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@smccoll - I’m sorry for your daughter having all these symptoms, but no diagnosis.
I don’t know if I can offer much help, but my daughter had Cushing’s Disease with pituitary adenoma at age 27. How old is your daughter?
Before her surgery she always had low body temperature, now normal. She also had tachycardia before diagnosis.
We have learned that Cushing’s has so many faces.
What I think is important for you now is to get a team of endocrinologists that specialize in pituitary diseases. I’m sorry they didn’t find any tumor at her transsphenoidal surgery.
Are you seeing specialists at a major university medical center?
Make sure that tests indicate an adenoma before someone attempts surgery again. Also not all neurosurgeons are trained in pituitary surgery.
My daughter was treated at UVA in Charlottesville, VA. We went there because they have a highly regarded dedicated pituitary center. Where do you live?
By the way, did you consult with a cardiologist regarding her low heart rate?
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Thank you so much for your response. I’m so glad your daughter is doing better! So the surgeon did remove what he thought was the tumor, but it didn’t stain for acth & her levels didn’t fall. Anyways, I’ve taken her to MGH in Boston & the neuroendo we saw was very dismissive- said her highs weren’t high enough. After hearing all of her symptoms, told me to take her to a Gastro. It was a very disheartening apt. Dr. Friedman from California, does think she still has Cushings Disease & does see a new tumor. However, we have to find a surgeon we would trust. We’ve been busy ruling out anything else causing her symptoms before we subject her to a second surgery.
Who was your daughter’s endo & surgeon at UVA?