AHHHH! All this is always so confusing! I read the symptoms, sounds right. My mom was told I should have been 5'10 according to whatever tests they did. I'm 5'6 and have been that way since I was in 6th grade, I was never over weight but always the biggest person in my age group. In Kindergarten I was the size of a third grader. My period started when I was 8. Um yeah, thats just a tad early considering most of the girls didn't get theirs for 7 more years. Metformin does not relieve my symptoms, so I tend to go through taking it and then giving up, and then wanting to try it again. I'm sure my doc gets irritable with me, as I do with her. How long has this been known? If its a long time, they should have tested me right away when my mom took me in freaking out about my period 20 years ago. I may not have it, confused, hope I do so I can try something else that may work, hope I don't, gonna be happy if it is cuz then I won't be confused, but angry that there is something more I could have been doing! Too bad the symptoms don't include Bad painful joints and early gray hair! Then I wouldn't need any testing!
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Can you all tell me how high your DHEAS is? Mine is 550 and I think I may have LOCAH not PCOS.. Can you also tell me what testing they did to diagnosis it and if the 17 OH progesterone needed to be checked during a certain time of the month, like day 3-5 of your cycle?
I am just being tested for this. I was told my DHEA was up but I don't know the figure. I think some doctors will take that alone as a diagnosis. Anyway, I'm having a test where you are administered ACTH and then they measure the cortisol levels, baseline, 30 mins and 60 mins. I think the tests are supposed to be done during early follicular. I have been trying to look for information on this online but finding it quite difficult. Seems like a lot of the info is targetted at parents whose children have it.
My dermatologist (and then later my endocrinologist) sent me for a blood test for 17-OH Progesterone (serum). I was taking the pill continuously, so I didn't have to go at any particular time.
The test showed around 40 nmol/L (note metric not US units). My endocrinologist then put me on Diane 35, which includes 2mg of the anti-androgen cyproterone acetate, plus actual tablets of cyproterone acetate, 50mg, so I take 52mg a day altogether.
I had high hopes of what it would do -- too high. Although my skin is much improved (and also I think my scalp is healthier), no effect on body hair.
Anyhow, when I retook the blood test I got 8.2nmol/L, which is much closer to the reference range for women on the pill of 0.5-7.6.
Good luck with the diagnosis.
Is anyone on low dose steroids for elevated DHEAS?? The adrenal gland plays a role in many functions, hormone interactions. I am wondering if the adrenal gland was not working well and the low dose steroids are started which I understand is a common treatment for non classical adrenal hyperplasia or LOCAH does it help many things including metabolism so that the risk of weight gain from low dose steriods might be cancelled out b/c of this condition??!?? Anyone have experience with this?
kushami - so is it then possible to reduce DHEA levels without taking cortisol replacement? I am concerned about the side effects of taking hydrocortisone so it would be good to know if there is a way around that
Ooh, I really don't know anything about DHEA levels -- my endocrinologist hasn't mentioned it. Not sure whether I was tested for it. Sorry it took me so long to reply and I don't have anything useful to tell you. How did the test go?
My daughter is only 6 so the xray of her left hand shows age bone growth and will tell the dr's how bad her condition is. It will tell them is she growing at 6 years of age or older. Yes, it is one of the tests they do for girls with ncah under the age of 8 or 9
Stacy,
I didn't even finish reading through the threads, so I don't know if you answered this or not.
What symptoms/signs made your pedi, even test for this?
My dd is 9.5 yrs, and has always been much taller than the rest of the girls her age. She's 5'1" now, and weighs about 115lbs. She's already an A cup, and has more hair "down" there than I do, granted I've never had much. LOL.
I just recently started letting her shave because she has more hair than I remember than I did at her age.
I am very curious, as I dread her having the same issues or more than I ever had to deal with. I have never had the adrenal issues most women w/ PCOS have, but I still have hormonal and IR issues up the wazoo.
Thanks!
