Okay, I was completely astonished by this.. I was watching this show called "Mystery Diagnosis" on Discovery Health. I could not believe what I was hearing - this woman and her family on the show were explaining her ordeal throughout the last 10 years and I began to cry. I knew from the first symptom she had expressed what she had. Wow, was I ever wrong. The more and more I watched, the more I was convinced she had Polycystic Ovarian Disease. To make a long story short, this woman had almost every single symptom of Polycystic but it turns out that she had a disease called Non-Classical Adrenal Hyperplasia. Apparently, the symptoms almost mimic one another.. I could not believe it. I just thought I would share this with all of you as I had never heard of it and I don't know if any of you have either.
very interesting ( i was forced to look it up lol) the bad part is the treatment is considerably different, so people may be misdiagnosed and not get the right treatment=(
Hi,
NCAH and PCO can have identical symptoms. Only doing the right blood work can tell them apart. There is a great article written by Dr. Ricardo Azziz called "NCAH: the Great pretender". Seminars in Reproductive Medicine, 2003, vol 21
You might want to show it to your doctor. The main difference is where the androgens are coming from primarily--is it the adrenal glands or the ovaries?
Women with NCAH can develop PCO (most do), so this makes it all the harder to distinguish between the two.
You might want to contact CARES Foundation -- caresfoundation.org for more information about NCAH and/or for a list of doctors familiar with both disorders. Any doctor who is a member of the Androgen Excess Society should be well versed in both and can help get your treatment optimized. Contact ae-society.org
Good luck.
CARES Foundation, Inc.
(Congenital Adrenal hyperplasia Research, Education and Support) 2414 Morris Ave., Suite 110 Union, NJ 07083
OMG>>I can't believe I found this post! I joined this site because of NCAH and wanting to know more. I have PCOS and was diagnosed back in 1994 however I have 2 daughters..one is 6 yrs and one 1 month old. My 6 year old was just diagnosed with NCAH and has to go through some testing. She needs her left hand xrayed and do some kind of hormonal/blood test in the hospital. Her testosterone level (0-10) was a 61! And her h17 progest (0-120) was a whopping 1413! All her levels are high. I am so afraid for her!
Although I have been diagnosed with PCOSI really think this might be what I have. I have to go back for testing because my testosterone levels are so high.
Staceylynne - Why does your daughter have to get her left hand x-rayed? Does this have something to do with NCAH?
__________________ Me - 30 To view links or images in signatures your post count must be 0 or greater. You currently have 0 posts. DH - 38 TTC #1 since: 7/08 Started Metformin: 12/12/08 (1500mg) Parlodel (2.5mg) - For high prolactin levels 1 50mg Clomid cycle followed by 3 100mg cycles
This Cycle: 10/9/09 - 100mg Clomid CD 3-7 - First IUI - BFP!!!!!!!!
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
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
Thank you. I wish her (and you) the best!
__________________ Me - 30 To view links or images in signatures your post count must be 0 or greater. You currently have 0 posts. DH - 38 TTC #1 since: 7/08 Started Metformin: 12/12/08 (1500mg) Parlodel (2.5mg) - For high prolactin levels 1 50mg Clomid cycle followed by 3 100mg cycles
This Cycle: 10/9/09 - 100mg Clomid CD 3-7 - First IUI - BFP!!!!!!!!
thanks so much. It's a difficult time for me especially you want better for your kids and then to know "I" made her sick.....very hard to swallow. I am just thankful I was diagnosed and she doesn't have to go through the agony of incompetent Dr's.
Okay, I was completely astonished by this.. I was watching this show called "Mystery Diagnosis" on Discovery Health. I could not believe what I was hearing - this woman and her family on the show were explaining her ordeal throughout the last 10 years and I began to cry. I knew from the first symptom she had expressed what she had. Wow, was I ever wrong. The more and more I watched, the more I was convinced she had Polycystic Ovarian Disease. To make a long story short, this woman had almost every single symptom of Polycystic but it turns out that she had a disease called Non-Classical Adrenal Hyperplasia. Apparently, the symptoms almost mimic one another.. I could not believe it. I just thought I would share this with all of you as I had never heard of it and I don't know if any of you have either.
