So I've had hormonal issues most of my life. I started having symptoms when I was 15, which is also when I started menstruating. I am now 40. After getting nowhere with multiple endocrinologists over the last 5 years, I finally traveled to a highly reputable endocrinologist at Emory.

She was wonderful. She asked me tons of questions, and we talked for over an hour. She doesn't think I have PCOS or Cushing's, and even if I do have pituitary tumors like my last endocrinologist claims, she doubts they are the issue at all. They are small and will likely stay small, and my Prolactin is normal.

As it turns out, she had recently attended a medical conference, and the speaker was discussing monogenic obesity. For the uninitiated, monogenic obesity is a family of rare genetic diseases (like Prater-Willi and others) in which the appetite doesn't appropriately turn off. Once I told my new endo about how I never get full, and how I've had learning issues my whole life, a light bulb went off in her head. She thinks I might have a form of monogenic obesity. She just doesn't know which one yet.

She ordered blood work and submitted a referral to Emory genetics. As an endocrinologist, as great as she is, she is understandably limited in her knowledge about monogenic obesity. She couldn't tell me how some of my symptoms were connected, for example. I am waiting on Emory to call me so we can get a genetics appointment scheduled.

The genetics appointment will likely be a 6 month wait. In the meantime, I'd like more information. My thoughts are just swirling right now. Can anyone give me more information on the different types of monogenic obesity? Is there a group I can join to connect with others? I couldn't find any subreddits or Facebook groups, and Google didn't have much except a scholarly article or two.

Also, if this is the wrong subreddit, feel free to connect me to a better one.

Thanks!