Surgery

So I wanted to update everyone on the latest! I went to see the nephrologist today, and he is sending me to IU hospital in Indianapolis for surgery! I have an appointment on the 31st of this month to consult with the surgeon. Her name is Judiann Miskulin. From what I can find on her, she is a critical care surgeon who specializes in Endocrinology. The Dr. was shocked that nothing had been scheduled yet, and said "your tumor is HUGE" and it has to come out! After leaving there I felt so nervous about it all, because I feel like I still dont' have a diagnosis, and I am being thrown into surgery. I just don't know what to expect from here, and this makes me very uncomfortable. The endo that my heart Dr. referred me to scheduled me for March 24, and I was able to find another endo who was willing to see me on Feb 9th, but then today I went to this Dr. whom my primary Dr. referred me to, and he already has me seeing a surgeon in INDY. I am just like really scared. Should they just jump into surgery like this without knowing if the tumor is secreting or not?

[rumpled]

Well, you are having symptoms and just because your silly docs are not testing you is not reason to act. You will have a diagnosis after surgery. If the doc considers it large, then is should come out.
It is normal to be nervous. You will meet the surgeon ahead of time and ask questions. Make sure it is laprascopic and not open, and how many times has he had to convert to open. With the laprascopic technique you will only have a few holes and one incision. It is much easier to recover but still - abdominal surgery is a bear post op - lifting restrictions etc.

[upbeat63333]

I know from your previous posts that they have already decided your adrenal tumor is BENIGN. In my opinion, benign is benign. Does it matter how big it is, unless they have explained what problem it is causing.

I strongly believe that what needs to be investigated, to determine IF, the tumor should come out, is whether or not it is secreting. I believe from your previous posts, that everything EXCEPT cortisol has been tested. Why have they not tested cortisol levels for you?

I have a 4.6 cm adrenal mass. I tested within reference range for all adrenal hormones except cortisol. I had a 24hr urine free cortisol test that was double the reference range, but it was 3 weeks after abdominal surgery and none of the doctors can say whether or not surgery would contribute to higher cortisol--I'm certain it does.

I have had only one dexamethasone suppression test, immediately following the 24hr UFC, that I did suppressed below lab reference, but I did not suppress to the level that would 100% rule out the mass producing cortisol.

So the endo is talking surgery too, and this is before having any other confirmatory tests. AND this is before investigating whether there is potential for pituitary involvement increasing cortisol levels.

So, why the rush to surgery to remove the adrenal gland????????????????

Can they guarantee you that your symptoms are related to the tumor if they haven't determined if it is secreting?

Have they explained what the problem is in having a benign 4.5 cm adrenal tumor??. If there are no risks in leaving it there, why expose yourself to the risk of invasive surgery laproscopic or otherwise?

I'm giving my body time to heal. I've been stressed with surgery, bills, chronic insomina and unhealthy coping habits in diet and exercise. I imagine anyone would have high cortisol.

Only you can make the decision, but I would want more information before agreeing to surgery and I don't think you've gotten all the answers you need to make your decision.

[pme47634]

Thanks guys for the responses. I am not sure why my Dr. was not tested for cortisol to be honest with you, but I am really hoping that they will in INDY because after research and talking to people who have been through this, I to feel that I need more investigation before jumping into surgery. I am going to go talk to this surgeon and see what I think about her, and pray that she will want more investigation as well.

[upbeat63333]

I feel pretty certain that the surgeon will order a test to check your cortisol level in order to determine if your adrenal mass is secreting. This seems to be the only thing they have not checked yet, and would be the only other reason that I can think of to have your adrenal gland removed.  

I don't think it would be ethical to remove a benign tumor unless the surgeon can tell you what problem it is causing.

I hope the best for you, so that you can get back to feeling better, but I don't think you should go through surgery in the hope that will make you feel better without knowing if the mass is the reason to feel the way you do.

Push for them to check cortisol level, and maybe even pituitary. I can't recall if you've had an ACTH test. As rumpled has said, a pituitary tumor can cause an adrenal tumor, so if they haven't ruled that out, they need to.

Of course, I'd love to hear how your appointment with the surgeon goes, since I have a tumor also, and any more knowledge that you share is much appreciated.

[pme47634]

I will keep you updated, and let you know how the appointment goes!