My husband caught the show and was very excited about it
because I'm on 1500mg of Metformin without one itty bitty
change in my symptoms. My doctor is way cool though.
He's the only doctor after 15 years that listened
and thought it might be PCOS.
I hadn't even heard of it till then.
I have a call into my doc to get the test for NCAH.
I'll keep you updated on the progress.
My father actually did research on this disease before i was diagnosed with PCOS. He thought that maybe that is what i had rather then pcos because of my background. You are at higher risk if you are jewish and there are a few other high risk factors. I found it very intresting how you can confuse the two dieases.
Rachel
__________________
Dx: Jan. 2009
Meds: Taken off Met!!Doc. wants to see my levels off to make sure I even need it(WooHOO).Put on Spironolactone.Taken off NuvaRing until ready to TTC.
ME(20) To view links or images in signatures your post count must be 0 or greater. You currently have 0 posts. DBF(24)
Other Dx: Hashimoto's Disease and possible IBS/IC/ENDO.
To view links or images in signatures your post count must be 0 or greater. You currently have 0 posts. :Not TTC yet To view links or images in signatures your post count must be 0 or greater. You currently have 0 posts. , will be when the time is right.
To view links or images in signatures your post count must be 0 or greater. You currently have 0 posts.
i have late onset cah - as well as pcos. my endo said that it is hard to know where pcos starts/locah ends and vice versa. I take prednisolone (steroid) for the locah.
Is there a test they can do to tell if you have NCAH? I am going to speak to my DR about this at my next appointment.
__________________ Me - 30 To view links or images in signatures your post count must be 0 or greater. You currently have 0 posts. DH - 38 TTC #1 since: 7/08 Started Metformin: 12/12/08 (1500mg) Parlodel (2.5mg) - For high prolactin levels 1 50mg Clomid cycle followed by 3 100mg cycles
This Cycle: 10/9/09 - 100mg Clomid CD 3-7 - First IUI - BFP!!!!!!!!
I went to a reproductive endocrinlogist 15 years ago who diagnosed me with pcos and NCAH. My DHEA was elevated, and my 17-hydroxyprogesterone was 93 (cut-off was 80). Anyway, since my progesterone was low, he said that proved I had NCAH. He prescribed prednisone, which I declined to take, since I was 19 and only weighed 115 lbs. at the time, there was no way I was chancing putting on weight (boy, how things have changed!). Anyway, he then prescribed BCP, which brought my testosterone down nicely (don't know if it brought other hormones down). Fast forward 8 years, I go to a new endocrinologist sonce my old one retired, he says I do not have NCAH. He prescribes metformin, which makes me sick so I discontinue that. Three years after that, I move and go to another endo, who says I do not have NCAH either; it's pcos.
I don't know who to believe, I have always had panic attacks, which is a symptom of NCAH. But my cortisol levels were either normal or high, which I thought isn't indicative of NCAH. Anyway, I'm sick of all these doctors and their synthetic meds, so I am trying natural remedies now.
__________________ Me-34
DH-34
Momma to lots of fur babies!
Proud Aunt to Hunter (10) and Evan (3)
After feeling for years that 'something was wrong', because of skin problems into my 30s and lots of body hair (luckily for me no facial hair), I came across some info on PCOS and realised my mum had had it (she had every symptom).
My doctor sent me to a dermatologist who did a 17-OH progesterone blood test, which showed I had NCAH caused by 21-hydroxylase deficiency. Basically my levels were four times the 'normal' level for women.
Since then I have been taking an anti-androgen (cyproterone acetate) as I cannot take spironolactone for other reasons plus birth control pill that includes cyproterone acetate (Diane or Dianette).
My skin has improved (less oily and smelly and fewer breakouts) and my levels have come down close to normal. Sadly the hair factor has not changed at all. I read that late diagnosis often means that hair production is unaffected. If only I'd been diagnosed in my early teens, what a lot of suffering I would have avoided!
Good luck to everyone out there who is trying to work out the whole PCOS/NCAH situation.
Sarah
Non-Classical Adrenal Hyperplasia - READ THIS! 
my endo said that it is hard to know where pcos starts/locah ends and vice versa. I take prednisolone (steroid) for the locah.
I have NCAH 
