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Just wondering....what do you think?
I have never had a diagnosis other than, TE or it is probably related to my thyroid. I have had hairloss on and off for years accompanied with scalp pain but it never LOOKED like I had anything wrong. Unlike most of the people I have talked to with AA, my hairloss had NEVER been in patches or spots. It is diffused. But it is getting wore by the day. I can sit for hours and take my hand down my hair and it comes out every single time. I have always wondered if it could be diffused AA and they drs just don't know after 5 biopsies. I have often wondered if I shaved it all off would it grow back instantly? Would that mean I don't have diffused AA? I would just like to know WHAT this is. Whatever it is , is sure is tough to deal with.
Replies to This Discussion
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Permalink Reply by Lisa Santer on
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Sometimes, I think the wondering is the toughest part. Personally, for conditions like this, I don't think the specific diagnosis matters all that much. Treatments don't vary that much, and aren't so effective anyways (unless of course your hair loss is a direct symptom of hypothyroidism). I hate how the quest for a diagnosis and/or treatment can distract us from the real question, how do we live rewarding full lives with whatever hair we've got right now?
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Permalink Reply by Chefpam on
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Right. Most people I know and have read about don't have this kind of hairloss with simple hypothyroidism. So I feel something else is going on but after a multitude of drs I am no better. My hair has responded well over the years with various doses of thyroid replacement. I did great on Armour before and now that I am able to get it again I expected the same situation. But ALL my hair is falling out. Because I have been through sheds so many times, we just thought this one would pass too, but it keeps getting worse. I am so tired..........wish I had the magic answer.
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Permalink Reply by Julie Koch on
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Hey darling. I have Chronic Telogen Effluvium and I feel your pain. It took 11 doctors in two different cities and 8 months to finally get some sort of diagnosis. As you know, I have the scalp pain as well. My doctor is sending me to a pain management clinic if I can't handle the nerve blockers. I too have considered shaving my head in hopes it would grow back like it used to be. I am not brave enough. I also thought that shaving my head would stop the scalp pain which is MUCH worse than the hair loss. But, I have a feeling the pain would still be there because my nerves are still there as well as the follicles. I also have Seb Derm on my scalp and it is very itchy. I also have nerve damage and just found out yesterday that my body isn't absorbing protein normally and my amino acid levels are abnormally low. I eat a lot of protein so they don't know what is wrong yet. Right now, I just keep my hair about shoulder length to avoid increase pain and I just take it one day at a time. I do a lot of deep breathing because it is supposed to help the immune system. Hugs.
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Thank you for sharing and a big hug to you. This is so miserable. I can't let my hair down for a minute or I am covered in it. I am watching it go rapidly. Day by day I look different. I have thought of every possible scenario but always come back to square one. I am getting nowhere with doctors and have wasted so much money. I have a lot of health problems but losing my hair on top of it all is almost more than I can take. I am literally afraid to touch it. I just want something to change, to be over, some way to move on. Do you know what is causing the nerve damage? It's like an alternative dr told me, no matter the result there has to be a cause...I am yet to get there though. Do you lose tons when you wash or comb? Wishing you the best.
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I don't think that the doctors honestly know. I think they are guessing it's nerve damage because they said that with all of my diagnosis, none of them should cause physical pain. I also could have something called Tactile or Cutaneous Allodynia? You may want to look that up and see if it relates to you as well.
My hair loss has been a tad better recently. It seemed to slow after starting Head and Shoulders for my Seb derm. I don't think I lose more than 100-150 a day. It varies. I seem to lose more on the really itchy days. I was prescribed 2% Ketoconazole shampoo for the seb derm but am scared to use it. Have you ever used it?
I am sick of this too. I broke down at work today and just cried. It is too much to handle. My life was going pretty good before this and now I really see no hope in my future. I don't SEE a future... I get so down and only want to sleep. If only it didn't feel like 100.000 hot needles in my scalp when I try to lay down. I know how you feel. I only comb my hair once at night after showering. I try not to look at the hair. I use a wide tooth comb and barely touch it. I don't touch it anymore after that and I let it air dry. I hate this as well and am lost as to what to do.. Love ya hun and hang in there.
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Thanks I will look that up. Wow, your loss sounds great compared to mine. My hair is literally coming out in handfuls. NO matter how many times I touch it over and over it comes out. I estimate about 500-1000 hairs per wash. There's no way I can count it. The way it looks changes daily. I am a mess.
I don't think I have ever used that shampoo. I have used Nizoral and some others. My life was like a fairy tale before my health problems got so bad and my hair. Now I don't know how to even begin to recover. I am trying, but not doing very well. Thanks for the reply and love. Hugs and prayers.
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Permalink Reply by anita martin rueda on
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hiii!! i would like to say so many things here!! but it is so difficult in english, well i shaved to 0 (2 times in a year ) it grew normal, but my hair was still falling anyway, i really think sometimes i got diffuse areata as well, my reason for that is that my analysis are fine and i am not taking any medications just vitamins and my hair still falling, at first was more than you about 600 and 900,but it was not a estimate, i was counting every hair that fell out, i am lossing right now 100-150 a day, i am counting it because the other way i think i am lossing more that reality, but i have to say i dont have enough hair left to a shed so strong like before ...so 150 hairs a day it is enough to not stand with normal hair a year,i will up my pics with shave hair when i find it, with that i know how long it takes to fall out my hair since it goes to telelogen ..i should fall in 3 months like normal but instead it falls in a 1 month since it goes to telogen...i know that for how big are the hairs when it falls, they are always shorter than the rest...i dont know if it is a relevant date but it how it is........with this problem i feel like i am living my own terror movie, starring by me...yujuuu :(. i just want to be a normal person with normal problems!!
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Thank you Anita for sharing this me. Your English is great, no worries. I have been shedding for years but nothing noticeable. But now, for 4 months, it is nonstop! I am so sorry we are sharing this burden. It is literally got me down. I too, just want to feel normal, whatever that is. I will be thinking of you and praying.
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