[pme47634]

Well, my appointment in Indy today went very well. The Surgeon/Endo was very informative, and I feel I will be in good hands with her. She ordered tons of test, and I had all those done before I left. She said that it will take about 10 days for those results to come in, but she would contact me as soon as she got them back, and I hate to say it, but I am praying they show they are secreting hormones so I will at least have an explanation for all my symptoms. She also ordered the ACTH and every other test imaginable for the adrenal/pituatary. She said the blood test are much better than the 24 hour urines, so I am keeping my fingers crossed. However, either way I am having surgery, and once the results come back she said we will get that scheduled!

[rumpled]

The blood test is for serum cortisol not free cortisol - the issue is that it is a point in time test not an average like the 24 hour test so it is hard to say *better* as they both have uses for sure - but glad she ordered tons... um, what time did you have them done? You said you had them done before you left - cortisol is only diagnostic at certain times of the day so time of test is critical.

Was the ACTH in a chilled tube and did they take and put in a centrifuge asap?

I am glad you are feeling better... It may happen that pathology may show the reason why.

[upbeat63333]

I am glad you had your appointment, and that you finally got some of the more important tests ordered that will show if your adrenal gland is secreting too much cortisol, and maybe more importantly, if it is as a result of pituitary involvement--that's extremely important to know before proceeding.

However, just like rumpled, I have my concerns that you are getting the very best information to make your decision, or maybe they've already made it for you?.

The 24 hr urine test for cortisol is a good test if interpreted in the right context. A serum cortisol test is just a point in time test, so it has to be taken at certain times of the day to provide the information you desire, because cortisol goes up and down.

Also, rumpled is right, unless they withdrew your blood for the ACTH test into a chilled tube and put in the centrifuge right away, well, it might not be accurate. I also think you need to be fasting for ACTH. rumpled could confirm that or not (?)

In any event, it seems that regardless of the outcome of the tests, you will be scheduled for surgery, and that does not make any sense to me. Why even bother to take any of the tests if they are going to take out your adrenal gland anyway. Seems they've already jumped to the end before they've determined if the adrenal gland is the problem. Does anybody else think that is unusual?

Did she explain why it MUST come out?--in the event it is not secreting, and since it is already determined to be benign, did she say why it must come out or what the problem would be to leave it?

You may feel comfortable, and in good hands, but I don't think you have all the answers yet. Risking surgery for the chance that you "might" feel better is a big risk, if they can't confirm what is causing your problem, you may recover nicely to find you feel just the same.

I'm hoping that won't be the case, but it is the "practice" of medicine after all.

I've talked to rumpled about my own situation, eerily similar to yours regarding the left adrenal tumor (4cm) and I know one thing, I'll only have one adrenal gland if they take out the left one. And then there will be a greater chance of that single gland failing in the future and I might be on hydrocortisone for an undetermined time. I want to make sure its the right thing to do, the first time around.

And finally, in most of the research I've done, its prudent to have tests repeated. Patients get tested sometimes three times just to make sure there were no other contributing factors, and to confirm the results, because tests aren't 100%. You are going to be scheduled for surgery and don't even have the results of one test. Is that in your best interest?

[pme47634]

I am not sure if the tube was chilled or not, but they did not seem in a big hurry to get it anywhere extremely fast. I had the testing done about 3 in the afternoon.

The surgeon did not seem like it was critical for it to come out, and she pretty much left it up to me...of course if it is secreting, then she does want to take it out, but if not she said it would be up to me. I am just certain that this is the cause of my problems, and your right upbeat, I may have surgery and still not feel any better, but that is a risk I am willing to take. I know that may sound crazy, but something is causing all of my problems, and I have been to every kind of Dr. out there for my issues, and still nothing. This is the only thing I have left that would or could be causing problems. If the test come back and show that it is not secreting, then I may choose not to have the surgery. Hopefully once the test come back I will have an answer, but if not I am going to be back to square one!

[upbeat63333]

I am glad that you clarified the surgeon's recommendation. My faith is somewhat restored. But I still have concerns for you.

Cortisol and ACTH are best taken together, I'm glad they got that right.

But they are best taken in the morning, preferably close to 8am, when cortisol levels are supposed to be at their highest in the day. I did confirm from a lab manual that ACTH is best taken after fasting, and it is extremely important to draw into a chilled tube, centrifuge immediately. If that wasn't followed, your ACTH result could skewed.

