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Adrenal Gland Mass
I am hoping someone can help me here! I have been having serious issues with shortness of breath, fast heart rate, and stuff now for about 2 years.....I just found out today after having a CT of my chest that I have a 4.1cm well-circumsized low dense mass involving the left adrenal gland, and now I am freaking out. What does this mean?
I am seriously confused now.
I went to see an endo last week. She says my tests (UFC at 164.5, lab range to 7-80 and my DST 4 ug/dL, lab range says suppressed <5) means I "probably" have a secreting adrenal tumor. She doesn't think there is ANY pituitary involvement, even if an ACTH test has not been done. !
She discounts physical stress from recent appendectomy, emotional stress from any source, and confirms "there is increased cortisol measured, if urine is increased", but she doesn't think my output of 3500cc is very much and that amount of urine would NOT increase cortisol measurement (normal daily urine output 1600 to 2000cc/day)
She wants two salivary cortisol swabs at 11pm (done at home) and another DST (.5mg for 48 hrs) followed on third day with UFC 24 hr., and grudgingly added an ACTH test. She says, "don't go out an do a lot of physical activity, climb a mountain, ha, ha," but she says stress doesn't contribute to high cortisol.
I'm not sure what any of these tests will prove? AND she didn't give any indication of when to take the ACTH test. Also, the ACTH test doesn't include a plasma cortisol at the same time. Would the ACTH test mean anything by itself? If I am to take the ACTH test, when do you think, with the salivary cortisol and DST test, would be the most helpful time to take it?
Wouldn't my 1st UFC need to be done 3 times to confirm high? Isn't it necessary to get 3-4 times increase in highest lab range to confirm Cushings syndrome?
Wouldn't my 1st DST test mean ACTH (pituitary) involvement and NOT adrenal mass secreting? cortisol wouldn't suppress at all if mass was secreting independently, right?
All the endo could talk about was which surgeon would be best to remove the adrenal mass. This seems to me like a "make work" project. I'd just as soon keep my adrenal gland until its proven the mass is the problem. It seems I would be adrenal insufficient afterward, and could potentially lose the other gland too, at some point.
Your opinion is greatly appreciated.
I went to see an endo last week. She says my tests (UFC at 164.5, lab range to 7-80 and my DST 4 ug/dL, lab range says suppressed <5) means I "probably" have a secreting adrenal tumor. She doesn't think there is ANY pituitary involvement, even if an ACTH test has not been done. !
She discounts physical stress from recent appendectomy, emotional stress from any source, and confirms "there is increased cortisol measured, if urine is increased", but she doesn't think my output of 3500cc is very much and that amount of urine would NOT increase cortisol measurement (normal daily urine output 1600 to 2000cc/day)
She wants two salivary cortisol swabs at 11pm (done at home) and another DST (.5mg for 48 hrs) followed on third day with UFC 24 hr., and grudgingly added an ACTH test. She says, "don't go out an do a lot of physical activity, climb a mountain, ha, ha," but she says stress doesn't contribute to high cortisol.
I'm not sure what any of these tests will prove? AND she didn't give any indication of when to take the ACTH test. Also, the ACTH test doesn't include a plasma cortisol at the same time. Would the ACTH test mean anything by itself? If I am to take the ACTH test, when do you think, with the salivary cortisol and DST test, would be the most helpful time to take it?
Wouldn't my 1st UFC need to be done 3 times to confirm high? Isn't it necessary to get 3-4 times increase in highest lab range to confirm Cushings syndrome?
Wouldn't my 1st DST test mean ACTH (pituitary) involvement and NOT adrenal mass secreting? cortisol wouldn't suppress at all if mass was secreting independently, right?
All the endo could talk about was which surgeon would be best to remove the adrenal mass. This seems to me like a "make work" project. I'd just as soon keep my adrenal gland until its proven the mass is the problem. It seems I would be adrenal insufficient afterward, and could potentially lose the other gland too, at some point.
Your opinion is greatly appreciated.
So I finally got a call from the Endo's office today, and they have scheduled me an appointment. However, it is not until March 24! I was just devastated to hear of that long of a wait to see an ENDO. I want to just lay down and cry and give up! My health is slowly turning my life upside down, and there is not a thing I can do about it!
Good! They can test you for both! But at least you can go see an endo. The sites I sent you - some have doc lists BTW...
So, I just got back from my appt with cardiologist, and he agrees that I need to see an endo, and is office is setting up that referral for me! Hope to hear about that appointment soon. I ask him if he thought that my symptoms (since not heart related) could be due to the adrenal gland, and he went on to talk about the pheochromcytoma (but stressed to me how rare they are), and said that if it is indeed a pheo, it certainly sounds like all of my symptoms! However, he also said that a heart cath will be a last resort, and although he is reluctant to do it for someone my age, and my other stress tests and stuff shows no signs of blockages, he will have to do one if we don't find reasoning for the symptoms! I am praying that this does not happen because that scares me really bad! Also, I also checked into a place in Indy about an endo without referral, but I am going to see what the local endo has to say first before I travel to Indy (who know the endo here may refer me there anyway). I am just so glad I am getting the endo referral and hopefully they will check the cortisol!
They don't remove the tumor as if you go online and find a video of the surgery, it is pretty hard to get back there to remove the adrenal with the tools, let alone get a tumor off it. An adrenal is pretty small (hence why most of us have normal reports both before AND after removal... which is kinda funny and scary... while pathology shows us to have huge adrenals) so the whole puppy has to come out and the other one will probably enlarge a bit to work more to make up for the extra work, dang it.
I cannot believe your doc is overlooking cortisol. It is like a giant flag! I remembered later that 17OHCS were old Cushing's tests but are no longer accepted by most docs but the test is precursor to cortisol.
I used to have a fast and irregular heart beat but not like that.
I cannot believe your doc is overlooking cortisol. It is like a giant flag! I remembered later that 17OHCS were old Cushing's tests but are no longer accepted by most docs but the test is precursor to cortisol.
I used to have a fast and irregular heart beat but not like that.
As for your DST - I had the same result. It is abnormal - and if you hunt around a bit - on a UCLA site you will find, I think that you are sensitive to dex. There are also some papers out there that the test is not good for those with episodic/cyclical Cushing's or mild cases (as in your tests are not sky high, not your symptoms). A few endos now use that dex result to show location - as in that would be pituitary. So it WOULD NOT be adrenal. Most of those with adrenal tumors do not suppress. I would do more research and make sure that they check on the pituitary before scheduling surgery. ALL my tests pointed to adrenal and my source was pituitary.
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