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Discussion in 'The Undiagnosed' started by mom2kormas, May 7, 2008.

  1. sadlady

    sadlady Guest

    Mom, your hairloss looks kind of the same as mine, but you seem to have more density then me, and more hair over your ears then me. My thinning is worst in the back of my head, with a thinning spot (that rogaine only made thinner...ugh). I thought my hairloss was diagnosed as Androgenetic Alopecia (androgenetic hairloss), but today i got a call from my doctor and ive got a new appointment in the beginning of june, because the still cannot diagnoze my hairloss as other than "unspecific nonscarring diffuse alopecia", i do have some minituarization and early signs of Androgenetic Alopecia, but i do shed to much and have to much diffuse hairloss all over, so they want to see me again. So i do have early signs of Androgenetic Alopecia, but theres also something else going on, if i understand them right. This time i will ask them to do a biopsy - i think not knowing really is the worst part. My hairloss started as TE (at least thats what they think), so maybe you have TE? I know that TE can be really fast, but the good thing is that the hair grows back, it can take time though. Im going to see an endo today, ill let you know what she/he says about my hairloss, as it seems we have a similar pattern (or rather, no pattern at all - more diffuse and all over). Do you shed a lot? And how long have your hairloss been going on? (sorry for asking these questions - im sure ive read this somewhere, i just cannot seem to remember right now). I hope things will improve for you, i do understand more then well how youre feeling - hairloss can be really hard, and im sorry you have to go through this. I hope better times comes soon!
  2. mom2kormas

    mom2kormas Guest


    I do shed alot...'bout 100-200 hairs a day and a TON in the shower. I believe mine started as TE, too, and am hoping it doesn't turn into Androgenetic Alopecia. I have shitty insurance and the only derma that will take it is an ass, so I don't want to go back to him for a skin biopsy. I should be starting my new job soon and will have new insurance in 90 days. Hopefully, my hair will make it that long. In the meantime, I'm going to try and get back in to see my endo and gyno and see if there are any more tests I can do.

    I think I'm going to delete my pics cuz they are causing me so much anxiety. :(

    Good luck today and do let us know what you find out.

  3. michelesmith

    michelesmith Guest

    it does not look like Androgenetic Alopecia, it doesnt have the typical FP loss which is thinning of the whole crown, receding hairline, temples, i would bet my bank account this is TE which can cause exactly the pattern you have esp in the back, sometimes TE can take up to a year to stop shedding and longer to stabilize so hang in there!!!!!
  4. mom2kormas

    mom2kormas Guest

    Oh, I pray you are right Michele. It's so hard to keep a positive outlook when it's been going on for so long! At first the doctors acted like I was crazy and not losing my hair...don't know what they think you gain by making such a thing up? It's been going on for 2 years now, but I only stopped the Lithium 3 1/2 months ago, so you think if this was causing the TE, it may still take a while to stop? My shrink acted like I was crazy when I said I read it may take 6 months for the shedding to stop after stopping the med, but what the Hell does he know?!
  5. anniek

    anniek Guest

    Mom - I have almost the same loss pattern as yours. My "part" in the back of my head is actually more pronounced than yours and I have lost more on the top. I have TE due to taking Accutane. I am now in the 11 month of shedding. Your loss definitely looks like TE - (i have been to 5 derms/1 endo/2 hair specialists) and all have told me the same thing. TE with meds can take a LONG time to rectify itself so be patient. I was shedding almost 300 hairs a day and I'm down to 100. I too have the tingly feeling and recently noticed some tiny regrowth all over (it takes awhile to see since hair only grows 1/2 inch per month).
  6. curlyone

    curlyone Guest

    To answer your question about the blood work, I haven't heard of the first one but albumin is a protein that's very important, it actually helps keep fluid in your blood vessels (amongst lots of other things) hope that helps a little
  7. mom2kormas

    mom2kormas Guest


    Your post offers me some hope. Do you have any miniaturization? I don't know if I could spot it if I did, but I have short hairs all around the frame of my face? Are you using any rogaine or special supplements while you wait for the shedding to end? How long were you on the Accutane before you realized it was causing you hair loss? I was on the Lithium for 'bout 5 months or so. It may have begun sooner than that, but I had long hair at the time, and just thought it was normal shedding plus I had moved to a new state and a had a few other major things going on. I wonder if I should just can the stupid Yasmin and hold out a little longer to see if it is TE and resolves on it's own? Kind of sucks taking the pill when your hubby has a vasectomy! :woot:


    Thank you. I did end up googling it and posted a link. Have you ever had this tested? I don't think it's one they do routinely? I couldn't find much on the first one, either.
  8. Blue Bird

    Blue Bird Guest


    my fiance is "fixed" too and I am on the pill!!! I had to tell him I started it to "regulate" my moods and stuff...
  9. curlyone

    curlyone Guest

    I've never had it tested, but my first endo appt is in a week so I will get my first taste of being a pin cushion.
  10. Mom2 - your hair is almost EXACTLY like mine - I could have been tricked into thinking those were my pics. I kid you not - our hair is pretty much identical. Mine has been diagnosed as diffuse loss due to iron deficiency, stress as well as physical stress caused by a general anaesthetic and severe dental infection. Loss is slightly worse on the top, but widening of the part over the whole head signals something other than Androgenetic Alopecia (though Androgenetic Alopecia may be present in an early stage). Your ferritin is low and needs to come up - mine was 9 so was a bit lower but supposedly it can cause problems.
  11. sadlady

    sadlady Guest

    Mom, i do think you have TE, it sounds like that considering the shed and the meds youve been taking. Ive also read that it can take up to a year (sometimes even longer) for a TE to get better. And the TE goes on as long as the trigger exists - so if youve been om meds, its possible youve had TE for a long time (since starting the meds, and then it takes along time for it to regulate itself after stopping taking the meds). I think the new hairgrowht around your face that you describe is kind of typical for TE. I really hope, and think, that things will improve for you - the hardest thing in a TE (according to my doctor) is finding the trigger, and i think since you know what the trigger was, theres a really good chance that your TE will get better, and that you will regrow your hair. I did met an endo yesterday, and he took lots of bloodtest, so i will see what that shows, and im going back to se a derm (a new one) in june. All the best to you,
  12. GoodYear