Doctors can also test to see if your adrenal glands are secreting properly by measuring cortisol late evening (11pm), when cortisol should be at its lowest.

The 8am cortisol test is important because you can use it as a baseline. You can determine whether or not you are higher than what is considered the highest point of the day and you can then compare it to any other measurement taken later in the day, does it drop as expected?

The 11pm test is often done by salivary swab in your home, well, because it's 11pm! If you are high at 11pm at what is normally the lowest point of the day, there could be a problem. BUT it wouldn't tell you whether it was adrenal or pituitary--rumpled has driven that point home to me. I know for sure they will have to 100% rule out pituitary involvement before I agree to adrenalectomy.

I think you still have a lot of questions to get answered before you make your decision. I understand your want to get rid of that tumor because you don't feel well, and you hope removal will solve the problem. But please use caution when discussing the results with your surgeon/endo. Knowing all that you know from this site and your own research, do you feel confident about the timing of your tests, and whether you should get them repeated for confirmation before you proceed to surgery? The positive is, a doctor finally ordered the remaining tests (cortisol and ACTH) after all this time, who wouldn't be stressed waiting and wondering. !

By the way, what did the nephrologist do, test, or tell you about kidney involvement with respect to your high blood pressure. You did have renin and aldosterone tested with your MD, I think those were normal.

[pme47634]

The nephrologist told me that he does not need to see me back anymore as my kidneys are fine. As far as the aldosterone and renin, I did have the aldosterone level checked, but not the renin through my family Dr. However, the Dr. in Indy did both of those yesterday. Let me ask you this; I was scheduled to see a local endo prior to being sent to Indy, and my appt is next week with him....do you think I should keep that appointment and see what he thinks? I just want to make sure I make the wisest decision, and your making me look at this in a whole new perspective here.

[rumpled]

You will need the endo - the endo will be the one monitoring you after the surgery, I presume, in the hospital - so this so this is a pre-hospital visit I would think...

Ask your questions to the endo - she will be able to respond to a lot of this.

[upbeat63333]

Well, what I know is this: I've had a crash course in adrenal tumors, adrenal and pituitary function, hormone secretion, and proper methodology for lab tests (and some lab tests aren't ordered/done properly).

From reading various posts in this forum, many of which don't pertain to adrenal tumors, I've discovered there is a lot of confusion in the general medical community and that even extends to the specialists they send you to. Consumer beware, and you are the consumer of your own health care, sometimes you get the very best, and sometimes you don't, but how do you know??

I believe in second opinions where major decisions must be made. However, I'm not sure how much the second endo will be able to tell you if you haven't gotten the results of your recent tests when you see him. An appointment next week maybe too soon. But you could reschedule. That way you will be more confident and have better questions if you yourself bring more information to the appointment. Or maybe the tests will be so obvious this time, you won't have to see anybody else--but view them with the knowledge they were taken mid-day.

I'm glad the Indy endo repeated some tests like Aldersterone and renin. But it also highlights that maybe the first tests you had weren't sufficient to explain what your adrenal gland/tumor is actually doing. Maybe they will discover a problem in the Aldersterone/renin ratio and that could explain the blood pressure. I think you had to repeat at least one of your first tests for sodium or potasium?. And that's why I said repeat testing, sometimes in the correct combination, and sometimes at specific times of the day, is necessary--actually mandatory, to give the correct information. Persist with them. Good doctors won't feel threatened if you have good questions. I think you have a better idea than most of what is correct.

You knew from reading this forum that a key test was missing--cortisol. I know from reading this forum, especially from Rumpled, that it is critical to investigate pituitary involvement--ACTH. My endo said that was so rare she didn't want to go looking for hen's teeth. Ha Ha. My adrenal tumor is supposed to be pretty rare too. What if I did have a pituitary tumor driving the adrenal tumor, what would happen to my other adrenal gland if they didn't check the pituitary? Persist with them. You will feel better knowing you've made the right decision because you have the best information to do so.

[pme47634]

The Dr. in Indy did order ACTH, as well as cortisol. I had an appointment with my family Dr. today, and she told me to just keep appt with the local endo next week, and just give him a heads up to what has been done thus far, and see if there is anything he wants to add.

