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Boy, do I feel like a freak!!!!

Discussion in 'Women's Alopecia Areata' started by Cat, Jun 22, 2006.

  1. Cat

    Cat Guest

    I have been trying to convince my primary care dr. to refer me to an endo. I feel certain that my hair loss is related to my discontinuation of birth control. So, finally I get a call from the endo......they do not treat alopecia!!!! They suggested I go to a derm (already 4 rounds of steriod injections), or a gyno (who by the way suggested ortho-tri cyclen lo for me). Basically, nobody gives a sh** if all the hair on my head falls off. Sure, the derm will shoot me up with steriods, but he obviously has more profitable fish to fry. I did my own research (alot of info coming from right here) and came to the conclusion that the ortho-tri cyclen lo is the WORST bcp I could possibly take. Aren't doctors supposed to value a standard of care??????

    WHY is it that we are treated this way? Obviously hair loss is NOT a natural thing for a woman. There HAS TO BE some underlying issue, with hair loss being a symptom. Am I in denial?? Somebody please tell me if I just need to wake up and accept this. Mine started in Feb. 06. The derm said it was 'unlikely to go on forever'. WTF????
     
  2. JanetM

    JanetM Guest

    Cat:

    I know EXACTLY what you mean!!! I have been on ortho tri-cyclen for 7 or 8 years (after a visit to the emergency room when I was hemorrhaging, and was told it was birth control or a hysterectomy). My hair loss trouble started 3 months ago, exactly 6 weeks after I was switched to ortho tricyclen lo. I am convinced, that is what triggered the hair loss, but no one will believe me. I switched back to the triclyclen, but my hair loss continues. I'm guessing I've lost 50-75% of my hair now, and am almost totallly bald on the top half of my head. I'm not sure what to do at this point, because I'm terrified of going off the pill and having to deal with the consequences.
    Janet
     
  3. New Girl

    New Girl Guest

    Cat did the derm say it was alopecia areata?
    If so there is not cause per say, or cure and it will go on forever.
    Some months/years will be good and others will be major loses.
    The best thing is to get a diagnosis so you can then research the facts yourself. I dont rely on DRs to tell me anything, I research it all myself.
    If they say we want to give you this med, I dont take it until I research it myself at home. They only care about getting to the next patient so they can pay for their Jaguar that month.
    Sorry, I know this sucks. I have been losing since Nov last year and diagnosed with Alopecia Areata since Feb 06. I have had 3 rounds of shots and I have about 1/4 of my head gone. And the shots suck, last time I had to get 50 and passed out. Of course the Derm didnt even ask me if I was ok to leave after that many shots, so I passed out in the waiting room making my next appt.
    Hang in there and you found the right place for support the ladies her are wonderful and beautiful.
     
  4. sonny

    sonny Guest

    My hairloss was all triggered by Ortho tri-cyclen lo, too!! I'm so mad I want to sue their company for not warning me!! But the doctors are useless, so no one would ever back me up in court and say definitively that yes, the loss is from Ortho tri-cyclen lo.
    I took birth control for 9 years, then switched to ortho tri cyclen lo for 6 months, then stopped the pill altogether. Then, a few months later I started losing my hair and it continued to fall out for a year when an endo told me to go back on a bcp to absorb some of the testosterone (even though the testosterone levels in my blood were normal). So now i'm back on otho tri-cyclen.
     
  5. tbacchi

    tbacchi Guest

    Did anyone ever read The King of Torts by John Grisham??? I totally believe that suing bc companies is a perfect class action suit. One person at a time can't sue the company. But, as a group, it would be perfect. I totally blame the pill for my TE.
     
  6. sonny

    sonny Guest

    Me too. Did anyone ever see "Catwoman" with halle berry? It was a horrible movie, but the plot was this beauty company like estee lauder was selling a cream to women that perfected their skin, but if you stopped using it, your skin would get veiny and Fall off and you could have heart attacks. All of these women were getting sick, but no one would tie it to this new miracle cream.
     
  7. sonny

    sonny Guest

    So I guess my point is, if we can't start a class action law suit, we should either find catwoman or halle berry to help us.
     
  8. tbacchi

    tbacchi Guest

    Reminds me of that Twilight Zone episode. Does anyone remember. A company was giving away bottled water that took years off of your life. If you stopped drinking it you started aging like crazy. The water was super expensive.
    T

    PS-Yes, I had 2 older brothers and I was forced to watch their shows which then gave me nightmares. I still think about that episode.
     
  9. sonny

    sonny Guest

    I watched way too much twilight zone, too. I was petrified of the episode where the alcoholic drank the 'cure' which turned out to be a worm that grew larger each time you consumed alcohol, and you would never get drunk, because the worm was absorbing the alcohol.

    How would we go about getting a class action lawsuit against ortho-tri cyclen?
     
  10. tbacchi

    tbacchi Guest

    Any lawyers on this site???
     
  11. Karen

    Karen Guest

    Yeah - sort of - i was wondering if my boss would be interested in such a case.

