March 12, 2019 at 12:47 pm #6569
Hi, I’ve had some cushing’s symptoms for a while now–specifically, odd stretch marks all over my body, spontaneous weight gain with the moon-face and buffalo hump, fatigue, headaches, and body pain. My general practitioner tested me for cushing’s, but it came up negative and she didn’t want to pursue it further. I got to an endocrinologist, who did a test that came back negative. Six months later, I did another test and it came back negative. I’m meeting with her tomorrow, but I’m really stressed out. I don’t know what to do, because my symptoms and circumstances match cushing’s and almost nothing else. I don’t have any other endocrinology disorders, and I show no signs of pcos, diabetes, or thyroid problems. So there’s really nothing else that fits. Did anyone get false negatives? Or should I start looking elsewhere for answers? This whole process has been emotionally draining, and I’m really unsure of if I should give up or press for more testing. Does anyone have any advice?March 12, 2019 at 2:09 pm #6580
I’m sorry for the delay in posting your questions. How did the appointment last month go?
Non-specific symptoms make diagnosis difficult, especially in the absence of high results on cortisol testing. Advice would be to keep track of when you feel particularly bad and see if your endocrinologists would allow you to hold onto some saliva testing kits and do the kits during those times when you suspect you may be experiencing high cortisol.
Have you been tested for sleep apnea? We had a patient story in the newsletter in the last couple of years where the woman suspected Cushing’s and was baffled by her low results only to discover after a sleep apnea diagnosis that she was essentially experiencing Cushing’s all night (constantly waking up was keeping cortisol high) while not having a tumor. She began CPAP treatment and her symptoms went away. I touched base with her recently and she said she feels better than ever and all symptoms are completely resolved.
That is NOT to say you must have sleep apnea! I wanted to point out that sometimes the culprit is hiding in plain sight. Even if we pursue a potential cause of symptoms and it doesn’t turn out the way we thought, we might then be able to rule that cause out in the grander picture of pursuing an accurate diagnosis. Regular use of steroids through breathing treatments or pain injections, for example, can cause a form of Cushing’s. There are some creams and inhaled allergy meds that contain cortisol as well….
If you feel that your endo is not very familiar with Cushing’s, it is worth your time to try to find someone who is. Depending on where you live, you may be close enough to a large center with experts who see and diagnose Cushing’s on a regular basis. For trickier cases this is just about the only way to go because even if a doctor “is familiar” with Cushing’s, if they haven’t diagnosed it a number of times they may only have textbook knowledge that might not be enough to tackle a more complex case.
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