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Finally - my derm appointment *PLEASE READ - SO SCARED*

Discussion in 'The Undiagnosed' started by kitkatkitkat3, Mar 31, 2009.

  1. So, after a 3 month wait today I had my derm appointment. It was pretty much what I expected – an unsympathetic doctor who rushed me through as fast as she could.
    She took the full history of my hair loss, then looked at my hair under a bright light. Despite the fact I’ve had some regrowth recently, she immediately acknowledged the problem, but said it wasn’t possible to diagnose from sight as aside from Alopecia Areata, a lot of different hair loss conditions look the same. To my absolute infuriation she went on to suggest it was probably due to low iron! NO IT ISN’T! Yes, I had low iron last year, but I’ve been supplementing for a year now and my iron is now very high. Maybe it contributed to my initial TE but it definitely is not the whole problem. Still she took all my blood work again to make sure but I know it will come back normal!

    The only saving grace is that she’s booked me in for a scalp biopsy in 2 weeks and I’m praying this gives me real answers. To those who have had one:
    1) Did it hurt?!
    2) Did you get answers from it? What did they tell you?

    She told me if it’s Androgenetic Alopecia (which in her opinion is unlikely as all my hormone levels are fine?!) then my only real option is minoxidil. And if its diffuse Alopecia Areata then a topical steroid might work.

    I’m going to post separately about my minoxidil vs. supplemental hair dilemma!
     
  2. mandymane

    mandymane Guest

    Re: Finally - my derm appointment

    Oh boy, that sounds familiar. My doctor was sympathetic though and didn't tell me what she thought it was. She took 4 vials of blood and was gonna run iron, B-12, thyroid and something else, can't remember. She said she could see hair loss and it was very dry and brittle and I have the scalp burning as well. She didn't see any inflammation and that is why she thinks it is something internal but gave me Olux-E, a steriod foam to put on my head, I don't think it helps and is really greasy and my head seems to burn the next day more after I put it on, maybe it is in my head. I got back on Friday and depending on the lab results she had indicated she would probably do a scalp biopsy too. I am scared too. I don't know what to expect from a scalp biopsy. My hair is already so terrible and my scalp hurts so bad already, I can't imagine getting a chunk cut out of my head and what will it look like? I have nothing to hide it under, I need a topper, BADLY!!!!!! How bad is your hair loss?
     
  3. brokendreams

    brokendreams Guest

    Re: Finally - my derm appointment

    Sorry for the bad derm appt. they almost all are that way. One gave me olux a few years back for the nape of my neck, it didnt do anything for me and he said use minoxidil. then. He was a big specialist in Philidelphia. Ive personally given up on derms and go the dr route which is only slightly better.

    Good luck with the biopsy Ive not had one but people on here say it doesnt hurt so maybe youll get answers then. I hope so....
     
  4. mythreeboys

    mythreeboys Guest

    Re: Finally - my derm appointment

    Your biopsy probably wont be to painful if you get it in the standard spot (crown area). I had mine done on the nape. She numbed me then about 20 seconds later punch biopsied me. Now I did not feel pain persay when she was taking out the plug but I thought it was quite fast to be cutting into me - a few minutes would have been nice to numb. I had it out of the nape and as you know that area stretches and moves alot with turning of the head and such and the pain was excrutiationg for me. I had to take a left over pain pill from when i had my son. I did not even need pain meds after a baby. So anyhow that is my experience. I am sure your or most would not have this type of discomfort.

    The majority of Dermatologists tend to avoid scalp biopsies because they are a very messy bloody procedure. And many are inconclusive like mine.
     
  5. Re: Finally - my derm appointment

    Hi mandymane,

    Firstly, a scalp biopsy doesn't require "a chunk" of your scalp. It's virtually painless, it feels like a brief pinch.

    The only time a scalp biopsy would be bloody, is if the derm actually cuts a small vein by mistake. I required a few more stitches on my first biopsy because my derm did exactly that.....she cut a small vein! :shock:

    Frankly, that didn't bother me at all, because ALL I was worried about was finding out WHY I was losing my hair.

    The derm takes a small section of follicles and if you have any scabs, they take that too. It's best NOT to take a bald area, they usually take an area of hair loss which still has hair.

    Derms are used to taking skin biopsies, they do many for skin cancer screenings etc...most of them should know what they're doing. They do usually stitch the area after doing the biopsy.

    They numb the area, then take what is called a 'punch biopsy'. I've had four, they are nothing. I requested all the biopsies, I wanted to know what was going on, I honestly don't think a derm simply looking at a patients scalp or just doing the 'pull test'....can provide any definitive answers.

    You have to also remember....it's the pathologist who is actually analyzing the scalp samples, so figure that into the equation when you get your results. The derm simply reads his/her results. :(

    My derm read the results of the two pathologists she used on my four biopsies. Telling me, "They are both excellent doctors." The reason she used two pathologists, to compare results. It's not actually your derms results, since they aren't doing the actual biopsy tests.

