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Discussion in 'Women's Alopecia Areata' started by ginawat, Mar 12, 2008.

  1. ginawat

    ginawat Guest

    Merry - do you have children? If so - what happened with your condition during and after childbirth? Were you ever on any medication (mainly bcps)

    I get a lot of flack on this site because I won't "treat" my condition with the various drugs out there. The fact of the matter is I'm scared. I really hate to clutter this issue with lots of drugs that have lots of side effects. Then I'll always be second guessing - "is it this or that drug making it worse or was it getting worse anyway, etc" I just feel (and have always felt) that something is not right with me health-wise....and that this conditon (whether it be TE,Androgenetic Alopecia, or diffuse Alopecia Areata) is the warning sign my body is trying to deliver. Bottom line I just don't think hormone alteration (bcps) or a drug for the prostate (Propecia) is going to get my hormones back on track. Even if it gets me hair what will it be doing to my general health while doing so.

    I think this is more of an immunity issue - which may very well be causing a hormonal disruption at the same time. I know I am losing time along with the hair...but I just can't seem to fgure out what is best for me.

    I have become (like many others) devastated by this. I feel it has cheated me out of so much happiness. I am 38 and at this time had wanted to be pregnant with my second child. This condtion has robbed me of that. My husband and I agree that while I very well might be physically healthy enough to conceive and carry a child I am not mentally wel enough should this continue to progress as it seems to be doing. Throughout this my my faith has been tested as well as my marriage, job and other close relationsheps (friends) I am breathing...but not living and no matter how much I try I just can't seem to come to grips with this emotionally.

    I don't know where to turn at this point.

    Thanks for listening....

    PS - I went and gotsoe Zrytec yesterday (10mg). It knocked me out last night!
  2. Merry

    Merry Guest

    Gina, you are not alone. I know exactly how you feel, and I'm so sorry this is so hard.

    While I tried some of the topical steroids, like you, I won't mess up my body any more than it is. I agree that Alopecia Areata is autoimmune related and I was genetically prone. Might have been triggered by something, but at this point I won't know. I still see my hair doctor twice a year. It comforts me to keep in touch and see if there is anything new on the horizon.

    Here's my story: One day about 6 1/2 years ago I took a shower as usual, washed my hair, towel dried and then started to comb it out. Oh my God, the hair just dumped out of my head. I didn't know what to think! I had the thickest, most beautiful hair one could imagine. My hair was an important part of me, my femininity, and I was always thankful for it. Well, long story short, the hairloss never stopped (except for a 3 month period 5 years ago and started right back up again.) In the first few years I ran around and visited at least 6 doctors. Waited 8 months to get into one of the most well known hair derms in the country. First few derms said there was no way I had any form of Alopecia Areata. One doctor said to my husband to "take her out and buy her a nice dinner and bottle of wine". I wanted to smash his face in. Scalp biopsies (3) revealed they were so wrong. I do have diffuse Alopecia Areata. While it was good to get a definite reason, I was devastated. I had never seen a shrink in my life, but with suicidal thoughts and not being able to eat, I had to. I was having horrible panic attacks all related to my thoughts about how in the world will I live my life in a wig and nearly bald. The shrink had me take an anti anxiety med for just 2 weeks to get me calm enough to eat. Then I saw a psychologist and started working on my MIND. I know, easier said than done, but if we can control our minds, we absolutely can get through this and LIVE again. We worked on every time I had these horrible thoughts, which was very often.......I would physically shake my head, and make myself switch my mind to something constructive, or positive. Maybe it was thoughts of my family, something I had to get done that day, my work.......just make your mind switch to something other than the panic of my balding head. I'm not saying this is simple and it will have you feeling normal in a day. But, if done properly, it can make a HUGE difference in getting you on your way to normalcy again. I then made sure I got up in the morning, showered, put on make up, some nice earrings or a necklace and had a plan to get outside, smell the fresh air (really) and have a plan to do something that day. ALso, physical excercise every day is imperative. This routine, a great husband, (remember, a husband can only take so much and just imagine your life without him!) kids, and friends (I told EVERYONE, because secrecy only contributes to the problem......worrying about what will happen when people find out), and beautiful toppers got me going and living life again. This is a process. It takes time. But we must all think about what we have that is good in our lives, and find the inner strength to keep going. I know you can do it.

    PS....To answer your other question: I have two grown sons. One is 24 and one is 30 and has two baby daughters. Yes, I am a grandmother. My Alopecia Areata started when I was about 46, six or 7 years ago. So, I don't have the experience of hairloss while pregnant. Some actually get thicker hair during pregnancy, and others lose so much. You just never know.
  3. ginawat

    ginawat Guest

    Merry & Randers ~

    You guys are the best and I thank you for your encouragment. I have the most beautiful little boy (3.5yrs old) and he is what keeps me going (and my husband and family!) - I just get terrified as this continues to progress. If only it would stop for a bit so I could gain some persective only!

