Well given the very low cortisol I'd think you should be given cortisone and also increased thyroid meds to get your levels up. This would be the minimal treatment needed even while they get their act into gear and start looking into everything else.
I think that you should go back to this endo (who finally agreed you have a problem) and demand his assistance at least to start treating.
Low cortisol can be life threatening. Please go back to the endo and somehow convince him to start treatment even while you wait to be seen by the specialty clinic. Bring your hubby with you for extra support. Sounds like despite the divorce he could be there as a friend for you.
Sounds like you have hypopituitary. This can cause all sorts of deficiency and problems.
Make sure your hubby knows the seriousness of your condition. If you collapse or are otherwise sick he needs to take you to the emergency room (with a copy of the results from your test) and demand that they give you cortisone. This is very very important.
Let us know how you go.
I agree with Sally. Please call the endo and be firm in asking. I would also call the clinic and get their fax number. Fax your lab results over with a cover sheet with your information....maybe when they see your results it will light a fire under someone to get you in! :)
I was curious to see if u found out anything yet? I have a dr like u did and have reached adead end. My ACTH level was 4 times higher than normal with many symptons of endocrine tumor. When the MRI's all came back clear he said it was depression. I am depressed but that did not change my blood! I feel so bad and can't get answers from my dr so was curious if u found out anything about your high ACTH level. Thank you and good luck.
Just came across your post and have a few questions for you Dawn.
1) Have you started any treatments? Has it helped?
2) I am just across the river, in Vancouver, and am looking for a clinic that will perform the ACTH stimulation test. Who performed this test for you? Did insurance cover it?
I have been recently diagnosed with Adrenal Fatigue. Saliva tests show no cortisol and blood show very low cortisol levels, so my doc would like to have these tests done to figure out why these values do not directly correlate, but says its difficult to find an endo who will do it. I have started taking 10mg of cortisol twice daily and at least I can get up and do things now. But I also am not converting to T3 like I'm suppose to and my doctor doesn't want to work on correcting that until we have figured out the adrenal issue because one affects the other.
Any info you can provide will be most appreciated. Hope you are feeling better.