Dismiss Notice
Welcome! Please read this announcement regarding the new Forums: Click Here"

My TE (Androgenetic Alopecia?) story with updates

Discussion in 'Women's General Hair Loss Discussions' started by Lostinhairloss, Mar 1, 2017.

  1. Lostinhairloss

    Lostinhairloss New Member

    Joined:
    Mar 1, 2017
    Messages:
    19
    Likes Received:
    3
    Dislikes Received:
    0
    I'm 23 years old, and as everyone else here, experiencing hairloss. Have been lurking on this site for months, now decided to post and share my story. My hairloss began in late October 2016. I've been very sick in August, continued to feel like sh*t throughout fall. Had constant elevated body temperature, fatigue, no energy whatsoever. In october i got blood tests done, turns out i got mononucleosis in august, that's what kept my whole body in inflammation for 3 months. I was happy that i got answers, little did i know that the worst was yet to come. End of October my shedding began. Prior to that, i had little to no hairloss for 23 years. Maybe 1-2 strands a day. From one day to another, my hair started FALLING OUT. Arround 150 hairs daily. I know that a lot of you experienced much more than that, but my hair is fine and not that dense to begin with (that's why my "normal" daily loss was basically nonexistent), so that was huge for me. I was so so scared (still am). Quickly got the diagnosis of te, derm said it will taper off within 3 months, no worries. I also got a natural shampoo and ampulle that's supposed to be increasing blood circulation on the scalp. It was hella expensive, didn't work of course. As i read, this is a waiting game, today i'm in month 5 now, shedding is fluctuating but still going on, on better days 40-45 strands, on worse (particularly the morning after i wash my hair) 80-100.
    My derm saw me yesterday, took one glance at my scalp, said there's no definit test to see if hairloss is Androgenetic Alopecia related or just te, but the fact that it didn't stop by now indicates Androgenetic Alopecia. Told me to try rogaine and that's it.
    Although my hairloss IS more visible on my front, crown, temples, i feel like it's is totally diffuse. These areas appear thinner because they were thinner to begin with. I don't feel like my part is widening, i lost densitiy overall. Somehow this Androgenetic Alopecia diagnosis seems off for me. No tests conforming it, and i CLEARLY have an obvious trigger indicating TE. No family history of FPHL, however my dad has Androgenetic Alopecia. But don't basically all men have it by 60?!....
    All blood tests are fine, my ferritin is high (normal range). Hairs that come out are all very long with the white bulb. I see moderate regrowth, don't feel like they're miniturized (who knows though...)
    I will continue to update here if anything changes, will definitely post a succes story if i have one! For now i won't start minoxidil, afraid of the dreadshed...
    Any ideas? CAN it be Androgenetic Alopecia? If so, would i help my hair more if i started rogaine? Heard that the earlier you begin the better not sure if it's true though...
    Forgot to mention that i was vegetarian for one and a half year. In january i started eating meat again, hoping it would help my hair, no changes for now (although blood test showed no b12/iron deficiencies). I eat multivitamin, biotin, omega3 daily.
    I appreciate all your answers, big hug to everyone!
     
  2. Megan M

    Megan M Established Member

    Joined:
    Oct 23, 2013
    Messages:
    141
    Likes Received:
    3
    Dislikes Received:
    0
    Easier said than done, but try to be patient and eat lots of protein. Please keep us posted.
     
  3. losing_it

    losing_it Established Member

    Joined:
    Dec 5, 2014
    Messages:
    173
    Likes Received:
    25
    Dislikes Received:
    0
    I'm going to tell you something that you don't want to hear. I know because I was 22 when my hair loss began and I still struggle with it at age 28. But this is the cold hard truth. EVERYONE who experiences hair loss wants to believe that it is TE. Everyone. Why? Because there is a light at the end of the tunnel. Unfortunately, for vast majority of people, the hair loss will not stop. No special shampoo will stop it. No eating healthy, no praying to the hair Gods, no herbs, nothing. EXCEPT Rogaine, Spironolactone, certain birth controls, or perhaps PRP. I only tell you this, because I wish I had saved myself years of agony in hoping and wishing that I had TE. Like you, I had massive sheds, diffuse thinning, possible TE triggers, the whole 9 yards. The only thing that worked for my hair was Rogaine, and honestly I'm not sure that is even cutting it anymore.

