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NCAH or PCOS?

Posted , 4 users are following.

NellyBelly57
NellyBelly57

I recently went to an endocrinologist who was horrific. I was referred to him by my gynecologist who diagnosed me with PCOS and told me I was developing Hashimotos thyroiditis, due to the blood test results. At the initial appointment with the gyno, PCOS seemed pretty obvious because of my irregular periods, acne and the fact that my ovaries were covered with cysts. Also, for the past 2 years I have been feeling not so great, very weak, tired, constantly getting sick, joint pain, lots of digestion issues. I am being treated for digestive issues seperately. When the gyno mentioned that my thyroid was a little wacky, it got my hopes up because I thought it could be the reason to my suffering.

When I got to the endocrinologist, he looked at my results and didn't explain much. I am 20 years old, weight 115 pounds, and am an avid athlete. So he said that I seemed healthy and didn't need treatment. He basically told me I have elevated 17OH Progesterone which is caused by a genetic defect, which is causing my PCOS, and to come back to him when I want kids. 

From what I have read, NCAH and PCOS are two different things, but I do have PCOS symptoms. this is my hormone panel for PCOS:

FSH: 1.4

LH: 6.2

prolactine: 9.3

total testosterone: 9.3

esradiol: 822

DHEAS: 7.3

17 OH progesterone: 10.7

can someone tell me what these blood tests indicate? I will go to another doctor again when my insurance allows, but for now I want a better understanding. I felt like the doctor dumbed things down and didn't take me seriously.

Also, regarding my thyroid, the doctor literally told me that my thyroid has nothing to do with how I have been feeling, even though my gyno and GP referred me to the endrocrinologist because of my thyroid. Can you tell me what you think of these numbers?

TSH: 4.0

FT4: 9.4

FT3: 5.2

ATG: <20.0

Anti TPO: 45

I know that some of these numbers are out of range. why would the doctor completely write me off?

I feel so invalidated and upset by this doctor! And to think I am going to study medicine...

Thanks!

0 likes, 2 replies

2 Replies

  • paige0808
    paige0808 NellyBelly57

    Posted

    Nelly,

    I have Non Classical adrenal hyperplasia. Let me tell you, most endocrinologists have little knowlegde of this rare genetic disorder. I have extremely high dheas and testosterone. I have only found one endocrinologist here in California to treat me properly. His name is Alan Marcus. I have seen two other endocrinologists and they think There is nothing wrong with me beccause I am slim, Im 21 and 100 lbs. I have thinning scalp hair, anxiety, depression, insomnia, excess hair growth, and I started my period when I was 11. I know y DHEA has gotten up to 600. But DHEAS are a different measure So I am not sure of your levels. I would try to find another endocrinologist to help you out. Keep researching, I am sorry these doctors are so little aware of this frustrating disease. A steriod (Prednisone ) is what makes the levels reduce.

    • AMBERN87
      AMBERN87 paige0808

      Posted

      Hi Paige, I am wondering how you got diagnosed? What was your 17-hydroxyprogesterone? And do you suffer with acne and does the prednisone help that?
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