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What do you do when the doctors dont know what is happening?

Discussion in 'The Undiagnosed' started by sadlady, Feb 21, 2008.

  1. sadlady

    sadlady Guest

    So... I have to continue my story. This week i went to see my doctor, at one of Stockholms best clinics - I was really glad for this appointment since it ment that I would meet someone who knows a lot about different types of hairloss. In november I was diagnosed with Diffuse Alopecia Areata - and now I was hping to finally get some treatment for my hairloss (the doctor I met in november wanted to wait). And what happends? The new doctor is not sure it´s alopecia areata at all - actually he cannot tell what is going on with my hair. It´s not Androgenetic Alopecia (androgenic hairloss), it´s probably not Alopecia areata, it might be TE. But why am I shedding my eyebrows and lashes then (and I shed a lot in my lashes and eyebrows) - well, he just could not tell. It might happen in TE is all he said - if the TE is really bad (well, thanks for that!). And the really strange thing, is that I do have a small area that is bald - just a tiny little spot on the side of my head (over my ear) - and that looks like scarring to him. Well, this really made me freak out - and I asked him if it could be scarring alopecia. He could not tell, he hade to take a biopsy and would call me back in three weeks. But he said, that its probably a old scar, that I just have not noticed before. Well - I dont know. I just dont know what to think anymore. The worst thing is, that I have to wait ANOTHER three to six months before they will start any treatment - since they cannot diagnose my hairloss they want to see "what direction it takes". Well - thank you! Just what I wanted to hear. It also seems the dont think my hairloss is so bad - well, that is because i usually have a lot of hair - so much that my hairdresser used to complaine about it.... Well - what do you do? I dont know if I should laugh or cry. Or just be plain angry about it.

    Has ANYONE with TE experienced hairloss in eyebrows and lashes? Is it possible? :lost:

    /Sadlady (or, rather, angry lady today)
     
  2. Guest

    Guest Guest

    in my case, i lost all of the hair on my head and body. i have Alopecia Universalis.
     
  3. GoodYear

    GoodYear Guest

    Sadlady,

    Oh, what a story! You must be completely freaking out! I also cannot help you unfortunately, because i do not recognize your symptoms (i have Androgenetic Alopecia). I just wanted to wish you all the support you need!!! We are thinking of you. Lots of strenght!!

    And; please keep us posted, i am very interested what happens.
     
  4. angieangie

    angieangie Guest

    I have TE, and I used to have a lot of shedding in my eyelashes. I never had much shedding in my eyebrows, but when I would pluck them the hairs came out 100 times easier than they used to, so I'm guessing if you touch them a lot there might be more shedding.
     
  5. SAMANTHA07

    SAMANTHA07 Guest

    HI, I TOTALLY UNDERSTAND YOU.
    ARE YOU CONSIDERING SEEING ANOTHER DOCTOR?
     
  6. angieangie

    angieangie Guest

    I would see more than one doctor. Some don't know what they're talking about when it comes to hair.
     
  7. Deirdre

    Deirdre Senior Member

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    I'm so sorry for that reply from the doctors. Like it is going to make a difference what the hair loss does. Except to freak you out even more! I would think they could do a biopsy and rule some things out or at least try some treatments. I would guess you don't have much choice in hair specialists to go see, either!
     
  8. sadlady

    sadlady Guest

    Thank you for all replyes. I am actually starting to think that it is some sort of TE - I actually dont have much shedding in my eyebrows - but as you write, Angie, the hairs seem to come ou a lot easier when i pluck them (I have stopped plucking them, I kind of watch every hair on my body these days...). I do have a lot of shedding in my eyelashes, but they seem to grow in at the same time. I have been to three, now - four different doctors who all specializes in hairloss, and one said diffuse alopecia areata, two said TE, and the last one just did not know. It was the last one that took a biopsy, since he meant that the little totally hairless spot i have looks like a scar. Thanks god i dont seem to get any moore hairless spots - and the one i have is stabilizing (not growing). I have days when i shed som much hair (!) and orther days that are much better. Angei - since you have TE: is it possible to have TE for a long time (my hairloss started in mid october, so its been going on for five months now). I´m not working for the moment, for stressrelated ad anxiety problems, so i can totally relate to the fact that stress has a lot to do with my hairloss. Anyway - i am kind of giving up on the doctors, the last one promised to call me when he gets answers on the biopsy - after that i hope that they know more about whats going on and if theres anything i can do about it. Its horrible just to watch and do nothing! If they dont know whats going on and therefore can do naothing about it - well, in that case i am done with doctors. It just makes me so upset, its better to just start to tyr and live with it. Thank you again for all you´re kind answers!
     
  9. peekaboo

    peekaboo Guest

    sadlady,
    Do you take vitamins right now? I noticed when taking any type of vitamin, I had alot of eyelashes coming out. Also, when I became pregnant back in August, my eyelashes stop falling out and so did my eyebrows. I'm starting to think it's a hormonal problem, because I had a miscarriage in september and in December the lashes started coming out again! Have you had hormonal blood work done yet?
     
  10. angieangie

    angieangie Guest

    My TE has been going on for nearly 6 months now. It's not easy. How many hairs do you lose a day? Your hair loss does sound a lot like TE to me. I also have an erea with thinning hair where I have a scar.
     