    I will take your advice and keep fighting.

    To all - forgive me for my constant questions on the matter. I am just so confused and still trying to figure this all out. I come her for support and seek answers in hopes to find the "common denominator" with all of us and oyu all have been so patient.

  4. Blue Bird

    Blue Bird Guest

    But what if you cannot and never will find what is wrong with your body that is causing the hairloss (which is regularly the case)?? Then you will continue to lose hair until you are almost bald or close to it because you never found the reason why you were losing hair.

    This is the case for me. I know hair is a window to the body and treating the symptoms isnt getting to the real problem. But I am healthy as a horse, therefore I will NEVER find out what is causing the hair loss so I have decided to treat the symptoms since I cannot find the reason. In the meantime, I still try to find the reason. I am going to take supplements to enhance some functions of my body(thyroid, adrenals, sleep maintenance, etc) but nothing is wrong with me according to how my blood looks, that would cause hair loss and no one can find it. I may have diffuse Alopecia Areata, I may have Androgenetic Alopecia, who the hell knows. All I we can do is try try try.
  5. dying curls

    dying curls Guest


    With typical Androgenetic Alopecia, meaning Androgenetic Alopecia not linked to hormonal disorder...Nothing iswrong with your body. You are healthy, it's just a gene, like some men are balding... balding men arent necessarily unhealthy.
    Androgenetic Alopecia is not somehting restricted to men only, it's not a sexual characterisitc like a penis....

    some hairloss can indicates something is going worng...like hair loss due to deficiency, or other disease. but with Androgenetic Alopecia it is only a natural process.
  6. Blue Bird

    Blue Bird Guest

    I know dying curls, I was telling Gina and Merry what if they NEVER find whats wrong, since they dont take drugs for the reason that something is wrong with their body and they need to fix it, not use drugs for the symptom of hair loss. If you never find whats wrong, dont you want to at least treat the symptoms to keep some hair. Thats all I was asking.

    So Dyingcurls,
    If my hair loss is JUST genetic Androgenetic Alopecia will anti androgens maybe work, or no?
  7. sunnyone1

    sunnyone1 Guest

    Hi Merry

    Are you the Merry who is a member of WS ? If so, I'm a member, too. They've helped me so much

  8. dying curls

    dying curls Guest

    I think the same as you do
    I hope it will..only time will tell...likely it will lessen ,/stop the shedding...for me it worked wonders the first time..now it just stopped the shedding but no regrowth so far
  9. Blue Bird

    Blue Bird Guest

    The first time? You took meds 2 different times?
  10. ttc

    ttc Guest

    Merry~Thank you so much for sharing that with us. I can totally relate and feel like I'm at a point you were when I really need to take control of my mind and seek some therapy. Like you said, I have never had an issue in my life before that I couldn't deal with myself...so this is a huge step for me and I'm really scared and nervous to let someone inside like that. But you have given me great encouragement that this is the right thing for me to do...not just for me but for the well being of my husband and girls. I refuse to let this take over my life forever in the way that it has. I have also been to multiple doctors, some thousands of miles away. I am starting to come to terms with the idea that I may never find an answer as to why this is happening to me. I know many aren't ready to deal with that yet and will keep fighting, and more power to you! I hope you find something. I personally am tired of going in circles and feeling beaten down each time I see a physician. I am still trying to do what I can and taking meds which some may agree with or not agree with...but for me I feel I have to do everything possible (within reason)if there is a way to treat. Not that I like the idea of taking meds...I really don't, but I am not experiencing adverse side effects at this point so I will stick with it and see.
    Gina~Hang in there....I feel much as you do many days, and all of us understand the need to vent to people who understand :)
  11. ginawat

    ginawat Guest

    I guess either way you look at this its a crap shoot. By trying to discover whats wrong you (w/o drugs) you may lose more hair. By taking drugs you may disrupt your system more and lose more hair. You might also cause other serious problems that might be staved off by not being in a chemically induced state. I personally think the only difference is "clutter". With me and Merry we know its our bodies not working as efficiently as they should - on its own. With others who take mulititude of drugs they might be second guessing everything more. maybe its their body - maybe its the drugs. In addition accurate labs are difficult as the drugs skew most hormone serums levels.

    when I doubt myself I pull out the leaflets I have from Yaz and various other RX's I have had in the past. All I need to do is read the side effects and I know I'm better off. Liver issues, cancer, heart problems.....? All for hair? I WANT MY HAIR---but I WANT MY LIVER MORE.

