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Discussion:
Non-classic CAH
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I'm 18 and was recently diagnosed with non-classic CAH. I don't really know exactly what it means. I've also been diagnosed with PCOS- which means that both my adrenal gland and ovaries are producing too much androgen. I've been started on Metformin. I don't know what else to say. I've been through so much other crap already, I'm feeling kind of overwhelmed with this.
Posted on 07/26/08, 07:26 pm
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Reply #1 - 03/20/09  12:38am
" Hey,
I don't know if you still use this site anymore, but figured that I'd give it a try, since noone replied to your post. CAH is a problem with your adrenal glands and sometimes the ovaries, which secretes too much cortisol and androgens. your adrenals are actually acting normally, but your brain thinks that it is not enough, so it tells the adrenals to go into overdrive. The excess cortisol and androgens turn to testasterone. Having so much testasterone confuses the female body. Excess body hair, short stature, weight gain from the steriods, and confusing feeling of sexuality and gender. You'll also have to be careful not to catch viruses or colds from others. The steroids takes a tax on your immune system, so just getting the flu, injuring yourself, getting into a car accident, surgery, and even dental surgery, is very intrusive and requires stress steroids. Having just a simple flu with a fever of 102, needs emergency attention. But besides all that bad news, as long as you take care of yourself and conitnue taking your medication, you are expected to live a normal life expectancy and are able to do everything else that everybody else does. Another upside is that most people with CAH have very high sex drives, and thats always good...right? Well I hope that this has helped even just a lil bit. Good luck in your journey. If you need to talk, feel free to give me a shout.

Joshua Dylan "
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Reply #2 - 10/28/09  8:10pm
" I know I am coming in late to this but thank you Joshua for clearing some things up for me.. My 6 yr old daughter has been diagnosed with the disorder so I am looking for any advice.. She is currently under the care of a great Dr but you know as a patient one still has questions! "
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Reply #3 - 09/03/10  6:29pm
" Thats really weird. I was diagnosed at 18 too. But they never mentioned it being a problem with my brain. I always thought it was just a problem with my adrenal glands. Interesting. And they always told me I didn't produce enough cortisol and over produced testosterone to make up for the lack of cortisol. And although I do have excess body hair, I'm actually tall for a woman (5'9), but maybe that has something to do with the testosterone confusing my body? I'm currently weaning myself off of prednisone and am taking spironolactone. It's been working much better for me in terms of body hair than the steroids ever did. "
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Reply #4 - 09/13/10  12:47am
" Joshua's information may be a little misleading or incorrect, but , although I've actually researched mthe condition in medical libraries, I can't cite the sources of information that is contradictory so you have no reason to believe me or him. I'm sure he believes what he has said is accurate and what I may say may be due to my own misunderstanding. So, all I can say is absorb what people say but rely on a professional for an accurate explanation. At least starting here may help you know what questions to ask. If interested, check out "CAH Primer" in the Journal section on my Profile page. "
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Reply #5 - 11/28/10  10:39pm
" I think Joshua is thinking more of addison's disease. The adrenal glands (when you have CAH) lack the enzymes needed to produce coritsol. So your brain keeps telling them to produce more and that results in the excess male hormones. That is why people with CAH need to be on steriod therapy to stay healthy. "
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Reply #6 - 04/15/11  9:00pm
" Just FYI, there are different types of CAH. Early in the course of the illness and even on-going, some kinds can be managed without corticosteroid therapy under certain conditions. "
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Reply #7 - 07/16/12  3:47pm
" Hi, I'm new here...LOCAH dx at 17, my life has been a living hell and surprisingly, I'm still here. Arrrrrgh "

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