    GoodYear Guest

    Hi Mom,
    My intuitition says the same as Sadlady. It could be the meds easily! And also: if you have equally thinning: it just dont think that is Androgenetic Alopecia. I have Androgenetic Alopecia and my hair is certainly not equally thinning. I feel, going with my hands through my hair, every where thinning areas more then other areas (I HATE that).
    But still, it sucks he. TE is terrifying! Now matter what the cause is...but....you might get regrowth then!!!!!
  13. RobinL71

    RobinL71 Guest

    My TE lasted for a year and a half... my recovery didn't begin until January... I thinned all over but it was most visible in the front and on the sides... up until a month ago.. the hair has thickened up everywhere except the front... it is just now started to fill in at the front...
    Hopefully this timeline will help you to understand that if it is an aggressive TE... it takes time to correct.

    I doubt that lithium brought on the TE as it is a salt... I think it's more related to your iron and to hormonal imbalance... and not all iron supps are created equal... I've tried many diff ones and the only one that seemed to work for me is called Blood Builder... it's a whole food supplement that has 25g of iron...
  14. mom2kormas

    mom2kormas Guest

    Thank you all for your replies. I am so hopeful that you are right and it's TE even though it is still just as devastating, to know there may be an end in sight definitely gets me through the day. I have been trying so hard to not run my fingers through my hair...a bad habit of mine. I really think doing this has exacerbated the problem and everytime I would come out with strands, I would instantly get in a depressed mood. After just one day of not doing it, I notice I feel a little better by not concentrating on it so much. My husband just read a book by Eckhart Tolle called "A New Earth: Awakening to Your Life's purpose". He's a famous author that was on Oprah. His other book was "The Power of Now". Supposedly, some eye-opening stuff in there. It's all about awareness of the ego and stuff like that. Deep shit! LOL

    Today I start my new job, so I'm hoping this will also help take my mind off my hair and some stress out of my life by actually having some income! Health store here I come!!

    Does your iron supplement really have 25g in it? The one I've been taking only has 65mg? Is it harsh on your stomach? Mine causes me some problems and I can't afford to be stuck in the bathroom on my new job! I have read numerous reports that Lithium is one of the leading medications to cause TE. Here's a quote from the North American Hair Research Society:

    "...The causes of telogen effluvium are varied and not always determinable. Common causes include childbirth or the cessation of oral contraceptives, surgery with general anesthesia, severe systemic illness including fever, thyroid disease and inadequate nutrition, especially insufficient intake of protein. A number of different medications have been implicated in the etiology of telogen effluvium. These include anticoagulants, retinoids (or excess vitamin A), Lithium and beta blockers among others. The list of potentially causative drugs continues to grow..."
  15. RobinL71

    RobinL71 Guest

    lol... oops... well it was like 4:30am when I wrote that last post... meant to say 26mg... but it has a high absorption rate...

    surprised about the lithium... first I've ever heard of it being a drug that causes hair loss...
  16. angieangie

    angieangie Guest

    Yeah, I got scared when I saw the 25g.... the pill would be as big as a granola bar!
  17. GoodYear

    GoodYear Guest

    About Lithium:
    It is the first side effect at dermatologic


    These kind of drugs are so famous for their hairloss. I am not suprised at all.

    Also I found, but not sure whether it is reliable:
    http://www.nami.org/Template.cfm?Sectio ... ntID=20820

    It says at side effects: that it is as a sign of hypothyroidism: hair loss.
    It that a clou maybe?

    And here it is says that lithium can induce the hypothyroidism. Interesting article:
    http://www.ingentaconnect.com/content/k ... 1/00221599

    It says among long term users it causes 12%-19% of the people hairloss. That is a very high percentage!!!!! So, Mom: please google more on this. You find lots of information. Try to filter the shitty sites...
  18. RobinL71

    RobinL71 Guest

    LMAO... Ang you are a trip girl...
  19. mom2kormas

    mom2kormas Guest


    That makes more sense! LOL I was thinking, "shit...I gotta get me some of that"! So, it doesn't matter so much about the mg's as the absorption rate, huh? Good to know.


    Thank you for all your research. Believe me...I've read EVERY article there is on the subject since this has been going on for 2 years now. I just kept being told the hair loss was due to stress, so I continued to take the Lithium thinking I probably wasn't in the percentile and I have alot of angry depression when I'm not on it, so it's been a pretty rough 3 1/2 months. I refuse to try anything else at least until this resolves itself cuz they ALL seem to have the potential. I asked my doctor if since one made me lose my hair, does that make me more likely to lose on a different med and he seemed to think that was impossible to know, so all set!
  20. alicat

    alicat Guest

    i can remember when my hair looked like that...

    i hope something works for you!! it's scary when the loss travels all over, like mine!

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