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Shelleyw, Adrenal Bio

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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.

Alex, Pituitary Bio

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After long and tiring process was diagnosed with Cushing disease in June 2011.

Had a surgery to remove pituitary tumor in July 2011.

Remained on the cortizol for 18 months.

If you live in New York metropolitan area and have a pituitary tumor and would like to ask some questions or need suggestions, please email me.

I have seen the worst of this disease, but was able to make it through. I was lucky to have right doctors (neuroendocrenologist and surgeon).

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