__________________ Sam (30)
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4 Beautiful Children
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Brennen(ds), 6
Connor(ds), 5.5
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I saw this show on "Mystery Diagnoses", and I compleatly know how you feel. I was married for 5 1/2 years, and though I could and did get pregnant, no pregnancy lasted more then a few weeks. (To date I have had 7 miscarrages). I looked up the adrinal hyperplasia, and my sympotoms fit it to a "T". I went to my doctor and started taking a mild steriod, it binds to the excess testosterione in the blood and helps to flush it out. I have non-classical adrinal hyperplasia, and the other post is correct. It looks and presents EXACTLY like PCOS, but the testosterone come from the adrinal glands. If you have been diagnosed with PCOS, and nothing is working, talk to your doctor about trying treatment for NCAH. You might be in the 1-10 percent that have been diagnosed for PCOS that is actually NCAH.
I have had cysts on my ovaries since first detected on ultrasound by an OB at about age 18 (I am now 31). It is presumed they have been there at least since puberty. Would only get my period every 4-6 months. Had my first period at age 10.
Went to an endocrinologist around age 20 who found high 21-hydroxy and 17-OH so put me on low-dose prednisone for LOCAH (NCAH). Took me off after awhile and re-tested around age 22, and have been retested periodically, and the high levels never came back. I have always had borderline high normal levels of the testosterones including DHEA-S, also normal blood sugars.
Developed secondary infertility after my DD was born at age 25 - had low progesterone post-ovulation. Began supplementary bio-identical progesterone days 18-26 and had DS #1 at age 27 and DS #2 at age 28 (13 months apart!). Still have to take the progesterone to have a period every month, but I stay away from those synthetic estrogens (we don't need any extra estrogen anyway!). Still no sign of the LOCAH anymore, never any high testosterones, just cysts on the ovaries. Still have normal blood sugars but had gestational diabetes with #3 and after birth developed insulin resistance (sugars normal, but insulin sky-high) so began metformin.
I highly recommend using an endocrinologist, rather than an OB, for homonal issues. An endo is trained in ALL hormonal issues and ALL hormonal glands, including LOCAH and PCOS, whereas an OB is just going to focus on the ovarian hormones primarily.
Elegirl - I took low-dose steroids for LOCAH for I think about a year and a half (see post above). It still does something weird to your body - the skin becomes more "stretchy" and thin and so you develop the "moon face" and stretch marks. Even at the low dose. On the other hand, taking it for that time seemed to make the problem go away for me permenantly. (Still no sign of LOCAH anymore to this date). So if that contributed to my concieving the 3 children I have now, and possibly made me healthy in other ways I don't know, I'd do it again!
Ooh, I really don't know anything about DHEA levels -- my endocrinologist hasn't mentioned it. Not sure whether I was tested for it. Sorry it took me so long to reply and I don't have anything useful to tell you. How did the test go?
Hi! Thank you. My test results came back with a normal cortisol result so the doctor has ruled out cah.
I have had cysts on my ovaries since first detected on ultrasound by an OB at about age 18 (I am now 31). It is presumed they have been there at least since puberty. Would only get my period every 4-6 months. Had my first period at age 10.
Went to an endocrinologist around age 20 who found high 21-hydroxy and 17-OH so put me on low-dose prednisone for LOCAH (NCAH). Took me off after awhile and re-tested around age 22, and have been retested periodically, and the high levels never came back. I have always had borderline high normal levels of the testosterones including DHEA-S, also normal blood sugars.
A lot of that sounds like me (early period at age 10, high 17-oh, normal blood sugar). My doc just put me on Dexamethasone this cycle; do you know if it's similar to prednisone? Also, what was your dosage on the pred?
__________________ TTC 2ish years
Conceived 1st round of Clomid 10/08
Miscarriage 12/08
5 more rounds of Clomid - BFN
Laparoscopy, hysteroscopy, and HSG scheduled for Dec 28!
TTC on our own after lap. Will not do any fertility meds beyond Clomid.
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Non-classical Adrinal Hyperplasia 
PCOS and NCAH 
