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Could this be Cushings?

Guest Shelley


Guest Shelley

I'm not sure if this could be Cushings or if I'm just crazy. A little about me:

I have been going to my PCP for fatigue, weight gain and shortness of breath, an ear nose and throat specialist (for a thyroid nodule), my OBGYN (for painful irregular periods) and an endocrinologist for PCOS


The PCOS treatments did not help with my fatigue, weight gain, depression, acne, irregular periods, intolerance to exercise ( I literally fall over exhausted after only about 10 minutes). In fact the Metformin they gave me for the PCOS made me 100X worse, I was told it wasn't the medication it 'couldn't do that' and to double my dose. I stopped the meds and seeing my endocrinologist after 6 more weeks of doubled dose and not even being able to get out of bed I was so tired and weak. I was told I'd drop weight on the Metformin but i actually gained more.


I recently started going to a new endocrinologist who informed me that I do not have PCOS after having ultrasounds of my ovaries. I decided to see him due to a high prolactin level on blood work from my OBGYN. He tested for a multitude of hormone levels including DHEA, Progesterone, Testosterone, Thyroid panel, FSH, LH, Vitamin D, Lipid panel, A1C and Prolactin. This time my prolactin was normal. Almost as an after thought he suggested a midnight saliva cortisol test. It came back high, my level was .22 mcg/dl and normal was less than .09 mcg/dl.


I was actually relieved to have something show as a problem after nearly 6 years of knowing something was wrong but not finding a reason and lots of normal tests. The doctor ordered a followup 1mg overnight Dexamethasone suppression test that came back normal. Is Cushings still a possibility or does that rule it out completely. I'm so frustrated I want to scream. Any input would be helpful. I'm going back to see the endocrinologist next week. Are there tests I should request?

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  • Chief Cushie

Unfortunately, no one test can rule out or confirm Cushing's. Just because the Dex test cam back normal doesn't mean that there is no Cushing's. Sometimes, we have to repeat the same test(s) multiple time to "catch" the highs.


There's a compilation of some of the tests used for Cushing's at http://www.cushiewiki.com/index.php?title=Testing including a testing tree to show how testing could go.


Some patients are Cyclical, meaning that sometimes there are normal results and sometimes there are positive restults.


Best of luck to you - sometimes this can take a long time to diagnose. I'm glad your endo is testing you.

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