritin was a 19 (normal range, although I think its on the lower side)
    http://www.webmd.com/skin-problems-and-treatments/hair-loss/effluviums

    My hair resembles yours Sarah and my hair diffused majorly in 4-5 weeks an it's still going. Both my Dermatologist and GP told me there is NO shampoo that will stop Telogen Effluvium. It is already in motion and has to take its course. Mine is caused by stress. I actually never believed stress could cause hair loss until now and to be honest with you its still hard to believe at times. I hate even looking in the mirror. I have days when I just cry and cry. I just wish it would stop. I also see new growth and some sheds and some stay (for how long I don't know)

    Anyway Sulfate free shampoos are best for your hair. You can Google them and see which ones are in your budget. I will be purchasing Pureology. Although it is a little pricey it promotes healthy scalp and hair and was rated one of the top shampoos for healthy scalp.
     
  6. mycurlyhair

    mycurlyhair Experienced Member

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    Sorry you are going though this! It is devastating, I know. :( My hair was always my best feature. I got compliments on it all the time. Curly, soft, bouncy. People use to touch it all the time. Now it is limp and thin. More so on the top. I was losing brows and lashes also. I have inflammation on my lids though which cleaned up alot with raw honey on them at night. My brows stopped flaky alot (still do once in awhile) since using apply cider vinegar on them. How is your diet? Sounds like you have alot of gut issues and is known to cause hair/skin related problems. Do you have alot of scaling on your scalp? How about mold around you? For me, this was the beginning of it. Plus being on antibiotics for years. Funny, now I have allergies to them and lots of other things I haven't before. Hopefully we can find fix for this together! There are also hair derms out there! If you go to carf.com and email them they will direct you to one.

    p.s Pumkin seeds are a great source of magnesium and zinc!
     
  7. samar2000

    samar2000 Established Member

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    Sorry about what you're going through Katie. I used to have a lot of hair, thick eyebrows and very thick long eyelashes. Also like mycurlyhair had a lot of compliments, especially about my long eyelashes, people used to think they were fake. Those days are over. Your story resembles mine, I'm also dealing with skin problems (Seborrheic dermatitis/possibly rosacea, blepharitis) and hairthinning (eyebrows and eyelashes as well) . My hair loss started the same day as my skin problems. I just woke up one day with very oily skin and hair (also burning pain + flaking), burning crusty eyelids. When I see your pictures , I have the same thinning at the temples, except mine is worse, and also diffuse thinning on my scalp. Yours still look fine, eyebrows too, but if you say you notice it's thinning it is, you're the better judge. when I first noticed my thinning , my GP practically laughed at me, then she told me it could be because I've had a baby (who was 2,5 then). Dealing with doctors like that is frustrating. It's important to find a doctor who stands behind you 100%.

    I keep bumping into sarah and mycurlyhair, seems like we're all sharing the same probllem. Welcome to our little group. Our hairloss is related to our skinproblems, I'm sure of that. It's very though to deal with all this, I have respect for all of you, I usually am really though bouncing back to the old me, but this is just dragging me down.

    I think Sarahs idea is really good, maybe we should write down what we did, ate, any changes , anything previous to our hairloss. There has to be something we all have in common that triggered this.
     
