I am writing this blog to share my experience as a formerly healthy person who gets a rare disease, my struggle to get diagnosed and get better and the crap that follows. In addition to helping me cope with my current reality, I hope it helps some of you that are in the same boat to feel a little less lonely and crazy as you make your way through this process too. If you want to read from the beginning, start here.
2 thoughts on “My life as a House episode”
You’ve talked about the involvement of your PCP. Have you gone to an Endocrinologist/Internal Medicine specialist? I also had two pit tumors removed in 2012. I felt good for about a year and things headed south. I was actually chasing Hyperthyroidism at the time my Cushing’s was diagnosed. Cushings was the bigger risk so that’s where our focus went. All of my findings came through my Endocrinologist. I never went to the PCP. They just don’t have the necessary knowledge. I’ll fast forward to this year. Since the start of this year, I’ve had RAI on my Thyroid…I had an adverse reaction to it and it through me into Thyroid Storm and Adrenal Crisis…three hospitalizations later, I have recently had a complete Thyroidectomy and am starting to feel better.
I’m definitely not saying that you are dealing with the same thing but I am recommending you find an Endo doctor that you trust like your best friend. You know that she/he will do anything to help find your underlying issues.
I have been seeing an Endo doctor at the University of Arkansas for Medical Sciences (UAMS) in Little Rock, AR since 2012. We have shared tears of sorrow and joy over the past few years. She’d do anything for me. I really suggest you find someone who you trust like this.
Hi Angie, you are completely right. And I do have a great endo who is very involved, knows there is something wrong, and is trying to help me sort it out. It is the person I refer to as “The Wizard” in my post, it is a term of endearment his patients refer to him by. I am sorry to hear about all of your medical troubles but am so glad to hear you have such a great ally – smart, caring and inquisitive doctors make all the difference!