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Addison's Disease Message Board

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Hi Van,

I recognized my own symptoms as being Cushing's. Without that-I wouldn't have had any idea what to do since none of the first doctors I saw had any suggestions. I don't blame them at all---I don't look the part of a Cushie in the least.

I had all of my pituitary hormone levels checked, including FSH, LH, TSH, ACTH and IGF-1 in conjunction with estrogen, testosterone, free T4 and T3 and cortisol levels. My results all fell within the normal range but usually on the low normal side. My TSH would rise and fall depending on if my cortisol was high or not. (Cortisol elevations cause TSH to drop resulting in central hypothryoidism or low thyroid from lack of TSH stimulation to make T4).

Nothing was quite right but nothing was abnormal enough to call it anything.

Cortisol testing for Cushing's includes collection of 24 hour urine free cortisol, free cortisol levels measured in saliva samples and midnight blood cortisol collections. I was able to do all of these tests at my local lab whenever I felt symptomatic.

Symptoms of a high cortisol time for me include having more energy, feeling hyper, less sore, irritable and bossy (my husband likes that one!) and difficulty sleeping. Whenever I felt like that I would test. But they all came back normal.

Sometimes this disease just takes time to have cortisol levels spike high enough to count as abnormal. I also have wondered if medications I took last year interfered with testing. I guess I will never know.

I had an MRI last year but no tumor was seen at that time. (in my pituitary). I will need another one at some point soon...I hope it shows up eventually!

The tip off that my disease is being caused by a pit source is that when my blood cortisol is high at night (inappropriately) my ACTH levels are elevated also. If I had an adrenal tumor causing the Cushing's...the ACTH should be almost undetectable. If I had an ectopic tumor, then like you it would be more likely to have very, very high ACTH levels....although this isn't a perfect science. I may have to have more testing to determine the source but I am not sure yet.

Even if you have ectopic Cushing's, with a tumor in the lungs or elsewhere, the best doctor to see is someone who specializes in Cushing's disease. There are two very popular doctors on the west coast, one in LA, California and one in Portland, Oregon. You can find them by finding support sites for Cushing's disease online. One of the two would likely be an excellent choice for you.

you are right-I have not heard of any memorable specialists in is well worth a trip to seek out someone who really sees many of these kinds of cases. Then, it could be you can have surgery closer to home. BUT-If it ends up being pituitary-it is vital you go to one of the few pit surgeons in the country to have the job done carefully and correctly the first time around. There a only a handful truly qualified in the country-they should have an excellent track record of first time cures and have performed the surgery hundreds of times.

Good Luck-this is a scary disease and a lonely one. But-you are asking all of the right questions. Fight hard and be your own advocate and you will get cured.

Take care,

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