    Please tell yourself right now that this is an issue that you will be dealing with for the rest of your life. As hard as it is, tell yourself that, believe it, own it, and start working on things that are proven with clinical studies. Drop all the snake oil. IF by chance you are one of the lucky ones who truly have TE and it stops the way it does for a very small percentage of people, you won't be disappointed that you believed that it would be a life long matter (you will just be happy that it's over). But... if it is life long, or many years ahead, you will be thankful that you didn't waste years of your life (and money!) believing that you could find the magic cure for it.

    I know this is not what you want to hear, and you might even be mad at me for typing this. I promise I am not trying to be mean; I just wish I had heard this when I was in the first 5 months of hair loss.

    Edit: Oh, and... of course, you should still eat healthy. It certainly doesn't hurt. But don't believe that eating healthy alone will solve all of the problems :)
     
  4. Chasrogers01

    Chasrogers01 Member

    Joined:
    Nov 30, 2016
    Messages:
    57
    Likes Received:
    6
    Dislikes Received:
    0
    Losing_it, have you come up with a plan yet? Why do you think the Rogaine has stopped working? Have you decided what to do about the IUD? Sorry for such personal questions.

    Lostinhairloss, listen to her advice please. Rogaine is not scary. I've been using it 4 months. I've seen some improvement. My shedding has completely stopped for now. I just don't understand what will happen long term. I guess no one can really predict that.
     
  5. Lostinhairloss

    Lostinhairloss New Member

    Joined:
    Mar 1, 2017
    Messages:
    19
    Likes Received:
    3
    Dislikes Received:
    0
    Thank you for your answers and i'm not mad whatsoever. I do feel like this is something i will have to deal with lifelong. Even if i'm lucky and this is just a temporary te for now, i've heard that if you get it once, it will likely happen again, and also that women with te are much likely to develop Androgenetic Alopecia sooner or later. I would upload pictures but i can't figure out how to do it on phone!
    Quick question: for the past 2 weeks I noticed that my hairloss seems to have a pattern. I wash my hair in the evening, the next day my shed is the worst, (not that bad though! 50-60 maybe?), than the next day maybe 20-30, and then, on the third day, it's not much at all! Maybe 10 strands? And than i wash it again.
    Did this happen to anyone else? Is this common for Androgenetic Alopecia? Or maybe (just maybe) is this a sign of recovery?
    Also, my scalp is not oily at all. I can easily go 4 days without washing. Does Androgenetic Alopecia always come with an oily scalp? Or does this mean nothing?
    Also, did you get a lot of regrowth with Androgenetic Alopecia?
    About the rogaine, i'm afraid that if i start it now, it will only work for a couple of years (if at all) and than i'll be left with no weapons against this mess by the age of 28-30. But this might not be true. Is it?
    Thanks everyone!!!
     
  6. losing_it

    losing_it Established Member

    Joined:
    Dec 5, 2014
    Messages:
    173
    Likes Received:
    25
    Dislikes Received:
    0
    No problem with personal questions! I pulled my own IUD out about 3 weeks ago. Still shedding, but it seems to be tapering off VERY slowly. Verdict is still out, but I am hopeful!

    - - - Updated - - -

    My guess (and this is a total guess) would be that on your non wash days, your scalp able to hang on to those hairs. On wash days, it forces them loose. Experts (and in my case, I agree with them) say that washing your hair more often does not cause more hair loss. All of my knowledge comes from personal experience and what I've read on the internet, so take what I say with a grain of salt.

    My scalp is not oily either, and I've always had regrowth throughout the entire journey. I don't know whether I have Androgenetic Alopecia or not, all I know is that this hair loss has been going on for 6+ years, and Rogaine is the only solution I've found that actually works. From what I understand about Rogaine, it is better to start early, because once your follicles have "died" Rogaine will not bring them back to life. Some people have been on Rogaine successfully for 20 years, so it doesn't have a magical time limit. Obviously, some people ultimately lose the battle, but that's not a guarantee.

