Hi Jess!
Recurrant cushings is hard, I think, to emotionally accept. I have some insomnia at times, but I too can sleep - lol... well, I guess if you call 5 hrs sleep. I typically wake up at some part of the night and look at the clock and putter around a bit before I settle back down, but I'm not one of those that are up for days (thank God!)
Pituitary Cushings takes a long time to develop before it can be picked up on labs. It may be that you had symptoms long before the 1997, but the symptoms were attributed to other things. The thing about Cushings is that it isn't just about cortisol and weight gain, the hormonal abnormailities affect your entire body in one way or another.
I am sorry that your disease wasn't cured. The scenario you describe is referred to as cyclical elevations. Your doctor is pretty sharp to stick with you and map your cortisol ups and cortisol downs. The thing with Cushings is that some doctors think that if you have had abnormal tests, and test normal, then there isn't any way you can have Cushings, but that isn't the case. The issue is that you have had abnormal tests, and a normal test doesn't rule out the abnormal tests, you still have the abnormal tests. In your case, you also had surgery once before that didn't prove your Cushings.
Well, what to do now? Your doctor will need to confirm that you do have a pituitary source of Cushings, and it isn't and ACTH dependent cause that is mimicing pituitary Cushings. One way is with the IPSS test. The IPSS test is mainly used to determine if you have Pituitary from Ectopic disease, but it can help the doctor determine what side of the pituitary the tumor might be on.
Some patients whose scans are not showing a clear microadenoma, may benefit from higher resolution scanning, like with a 3T MRI, dynamic imaging - where they take pictures as they inject you with dye - making a kind of movie, and possibly a scanning protocol that tightens up the slices to 1mm. Another thing is that many radiologist and even neuroradiologists "miss" pituitary microandenomas, so it is a good idea to have a pituitary neurosurgeon review the scans him or herself.
A bla is typially a last resort, but myself, I'd do that before I did a full pituitary removal. The reason for the radiation is to keep the tumor from growing (causing Nelson's) after your adrenals are removed.
I know you've been on the Cushie-go-round a long time, and I know you are ready to get off - lol, but work with your doctor, explore your options, and we all will be keeping you in our thoughts and prayers.
Minnie