    But on another note - Cat, have you had a biopsy? I'm surprised your derm didn't give you one. They usually do for alopecia areata.
     
  12. New Girl

    New Girl Guest

    I never had a biopsy, my derm just looked and said what it was and started the shots.
    Should I have had a biopsy? The shots are working so I assume diagnosis is correct.
     
  13. Karen

    Karen Guest

    Well, suing is almost out of the question. My boss researched it just now and loss of scalp hair is written in very small print under adverse reactions. I think they covered every single malady you can think of as the list is extensive and long. They covered their asses all right.
     
  14. redclaire

    redclaire Guest

    I wonder if you can't sue the doctors for not being straight up about bcp. No one ever told me that bcp causes hair loss, they just hand the pills out like candy.
    Maybe you can't sue the doctors, but the medical association for not making doctors thoroughly going over the pros and cons of the drugs they hand out. I, truly believe that a doctor needs to sit down with you, go over the pamplet and then have you sign a form that states he went through the entire drug pamplet with you. Make these buttheads work for a living.
     
  15. Cat

    Cat Guest

    I've not had a biopsy. It was never presented as an option. Initially my hair loss was confined to several medium sized patched, now the patches are large and there is diffuse loss also. From what I've read on this site, it seems to be more TE. My derm said is was a 'moderate' case of Alopecia Areata. I do have alot of regrowth and no bare patches, which I thought was characteristic of Alopecia Areata. Whatever it is, I'm sure it was triggered by bc. It is just too coincidential not to be related. That being said, I still have no idea what to expect, how long this will go on etc. I find it amazing that so many women have hair loss related to the same thing. And of course no doctor will substanciate a relationship.
    I read some reply on here about how a dr. would rather be in a 17 car pile up than deal with some chick complaining about hair loss. Well, both the dr. and the endo won't touch me with a ten foot pole.
     
  16. redclaire

    redclaire Guest

    Cat, it does read as if you have Alopecia Areata. TE is much more diffused ( no patches). Alopecia Areata shows up in patches. AND, it is possible to have Alopecia Areata with diffused loss as well.
    As for the doctors and Endos. I always suggest writing a letter of complaint to your insurance company AND their medical centers along with sending a copy to your state's patient advocates services. I've gotten pretty good at letter writing over the past year.
    The fact that you have regrowth is a good thing. And I would suggest searching out another endo to do a series of tests. I do believe you can have your ANAs checked. I know ( just by reading here) that they can be high or not, but it may be a good place to start. That said, has any of the so called doctors done ANY blood work on you?
     
  17. Cat

    Cat Guest

    Yes, I have had some blood work done. All the basic stuff. It all comes back 'normal'. I didn't realize there was such diffuse loss with Alopecia Areata as well. God I would LOVE some answers!!! I hate the fact that my hair is what it is!!! My extensions hide alot.....today. I've ordered a topper also. Trying to be excited.....Its just not happening. Does anyone ever fully recover from this?? And have all of their hair back??
     
  18. JanetM

    JanetM Guest

    My blood tests have all come back normal except something called CH50 total complement which is high which suggests an autoimmune disorder, and my testosterone-free which was low (tested at <.3 with normal being between .3 and 6.9).

    Can anyone tell me what the low testosterone reading might indicate? I keep trying to tell my doctors that I am convinced that my hair loss is hormonal caused by my switch in bcp, but no one will listen to me. I haven't had a biopsy yet - I was told I could get this done when I'm sent to a more specialized dermatologist, but not sure how long it will be until I can get in.

    Janet
     
  19. Karen

    Karen Guest

    Cat, everyone is different. No two cases of Alopecia Areata are the same. And treatments are the same way. . . what works for one may not work for another.

    That said, my hair has grown back. I do not know if I am fully recovered or ever will be again. I know I have to keep myself in check now and not let life stresses get to me like like they used to. I will never ever let myself get so lost that I shut down again. Every day gets a little better and my paranoia gets less and less. I'm going back for one more round of cortisone shots even though my derm said no more the last time - it's totally up to me.
     
  20. Kath

    Kath Guest

    Cat,
    if you can do it, push for that biopsy. It will force them to narrow down your diagnosis alittle. It isn't comfortable, but it isn't too bad. They take a little piece of your scalp from an area where they notice the loss and they analyze the follicles.
    I truly see where you're coming from with the BCPs. When I went off them (after being on for nine years) my already fine hair started falling out alarmingly, leaving me with little left. Not to mention the trouble I had concieving and getting my horomones back after going off them. Had I known all the possibly adverse affects of the pill, I'd have never, ever gone on it in the first place.
    In all the commercials you see out there they make BCPs look like this carefree, perfect option that gives you happiness and freedom....yeah, right. Maybe for some people, but I don't think many people fully understand what your body goes through to switch kinds, start taking them, or cease using them.
    Once you have the biopsy you can take matters into your own hands and do research outside of the drs office. I felt like all of mine (the dermo, the endo, the ob, the primary..)were of very little help and this board was a TON better than any info or support I got from the medical community.
    best of luck, Cat.
     

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