Misdiagnosis

After about a year of being diagnosed with Cushing's Syndrome, I decided to go see a new endocrinologist. I still felt awful 70% of the time, my symptoms either hadn't improved or were getting worse, nothing seemed right. We wondered if I might have Lupus like my mom. My symptoms seemed to fit; the fatigue and exhaustion, the joint pains, the mood swings, it would make sense. So, I went to my primary care doctor and asked for testing for Lupus. When she told me she was unable to administer the testing herself, she offered to write me a new referral to a different endo. I managed to get an appointment within the month (a miracle with the way my referrals had gone before) and next thing I knew I was heading in for another go around.

The first thing this doctor told me was he didn't take on second opinions. He didn't like to undo what had already been given to patients because that is what so many hold onto and refuse to let go. He took me on because my diagnosis didn't make sense: I was only 21 and had this Cushing's Syndrome label. He didn't like it. We sat and we talked about everything that had been going on, how I had been diagnosed, the medication I had been on and everything I had gone through while on it.

Then, he looks at me and says, "Can you stand up without using your hands?"

"Yes?" And I proceeded to stand up without pushing myself up and he nodded. He told me he didn't think I had Cushing's, that nothing about me pointed toward that. That I was too young, too thin, too active, too strong. That if I had this disease it would had started deteriorating the muscles in my thighs and I would be too weak to get to my feet with the assistance of someone else or pushing myself up. I didn't have the moon shaped face, the hump back. I wasn't Cushinoid. 

I felt like finally, someone agreed with me. It was always strange how I had this diagnosis, but none of the physical characteristics that went along with it and were usually the first warning signs. It had never made any sense. So, he ordered about a thousand lab orders. He wanted to check everything from Cushing's (because he had to) to Lupus to Vitamin D deficiency, everything he possibly could. 11 vials, 3 saliva tests, and 2 weeks later and I was back in his office.

The result?

"You don't have Cushing's. All of those tests came back completely normal." He didn't know where the other doctor had gotten that from at all. "You're basically completely healthy."

Then why did I feel like this?

"But you do have PCOS."

Polycystic ovarian syndrome. A much more manageable condition that doesn't require me to be on this ridiculous medication. It's a hormonal imbalance that means I have an excess amount of androgen. This results in the mood swings, the acne, the fatigue, even the depression that I had been feeling. It can cause irregular periods and cysts on the ovaries, but so far I don't have that extreme yet.

The solution? Birth control to balance my hormones and a medication called spironolactone. Combined, these should help regulate the symptoms I have been experiencing. PCOS can cause a whole list of other complications, but most stem from being overweight. Which leads me to...

I'm still an odd fit for PCOS. They refer to mine as 'Skinny PCOS' because I don't have the weight gain a lot of women experience with this disease, which also leads to them not being 100% sure what caused me to develop it. It's possible it was simply hereditary, but Insulin resistance can lead to PCOS, which thanks to my Nurse Katy, could have been part of my problem all along with the way I've had blood sugar issues for years. But that's more about my body producing more than it can use and not bottoming out so much. Anyway.

This makes more sense. I've been feeling a lot better since stopping Korlym. I haven't had as many drastically low points or been so exhausted. I'm hoping things can only go up from here and I'll continue to learn more about PCOS and how to manage it. But right now, I'm just happy to find some solace. 

It's been a wild year of roller coasters, but this seems like a step in the right direction.

Thanks for reading these things.

Xo, Shelby