Surgery or not

[upbeat63333]

Its decision time.

I have had several cortisol tests after discovering an adrenal tumor. Some normal, some "slightly" high.

First test was 24 hr UFC, post (unrelated) abdominal surgery, result 164.5 (range 10-80), drs not sure if surgery contributory to high level when I suggest this possibility. So more tests.

Second test was .5mg dexamethasone at 11pm followed by 8am serum cortisol, result 4 (range 5-25), drs agreed I suppressed, but they feel 1.8 is the magic number to rule out cushings and I wasn't that low, so I ask for more tests.

Third test was two midnight salivary swabs, result "normal", but I wasn't given the numbers. Endo agrees diurnal rhythm is maintained......and its a highly sensitive test, but says it doesn't rule out cushings syndrome.

4th test was a 48 hr dexamethasone, .5 mg every 6 hrs, followed by 24 hr UFC, result 28.5 (range 20 - ?) Endo says I should have suppressed 20 or below, but because I missed one dex dose, she feels the result isn't as reliable as it should be. More tests.

5th test 8am serum cortisol (because I want a baseline and have never had one). Result 6.4 (range 6.2 - 19). It appears I'm normal, even a little low.

6th test, another 48hr dexamethasone, .5 mg every 6 hr, did NOT miss a dose, followed by an 8am serum cortisol, result 2.5 (range 6.2 to 19).  Endo firm on 1.8, now wants to schedule surgery.

My concerns: I have no symptoms. Sodium, potassium, cholesterol, all great, have been great for many previous tests. Blood pressure, great, glucose great. I feel actually very good.

I know there can be a cyclical secreting pattern, sometimes up, sometimes down. But how often does a body cycle through this? Daily? Weekly? Unknown? Would that explain why some of my tests are normal, and some are "slightly" high.

Really, 1.8 suppression is 100% accurate to rule out cushings syndrome, Endo even said they'd consider suppression of 2.0 to rule out cushings syndrome. Endo says suppression not achieved.

I suppressed to 2.5. I know it's not enough to "100% rule out cushings syndrome" But that doesn't mean its 100% ruled in either. Am I not considered to be suppressed if I go more than 50% below my baseline???? My baseline being 6.4 done just a week previously.

In the big picture, I have some normals values, and some slightly high values. Does cycling happen that fast (up and down). Besides the tumor, is there any reason for a person to be up and down? For example, my recent 8am serum cortisol baseline was not fasting. I asked a couple questions about that in a different post because it seemed I was normal, but very low. and I thought food would have made it higher.

[rumpled]

Yes, the report should provide information on recovery as if the adrenal looks normal and not atrophic or enlarged, your odds are a lot better to me of a nicer easier recovery. Odd that they said nothing about it. Of course, I have reports saying mine were normal both before and after removal...

PCOS can be a separate issue - but alas, like you said, gals with hormonal imbalances to have it. If you search for Cushing's and PCOS  you will find a mother lode - I had both as well.

There are no guarantees - but information helps.

[upbeat63333]

I've only had one study done, a CT. The radiologist did not make mention of the other adrenal gland.

While he did report some minor findings other than the left adrenal tumor and enlarged appendix--which was the reason for all the investigation in the first place--he did not describe the right adrenal gland.

Last week, I was curious about other organs that the radiologist did not report on. Low and behold, he added that I have cysts all over both my ovaries. PCOS is consistent with hormone and/or adrenal imbalance isn't it??

Thanks again for your discerning eye, I will ask them to look more closely at that CT to describe my right adrenal gland. Until now, I've been thinking that he didn't report on it, because it was normal.

It's appearance would be good information to have going into surgery, but maybe more importantly, it might provide some information to help know what to expect recovering.

[rumpled]

I have had several surgeries... unrelated to my adrenals.

I had several before and a major surgery afterward.

You would have to recover from one surgery first - whichever - before you can have the other - and that would include the hormonal adjustment to my thinking. Of course, they most likely are going to support the adrenal by giving you supplemental steroids during surgery so you will have to taper off again. I had to do it after every surgery. However, I have found that I can usually taper rapidly if the dose is short term.

Given that your tests are not super high, hopefully the other adrenal will kick in pretty fast and your tapering will not be so bad. Do the scans say anything about the condition about the other adrenal?

[upbeat63333]

Thank you for your reply, and again sharing your wealth of information.

I am dragging my feet, only because I want to be sure the tests have confirmed a secreting tumor, and apparently that can be tricky business to do. Luckily I found you on this forum, and with the advice you've given me and others, I've been able to research the issue much more deeply, and ask for some of these confirmatory tests.

However, I'm a realist too. Because the excess cortisol appears to be low, I could postpone all of this to follow up in 3-6 months, only to find that, like you, I've turned a corner and the levels of excess cortisol have increased and I'll have surgery anyhow.

Please, if you have it in you, could you answer another question?

If I have another surgery to consider (unrelated open abdominal), in your opinion, would it be better to have that surgery first and to complete the recovery from it before having adrenalectomy? I believe if I have adrenalectomy first, that I will have to spend several months on HC replacement and tapering before I get my other adrenal gland up and running before even considering having any other surgery right?