[upbeat63333]

Well, the appointment next week can still be very productive.

You will have the opportunity to ask this other endocrinologist whether he thinks an ACTH and cortisol done mid-day is going to provide the information necessary to make a firm diagnosis.

He may want you to repeat those two tests early morning (especially if you have suspicion the ACTH test may not have been done properly--chilled/centrifuged immediately, and I'm pretty certain fasting).

And he may suggest a late night cortisol, if you ask about it's benefit for comparison.

It doesn't hurt to have enough tests to analyze and compare. It doesn't hurt to get a second opinion.  

How are you feeling by the way?

[pme47634]

Sorry it has taken so long to get back to you! I haven't been feeling very good, and I am just worn down. Seems like I don't sleep well at night at all, and for some reason it's like I get a burst of energy when it times to lay down! I have also been having a lot of joint pain in my knees and my lower back....not sure if that is the Vit D or not, but I have been taking 50,000 units 3 times per week for the last couple of months. The headaches have been really bad lately to, and I have been getting them at least 2 times per week.

I hope to hear back from the Dr. in Indy by the end of the week, but Wednesday I am going to go see the endo locally!

[rumpled]

It is good to have a local endo too - I have a local and long distance endo as well.

Usually when one takes that amount of D it is once a week - never heard of 3x a week. I am sure your doc has a reason but I have not heard of that high dosing for low D.

The only warnings I saw:
"Taking vitamin D for long periods of time in doses higher than 4000 units per day is POSSIBLY UNSAFE  and may cause excessively high levels of calcium in the blood. However, much higher doses are often needed for the short-term treatment of vitamin D deficiency. This type of treatment should be done under the supervision of a healthcare provider."

If you look up the symptoms of hypercalcemia:
"Abdominal:    
* Constipation
    * Nausea
    * Pain
    * Poor appetite
    * Vomiting

Kidney:

    * Flank pain
    * Frequent thirst
    * Frequent urination

Muscular:

    * Muscle twitches
    * Weakness

Psychological:

    * Apathy
    * Dementia
    * Depression
    * Irritability
    * Memory loss

Skeletal:

    * Bone pain
    * Bowing of the shoulders
    * Fractures due to disease (pathological fractures)
    * Loss of height
    * Spinal column curvature

Make sure they monitor your calcium on that dose.

[upbeat63333]

Sorry to hear you haven't felt well. I hope that you will, soon.

Your description that you don't sleep well, and have a burst of energy at night can mean swings in cortisol, among other things.

Usually cortisol goes down at night. But for some, cortisol rises and lowers and rises again, it doesn't follow the normal pattern. For some this means early stages of adrenal fatigue. That is why it is so important for you to get the proper testing, and have testing that is done throughout the day.

What if you were actually in the early stages of becoming adrenal insufficient? It would be better to try to support your adrenal gland instead of removing it don't you think? The tests will provide more information.

You'll just have to be patient and wait for the results. I didn't think so at first, but now I'm so glad you have a local endo to go to because maybe he will be able to order cortisol tests done though the day instead of just the one (only one so far) that you did mid-day.

I think the amount of vitamin D you are on seems quite high, but I have not researched any of the levels. I do know that after I began supplementing 1000 to 2000mg every day, my MD had me do another Vitamin D test 3 months later. I was still deficient, but it was up from the first test. I think you should get your Vitamin D checked again and see what your levels are. Maybe you can go down to a maintenance dose now?

The wondering and waiting will cause a lot of stress and fatigue. Knowing this, it's wise to rest when you need to and don't push yourself too hard.

[pme47634]

I had my Vit D checked again last week, and 30-80 is the normal range. Mine the 1st time around was 11, and this time around it was only 15, so she still wants me on the 50,000 units 3 x a week. I will have that rechecked again in 6 weeks. I called Indy today to see if they had any of the results back, and the nurse said some of the test were back, but they were still waiting on one more. She said the Dr. had not had the chance to review them yet, but she would let me know as soon as she does. I then told her that I have an appt tomorrow with the local endo, and so they are going to fax what results they do have over to this endo, and so I am praying I get some answers tomorrow on at least some of the results. I will let you all know how it goes.

[rumpled]

Wow - you need some sun!!! LOL...
Let us know when you get your results back!

