Skip to main content

Cushing's Awareness Challenge - Day 18

What should you do if you think you have Cushing's?

1.  Click the 3 lines you see in the upper right corner, scroll down about halfway, and take a look at some of those helpful websites.  Those sites are what got me to the right endocrinologist, and helped me through the testing phase.

2. Make an appointment with one of the endocrinologists you find on those sites.

3.  Make a list of symptoms to bring with you to your appointment.  I also brought tons of photos, that showed me before Cushing's, so your doctor can see the progression.

4. Test like it's your full time job.  Midnight salivary cortisol tests every night, 24 hr urine free cortisol tests a few times a week, take as many lab orders and supplies as your endocrinologist will give you.

5.  Repeat until you get a diagnosis.  You may have to repeat this process with multiple endocrinologists.

6. Reach out for support!  To me, or on a Cushing's Facebook group, or even on a website's forums. (Where my support system was originally started!)


(Image from CSRF.netDrawing is reproduced from: Mayo Clinic Family Health Book, 2nd Edition, 1996)



Comments

Popular posts from this blog

2 Years Since my Adrenalectomy...would I do it again?

On September 2nd, 2010, I spent the day in one of the many operating rooms at MGH.  I had spent the night before talking and texting to friends and family, after seeing Wicked and going back to the hotel across the street from the hospital.  I cried a lot, because of the scary and fairly dangerous surgery ahead, because of the hope that this disease would FINALLY be behind me, and because of the long recovery ahead.  I woke up early and walked across the street with my mom, and my dad met us there.

The wait that morning was incredibly long, my 2 other surgeries in the 9 months prior had been very early and a pretty short wait.  I cried some more (no one should be surprised by this), and finally headed into the prep room.  I met with my surgeon one last time, and kissed my parents one last time.  As I waited in the cold, dark, cement hallway outside the numerous operating suites, a surgical resident marked the incision sites.  I knew there would be many small incisions, but having the…

Cushing's Awareness Challenge - Day 29

Cushing's Awareness Day

Over the past 8 years, I have spent a few Aprils blogging every day for Cushing's awareness.  I will not be blogging daily this year, but don't want to let the month go by without spreading some awareness!


April 8th is Cushing's Awareness Day because it is Harvey Cushing's Birthday.  Harvey Cushing is the father of modern neurosurgery, and he also was the first to discover Cushing's Disease in one of his patients.  You can see a drawing of his patient (Minnie G) in many text book articles about Cushing's.