    If I were you here is what I would do... eat healthy, exercise, use Rogaine. Watch your hair for 6 months and I can almost promise you will see a difference by then. If later down the road you feel you need something more than just Rogaine, consider anti-androgenic birth control or Spironolactone. But I think Rogaine is the best place to start. You can get the men's 5% foam in a generic name for like $30 for 6 months. That's $5 per month! If you decide to get men's generic rather than women's brand (because women's hasn't been around long enough to have generic), make sure to only use once per day rather than twice as the instructions will tell you. The 2% liquid caused me a lot of dandruff and I stopped using it due to that before I ever saw any improvement. It was another 8 months after that I gave the foam a shot.

    Sorry, long winded, haha. Let me know if you have any more questions!

    Edit: Just wanted to clarify... I said men's 6 month supply is $30, but it would be sold as men's 3 month supply. It would last you 6 months because women use half the amount men do!
     
  7. Chasrogers01

    Chasrogers01 Member

    Joined:
    Nov 30, 2016
    Messages:
    57
    Likes Received:
    6
    Dislikes Received:
    0
    Agreed! Rogaine works best when you still have hair to salvage. Maybe if you keep your follicles alive for the next 6-8 years, something better will be discovered. I know it's hard to accept. Just give it a try and don't skip any days for 6 months.
     
  8. Justiinaa

    Justiinaa Member

    Joined:
    Aug 8, 2016
    Messages:
    45
    Likes Received:
    0
    Dislikes Received:
    0
    Experts (and in my case, I agree with them) say that washing your hair more often does not cause more hair loss. All of my knowledge comes from personal experience and what I've read on the internet, so take what I say with a grain of salt.

    Anecdotal, but I would agree with this, too. I also have seb derm and my scalp is sensitive, so I need to wash at least every other day. When I do wash every day, I don't have an increase in shedding and sometimes I don't even shed very much at all on the daily washes. I tried going longer between washes but my follicles would literally start to hurt/feel sore and even though I didn't shed much on the days between washes, it was like it all culminated and I would shed buckets when I finally washed. Logically, I knew it was just the buildup from the last wash and it wasn't that I was losing any more than normal, but it was a lot psychologically, so now i do every other day and my hair shed during showers is normal and I avoid the painful follicles and greasy hair between washes.

    If you decide to get men's generic rather than women's brand (because women's hasn't been around long enough to have generic), make sure to only use once per day rather than twice as the instructions will tell you.

    This I would disagree with, though. Most derms will actually recommend you to use the foam 5% two times a day. Assuming you're not too tender headed and don't get too itchy/dandruff from using twice, I would say you should use it twice daily - although, of course, check with your derm. I have been to three derms, however, and a hair loss specialist, and all have told me foam 5% twice a day (and, for information sake, I still have a large amount of hair and no visible hair loss to others, though Androgenetic Alopecia was confirmed through scalp biopsy).
     
  9. Squareroot

    Squareroot New Member

    Joined:
    Feb 21, 2017
    Messages:
    5
    Likes Received:
    0
    Dislikes Received:
    0
    Lostinhairloss, I believe that my mononucleosis (we tend to call it glandular fever in the UK) triggered my hair loss too. From reading this forum it seems like a lot of people are told after a bout of TE that its "revealed Androgenetic Alopecia" but I've read about people with TE having difficulty in growing back their hair / thick hair which can end up mimicking Androgenetic Alopecia.

    Have a look at the drop-down tabs in this article: http://nomorehairloss.org/telogen-effluvium/
    http://www.beIgraviacentre.com/blog/hair-regrowth-after-telogen-effluvium/
     
  10. Lostinhairloss

    Lostinhairloss New Member

    Joined:
    Mar 1, 2017
    Messages:
    19
    Likes Received:
    3
    Dislikes Received:
    0
    Thank you girls for all your advice! My plan is 5% foam once a day, and i did find a generic brand which is quite reasonable for a 6 months supply! Original Rogaine is craaaaazy expensive in my country. This generic claims to be the same 5% minoxidil foam. Do you find generics to be the same? It's literally less than half the price of Rogaine.
    My derm still says that she's not sure of this Androgenetic Alopecia diagnosis and wants to wait out March before starting minoxidil so that's what i will do. Don't want to jinx it, but i feel like my shedding has decreased a lot for the past 5 days.
    I will write an update either with good news, or with my rogaine journey!
    Did any of you color your hair while shedding / Androgenetic Alopecia? I know that it would possibly make things even worse, but i haven't colored my hair since august and my ****ty dirty blonde growth just makes my self esteem even worse...i feel so ugly. I was thinking about a super gentle hairdye for women with allergy. Any thoughts?
    Thank you!
    Hugs everyone!
     