  8. Eunmi

    Eunmi Established Member

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    Just signed up to this forum. Thanks Samar for the advice!
    My story is kind of similar.
    Backtrack to about 3 years ago, I went through a bad break up, I stopped taking care of my hair.
    I went down to washing it once a week, couldn't get myself out of this depression episode.
    I've always had a somewhat oily scalp most of my life, never experienced hair loss. Ever.
    Over the course of 3 years, my oily scalp converted to dandruff, then a year later it converted itself into itchiness, scaling, and to being an overall pain in the butt.
    As I've said, never experienced any form of hair loss ever. No one in my family has a history of it either. I mean, my grandfather has a noticeable pattern, but he's in his 80's.
    Anyway, For the first 2 years when this stuff manifested itself onto my scalp, I didn't notice my hair density getting less. It actually wasn't until I moved about a year ago that I noticed it. Sad part is, I didn't start trying to go full on combat mode against this stuff until about 4 months ago. I did experience SD on my eyebrows, some eyebrow hairs came out, but grew back in. My scalp on the other hand is a complete nightmare. I've tried almost every OTC shampoo I could possibly think of, and started using tea tree oil as of yesterday. Some of the inflammation has gone down, so I have high hopes for it. I've lost about 30-40% of my hair density, but it's still not noticeable to anyone else but myself. My gyn ruled out MPB, since I told him my concerns, he looked at my scalp and said it's not in the noticeable pattern for it. I honestly can't tell if it's Androgenetic Alopecia related, since I have had almost 0 regrowth since the SD started, which i assume is normal? I'm not sure. I started freaking out a few months ago though. Some of the hairs that do manage to grow in are thin and weak. But I've read that inflammation is a common cause of thin hair growth, so maybe that's the case for me? I'm at a loss on how to resolve the issues. I think I'm going crazy. I had my labs done on the day I met my new pcp, my labs came back all reading normal, yet I was diagnosed with pcos at the age of 16 with slightly elevated testosterone levels. Labs came back normal for that, yet I don't ovulate. The only thing that came back that was a cause for concern were my vitamin d levels. My level was sitting at 16. My pcp told me to start taking 2,000IU's of vit. d3, but I don't think it's even enough to get my levels to budge. Since it's now winter. So i personally took it upon myself to start taking vit. d3 at 5000IU's for the next two months to see if it can raise my levels again. I have read that vit. d deficiency can result in hair loss, but I can't really tell if it's that. I never paid attention to my hair when this all started. I do have a derm appointment on the 31st of Dec. I did my research, he is board certified, so I know I'm not going to walk in and be pressured into botox like most of the doctors in my area love to do.
     
    #8 Eunmi, Dec 9, 2014
    Last edited: Dec 9, 2014
  9. samar2000

    samar2000 Established Member

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    You're welcome, eunmi. Thought it might help you, there are a lot of people with the same symptoms, maybe we can figure out what's going on or at least support each other. I wonder too if the miniaturization is caused by the inflammation. My appointment is the 22nd , I'll ask him about it, I hope he has a lot of time, because this time I'm not leaving before I get an answer to all my questions. I let you know. Keep us updated on your appointment. And welcome to the group.
     
  10. Eunmi

    Eunmi Established Member

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    I hope so! I'm sick of crying out in frustration every other day.
    For the last week I've found myself having a general feeling of "blah"
    It's really starting to affect my day to day routine. And when my routine is broken, I get even more frustrated.

    And I find myself editing again.
    But a quick question.
    When using tea tree oil for the very first time in terms of treatment for SD, is it supposed to get a bit worse before it gets better?
    I ask this because my SD spots seem to be a little itchy today. Unless it's because I'm huddled in my room with a blanket wrapped around me while sitting in the dry heat. (Hooray for winter! Not really).
    I did a spot test on a small spot that refuses to leave the very far corner on the left side of my temple. Had no adverse reactions.
    If anything, the inflammation had decreased drastically after about 2 hours when it was applied.
     
    #10 Eunmi, Dec 9, 2014
    Last edited: Dec 9, 2014
  11. samar2000

    samar2000 Established Member

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    I can't give you any advice on that, I'm using Tgel, I used it for a week, but my scalp feels like it's burning and itching again. I'm going to try regenepure dr , it's a anti-fungal shampoo without sulphates, it has some good reviews.
     
  12. Eunmi

    Eunmi Established Member

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    Ah, well, maybe I'll just stick it out for a couple more days and see if it gets any better, I did notice a slight reduction in inflammation on my scalp.
    The tea tree oil could possibly be drawing out what has been sitting on my head for so long.
    Hopefully once it goes down a bit more and wait it out for a bit, maybe I'll even see some regrowth. Assuming my issue isn't genetic related. Which I don't think it is, everyone in my family has a head full of hair, aside from my grandfather, but he's aged pretty well. It would suck being the only person in my family with this issue.
    Just trying to keep my hopes up. 3 days of being depressed about this is totally not me. :thumbdown2:
     
  13. samar2000

    samar2000 Established Member

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  14. Eunmi

    Eunmi Established Member

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    You watch, when I see the derm on the 31st, which luckily has over 40+ years of experience. It will probably be another vitamin deficiency to slap on my long list of supplements. Hopefully by then much of the inflammation has reduced. Since taking better care of my scalp, or at least attempting to, I never noticed any of my parts widening or anything like that, my crown is still intact, the only areas I suffer with hair loss is from the inflamed and scaled areas. Which is mostly near the nape of my neck, I can feel little hairs there, but they haven't grown. Also on the sides behind my ears. Keeping my fingers crossed.
    I hope your derm appointment works out well! :)
     
  15. samar2000

    samar2000 Established Member

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    Thank you Eunmi, and don't worry, I really think yours has something to do with the inflammation, mine I don't know , hopefully too, so it's reversible.
     
