Cushing's Syndrome Support Group

You need to see an Endocrinologist. And if you're seeing one and they're telling you your cortisols are not high enough to be Cushings, you need to find another one. This is a fight for your life, and you're going to be doing it uphill, but you keep pushing. You will find the right doctor. This many not be Cushings, but something is obviously wrong. Get to a good Endo. And God bless.

Hi i had ALL that trouble too...it took me over a dozen no kidding drs to finally get a diagnosis the only way they found mine was with a Petrosal Sinus Sampling. It's done through the femoral artery on the inside of your thigh. They run a lead from there into the arteries coming from the pituitary and take blood from there. When the blood reveals an elevated hormone level (acth, prolactin, etc) they know that the pituitary is the source for the tumor. My tumors were not seen by MRI or cat scan so go to an endo and request the sampling its not comfortable but it will tell for sure if you have it or not. I went through everything your going through but i gained 60 lbs in 6 weeks got very depressed was so sick and nobody understood so i became isolated and my world completely changed but cortisol levels were so unreliable up and down they just couldn't make truth of it till the sampling. I was 15 when this all started, 16 at surgery 60% of my gland was removed, 6 months after surgery i was still sick so i had to do radiation 5 days a week for 5 weeks I wish you all the luck and if you need someone to talk to you can always email me

i had the same experience.. i finally got a dr to consider it .. he did a 24 hour urine .. it didnt show a high cortisol but a high jetosteroid.. i have a scan of my adrenals tomarrow.. i dont know if this is cushings but i know they used to use this hormone to dx cushings in the past .. my dr i think is ruling out an adrenal tumor.. if it doesnt sho i am going to ask him why he isnt looking at my pituatry .. and unfortuanty there is one more cuase of this particular elevation which is breast cancer.. i did have to have abiopsy in 1999.. it showed benign..the very simple dx of pcos isnt considered becasue in that case its high insulin diue to insulin resistance that casue the elevation in adroges and i am not insuiln resistant and had normal periods my whole like til age 42 i newvre missed a period unless i was preganant..i did lose 5 babaies though .. so i have been destine for all this hormoal stuff .. i am just praying for an answer.. i know what you are going thru !!

im so sorry i am such a bad typist and i dont se a spell checker .. hope you can get the gist of my last post!

Update us when you can. We'd like to know how you're doing and if there's been any progress in diagnosing your illness. Again, it's an uphill battle, but it can be fought. Take care of yourself.