PCOS? Nope. Cushing's? Nope. Then what is it?

[rocks_ann]

My symptoms are all over the place, but the most troubling is the 60 pounds around my waist that make me look pregnant and will not go away no matter what I try.  After three years of diligent diet and exercise, I became completely desperate and literally starved myself -- 250 calories or less per day for over four months -- and I only lost a few pounds of water weight.  (I realized that starving myself could cause permanent organ damage, but like I said, I was desperate.)  I finally found a doctor that believed me and didn't assume I was secretly eating cheeseburgers all day.  So I had a TRH test, and my blood work came back showing that all thyroid levels are normal, LH and FSH are normal (ruling out PCOS), but testosterone, DHEA-S, and cortisol are elevated.  However, I am missing many of the key indicators of Cushing's (I have a regular period, no moon face or back hump, no excess hair, no thin skin) and my doctor thinks Cushing's is highly unlikely.    

So I've been googling like crazy and cannot find any possible alternative diagnoses.  I'm currently taking a tiny dose of steroid to try and create a negative feedback loop so my body will produce less cortisol.  I'm going back in a few weeks to see if it worked, but meanwhile I'm left wondering what the heck is going on with me?  I know that everyone is different and you can't expect to see every textbook symptom of a disease, but I haven't found any literature that suggests Cushing's can be diagnosed on elevated cortisol alone.  Anyone have any ideas?  

[allmymarbles]

High cortisol, as well as revving you up, gives you a pot. Try ashwagandha. It has worked wonders for me. I wish someone had told me about it sooner.

[rumpled]

Too few calories will cause the body to not lose. And as you said, it is not good for you.

Cushing's does not require all the symptoms - I had no moon face, diabetes, low BP, low cholesterol etc. I know of others with no hump, no striae, no this no that - but alas, some docs want the entire list yow! and so people run around for years...

OK but if you think you have Cushing's AND you are adding back a steroid to trick the diurnal rhythm (oooh!)... it ain't going to work... If the dose is truly tiny, you are just adding steroid on top of steroid - plus you have to consider the half life of that steroid and if you are taking too much, you shut down the adrenals and poof - that is horrid...

Um - Cushing's is hypercortisolism - elevated cortisol... what on earth have your doctors said? They may think like endiots it is rare and you have exceeded their quota for the year, or that because you don't fit into the slot perfectly ergo you cannot have it so wait and you will (that does not work either)...

Get a copy of everything you have so far and treck around until you find a neuro-endo that knows Cushing's and has seen it in every shape and size...

I have pics of me in my profile - but at first I did not gain weight... I also had PCOS - which made my T high which is normally low in Cushing's. You confuse them.