    I supposedly have Androgenetic Alopecia . Since I've complained to her about constant shedding going into 5 years, she recently told me, "You might also have Chronic Telogen Effluvium." Great, huh? Then she added, "You'll never go completely bald. " Gee thanks, doctor! This is the same derm who didn't notice I was also getting a receding hair line, now that's it's gotten worse since September 2008, she suddenly CAN see it!


    Hi kitkatkitkat3,

    >>The only saving grace is that she’s booked me in for a scalp biopsy in 2 weeks<<

    You went to see a derm, yet they are making you wait ANOTHER 2 weeks to get a biopsy? Doesn't this derm do her own biopsies?

    That reminds me of when I went to get a second opinion from a different derm....this derm didn't do any biopsies. She then sent me to my surgeon! He, in turn, refused to do that biopsy...I finally ended up going back to my original derm because she's the only doctor willing to order the more advanced blood tests, as well as doing the biopsies herself!

    Yes, this is ALL pretty exhausting! And it's hard to take....but this going-into-five-years journey has taught me...most doctors are totally clueless about hair loss, even the so-called hair loss experts.

    They all seem to repeat info we know already!
     
  6. Blue Bird

    Blue Bird Guest

    Re: Finally - my derm appointment

    I had 2 biopsies done on my smooth bald Alopecia Areata spots. They took big chunks, about the size of a pencil eraser.... . It didnt hurt right away but it was sore the next day and for a few days. Just take some asparin the next few days after the biopsy.

    Good luck!!
     
  7. mythreeboys

    mythreeboys Guest

    Re: Finally - my derm appointment

    She must have hit a few veins on me :sobbing:
     
  8. vaso

    vaso Established Member

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    Re: Finally - my derm appointment

    Me too.

    I had two biopsies done at the same time, my doctor's reasoning was that sometimes one biopsy may not reveal the whole truth and 2 are needed to confirm diagnosis.

    In my case the biopsies didn't hurt, the local she gave me pinched a little but i could feel her doing it and mine came back confirmed Androgenetic Alopecia.
     
  9. Deirdre

    Deirdre Senior Member

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    Re: Finally - my derm appointment

    My biopsy didn't hurt although it was a little bit sore the next day but nothing I needed to take an Advil for, even. I had him take three different places to be sure to get an accurate picture. They put a stitch in that you have to have taken out later on- no biggie. Only the stitches were blue plastic which I noticed later sticking out of my head and had to trim them down!
     
  10. Re: Finally - my derm appointment

    Okay thanks girls, I wont stress about it too much then, seems like it wasnt bad for most of you. I will be having two punches taken apparently - I think it will come back Androgenetic Alopecia. But I seem to be shedding again so possibly something about that will come back too. I just want answers - I even feel like I could cope with Androgenetic Alopecia better than I can cope with no diagnosis at all!

    Mandy - my hair is not bad at all. In fact I've had some improvement (I posted pics recently) though since then in the past couple of weeks my shed has rocketed and I seem to be losing a lot of what was quite weak new growth. I feel so sad, but not panicky like I was first time.

    As I walked through the hospital to my appointment I passed the cancer wards, then the bereavement offices and prayer room and it was a good reality check for me. This absolutely sucks, but it could be a lot worse.
     
  11. Re: Finally - my derm appointment *NOW WITH SORT OF DIAGNOSIS*

    My biopsy is due to take place on Tuesday.

    In the meantime my dermatologist has written to my GP (and copied me in) telling her of a primary diagnosis of non-scarring alopecia. She describes loss as focused in the temporal region of my scalp and thinks that topical steroids may be the best option for me - this suggests she thinks I have diffuse Alopecia Areata and not Androgenetic Alopecia....I suppose only the biopsy will tell.

    Diffuse Alopecia Areata..... :sobbing:
     
  12. Re: Finally - my derm appointment *NOW WITH SORT OF DIAGNOSIS*

    I hope that you are able to get an answer.

    I sometimes wonder if getting a correct diagnosis would help many of us grieve and accept our hair loss. The not knowing and constant "waiting it out" is very difficult.
     
  13. Blue Bird

    Blue Bird Guest

    Re: Finally - my derm appointment *NOW WITH SORT OF DIAGNOSIS*

    what is the temporal region kitkat?

    Your hair looks so good though... :dunno:

    I think diffuse Alopecia Areata is rare though hun...
     
  14. alicat

    alicat Guest

    Re: Finally - my derm appointment *NOW WITH SORT OF DIAGNOSIS*

    I agree so much with you!!! Even though I say I have come to terms with my hair loss, I guess I am sort of lying because I wish so much I knew why I have like no hair left anywhere on my head :shakehead: If I have Androgenetic Alopecia, I have a pretty bad case (considering a lot of women thin on the top, and not all over like me). Oh woe is me ....hehehe!
     
