My 38 yer old son, tumor, high cortisol

[lamb888]

I'm so confused and frustrated, my sons doctor did urine and blood tests, which came back with a level of 349 for cortisol. Then, he had an MRI done, and they found a 3mm tumor on his pituitary gland. He was supposed to go for a CAT scan, but hid doc just did another urine test!
He has been depressed, very low energy, tired a lot, for the past 5 years, they where treating him for low testosterone, (different doc.)
i am worried about him, any suggestions?
He has no health insurance, so I'm wondering if this doc is taking that into concideration, and not treating him properly?
He doesn't get headaches, but is depressed. Someone, please help?

[lamb888]

Thanks so much for your information! I think it is time to find another doctor!

[rumpled]

Any endo who says that a pituitary tumor that is secreting, no matter the size, says "to watch and wait" is not worthy of his/her license. Size is not the factor here, but the hormones are. ACTH and cortisol go hand in hand and should be tested together. ACTH is the pituitary hormone - that is the hormone that the pit sends to the adrenal to signal the adrenal to put out cortisol. So you need to know if both are high, one is high, etc. to know where the issue is.

That is great that he is doing a lot of tests, but he is not able to put the tests "together" to a logical conclusion and treat a person if he wants to wait. Pit tumors do not always grow so waiting is just going to mean his body will get more damaged from the cortisol for no reason. Why lose bone, muscle and other damage for ???

DHEA is another adrenal hormone but it is along the androgen axis and so the other hormones that need to be tested with it are LH, FSH, all the testosterones and estogren in order to figure that one out. AI is cortisol related, not DHEA.

[lamb888]

Hi,  Thanks for the info! My son has been going to a very good doctor, and he ran SO many tests on him, blood, urine, a CAT scan, etc. He then went sent my son to an Endochronologist to have him checked for cushings. We haven't gotten the results back yet, but this doctor sent him for an MRI. Both doctors feel that his tumor is so small, 3mm, that they will keep an eye on it. They don't want to operate right away, because they say that it is a risky operation. His tumor is on his pituitary gland.
By the way, what is ACTH?
My son will go back to the doctors for the results, and what ever treatment they might put him on, according to the results, in a few weeks. Just thought that I'd update you.

I started going to this doctor, because my DHEA is very low. He had me do so many tests, saliva, blood, urine, stool. I haven't gotten my results back yet, but he thinks that I have Adrenal Fatigue, which would explain my Chronic Fatigue, Fibromyalgia, and possibly my Lupus.Time will tell.

This doctor is very thorough! I've never had so many tests in my life. I am hopeful that he will be able to help both my son and me.

[rumpled]

349 is high - if the range ends in 34 or 50 so you have to know what the lab range is. It can  differ by each lab, so you need to get copies of everything (MRI reports, actual scans, labs, etc).

Even if you have one test that is high, one test is not diagnostic. Especially with something like Cushing's as you need more and more tests to determine source - that is, the source of the cortisol. Is it pituitary, adrenal or ectopic? ACTH and other tests need to be done. BTW, low testosterone is typical - the cortisol suppresses it! Depression is also a very common symptom.

He does not need every classic symptom of high cortisol, but some docs will dismiss him if he does not have them.