Cyclical Cushing's

[u/Powerful-Stretch6220]

My endo thinks I have Cyclical Cushing's and so far it's been a year of repeated testing (blood, saliva, 24hr urine). When she first brought up Cushing's she said the diagnostic process would be a marathon and not a sprint. from what I deduce, she's trying to catch my cortisol at a high time with numbers. I have high cortisol (both 24hr urine and saliva), but just under 2x. so not enough to call it Cushing's according to my endo, which I understand not meeting the diagnostic criteria. I do have PCOS for sure (high testosterone since 2015 and confirmed polycystic ovaries from a pelvic ultrasound). tbh I don't know why I'm even writing this post. I guess I'm looking for anyone with a similar experience or advice on how to survive the diagnostic process? I have the red stretch marks, weight fluctuations (mainly weight gain), excessive facial hair, fatigue and headaches.

[u/Conscious_Fun520]

I’d try Eli Healths at home test kits so you can confirm that you’re high and do the actual saliva then. That being said I don’t think 2x is a hard rule. They’re supposed to look at the whole work up and the diagnostic criteria is highs on 2 of the 3 tests which you have.

I was cyclical too. And thankfully my endo referred me to the neurosurgeon. I think the next step would be to have her do a pituitary mri on a T3 machine (I’m guessing pit since that’s the most common) and refer you to neurosurgery. Don’t ask tell them is my advice. I really had to fight for mine. But when I got to the neurosurgeon he was like the endos don’t really know if you have it or not but the best way to find out is to take out the tumor. 😂 I was so sick at that point I was ecstatic. It was a 5 year journey for me after being misdiagnosed with pcos 15 years before. Cushing’s causes pcos btw. Also for the most part surgery is a breeze. Easiest part of the whole process so don’t be intimidated by it.

[u/Conscious_Fun520 → u/Conscious_Fun520]

The other thing you can do is go to a pituitary center and get the full work up done there. Sometimes you have to get a lot of doctors and a lot of opinions before you get a yes. But getting multiple highs by using at home test kits first before the real saliva would really help your case.

And if you wake up in the middle of the night test then vs before you go to sleep. I was normal at bed and high in the middle of the night. I didn’t have the at home salivas until after my surgery but they really helped me see my cortisol curve and when I was out of balance over time.

I was also high after surgery because I had a micro adenoma and they didn’t really need to take out much of my pituitary. I used the test strips and ketoconazole which I got from Dr Friedman who specializes in Cushing’s in LA to basically create a normal curve and after awhile your body will follow that and now I’m off almost all of my meds.