Cushing’s Diagnosis and Treatment

Posted by ztillman @ztillman, Jan 27 9:31pm

Hi everyone, I’m writing this trying to get as much information as I can. My girlfriend and I have been struggling to find specialist or even a physician who cares. Our “treatment” with our current endo ended tonight, and we are desperate to get treatment. Currently, we have no idea whether this is pituitary or ectopic. Has anyone had experience with the pituitary center within the Mayo Clinic? We’re in St Louis so this will require travel. We’re exhausting all efforts for adequate care and physicians who can provide answers. We have not had any luck with even getting called back from Cushing’s experts in our area and have been struggling to even try Vanderbilt in Nashville. We’re looking for advice and support as her symptoms continue to progress. 9 months ago she was a CrossFit athlete, she’s gained 80 pounds and can barely work or do homework.

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Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | Jan 28 8:49am

@ztillman
I’m so sorry to hear that you can’t find adequate care near home.
Mayo Clinic is one of the top Pituitary centers in the country.
https://www.mayoclinic.org/diseases-conditions/pituitary-tumors/care-at-mayo-clinic/mac-20350556
My daughter was diagnosed with Cushing’s 15 years ago. We also had to travel, but it’s so important to get the best testing and treatment.
Cleveland Clinic and other University Hospitals also have top pituitary centers.

jojobunny | @jojobunny | Mar 9 8:40am

I am sorry you are struggling to find answered. I too have had this problem. I have recently been to Mayo Rochester, MN. Finally diagnosed with Cushings disease due to my 6mm pituitary tumor. It was a struggle for years and is very debilitating. My advice would be to get a referral to go to Mayo from your current endo or primary care provider. My insurance wouldn’t initially pay for my referral but after the diagnosis they decided to pay. Cushings is a hard disease to diagnose. It took over a year of testing to confirm mine. It was stressful and exhausting. Don’t lose hope. It’s uncommon and not on most doctors radars. Be advocate for your partner. She knows her body better than any doc and you see her decline. Speak up for her when she can’t speak for herself. Best of luck.