Repeat tests or not

[upbeat63333]

When do you really know if you have had sufficient tests, done properly, to know if you have enough information to make an informed decision about your condition?

Background, 4 +/- cm adrenal tumor (found on CT for something else). Single tests for catecholamines, aldosterone, renin, DHEA, have found those in normal range, and no symptoms to suggests a problem. Do any of these need to be repeated for confirmation?

The only thing showing positive so far is cortisol, and it is considered to be mild or subclinical, or could even be intermitently subclinical, because I have no symptoms of Cushings (at the present).

BUT I am having a struggle in deciding whether to trust the few cortisol tests I've had, and I want to have every confidence in them, before proceeding to the next step which is probably adrenalectomy.

1st test, two weeks post appendectomy, 24 hr UFC 165 (range 10-80). Endo said high, didn't want to consider any external contributions like the physical stress of surgery, or just plain old high stress of which I'm under chronically, but agreed Cushings is only confirmed when person presents with 3x over the range, so more testing advised.

2nd test, 1mg dex. suppression, 8am serum cortisol was 4 (range 5-25), it was noted I suppressed but endo didn't think I suppressed enough. And I feel the test isn't complete without having a baseline cortisol to know what my cortisol level is/was without dex so I could compare it against the baseline. I think, knowing your baseline, also helps to determine what % decrease you did suppress, because that % decrease can also be considered to interpret suppression.

3rd test, two midnight salivary swabs, no results yet. I think I will show a normal diurnal pattern, just based on my sleep habits. Extremely tired at 9pm, and I sleep soundly until about 3am. If there is a diurnal pattern, does this lower the importance of the daytime cortisol results?

4th test, .5 mg dex for 48hrs followed by 24hr UFC, result 28.5 (range 10-80). I know it should be under 90% reduction from previous (which would be 16.5). So it appears no suppression, but my collection was 8am and 8am, when cortisol would have been at its highest. Not to grab for straws here, but if I had collected at 6am and finished at 6am next day, I would have had only one "high" measure and that would have been the one immediately following the dexamethasone. So again, I feel like I am "just" over.

I also had a stand-alone ACTH test, but am suspicious of the result which read <5 (?) (range 0-46). I'm not sure how to interpret that, except if it is indeed low, it would be expected to be low because of high cortisol (?).

Because there is no solid medical protocol on the management of adrenal tumors, except that if they are over 5cm they recommend excision because the risk of becoming malignant increases to 25%.(even if initially considered benign)  The recommendation for functioning tumors is appears to be a gray area. If it is overtly secreting, and/or if the patient experiences symptoms, the recommendation is excise. In other cases, they may wait and if the tumor remains stable in size and doesn't cause symptoms they just continue to monitor.

It's really confusing.

[rumpled]

You want to get a surgeon that has done it before - as if the surgeon does not get the whole thing, the rest tissue issue will come to bear and that can be nasty. The surgeon has to take the whole gland and the fat around it or risk leaving some of the gland behind. They also need the take the gland in one piece if possible. You also want a surgeon who will not convert to open. Open means you will have an 11 inch scar on your side and recovery will take a long time. Ask about conversions to open.

If you cannot find a surgeon locally, you can ask your insurance to pay for someone skilled and often they will as it is less $$$ out of the pocket to get a good surgery than to pay for a lot of aftercare for a botched one.

I had both of mine done at the same time - and I have just a few tiny scars from it. The largest scar is about 2 inches and that was used to take both adrenals out. The gas pains are a pain though! BTW I found walking post op helped my pain a lot.

Re dosing... you have one left - that one may take over so you may be able to exist on that one. So you may have to take a dose for a time just to get over a hump and then wean down to wake the other one up as the high doses of the other one likely put the other one to sleep. Weaning is painful - do it slowly - but odds are you should be able to go off all corticosteroids.

[upbeat63333]

Thanks for your reply, and information, rumpled.

I am just resistant to surgery if the benefits of it aren't clear. Without apparent symptoms, and at the present, with mild elevations, I've been dragging my feet. However, I am also a realist. Your statement: "why wait until patients get sicker" is a good one to think on.

