And It's About Time There Was Some Support For Cushing's!
Like many other bios, I was the "Test-Taker", i.e., a full decade of testing was done (some of them absolutely ridiculous) before an endocrinologist diagnosed Cushing's. Of course, I had never heard of Cushing's so the clues and symptoms never added up. After an unsatisfactory patient relationship with an internal doctor who sent me all over the state (at my expense) for far-fetched hypotheses and tests which often also included my sister, I had a surgeon, who had recently removed my thyroid, refer me to a board-certified endocrinologist. He suspected Cushing's after just one office visit, an ACTH blood test, an MRI, and a dexamethesone suppression test. Just prior to this, I had been diagnosed with a myriad of things: Type 2 diabetes, folliculitus, polycystic ovarian syndrome, and finally, papillary thyroid cancer. Apparently the internal doctor never took the irregular periods, weight gain, camel hump, hirstutism, thin skin, easy bruising, striations, pear shape, and moon face as anything other than "poor diet and exercise". (He has since lost his license to practice medicine in this state.) Imagine how thrilled I was to finally find out what was "wrong" with me!
My new endocrinologist recommended the Mayo Clinic for a procedure called a "transphenoidal", which, to the layman, sounds really scary and a probable reason to have my head shaved. I was very relieved to learn that the procedure would be done through my nose. I spent a total of four or five days for preliminary tests, the boredom between being broken up by the fascinating campus of the Mayo Clinic. I returned approx. one month later for the surgery with dreams of being "regular" again some day soon. Admittedly, I was not too frightened until I was wheeled into pre-op, but luckily, I was anestheticised into oblivion. The next thing I remember is the most overwhelming thirst I have EVER experienced. With packs of cotton stuffed into my nose, I was forced to breathe through my mouth for 4 or five days afterward, but was not allowed any water for the first 2 days. Thirst was alleviated with dental swabs (sponge-on-a-stick), which I was allowed to swab around inside my mouth. I must admit, I cheated a lot and sucked every drop of water out of those sponges!
After a full day and a half of recovery, I was moved to the neuro ward to recover, still with my nose covered. I was very moody, and this was excerbated by yet another dexamethesone suppression test. Meanwhile, I entertained the nurses with my quick wit and useless knowledge of pop culture. They helped me pass the time with more laughs than I could imagine, under the circumstances... I was able to go home after 5 days of recovery and was instructed to recover for 4 - 6 weeks more at home before resuming my job. Since I felt fine, I immediately returned to work, but that turned out to be a mistake. The second day I returned, I got sick-- not very opportunistic for someone who works in television! My 18 months on prednisone was pretty uneventful, considering the horror stories I had heard. Nevertheless, I was quite happy when my blood tests indicated that I could stop taking it.
One thing that has always bothered me about Cushing's is that I totally expected to return to my former thinner self, with no more chin hairs and a new burst of energy. However, this was not the case, and I was convinced that the surgery did not "take". I have since found out that there is no miraculous recovery. I no longer have the moon face, the facial hair has lessened, and I no longer have to take metformin for type 2 diabetes, but I have not lost much weight, I am still often exhausted. Occasionally I wonder what it was all for, but reading the bios here confirm that it was a necessary procedure that only gave me a better long-term quality of life. I pray daily that Cushing's will someday be taken off the list of "orphan diseases" so that more research can be done and a cure will at least be in sight. Perhaps one day...
It has been 9 years since my transphenoidal at the Mayo Clinic and I have since moved on to a larger city, acquired a new internal doctor (we have no endocrinologists in our HMO network even in a city of 180,000!) and he monitors my ACTH levels two to three times a year. I imagine it is getting time to do a dexamethasone suppression test soon and all of the fun brown jugs that go with it.