  11. Justiinaa

    Justiinaa Member

    Joined:
    Aug 8, 2016
    Messages:
    45
    Likes Received:
    0
    Dislikes Received:
    0
    You can color your hair normally :) That won't make you shed more or lose more hair. I color my hair, too, and asked all my derms if it was okay and they said yes, that I can continue to style and treat my hair normally (although, of course, high heat is not recommended for extensive use on hair). I colored my hair throughout the whole ordeal because, like you said, at least having my hair all one color made me feel a lot better about the way I was looking
     
  12. Lostinhairloss

    Lostinhairloss New Member

    Joined:
    Mar 1, 2017
    Messages:
    19
    Likes Received:
    3
    Dislikes Received:
    0
    I heard this too! I actually firmly believe that my hairloss was caused by that long, chronic illness. It took out a LOT from my immune system. I was so weak for 4 months, it was a battle to get out of bed every day. I can absolutely imagine that it shocked my system and caused hairloss. Don't want to jinx it but i feel like the shedding has massively improved in the last 2 weeks. Maybe the worst is over. Mono was definitely the worst health related experience i've ever been through!

    - - - Updated - - -

    I'm coloring it today, i'm excited but a little bit afraid. Wish me luck! Will update soon! :)

    - - - Updated - - -

    Squareroot, how is your hairloss going?:)
     
  13. Lostinhairloss

    Lostinhairloss New Member

    Joined:
    Mar 1, 2017
    Messages:
    19
    Likes Received:
    3
    Dislikes Received:
    0
    So the coloring did not change anything, i don't shed more than before. However i had a breakdown again (happens weekly), so so tired of this horrible condition. I don't shed much anymore. Probably around 30 strands daily. But even that is much more than before. At least it feels like so. Everyday i wake up hoping that today is the day when only 3-5 strands fall out (as it happened before October) and my life goes back to normal. And than i pull hair off my shirt, and i have to face that this is my reality now, and that i should be happy that only this much falls out and not 100-150...but deep down i just know that i will never be happy with that. Everyday hair on my clothes will be the reminder that i have hairloss.
    But i could be crazy too...i often think that maybe i did have this much hairloss before...maybe there has always been 20-30 coming out, i just never noticed it because i wasn't obsessing...because this is NORMAL.
    Does anybody else feel this way? Wish i could let go of this negativity...wish hair wasn't the focus of my attention...
    Btw my derm wants me to try vichy neogenic before minoxidil...it's expensive and i have no hopes anymore that it could work, but she insists...
     
  14. losing_it

    losing_it Established Member

    Joined:
    Dec 5, 2014
    Messages:
    173
    Likes Received:
    25
    Dislikes Received:
    0
    Wow, thanks for the info! I might try twice a day now since I have had no problems with once a day and my hair has been shedding a lot recently. I was always afraid to try twice per day (although I had considered it).
     
  15. rosebud089

    rosebud089 New Member

    Joined:
    Nov 11, 2016
    Messages:
    1
    Likes Received:
    0
    Dislikes Received:
    0
    I really relate to all of these feelings... like exactly. I've lurked on this board for awhile, but I really relate to your post so I wanted to respond.

    I've been meaning to post my story, but my strategy for the last few months have been to stop obsessing/counting my hairs/breaking down about my hair. I'm on the tail end of my hair loss (but I don't wanna jinx it) which started in late August 2016/early September and I stopped shedding so much like 2 months ago. I also have always had really fine hair, but a decent amount of it, but when it started shedding more (which was only like 50-75 hairs a day) it was a bigger deal to me than say someone with naturally thicker hair. And I've always loved my blonde fine hair, but I know my friends with thick dark hair wouldn't even bat an EYE if this happened to them...