  16. Eunmi

    Eunmi Established Member

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    Quite honestly, I feel a lot more reassured since I started browsing this forum. Versus looking up everything online and reading major horror stories about hair loss. And the crappy websites that just make you feel worse or question your own sanity. lol
    This is what got me to the point to where I am now. You worry about one thing, then the next thing you know it's a million things.
     
  17. samar2000

    samar2000 Established Member

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    I know, I was also browsing the Internet, saw those awful pictures of women with Androgenetic Alopecia , reading horrible stories about hair loss. I'm staying away from those now, it does make you feel worse. I was starting to think I have diabetis or other serious health problems, just silly. Just stick with this forum, it's really helpful. Most stories on the Internet are nonsense or extreme cases anyway. Last thing we should do is stress. Once we know what's going on, it will get easier, just a matter of finding the right derm. My derm has been in the business for 40 years or more also like yours, so we are in good hands. Just make sure you have a list with all your questions, so you don't go home with questions left in your head. I'm not leaving the office this time without knowing what's going on, because I don't want to spend any more time thinking of what's causing it.
     
  18. Eunmi

    Eunmi Established Member

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    Luckily I don't have a problem with remembering my questions I have for doctors. My GP and gyn were actually surprised about how knowledgeable I was about the things I pointed out. I know in the long run I'm going to have to adjust my diet. My gp basically yelled at me for eating white flour carbs. So now I have to switch to wheat, and cut back on the sugar. I have no problems with either, I don't eat sweets that often anyway.
    Yeah, I ventured off onto google looking up anything I could about SD, then it went from that to hormonal hair loss, and eventually questioning myself if I had Androgenetic Alopecia.
    It basically sent me into a downward spiral of obsession that drove myself and my family nuts. I guess it's a good thing that I've heard good things about this derm. Luckily my insurance doesn't require a referral to other specialists, or it'd be even longer before I could see one.
     
  19. samar2000

    samar2000 Established Member

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    :D You sound just like me. My doctors were surprised too with all the knowledge I had about SD and hormones... I guess it's from all the researching. A lot of people in this forum seem to know more then any derm I've seen, sadly, makes you lose faith in doctors.
    I'm working on my diet too, but it's hard, I loooove food. But it seems to work for a lot of people.
    And about googling,I went the same road you did, looking about SD, ended up with hormonal hair loss , thinking I have Androgenetic Alopecia. That's when I started obsessing too, cried everyday saying I'm going to end up bald. I really think all of us went down the same road.
    My doctor was referred by a friend and she said he takes his time and listens.
     
  20. Eunmi

    Eunmi Established Member

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    Yeah. i was formally diagnosed with pcos when I was 16, but that was based off of just my hormone levels and a pelvic ultrasound. My gyn told me that it could possibly be something else that's mimicking the symptoms of pcos. But he has to backtrack my lab and ultrasound results to Albany in order to understand my current condition. My mom has pcos as well, but she luckily still has a head full of hair, hopefully it's the same for me! I also had low iron levels, but my doctor brushed it off like it was nothing and told me to eat more iron rich foods. So I'd assume my iron/ferritin levels may be low as well. But my gp didn't test me for it.
    It's a vicious cycle. I've been trying hard to avoid websites on all aspects. It's gotten to the point to where I don't enjoy my normal daily activities like drawing. I try to, but my mind wanders and I overthink.
    Luckily my mom worked with someone who had actually experienced the same thing I'm dealing with now. She told me that when her co-worker had the same condition, she was dealing with thin hairs growing in and shedding like normal, but they grew back a while after the inflammation had gone away. So I'm hoping it's the same way for me. It's been a bit reassuring, but the Androgenetic Alopecia thing still weighs on my mind.
     

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