    And until they SHOW me this defective/sensitive/presiposed "gene" I'm not buying it 100%. Its way to easy to blame genetics on everything that there is no other scientific reason for.
  12. ttc

    ttc Guest

    Gina~ I agree, the whole thing is a crap shoot. We all just take in the information we gather, and make an assesment for how we feel we want to deal with it. I feel much as you do after reading some of what you said about previous generations not dealing with hair loss like ours and it having roots in hormonal treatments. I have been on birth control since my last daughter was born (who is now 13)...and deep down I really think the whole thing is related to that and my body is out of whack from it. I figure I built up an androgen sensitivity or something. The pill I had been on is supposedly non-androgenic Apri-Desogen) according to Dr. Redmond but then why does the leaflet list hairloss as a side effect???????!!!!! I really wonder if there is such a thing as a non-androgenic pill or is one maybe "less" androgenic than another? I really in my gut feel I would not be in this state had I never taken oral contraceptives. But of course hind sight is 20/20...to many doctors push them on women and blow out of proportion the benefits. If I'd have known I'd be going through this crap I'd have forced my husband to go get snipped years ago!!!! :jump: :jump:
  13. Blue Bird

    Blue Bird Guest

    I understand Gina :agree:

    My liver, blood pressure and good cholesterol ALL got signif better since on the BCP...strange huh! I have the blood tests to prove it. The only thing that is worse is triglicerides but they are still in range. I will watch that. But the doctor said my liver is HAPPY.lol, and my good cholesterol is WAY good, like freakishly..lol.my blood pressure went from being high to low (good low)...it doesnt make sense why I am healthier but the hair is not.....

    Godd luck to all of us! I have grown to really care about you all!!
  14. dying curls

    dying curls Guest

    Most medication and not only BCP have hair loss as a side effect...
    Yes there are many non androgenic pill out there , i am on them, and i can tell you it works. I am living proof of this as well as most PCOS girls, and other girls with ane issue (due to androgen sensivity just like Androgenetic Alopecia) or other androgen related issue..
    then some people will respond weirdly or not at all to certain drugs. that is because we are all different. Even food can have side effect if you are allergic to it or something. But that remains the minority of people.

    I understand people not willing to take the BCP but then, dont try to say it is because there must be another cause or that those are real bad. plenty of people around the world need daily medication to live normal lives.
    Anybody who takes a long term medication need to be followed by a doctor. But it's a choice to make.But certainly the root of Androgenetic Alopecia is not the BCP itself...most women with Androgenetic Alopecia on the contrary start the BCP to cope with this problem, this is way way WAY more common than the reverse.
    Rather than the BCP itselfi would make our general environment responsible, the food, the cheicals in the hair ect..but they arent direclty responsible for Androgenetic Alopecia, they might accelerate its onset.
  15. Merry

    Merry Guest

    Gina ~ While it is true that about 30 percent of scalp biopsies are inconclusive as to the cause of the hairloss, in all cases the biopsy can rule out some of the causes. It will determine if you have any scalp infections like fungal. It will tell you how many of the hairs that are taken in the punch are in the telegen phase/anagen phase which in turn will give you a very good idea if it is TE or not. So, while it is not always the perfect answer, I think it is worth a try for someone like you who really wants/needs some direction here. And, remember, the biopsy is only good if it is read by someone highly tranined to read scalp biopsies. Best to you, Merry
  16. ginawat

    ginawat Guest

    I know...I gotta get it done. I hpe they will take from somewhere other than to crown because I don't have enough to disguise the stitches.

    Its also going to be a looooooong wait for results. Stress!

  17. Blue Bird

    Blue Bird Guest

    I had a scalp biopsy done 2x when I had Alopecia Areata. It came back in a few weeks....it is better to know hunnie!!
  18. catfancy

    catfancy Guest

    I am scheduled for a scalp biopsy next Thursday. Oddly enough, this is the first time a doctor has suggested that I get one.

    Merry, you have diffuse Alopecia Areata...was it diagnosed with a scalp biopsy?
  19. Merry

    Merry Guest

    Catfancy ~ After a couples derms said it couldn't be Alopecia Areata (probably because they had never properly diagnosed diffuse Alopecia Areata before), I got into the hair expert derm who said it was either te or diffuse Alopecia Areata. The scalp biopsy showed a normal number of hairs in the telegen phase and some of that specific kind of inflammation pattern around the hair follicles..... both of these confirmed the diffuse Alopecia Areata diagnosis.
  20. ttc

    ttc Guest

    Would you mind sharing the name of the expert Derm? Was it Cotsaralis?

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