[pme47634]

So as you know, today was my appointment with the local endo, and I absolutely loved him! At first I did not think I was going to like him much at all because he says "so what brings you to my office today"? I was thinking to myself "I feeled out paperwork saying what brings me here today, and you have all of my lab results, and your asking me why I am here"? However, I went ahead and explained to him in detail, everything that has been going on with me for the last 6 years or so. He examines me from head to toe, and one thing that caught his attention is the amount of body hair I have on my face and neck, my abdomen area, my arms, my inner thigh. He asked me how long this has been going on? I tell him for years. After he is done with his examination, and lots of questions, he tells me to get dressed and he will be back to talk to me. I get dressed, and then he comes back and ask me for the disc (which I had brought to my appt) of the CT scan that was done in November. He leaves again and comes back, and this time I notice he has to plastic bags with tubes in them, so I knew he was going to order more test. He goes into great detail about the adrenal mass, and says; "When dealing with a tumor of the adrenal glands, there are 2 things we worry about"...the first one is it malignant? The second one being "is it secreting hormones". He diagrammed everything on a legal pad for me to see, which I was very appreiateive of. He wrote down all of the hormones that the adrenal gland could be secreting. He talked about adrenaline, and cortisol being the most important ones. He then explained that he wanted me to do a salivary cortisol test starting tonight at 11 p.m. and again tomorrow night at 11 p.m. and then after the one tomorrow night he wants me to take a dexa pill and be at his office Friday morning at 8 precisely to have blood work done. He also took blood today which consisted of testesterone, progesterone and DHEA. I was thinking to myslef "WOW" . He is also going to order another CT scan at the end of the month since that will be 3 months since the first one was done. He is also going to order an MRI of my brain, so all this stuff everyone has been telling me about is finally getting done. He also informed me that I could have surgery done locally without going to Indy, if surgery was neccessary. I am so happy that I kept this appointment and did not just go by what the surgeon in Indy said. I find it odd that many Dr.s say such different things. As for my results that came back from Indy, he did have some of the results which I had Indy fax, and he did not go over any of those with me, but I did ask for copies in which I have. However, they do not seem overly alarming to me when I glance at the results and ranges. I am going to post them here, but if you all have any tips on what to do or not to do for the saliva test, please do let me know....I am very nervous about making sure I get it done right since I cannot touch the thing with my fingers.

Catecholamine Plas QN (a) Y
Dopamine Plas is 21 range is 0-20
Epineph Plas is 21 range is 10-200
Norepin Plas is 530, range is 80-520

Normetanephrine Free Plas is 1.18 range is <0.90
Metanehrine Free Plas is 0.21 range is <0.50

ACTH Plas is 15 range is 10-60
Aldosterone Serum is 18.6 range is 3-33
Renin Plas Enz Rmt is 9.9 range is supine<10, upright is<23
Cortisol SerPl is 10.4 and as you know this was done only once about 3 in the afternoon, but range here is AM is 8-25 and PM is 4-20

[pme47634]

One thing I forgot to mention is he did take me off the Labatelol for blood pressure and put me on Lisinopril-HCTZ one time a day in morning....have any of you taken this before? He said something about it is also a fluid pill?

[rumpled]

Sounds like a nice endo!  Let us know how the tests go!

I think the aspect of the fluid pill is interesting... I wonder how it will effect the potassium and renin/aldosterone levels. It is probably potassium protecting - talk to the pharmacist.

[pme47634]

Rumpled, did you see anything alarming on the test results?

[rumpled]

I saw a couple were off - but pheo is not my expertise so I don't know how to read them (as in do you want to be at the top or bottom of the ranges) so I can't really tell you anything substantial. I hope the doc can tell you more - and it will good to get the puppy out.

[upbeat63333]

I'm happy that your local endo appointment seemed to go so well. By your description, he seemed to take the time to really listen to your history and it sounds like he ordered some of the tests which will provide KEY information, namely the evening salivary cortisol, and to a lesser extent, but it still has merit, the dexamethasone suppression test. Taken in context, comparing the results against all the tests you've had, (and will now do), all can be useful.

He might also have a better handle on which RX drug is best for your blood pressure. They are not all the same, that's why there are so many. Please keep in mind, not everyone who has high blood pressure has an adrenal tumor, so it might be a separate issue. You just happen to have both, and maybe it is related, maybe not.  

