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H. I'm Back.

Discussion in 'Women's General Hair Loss Discussions' started by LadyGodiva, Dec 4, 2012.

  1. LadyGodiva

    LadyGodiva Guest

    Hi. I'm Back.

    It's been a while since I posted on this forum. Actually, it coincided with the change of forum format, etc. and I tried to stay away from hair loss related anything to calm my dangerously overwhelming anxiety symptoms. I have no idea how long it's been, but months?

    Anyway, I'm here to share that my hair loss has NOT improved. In fact, it's still a mess. It's now been shedding like MAD for 2.5 years, all started by being on Synthroid. Boy do I regret that decision.

    About 6 weeks ago, I finally decided this waiting for the hair to fix itself thing is not working, either. I've tried lotions, potions, prayers, herbs, supplements...nothing. So I went back to my GP/supposed naturopath and he said we should try Nature-Throid. For those unfamiliar, that's a natural dessicated form of thyroid medication, similar to Armour, but supposedly even less harsh.

    My thyroid levels are really so very not bad. I'm barely subclinically hypothyroid, and I wish to GOD I had never messed with that gland. But now, I don't know what else to do.

    So I began the lowest dosage (1/4 grain, roughly equivalent to 25mcg of Synthroid) 6 weeks ago.

    Within 2 days, the side effects were NOT good. First, I began having heart palpitations. Then, every time I took the pill, I zonked out and had to sleep for 2-3 hours minimum. Also, my menstruation began within 2 days (it wasn't due for another 12 days) and the bleeding was crazy heavy.

    Um, WTH?!

    I went back to the doctor 2 weeks after starting and told him all my above symptoms. He said perhaps I should give it just a bit more time (hello, I'm dying here...). He said if not, then he could switch me to Cytomel (T3 only) but I told him I'd read that the side effects of THAT are heat intolerance (I already have this), edema (already have this), and hair falling out. Uh, no. But I said I'll think about it.

    It's now been 6 weeks and I've continued on the Nature-Throid, same dosage, out of desperation. I check my hair all the time to see if I see any regrowth, but that's pretty much impossible considering that my hair loss has INCREASED in the past 3 weeks. Jayzuz.

    Over the past few days, I've had some added stress and serious ovarian pain during ovulation, and my hair loss today was CRAZY. We're talking ropes and ropes, and mostly from the back of my head.

    I bit the bullet today and did what I've been avoiding for the past few months - checking the back of my head/nape of neck for hair loss. I already FEEL the gap of hair, I just didn't want to look - my emotions can't take the pressure. :(

    But I did look and OMG, nearly passed out. One side of my head, at the nape, has lost hair and my hairline there has gone up about at least 1.5 inches. WTF, you guys?!

    I am *this* close to getting off the thyroid meds. This cr** is making things WORSE.

    I'm getting tested AGAIN for my thyroid levels on Thursday - I am getting tested so often, I'm now anemic without a chance for recovery - but after seeing if the Nature-Throid has done ANYTHING for my thyroid levels at ALL, then will proceed from there...but not sure to where.

    On paper, I look SO GREAT. I look the picture of HEALTH, on paper. In life, I look the picture of death...and everyone says, "You're fine". I'm not...I'm really not.

    I went to see a new OB/GYN last week. He's supposed to be a genius, but he was actually an idiot. So much for people's referrals...

    Anyway, I was telling him about my hair loss issues and of course, he recommended BCP. Uh, no, Hair fell out worse on that.

    I then tried to ask him - as I've asked every doctor and each has a different answer: WHICH hormone comes into play during ovulation and the first half of the menstrual cycle? Because that's when my hair loss is unbelievably scary. WHICH ONE? One says both hormones go down during that time; another says it's Progesterone. Another says Progesterone actually goes up. WTFF...doesn't anyone know their own field of study??

    SO I still don't know the answer to the above, but I do know that's when my hair loss is worse. I never had hair loss issues before Synthroid, I want to again reiterate that. But whatever that piece of *^&^( has triggered in my body (because my scalp is almost always an angry pink, too)...my hair is now hormonally extra sensitive. So the 12 days before my menstrual cycle, my hair loss is insane. I don't know...if I knew what happens and which hormone gets nuts at that point, I'd work on THAT. But I don't know.

    That's where I'm at.

    I wish I could come here and share good news. I wish I could have answers for others. I wish I could go back in time and never take that stupid, tiny little pill that has turned my entire life upside down. But I can't.

    This is my life - and it's miserable.

    So...for anyone who wondered, or for those who PM'ed me (thank you muchly), and for anyone else in a similar boat...you're not alone.

    I just wish we all knew W.T.H. is going on.

    I can't believe this is my life now....
     