  15. angieangie

    angieangie Guest

    Re: Finally - my derm appointment *NOW WITH SORT OF DIAGNOSIS*

    I highly doubt you have diffuse Alopecia Areata. Your pattern is so much like mine, even the baby hairs, the iron deficiency, everything! My hair has improved so much, and I remember your hair loss starting after mine, so it's normal that it's not quite as thick as mine yet, but it's getting there so fast, and the pattern and quick regrowth just scream TE to me. Do you have PCOS too? I forgot :$ if you do, then even more reason.
     
  16. Re: Finally - my derm appointment *NOW WITH SORT OF DIAGNOSIS*

    Sheddy/Ali - I agree, a diagnosis would really help me to make my decisions etc and just to *know* what I have.

    BB - yeah, it did look better for a while (going down again now I'm shedding) but only in terms of scalp coverage - the overall volume is just pathetically thin, my ponytail is so embarassing and stringy I wear extensions just to make it look like an averagely 'thin' one!

    Angie - I think you're a sweetie but I dont agree with you that we're similar! You had 10X more hair than me to start with and I appreciate your hair has thinned out but it is still amazingly thick, your latest pics on fbook show the most incredible bangs I've ever seen - I know you say its cos you start them high but if I did that you'd still see straight through them! As far as I know you def haven't had a big balding spot at the front and streaks of scalp showing along the sides when you tie your hair back...

    I'm not for a minute claiming my loss is severe - it is mild, no doubt. But I dont think comparing hair loss to guess the cause is a useful exercise as everyone is different. Diffuse Alopecia Areata is rare (though I suspect its more common than is diagnosed) but somebody has to get it!!
     
  17. angieangie

    angieangie Guest

    Re: Finally - my derm appointment *NOW WITH SORT OF DIAGNOSIS*

    Nono, I meant the pattern, not the thickness. But I did used to have very see-though sides of my head, like over my ears... I still can't tie it half up because the top of my hair is so thick, and the bottom is so thin.

    But if I start my bangs where I used to, or slightly high up, they are see-through... even now they are, if I don't put powder in my hair and thickening spray.

    I just think it's not TE because all the parts that are thinner for you were my bad parts as well when my hair was thinning. I also have the thinning spot right in the middle of the front/bangs under the bangs I create. It's annoying because it creates a part in my bangs and I have to push them together all the time.
     
  18. sadlady

    sadlady Guest

    Re: Finally - my derm appointment *NOW WITH SORT OF DIAGNOSIS*

    Hi KitKat,
    im so sorry you have to go through this - hairloss really sucks! If its any comfort to you, i did, in the beginning/middle of my hairloss (that lasted for about a year, before the shedding SLOWLY tapered down, with some periods with higher sheds in between) get a "maybe its diffuse Alopecia Areata"-diagnosis from my derm (the first derm i went to). The second derm i went to, to get a second opinion, said that it wasnt diffuse Alopecia Areata, rather TE (the second derm was the one that got me to start using rogaine, and the same one that said that the early signs of Androgenetic Alopecia i had before using rogaine, is now gone). The second derm specializes in hairloss (working in a university hospital), the first was just a "regular" derm. The second derm was without a doubt better than the first - he was the first derm that actually seemed to know a lot about hairloss. What i wanted to say by this, is that diagnosing hairloss seems very hard, and i hope that youre biopsy will give you answer to what kind of hairloss you have - i know, all to well, how hard it is NOT knowing what kind of hairloss you have, just all these "maybe that" and "maybe this". A diagnosis at least gives you a chance to do something about your hairloss - if its steroids, or rogaine, or if you choose the natuarl way, you at least know what it is you have, and what options you have, and that gives some kind of peace (at least it did to me). All the best to you, im thinking of you,
    /sadlady
     
  19. alicat

    alicat Guest

    Re: Finally - my derm appointment *NOW WITH SORT OF DIAGNOSIS*

    Hey Kit---I can totally relate to your pattern of hair loss. Mine has always been "streaky" and all over too. Makes it REAL hard to style, eh? If the hair could thin in ONE area, fine, but all over? Bummer.



    I think even having a diagnosis, you have to be prepared for what COULD happen. My hair loss started off like yours (not to scare you sweetie!!!), and now it's, well, you know! I wish I had been as vocal and concerned as you are about your hair. I didn't get my first wig until my hair was sooooo thin. I think you are doing things right!
     
  20. Sara

    Sara Guest

    Re: Finally - my derm appointment *NOW WITH SORT OF DIAGNOSIS*

    I am glad you're on the way to a definitive diagnosis.

    Who did you see and where?
     

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