Hi all! I am joining this group because my 19 year old daughter is going through testing for cushing’s.
She has PCOS although she is very thin. Her cortisol levels have come back high on more than several occassions, so our GYN sent us to the endocrinologist.
They have done 2 24 hour urine, Dexa suppression, cortisol serum, ACTH, CBG, DHEA, 2) Salivary tests. This has been ongoing since May. The Endo said that she has failed all of the tests, and she just did a third 24 hour urine and CBG again.
They are really puzzled, as she really doesn’t fit the normal symptoms list(neither did she fit PCOS). They have said that it seems to be adrenal as the ACTH was low and the DST was high. So we are patiently awaiting the results.
She is my only child. I am so afraid. We also have Ehlers-Danlos syndrome.
May 30, 2015 @ 05:02:13
I see this is not a recent post, but in case….I have EDS-H and also had atypical PCOS (I’m 56 and had a hysterectomy). I was a very thin girl, late menses and delayed development, and no other PCOS type symptoms ever. They could never tell me why. I wasn’t diagnosed w EDs until 5 years ago, after I developed GCT ovarian cancer. It was caught stage 1A, which is common for this rare type a sit grows very slowly. The chances are good it won’t return. The tumor was encapsulated in my ovary and large as a grapefruit. I read a few weeks ago that GCT type grows in the connective tossue. Now I wonder, strongly feel this is all connected to my EDS. I’m asking my onc next week, but At this point somebody would have to explain to me how they know that they ARENT connected for me to believe otherwise. I hope your daughter is doing better.
Feb 03, 2023 @ 03:52:48
Hi It seems is an old post, your daughter likely has Cyclical Cushing, due to only one test positive, and also she has EDS, I’m a Dr. and an hEDS sufferer, I have cyclical cushing’s and had a full blown Cushing’s syndrome when I was 13 and sent as an exchange student to a family in Canada with a no Salt at the table and no processed food policy, in EDS is due to a low salt consumption that you have high Cortisol because your body can’t control it’s blood pressure properly and you really do need to increase your salt intake so you can lower your Cortisol levels, but sometimes you just need to have surgery . Hope your daughter is fine, and sorry for my message coming so late.