  2. cbradley425

    cbradley425 Guest

    were you the one i read that was diagnosed with scarring alopecia? are you being treated for this? you can take all the thyroid meds in the world and i hear scarring alopecia won't improve unless you're on some sort of crap like plaquenil or cyclosporine or ridiculous amounts of prednisone. i'm currently in the process of trying to get a damn doctor to diagnose me with it since i know it's what i have. also - have you ever taken accutane by chance? i just learned this is probably what has killed my scalp and is causing my hair loss. permanently. i'm really f*ing fed up with worrying about this. i'm sorry i have no good advice or anything at all to give you, but i know how it feels. unfortunately (or maybe fortunately) i've lost most of my hair in three months to a horrible itching and burning pain that started after i went to a hair salon. all bets are on that my sebaceous glands are fried (thanks to the accutane) and my hair is complete toast. i'm ready to shave it, get a wig and get on with my life because this is killing me. and it's not fair. and it sucks, and hair is important, believe me, i'm a 24 year old girl - i know it more than anyone. but it's NOT worth being miserable and obsessive over anymore. it just isn't. i want it DONE with if it's the direction i'm headed towards anyways. i feel the same, i cannot believe this is my life either. but the crap part is that it is - i know, i hate when people say this to me too. but i'm ready and willing to accept a new me (or try to) if it will make me stop counting hairs and staring at my thinning and feeling for tips at the end of each hair. maybe since yours has progressed pretty slowly, you can keep trying. me, i'm pretty much done. i can't believe how much my life has changed and how much this has changed me in just THREE effing months. this is horrendous, but i'm not willing to feel like crap about it anymore. time to be brave, i think. good luck to you godiva. i wish i had better words for you.
     
  3. Din

    Din Established Member

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    Hi LG,

    I am so sorry to hear that things are not better for you. I actually tried to PM you back after I wrote to you but your box was full so I could not send anything to you.
    I do hope that somehow you will find some answers, but I think that when it comes to hair loss, there are no answers. Its a sad place to be.

    do you think that maybe your hair loss started by taking synthroid, but now became cte despite the fact thatyour thyroid is ok? at this point, I dont think that you should try taking any meds, vitamins etc to try to combat this, because I think that it is actually making thinsg worse. Once hair loss is turned into CTE, there is nothing we can do to stop it. I guess maybe over time, we could be lucky and it could stop, but I never see any success stories, so I dont really know what happens. But I also do not know how one can lose hair for a long long time and not go bald. so maybe hair is growing back , but we just cant see it. But regardless, I think it is better maybe not to take any medications. wait to see how your thyroid is, and maybe reduce the cureent med for it? it si clearly not helping the situation now so nop point in taking it.

    do you find that you have crawly creepy feeling on your scalp? any itching or pain?

    Are you losing brows, lashes or other body hair?

    Do you find that your hair texture changed, like the hair strands are finer and thinner then they used to be? I think these are just just symptoms of cte.

    I wish I had the answer to give you. I keep hoping that this will stop one day,and we should just keep hoping that maybe it will. One day hopefully we will laugh at this.

    I hope that you are ok, hugs to you....And I do hope you will one day soon post some good news here. But please know that you are not alone. We are all suffereing the same pain as you...somehow or other , we will be ok,

    Hugs,
    Din
     
  4. fleur1979

    fleur1979 Experienced Member

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    Oooow, so sorry you are still dealing with this hair loss....

    I also can't believe how much this hair loss changed my life in two years time...

    I went to a new derm last week who diagnosed me with CTE.... it seems a never ending story.
    She told me it can go on forEVER!! Not very reassuring....
     
  5. Lost

    Lost Guest

    Lady G I also tryed to pm you but your inbox was full....I'm so sorry things have gone from worse to bad for you(((hugs))) as you see I'm still here too and not posting anything positive thats for sure!!! But I do come back to check on the ones who have helped me ( your one of them) and to offer any help I can to the new girls who are just starting this hairloss hell!!! I still struggle daily with this and I know MY hair is never going to be what it was but.....i can dream! take-care D.
     
  6. Din

    Din Established Member

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    Fleur,

    What do you mean she told you this can go on forever? I mean, if this went fora few more months I will not be able to leave my house, how in the world can this go one forever? I could just about die!!
     
  7. fleur1979

    fleur1979 Experienced Member

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    Hi Din, that is what she told me, but i don't really believe dermatologists anymore. She also told me minoxodil can help with CTE (but i will not use that stuff). She basically said that ones TE becomes chronic and you don't have an obviuos trigger (like series deficiencies in something, thyroid-problems, preganancy, or whatever) it can go on forever... She also told me that sometimes it can end, but sometimes it just doesn't....

    Maybe one day it will stop... I am giving my hair till summer after that i go into bonding toppers. (My sides are also very thin, but i guess bonding a topper will at least cover that part too...)

    Is your hair getting any better, staying the same or getting worse?
     
  8. Din

    Din Established Member

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    Hi Fleur,

    I do hope that your drem was wrong. I cant iamgine another day of this, let alone the rest of my life..

    I will try to go see another drem to ask them about CTE...not that any of them can help. I hate doctors now, they are justall ignorant.

    My situation is the same. day in and day out, week after week, month after month. I wear my hair up in a cllip most times, at least I dont have to deal with falling hair on my clothes and at least I can hide it better. My hair is thin, I lost 50% or more, but still, most cant tell I lost hair. But I will never wear it down anymore...It feels like a feather. I want my hair back so badly but each day that passes I know that most likly it will never happen. I am still losing brows and lashes, as if losing hair wasnt bad enough. Do you lose any brows and lashes?

    Din
     

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