Hi everyone,

I’m Alicia and I’m 18. I’ve been diagnosed with PCOS but it does not explain all of my symptoms. I used to be super athletic and played 3 sports. I got my period at 13 and it was regular. However, I started losing my periods.

At first they would come every few months but have since stopped completely. I have lost a lot of weight, especially muscle. I had to stop playing soccer because my leg muscles were giving out. At the same time I got very bad acne and started sweating through all my clothes. My hair started falling out of my head. I ordered rogaine at age 15 because the bald spots on my head were so embarrassing.

I’ve been on 3 different acne medications and accutane. I have been working since I was 14 but I can no longer stand through my shifts even though I am only working 5 hours at a time. I feel like absolute crap and the worst part is I’m so weak. And my appearance has changed a lot. My face is round, red, and my eyelids are swollen. I don’t recognize myself and can’t stand to look in the mirror. My arms and legs are sticks and I can’t gain muscle no matter what I try. I get sick all the time, I’ve had strep twice, oral yeast infections, UTIS in the past couple months.

I went to an endocrinologist about a year ago who tested for a bunch of common hormone problems. All of my adrenal hormones were high. Testosterone, DHEA, androstenedione, and aldosterone. However, my cortisol levels were never tested. I was told I have PCOS but there were no cysts on my ovaries.

I found a new endocrinologist who mentioned testing my cortisol levels, but later decided not to because I am underweight and cushing’s usually causes weight gain. To me, it seems like I could have the atypical kind, which causes asthenia instead of weight gain.

Let me know if anyone has suggestions on what to do now, I would really appreciate it. I am still in high school and I’m genuinely worried for my future if I can’t figure this out.

Peace and Love,
Alicia

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