What would do?

Discussion in 'Looking For Advice (my story)' started by happytobeme, May 20, 2009.

  1. happytobeme

    happytobeme New Member

    Hi, I am very new to hair loss. About 5 weeks ago, I noticed I was losing alot of hair, but thought it was just the "change of season". Then 3 weeks ago, I lost so much hair in the shower that I got scared. I realized that I bald patches and by the following week, I could not wear my hair in a style that did not reveal baldness. :( I went to my primary care physician who did not even look at my head, but sent me on my way to get blood work- all of which came back fine. I then went to the dermatologist. He diagnosed me with telegon effluvium. At first I accepted this diagnosis, but researching it more on the internet and thinking about my situation, I am really starting to question if I have this. I have not been under severe stress, no medication changes, I have had the same job, no close family deaths, no operations. He feels that its stress, but I feel that stress so significant I would realize I have. I know what stress feels like because for the 2 weeks I watched my hair fall out in droves, I did feel stressed. I lost so much hair that I decided to shave it off and start fresh. Got a nice wig that I am struggling to get used too, but like all things, it will take time. It was too depressing to watch it fall out, plus I thought I looked pretty sickly with so many patches. Should I seek out another opinion? Are there any other tests I should request? More detailed thyroid tests? etc? Anyone else been a similar situation?:) Thanks
  2. finaleofseem

    finaleofseem New Member

    Wow -- that happened really fast! Question for you: are your bald patches kind of circular? And are they completely bald? Because if you're losing hair THAT quickly, it could be alopecia areata, which is an autoimmune condition.
  3. happytobeme

    happytobeme New Member

    Hope the picture attached

    Didn't really have a shape. Lost a significant amount in the back lower hairline and by my ears. ( I attached a picture to show you- I think (hope it attached right) This was the on the 4th day after I realized I had balding. I lost hair from the top so much so where I part my hair that I had patches of scalp. How would a doctor test for an autoimmune issue?

    Attached Files:

  4. Angela

    Angela Moderator

    You're hair may have had circular spots but the rapid progression of hair loss may make the round spots obscure. Basically they can all merge together to form a larger area of missing hair.
    If your doctor suspects alopecia areata, the doctor may order a fluorescent antinuclear antibody (FNA) test, which detects the presence of antibodies. If antibodies are present, it is a sign of an autoimmune disorder.
    Not every case of AA is autoimmune related. There are some people that have no clue as to the origin of their Alopecia Areata, Totalis or Universalis. The picture that you attached looks very similar to AA. They can also do thyroid testing as well.
    See if you can get the list of all the blood testing they performed. Its important that you keep copies of your blood work too, so you know exactly what they have tested you for.
  5. nappeal

    nappeal New Member

    You lost your hair pretty rapidly! Sadly it sounds like you were brushed off by your Dr, and I'm sorry for that. You MUST go see another Dr! Someone who will actually listen and take interest rather than automatically run tests on you. When hair falls out that quickly, there's definitely a reason for it.

    I'm sorry you've had to go through this, but I applaud your ability to just go and shave it all off! I'm giving myself a year for things to improve, and if they don't I'll be doing the exact same thing, so you'll have to let me know how you feel about it.

    Don't give up, and keep pressing for doctors who will be willing to help you out.
  6. finaleofseem

    finaleofseem New Member

    Sorry it took me a while to get back to you, happytobeme -- I can't access this site at work.

    I think Angela really did a good job (as always) with answering your question better than I could. For instance, I had no idea that AA wasn't always autoimmune! I also agree that your picture looks consistent with AA, specifically in the ophiasis pattern which involves loss primarily at the side and back hairline in a band-like pattern.

    I'm sorry this has happened to you at all, and particularly that it's happened so quickly.
  7. happytobeme

    happytobeme New Member

    You are angels!

    Oh my gosh, I can't express to you my sense of relief in reading your replies. Someone(s) who are truly listening and understands- thank you!

    Finaleof seem and all- I realized I am losing hair from my eyebrows ( they are looking my thinner) and other body parts all over. Is this typical of AA? I feel like I am just coming to terms with losing the hair on my head. How long is the shedding process? Is there a time duration?

    Nappeal- I agree with you that I have to go see another dr. I really did feel blown off. It frustrates me that doctors point stress as the first and only cause for things. Do you think I should go to another dermatologist or doctor first? Thanks for the kudos on the shaving- As I was driving home, I thought to myself "oh my gosh, what have i done? I shaved my head" But I know I made the right decision when I didn't cry after getting out of the shower. It was so hard to watch so much hair loss and so fast- I truly felt shocked by it. A major bonus: my hair is the first one dry at the gym * hehe*

    Angela- Thank you so much for the advise to get a copy of my blood work and for the information on AA. Does AA typically have such a fast fall out rate? Does hair loss related to AA grow back? Is a FNA done through blood tests?

    Sorry I know these are a lot of questions and I understand that you are not doctors, but you are listening and getting my thinking about what I need to say to a doctor who listen. Thank you.
  8. finaleofseem

    finaleofseem New Member

    Happytobeme:

    I don't know a ton about AA -- I have AGA myself, so most of what I know has come from meeting women on the internet who suffer from AA. What I DO know is that AA is unpredictable -- sometimes it progresses, sometimes it does not. Sometime people spontaneously recover, others don't. Sometimes loss happens quickly, and other times it takes a long time. From what I can tell, aside from actual bald patches (and this isn't even true in diffuse AA!) there doesn't appear to be much of a common progression.

    I don't say this to alarm you, because again, none of us can be sure what's happening with you, but sometimes AA can progress to become alopecia totalis, where all the hair on the head leaves, or Alopecia Universalis, where all body hair is lost.

    As with any form of HL, there's no for sure answer. I wish I could tell you what's going to happen, and when it's going to stop.
  9. Angela

    Angela Moderator

    Hi Happy,
    AA can progress to Totalis and Universalis. I have had both. It can go into remission and sometimes when it reaches the Universalis stage, many times it stays that way.
    You look stunning bald! I loved being bald. Shaving off the rest of our hair is strangely comforting because we are in control of it. We may not be able to control when it falls out, but we can control the rest.
    I have a blog site if you'd like to read a few articles I wrote about losing hair:

    http://www.alopecianmuse.com/women/does-hair-make-us-women/
    http://www.alopecianmuse.com/women/how-long-will-this-go-on/
    http://www.alopecianmuse.com/women/to-shave-or-not-to-shave/
  10. happytobeme

    happytobeme New Member

    Hi! Thanks for the articles. They were great! You are so right about going bald. I was beginning to think myself a little crazy at the sense of relief I felt about shaving my head- but you right. It gave me a sense of empowermentand relief to have control over it.