PCOS/Insulin Resistance Support Support for us with any of the following: Insulin Resistance, Syndrome X, Polycystic Ovarian Syndrome, or other endocrine disorders.

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Old 08-05-2007, 08:05 PM   #1  
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Arrow Adult Onset Congenital Adrenal Hyperplasia

Hi Ladies.

I just got done watching Mystery Diagnosis, on the Discovery Health Channel. This lady had simular symptoms of PCOS: weight gain, insulin resistant, facial hair, brown spots, etc. She went to several drs, including endocrinologists and they all thought she had PCOS. Her mother read an article in Woman's Day about PCOS and there was a dr listed, Dr. Katherine Sherif, who is supposed to the best of the best for treatment of PCOS. So she went and the dr gave her medicine to help with her PCOS, only it didn't work like she thought it would. It should have lowered her Testosterone level and it didn't. So Dr. Sherif tried another drug that is used for ADULT ONSET CONGENITAL ADRENAL HYPERPLASIA and that lowered it and relieved her symptoms. I just wonder how many of us Cysters actually have ADULT ONSET CONGENITAL ADRENAL HYPERPLASIA and just have been misdiagnosed???

Anyway, I just wanted to get some information out there so we are aware that there is another disease out there that has a lot of the same symptoms as PCOS.

Here is a bit of info about it:

Late Onset CongenitalAadrenal Hyperplasia (CAH):, or non-classic congenital adrenal hyperplasia, is a less severe form of CAH in which symptoms can vary widely and appear anywhere between infancy and late adolescence. Because the symptoms can be mild or be confused with the symptoms of other disorders, it may not be diagnosed until a person is well into adulthood, if it all. To make things even more confusing, symptoms can come and go throughout one's life.
The basics behind late onset CAH: Because of an enzyme deficiency, cortisol production is limited, causing the adrenals to overcompensate and make too many androgens (e.g. testosterone, DHEA). If a child has precocious puberty symptoms, advanced bone growth, or extreme muscle development, he or she is more apt to get diagnosed. Fairly often, however, it goes undiagnosed. This is because the physical symptoms in males are not as obvious since higher testosterone causes less differences in men, and a lot of doctors don't think to check for late onset CAH when a woman complains of acne, menstrual disorders, and excess hair growth, etc. Also, both sexes can suffer from anxiety or neurological disorders caused by the lack of enough cortisol (which deals with stress) and excess androgens. The most common cause of both CAH and late onset CAH is a 21-hydroxylase deficiency. However, these disorders can also be caused by a deficiency of 11 beta-hydroxylase, 17 alpha-hydroxylase, 3 beta-hydroxysteroid dehydrogenase, or 20-22 demolase.
See: http://www.cahsupportforum.com/locah.html
See: http://www.endotext.org/pediatrics/p...diatrics8a.htm

Another Site for:
ADULT ONSET CONGENITAL ADRENAL HYPERPLASIA http://www.dundee.ac.uk/medther/taye...yperplasia.htm

Another Link about Dr. Sherif: http://www.drexelmed.edu/About/Newsa...8/Default.aspx
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Old 08-09-2007, 07:04 PM   #2  
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I saw this and I have to say, my interest was piqued. I may ask my Dr if this is a possibility.
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Old 08-31-2011, 10:21 PM   #3  
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I had an ultrasound done and was diagnosed with pcos a couple weeks ago and now, after some more blood tests, the doctors think that I have congenital adrenal hyperplasia. I will be going to a specialist for more tests in a few weeks to get a confirmation and hopefully some medication to treat it. My husband and I have been trying to get pregnant for over a year and have been unsuccessful so hopefully we will have some luck once I'm treated and start ovulating regularly. I'm hoping try to get more information on this disorder as well.
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Old 09-01-2011, 09:56 AM   #4  
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From what my endocrinologist told me, male hormones can be produced by the adrenal gland and by the ovaries. If it is your adrenal gland only, it is easier to suppress them with corticosteroids and it is almost always permanent. However, if it is your ovaries, then high-estrogen BCP are prescribed to suppress it and it is only temporary i.e only as long as you are taking BCP.

In cases like me, it was both my adrenal & ovaries. My adrenal glands were producing the DHEA-S and my ovaries were producing the testosterone. Once my adrenal was suppressed, the ovaries started reducing their testosterone production automatically.. don't really know why. I am due in another 6 months for a blood test to see if my ovarian suppression was only temporary or not.

This is why I prefer seeing an endocrinologist rather than a gynecologist for PCOS.
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Old 03-21-2012, 09:11 AM   #5  
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I know this is an old post but I was wondering since then have any of you gotten pergos. I too was misdiagnosed with PCOS I found out a month ago I have Late Onset Congenital Aadrenal Hyperplasia (CAH). I have been trying for years to get pergo and nothing worked on till I changed RE and she ran into a peace of my file and there it was information leading her to test me for Congenital Aadrenal Hyperplasia. The test came back that I indeed have CAH but late. She has then put me on dex and it has help to fix my hormone levels, but I am still not ovulating but I think that will take time since I have only been taking them for 2weeks now. But am wondering what has it been for any of you and have you taken any meds to help with CAH and TTC??
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Old 03-22-2012, 06:54 PM   #6  
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Wow this is very interesting I see my Dr in 6 weeks im going to ask about this.
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Old 03-23-2012, 12:52 PM   #7  
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You should because I always thought I had PCOS but I found out that CAH is the cause of my PCOS and if you have LOCAH you will think its PCOS and so will the doctors. They dont test for this because once you have PCOS they stick it to you forever with out checking for other problems that can be cause you to have the same problem as PCOS. LOCAH has the same problems as those with PCOS and if I was you I would tell your doc just to make sure to get you tested for LOCAH just to have a peace of mind. I would have never knowen I had LOCAH if I had not been trying to have a baby. I would have lived my life thinking it was PCOS. Im happy I found out how I did.
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