Stress does not cause it, but the high cortisol can cause a lot of anxiety and depression .
Normal sources are a pituitary tumor, adrenal tumor or ectopic being rare. The most common is just taking steroids like for other disorders such as asthma. Ectopic would be signaled by super high ACTH. Do you have a tan?
I would find a good endo, a different one that knows Cushing's. You need a pituitary center. You have enough tests now to go. The normal MRI should not hold you back. Many times they smaller rumors don't show up as they fall between MRI slices or are missed.
I had it myself. I had the opposite. I crashed during the day and was high all night. I never slept.
Thank you so much for responding. It's nice to not feel so crazy. This whole experience has been quite isolating, I'm sure you understand.
I used to not sleep at night and then couldn't get out of bed for even noon classes. It's strange, it almost feels as though I have slipped from Addisons to Cushings.
I have never taken any steroid anything although adderall/vyvance certainly feels like a mental steroid. Does that count? I worry that there is a connection between the long term effects of ADD medicine, combined with a brief use of antidepressants (plus abilify) a few years back, plus some sort of vagus nerve sensitivity, that could have created a perfect storm by manipulating the dopamine receptors and causing something kinda sketchy up there or at the very least, explaining sympathetic dominance. But then again, what came first; chicken or the egg? I keep being told that the brain chemicals and the hormones are separate but I know that is some kind of relationship between the two I just haven't quite gotten there yet. I said something about prolactin to my OBGYN and she asked me if I was lactating and before I could finish the word "no" she told me I didnt have a pituitary tumor. ha..
I am considering making an appointment at Emory Pituitary Center over the summer once I get through finals. My mom suggested that I go away for a yoga retreat thing to help manage my stress. Will probably do both..
I do not currently have a tan but I would love to know why you asked.
Kudos to your doctor for doing 24-hour cortisol saliva test instead of relying on blood tests. Was it 4 samples of saliva?
Did the ADD medication work for you previously?
I used to take Adderall. When I started to have lots of medical issues, the Adderall was no longer effective. I was hyper all day long...wired, but tired. Under-active adrenals & thyroid. Low dopamine, high glutamate.
I believe I had vagus nerve sensitivity as well. Did energy work (including Reiki & acupuncture) to calm it.
I feel for you. I wish for you lots of patience. Stay connected here to help you keep your sanity and know that you are not alone in your experiences.
Yes, it was four samples. I really like the doctor I have now, kudos to him indeed.
It is hard to monitor the effectiveness of the ADD medicine. I have been on it for most of my life. Because of this and the accumulation of all these health issues I don't really have a good grasp of how I am supposed to feel anymore. (for example, I didn't know brain fog was a thing. I thought brains were just very foggy places for everyone so they give mind clearing pills to the especially cloudy children, like myself) However, I am going to look into dopamine and glutamate. I will say that my ability to keep up with the pace of life itself is declining. I am doing the best I can however, I am frustrated because I feel useless when I do not take my adderall or vyvance but overwhelmed and anxious when I do take it. It is such a violent swing to take over and over again. I am so exhausted by it.
Interesting about vagus nerve and reiki and acupuncture. When I first started to suspect I had a hormone imbalance, I tried acupuncture to attempt to regulate my menstrual cycle. I really enjoyed the deep sleep.
Thank you for the kind words!
I actually like a mix of blood tests and urine and saliva. The reason is the urine and saliva are the "free" form of cortisol and more prone to issues with medications and cortisol binding globulin. Only a few docs test for that and know the impact on testing. It also works that sometimes point in time testing is hard, and averages may work better for some, and vice versa. There are pros and cons in all the testing so it is good to have a mix.
The only test I despise is the dex suppression test as the docs use it as a test of exclusion when it should be a test of source logically. But no test is perfect. I failed all suppression tests (still do) and so most docs will dismiss just on that.
I asked about the tan as ectopic rumors pump out high amounts of ACTH. It is that hormone that causes the tan as the first fifteen molecules of the ACTH is the same as melanin. I have high ACTH due to my tumor so I have a tan and age spots. Lovely.
I did/do accupucture. Love it.
I actually like a mix of blood tests and urine and saliva. The reason is the urine and saliva are the "free" form of cortisol and more prone to issues with medications and cortisol binding globulin. Only a few docs test for that and know the impact on testing. It also works that sometimes point in time testing is hard, and averages may work better for some, and vice versa. There are pros and cons in all the testing so it is good to have a mix.
The only test I despise is the dex suppression test as the docs use it as a test of exclusion when it should be a test of source logically. But no test is perfect. I failed all suppression tests (still do) and so most docs will dismiss just on that.
I asked about the tan as ectopic rumors pump out high amounts of ACTH. It is that hormone that causes the tan as the first fifteen molecules of the ACTH is the same as melanin. I have high ACTH due to my tumor so I have a tan and age spots. Lovely.
I did/do accupucture. Love it.
Interesting.
My ACTH blood test came back 65 pg/mL (reference 6-50) So I know that it is high but I do not know how high that is considered. The decision I have to make now is what to do next. My options are to either go to a pituitary specialist (Emory pituitary clinic) despite having a clear MRI or to try to manage my stress on my own with supplements.
I am not sure what to do.
The ACTH is moderately high, and given that the test is rarely done well (chilled tube, spun immediately) the level can drop just from lab handling.
The pituitary clinic can look at the films and may pick up on other things than the radiologist did.
I hope they accept you. Keep us posted.
I went back to my endo and she did the dex suppression test which came back totally normal. As you said, upon getting normal results she no longer suspects cushings. She suggested that I see a new psychiatrist to discuss whatever concerns I have about the ADD Medicin.
I know that normal labs are supposed to be good news but this really feels like bad news. I feel crazy and like everyone thinks I am making this up.
She said that I can go to emory if I want to but I may not need to since the only concrete evidence I have of something being wrong is proof of elevated cortisol (which she says can be stress) and somewhat elevated ACTH, aside from weight gain, acne, constant hunger, ect.
It's like I have the signs of cushings and PCOS but don't have the labs to support either diagnosis.
Stress can raise cortisol for a short moment... But not overall for say a urine test.
A Cushing's friend of mine found it interesting that her mom who was terrified of needles, like screaming baby, faint type (which was horrible when she got cancer) got a cortisol test and the needle stick was a disaster with many sticks and her mom totally stressed out so my friend totally expected it to be high. It was normal.
Your current doctor is not an expert. Sad. Find one.