  11. sadlady

    sadlady Guest

    I do take vitamins, especially zink and iron since i have had anemia for years. Now its much better (the iron level). I also try to eat better - i have had an eating disorder for years - i do eat, but not as much as i should, and in the end (just before the hairloss started) i ate nearly nothing at all - i was just to stressed out. I looked at youre pictures Angie, and it actually looks a lot like my hairloss! Except i have a spot on the back of my side that is much thinner than yours, thats the worst part and i am not able to hide it anymore. I am actually beginning to see some regrowht, especially in the forehead. But its not much compared to what i have lost....
     
  12. angieangie

    angieangie Guest

    I also had an eating disorder for a few years and I am recovering from anemia! :woot: I guess we're in the same boat. The spot on the back is probably similar to mine, only I had a ton of hair in the first place so it might look thicker. I'm taking 500mg of iron a day, and I've gotten my iron from 9 to about 60 in about 10 weeks. Do you take your zinc with iron? Apparently iron should not be taken with zinc because it reduces absorbtion of the iron. Do you drink orange juice with your iron? How much do you take daily?
     
  13. sadlady

    sadlady Guest

    I did not know you are not supposed to take iron and zink at the same time! Good to know - i will take my iron pills in the morning, and zink in the evening. I do take the iron pills with orange juice - and my iron level is much better today - in Sweden the doctors check two different iron levels - both has been low fore years for me. Now its much better - ive gone from 14 to 34 in one and from 90 to 140 in the other one. So my levels are more than OK now. I started out with taking three to four iron pills a day (i guess around 500mg), now i take one a day since the leves have gone up. I shed a lot of hair - somedays more, somedays less. The days that i shed more i´d guess its around 50-100 (really bad days even more). Other days its around 20-50. It always gets worse before i have my period, and then it gets better again. I have had all bloodworks done, and test of hormones etc - everything is perfectly normal and even better than normal. I have been tested for PCO - but its not that. Its just hairloss. And i used to have a lot of hair too! To that point that the doctor i saw last time nearly would not accept that i shed a lot of hair - but thats just because he has not seen me with the hair i usually have. Today is a bad day - its been a bad week, considering hairloss - i have shed a lot of hair and a lot of lashes. But it usually stops when i get my period - and then i shed less and less, until next period... But maybe i used to shed more hair during my periods prior to hairloss? it is possible- i probably just did not think about it. Anyway - i hope it is TE, and i hope it end soon!
     
  14. angieangie

    angieangie Guest

    I'm guessing that you went from 14 to 34 in your ferritin levels and 90 to 140 in iron levels. That's awesome, your ferritin is in normal levels, but you'll need to get it to about 60-80 for regrowth.
     
  15. Deirdre

    Deirdre Senior Member

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    Maybe because estrogen drops right before your period (or after childbirth) that is affecting your hair some. Although they keep saying that hair is preprogrammed ahead of time :dunno: It is so confusing! I always got migraines during my periods due to the low estrogen. Never noticed what my hair was doing....
     
  16. angieangie

    angieangie Guest

    I also shed a ton more when I'm PMSing. I always take and extra iron period a day when I'm on my period.
     
  17. Lee112780

    Lee112780 Guest

    That's rediculous that they won't put you on treatment. They need to...NOW. I took prednisone and even though I couldnt stay on it...it stopped my hair from coming out...but it took weeks to work...so if it is Alopecia...they need to start treating you right away. I would get a second opinion.
     
  18. angieangie

    angieangie Guest

    He should be at least trying stuff to see if they work to rule out what the problem may or may not be.
     
  19. sadlady

    sadlady Guest

    Yes - thats what i said to my doctor too! I really, really begged him to let me try cortisone shots (in case its diffuse alopecia areata), but he refused. He just said that i will have to come back in three months, and then (perhaps) he can diagnose my hairloss, and that any medications during these three months only would make it harder to diagnose what kind of hairloss i have. Well - i am going to the leading clinic in Sweden, and i am seeing one of the best doctors, so i´m sure hes right - and he really did understand how i feel about it, and really tried to comfort me - but that doesnt make the waiting any easier! So - i have to sit and watch my hair shed for another three months (that will make nearly nine months since my hair loss started) before they can do anything about it. Im used to have a head more than full of hair (usually i have really, really thick hair) - and now its nearly nothing left, its so thin - especially in the back of my head where i have a spot that just keeps getting thinner and thinner. Its about the same spot that has gotten thinner after my pregnancies (i have two children) - but ive never lost this much hair before! Its devastating! I understand that your hairloss is getting better Angie - when did it start to turn? Its been five, nearly six months now, and i am just waiting fort it to get better... If it is Alopecia Areata its a slow process - but its absolutly still active. What really drives me crazy is not knowing what it is!

    Its so good to hear that the doctors try to help you, Lee112780, i really hope it works out for the best for you! And its so nice of you helping me with information about TE Angie! Im lost in all this - and its really getting the best of me... But i am getting stronger - i dont cry as much about it as i used to in the beginning of my hairloss. Now days i tie a scarf around my hair and just try to not think about it!
     
  20. Lee112780

    Lee112780 Guest

    yes...they try to help me...but nothing works :(
    It does get easier with time though. Especially in my case...because this is the worst it could possibly get...I have no hair at all...no brows, no lashes. Everything fake.
     

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