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  1. #1
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    Exclamation Alopecia Areata, Thinning Hair, ACTH

    I recently found that that I have high ACTH (37) and have since at least 2007. Cortisol etc. normal. My endo is at a loss. I also have AA, which I got at age 16- it was very mild for many years. One or two spots, if any. At age 19, I went on Demulen 35 for 10 years. AA mild. At age 29 I went off Demulen to get pregnant and had A LOT of hair sheddng overall and AA got worse. I got pregnant and went into remission for 2 years. When I stopped nursing (I was on micronor for nursing then Zovia for 3 months), AA came back strong. I went off Zovia for baby #2 and AA was bad and hair still thin but not actively shedding. Once pregnant with baby 2, AA into remission for 6 months, then started again. Upon delivery- a complicated c section, I suddenly lost about 50% of my hair and it became sickly thin. I also lost some eyelashes. After 10 months, my AA started to remit but thinness did not. Five months AA came back strong again and that is where I am now, 6 months later. I have HAD IT! I'm hideous! I am still nursing a 18 month old (ugh, dont ask), my period has not returned and I am still on micronor.

    Is there any hope for me?

    Other possible relevant history is hair texture changed some when it started falling out- got dry and course. My blood sugar tends to be a little low unless I take Claritin D every day- I dont know why. I am tired, but am really very busy with job, kids, life- so I dont know that I am inappropriately tired. I have insomnia a lot and rarely get to sleep through the night. Both kids took over a year to concieve as cycles have always been irregular. I also got low blood pressure 90/60 when I got pregnant with my first son at age 30 and it is still low today.

    I get injections from derm, use mixodil and flucinocide, am on micronor and take following supplements- Omega 3, magnesium, multi vitamin, vitamin d 3, b12 complex, noni juice, acai berry, chondrotin sulfate, quertin, calcuim, msm, and a probiotic.

    I also has saliva adrenal testing a year ago which my endo doesnt want to look at but it says that most of my levels are not great. One strange result was cortisol was very very low in morning and then slightly elevated the rest of the day.

    I am having an MRI next week on pituatary but I want my hair back in a bad way.

  2. #2
    Junior Member
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    Jan 2009
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    Default Follow Up

    Some additional info as I just got some lab work back and just read your book cover to cover (the only doctor on the planet who GETS IT). I think I have AA and Hormonal Hair loss due to estrogen deficiency as I have the weird hurting hair and scalp pain, insomnia, and the thining on top etc. Also it occurs to me that my generalized thinning was not there and my AA was much better when I was on the pill for 10 years. All my trouble started when I went off of it. I thought since I was on Zovia for 3 months that the pill wouldnt solve my problems but now I realize it was the wrong pill and too short of a time. So I am very hopeful that the BCP will solve my symptoms. I have a script for Yaz- is that ok or should I push for higher estrogen in Yasmin?

    But given my high ACTH do you think the low estrogen is due to adrenal malfunction and I should treat the source? Or unrelated? I dont think I have PCOS- I went to a reproductive endo to help with second child (didnt help, got pregnant on my own eventually) and he checked for that so I assume I dont have it.

    Here are my latest labs:

    Cortisol serum 15.4 (range 3-17)
    Prolactin serum 10 (range 3-30) but I am nursing a 18 month old
    Testosterone Free 2 (range .2-5)
    Testosterone Bioavilable 4.3 (range .5-8.5)
    Testosterone total 16 (range 2-45)
    SHBG 29 (range 14-102)
    Albumin 4.7 (range 3.6-5.1)
    Creatinine 24 hour urine 82 (range 20-320)
    Coritsol free 24 hour urine 17.8 (range 4-50)
    ACTH 32 (now down from 37)

    So no smoking guns in there I guess?

    So Yes on Yaz?

  3. #3
    Medical Advisor Geoffrey Redmond, MD, FACE's Avatar
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    Oct 2008
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    New York, NY
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    Default

    Quote Originally Posted by a0673 View Post
    I recently found that that I have high ACTH (37) and have since at least 2007. Cortisol etc. normal. My endo is at a loss. I also have AA, which I got at age 16- it was very mild for many years. One or two spots, if any. At age 19, I went on Demulen 35 for 10 years. AA mild. At age 29 I went off Demulen to get pregnant and had A LOT of hair sheddng overall and AA got worse. I got pregnant and went into remission for 2 years. When I stopped nursing (I was on micronor for nursing then Zovia for 3 months), AA came back strong. I went off Zovia for baby #2 and AA was bad and hair still thin but not actively shedding. Once pregnant with baby 2, AA into remission for 6 months, then started again. Upon delivery- a complicated c section, I suddenly lost about 50% of my hair and it became sickly thin. I also lost some eyelashes. After 10 months, my AA started to remit but thinness did not. Five months AA came back strong again and that is where I am now, 6 months later. I have HAD IT! I'm hideous! I am still nursing a 18 month old (ugh, dont ask), my period has not returned and I am still on micronor.

    Is there any hope for me?

    Other possible relevant history is hair texture changed some when it started falling out- got dry and course. My blood sugar tends to be a little low unless I take Claritin D every day- I dont know why. I am tired, but am really very busy with job, kids, life- so I dont know that I am inappropriately tired. I have insomnia a lot and rarely get to sleep through the night. Both kids took over a year to concieve as cycles have always been irregular. I also got low blood pressure 90/60 when I got pregnant with my first son at age 30 and it is still low today.

    I get injections from derm, use mixodil and flucinocide, am on micronor and take following supplements- Omega 3, magnesium, multi vitamin, vitamin d 3, b12 complex, noni juice, acai berry, chondrotin sulfate, quertin, calcuim, msm, and a probiotic.

    I also has saliva adrenal testing a year ago which my endo doesnt want to look at but it says that most of my levels are not great. One strange result was cortisol was very very low in morning and then slightly elevated the rest of the day.

    I am having an MRI next week on pituatary but I want my hair back in a bad way.
    I cannot comment specifically on your adrenal question except to say that workup of these conditions is quite complicated and should be done only with a board-certified endocrinologist experienced with these conditions. I often see women incorrectly diagnosed as having adrenal disease by doctors with no training in endocrinology. Saliva tests, except in a research setting, are unreliable and should not be used for any sort of diagnosis.

    Re AA, that is, alopecia areata, this is a condition in which the immune system attacks part of its own body. Unlike hormonal hair loss, which is usually diffuse, AA tends to produce areas with almost no hair at all while surrounding hair is normal.

    AA tends to come and go unpredictably. The only recognized treatment is scalp injections of cortisone-like steroids. It is possible that extensive injections could affect the adrenal so your endocrinologist needs to know about this.

    Sometimes AA is associated with hormonal hair loss in other areas; after all, at least 20% of women have some degree of hormonal hair loss, unfortunately. In such cases, medication to stimulate growth of what hair is present may be helpful. However spironolactone may have effects on the adrenals so treatment needs to be carefully considered with an endocrinologist.

    There is always a chance with AA that hair will regrow so there is some hope.
    Geoffrey Redmond, MD
    The Hormone Help Center of New York http://www.hormonehelpny.com/
    Author, It's Your Hormones

    It is not appropriate to make medical diagnoses or treatment recommendations over the internet. Replies to questions intended as general information and not as medical advice for any individual. An appropriate health care provider should be consulted for specific advice.

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