Also, thank you for your suggestion to get a surgeon who specializes in bariatric procedures, that makes perfect sense. I will inquire about that when I have my next endo appointment.

The endo suggested a surgeon at my first visit, but I don't remember the name. I thought that was a bit presumptuous because I had only one cortisol test at that point. That was part of my resistance. It felt like they were knife happy based on only one test and without any pituitary investigation.

I will have to stay local for any surgery, as my insurance won't cover anything out of area.

Hopefully the surgery won't be much worse than the laproscopic appendectomy. That was a piece of cake really, the scar tissue afterward has been the most bothersome. What was your experience adrenalectomy? You had both removed didn't you? I hope not at the same time.

I am a little worried about cortisol replacement after surgery. I've read many threads on here where people are struggling with dosing. But first things first.

[rumpled]

I am not tired - I can understand you are wanting to be sure.

I have been around Cushing's boards since 2001- I have heard of docs wanting 2x and 3x the range - those docs do not know the disease and want the ranges to do the work for them. People rarely, if ever hit that high. Why wait until you are sicker to act?

The 1.8 range is the range that I know - and was held against when I tested to years ago so if it changed, I don't know. I still think your doc is not up on what the range is.

I think your tests are following a very logical pattern - lab error is to be expected with ACTH.

You can ask for another 8am fast cortisol and ACTH and try to get the ACTH done correctly. You can also ask for a pituitary MRI. However in the lore of my doctors, not suppressing on dex is a check on the side for adrenal source. I had low/normal ACTH which points to adrenal. But I suppressed and my doc said that points to pituitary. I had the pituitary lesion and my source in the end was totally confirmed as pituitary even with the adrenal pathology.

I would find a doc that does bariatric surgery. They generally can do the adrenalectomies -and have the long tools needed. I will PM you some names.

[upbeat63333]

You might be getting tired of me asking these questions, so I apologize in advance.

Is your feeling that the tests can be "trusted" (barring false-positives) to show hypercortisolism?

The labs DID note post dexamethasone administration, but the reference range for cortisol didn't change.

I think the <1.8 level is fairly recent, and it was lowered to <1.8 to provide 100% certainty. Prior to that any suppression below reference range was considered suppressed and I think some doctors still use that, whether that is correct thinking or not. Consensus is not high in medicine!

So, if I am above the 100% certainly cut-off for DST, in your opinion, are the results THAT high? They don't seem very alarming to me.

I am concerned because, I just don't think my tests followed a logical pattern!

I've never done a baseline ACTH and cortisol. To be diagnostic, those should be done together. Isn't that standard?. And without any symptoms of Cushings, are the results high enough to warrant surgery, or should I have more tests?

Finally, I do have a worry about pituitary involvement. I just don't understand how any lab test, even when ACTH is done perfectly, could separate pituitary involvement.

Without that support, and in face of a big adrenal tumor, the endo doesn't want to do a MRI to investigate pituitary, she just wants to take out the adrenal tumor.

I guess I could negotiate and agree to adrenal surgery IF I have an MRI to rule out pituitary involvement.

But then do you think an MRI would, infact, rule out pituitary involvement? ughhh, I just want to make sure.

Thanks for your patience.
ps, do you think a surgeon skilled in laproscopy generally is ok to perform this surgery? There just aren't that many surgeons skilled specifically in adrenalectomy,,,,,,,being so few adrenal tumors to begin with.

[rumpled]

Uh... your doctor may want 3x the range, but that is your doctor! That is weird, but it is NOT what is normal - and you certainly made a clear high test.
As for the suppression test - the cut off is 1.8 and NOT, I repeat, NOT the range given on the lab slip because that is the normal cortisol range and the lab does not know if you had dex or not. You did NOT suppress and that is a positive test for Cushing's.

The stand alone ACTH looks botched to me - lab error.
I think your doc is leading you down a bad path and you have two very very positive tests for Cushing's. That whole 3x the range is bull.