    And honestly, I really think you lost more hair than you think before this began, like probably at least 50 a day! But of course you would never notice and I'm sure you washed your hair more vigorously, letting more hairs fall down the drain and brushed it with no care in the world pulling all those strands out, instead of letting them fall on your sweater. But when you're hyper-sensative to every strand you pull off your sleeve at this point, it's like each one is a reminder of this effing awful curse. I definitely still go through those feelings. But I also have A LOT of regrowth that I'm finally accepting is real. I'd say that's more important to focus on, because your hair is always going to fall out, forever and ever. As long as it slows down a little and your babies can catch up, that's all you need!! Have you been noticing any baby hairs popping around yet? It's going to take a long time for your hair to be totally back to normal and that you have to accept, but it will get there. I went through an ATE 3 years ago (which has made this happening again to me so much more depressing because it took at least a full year for me to totally have my normal hair back the first time). BUT it did all grow back by the time a year had gone by.

    Also, I know a lot of people recommend using Rogaine, but I never touched the stuff - it seems like theres too many cons to pros and I also already have really sensitive scalp skin in terms of getting itchy. To me it sounds like you just need to be patient and take care of your body and try your hardest to convince yourself your hair IS on it's way back. I also use viviscal because I don't know, it won't hurt you and I'm hoping it'll speed things up again!
     
  16. Lostinhairloss

    Lostinhairloss New Member

    Joined:
    Mar 1, 2017
    Messages:
    19
    Likes Received:
    3
    Dislikes Received:
    0
    Thank you so much for being understanding! :)
    I too feel like i probably alwasy lost at least 30-40 hairs daily i just never paid attention, so now when i lose around 40-50 that's probably just a little bit more than normal. If at all.
    Yes, i can see regrowth. I saw it from the 2. Month of my hairloss, it is growing, i just don't know if regrowth keeps up with the shed. Probably not because i feel like my hair is about 20-30% thinner than before.
    I never touched minoxidil either, i know that many many women have succes stories with it, but my gut is just telling me that this is gonna resolve itself with time. I just know that my body needs to heal, being vegetarian for a year and a half weakened my immune system because i wasn't paying attention of my nutrition. I have always been a very very healthy person, i never got sick not even a flue, haven't been to a doctor since 2007! (Prior to 2016 Oct i mean) than, after 8 months of not eating meat i got this virus that is proven that it only attacks a weak immune system. What i mean by all of this is that i know i caused this. I know my body needs to get stronger, i have only been eating meat for 1,5 months, it takes time.
    Hopefully by summer this will all be behind me. Until than, i use this vichy neogenic thing, we shall see how it performs. If nothing works, than i will try minoxidil. For now, i still don't consider this Androgenetic Alopecia.
     
  17. Lostinhairloss

    Lostinhairloss New Member

    Joined:
    Mar 1, 2017
    Messages:
    19
    Likes Received:
    3
    Dislikes Received:
    0
    Updating coz it's been a month. I don't really have good news... basically nothing has changed. I still have better days when <20 hairs come out, and bad ones, when a little bit more. For example today i put on coconut oil to nourish my ends, and while doing that 8 hairs remained in my hand. I used to put oil on my hair all the time before my hair loss, and i specifically remember that NO hair was in my hands ever. Or maybe sometimes 1. So no, things are still not back to normal, and honestly i don't really have hope anymore that they will be. As far as how my hair looks, it doesn't look any worse than in winter. Maybe it looks slightly better? I don't know, i have regrowth, but i feel like if the shedding doesn't stop, i'm not really out of the woods... Sorry to be so negative, this is not a good hair day for me :(

    - - - Updated - - -

    Also i'd like to add that i have 2 weeks left from my vicy treatment, after that i'm starting rogaine
     
  18. Chasrogers01

    Chasrogers01 Member

    Joined:
    Nov 30, 2016
    Messages:
    57
    Likes Received:
    6
    Dislikes Received:
    0
    Yes, start the Rogaine. I did not have a dread shed. My hair looks better after 5 months of diligent use. I'm hoping it improves more up to a year. Don't give up on the Rogaine until you have used it for 1 year every day.

    - - - Updated - - -

    Also, since starting Rogaine I barely shed any hair at all. I used to clog my shower drain. I know that my hair cycle has probably synced and I may shed some eventually, but the last 5 months have been great. The not shedding let's the growth catch up.
     

Share This Page