I'm also glad you will get an MRI of your brain. That will add to the whole picture, ie is there any pituitary tumor to consider instead of just fixing attention on the obvious -- adrenal tumor. I've read on this forum there is a more sensitive type of MRI for investigating pituitary tumors, I hope this is the MRI ordered for you. Look at other posts for the particular MRI, or ask rumpled.

As far as the results from the tests ordered by the INDY endo, I think that if there were any obvious, concerning numbers, the local endo would have mentioned them to you. Because he didn't, doesn't rule out a problem, but if one exists, it may be mild, I'm sure he would have recommended those tests repeated if he thought there was a problem. Sounds like he is trying to determine if cortisol is the problem.

He is 100% correct, before determining if surgery is necessary, the gland/tumor needs to be investigated for both malignancy and secretion. You've gotten good news once on the malignancy issue, your first CT scan came back as benign. I've researched the 50% contrast wash-out protocol and it appears pretty sensitive to determine this. Another CT scan won't hurt (aside from the extra radiation) to determine whether it's still growing.

I think you have found a doctor who has your best interest at heart, and knows what to investigate before recommending serious intervention (surgery), especially one who wants to discover whether or not you have a pituitary problem driving your adrenal mass. He sounds like he knows more than most, and doesn't have to be asked or convinced of the proper tests by his patient.

You've gained a lot of information on your own, and you've come to realize that not all answers from all doctors are the same, so it doesn't hurt to keep asking questions.

I think the nephrologist was being a bit alarmist when he said "its huge, it's got to come out". Or the Indy endo saying that if it wasn't secreting, the decision to take it out was really up to you. It's not cosmetic surgery for goodness sake. There is risk, and then recovery, and replacement hormones. Replacement doses may take a lot of adjusting and you might need to be on replacement for life. But it's all worth it, to feel better.

The bottom line is, you need a doctor to figure out why you are not feeling well, and if it's because of the tumor secreting it should come out, not because it's huge or because you don't want it there anymore.

There needs to be a reason, OR you might not feel any better after all this. I'm glad you found a doctor to help determine if there is a problem with the adrenal tumor, and whether surgery is necessary or may benefit you. Looking forward to hearing your results. ps. I've still got my tumor, and I'm feeling pretty good, maybe it will have to come out, but that is yet to be determined. I just wanted you to know, that a person can have a 4.5 tumor and still feel ok.

[pme47634]

So the weirdest thing has happened to me lastnight! The endo took me off of labatelol for blood pressure and put me on Lisonopril HCTZ...lastnight, I got really dizzy, nauseated and extremely fatigued and I took my blood pressure and it was 74/32, I was so sick! I went to the ER because of the way I was feeling, and plus I was worried about falling asleep and the blood pressure taking a complete bottoming out when I was completely relaxed. I noticed heart palpitations, and some SOB as well. They gave me some fluids at ER, and checked some blood and urine, did chest x ray, and the Dr. there said he thought it was the new medication causing it, and said I needed to check back with Dr. to see if he wanted me to continue to take it. I also noticed since stopping the Labatelol, that I am very anxious, my heart rate is running 120 while blood pressure is dropping. I went to have my blood draw this morning at 8 for the cortisol testing, and turned in saliva samples, and then went upstairs to see about talking to the nurse about this situation. She seen me, and took my blood pressure, and at this time it was 112/76...still low for me but I was not complaining. Then the Dr. came in and explained to me that the reason I was feeling the way I was is because the Labetelol was a blocking agent, and if the tumor was secreting hormones, much of it would be blocked to decrease the symptoms, and that is why he said it was so important for me to stop it so they could see what my catecholmines are really doing. My blood pressure is still running a little low, but I feel OK. He advised me not to take any medication for blood pressure over the weekend, come back on Monday for a recheck and if bp was still stable, I could just go without medication for now and keep close eye on it. I am just really curious as to y my blood pressure usually runs high and now all of the sudden it's running low!

[upbeat63333]

Some things are not explainable. But there is thing I know: the body is a weird and wonderful thing.

I knew a gal who had high blood pressure since late teens, started with a death in the family, that was followed by a turbulent marriage, and constant change in jobs. She had high BP for years, tried lots of different medications, BP kept creeping higher even with medication(s). Then she moved away and saw another doctor whom she really liked, one who listened to her personal history, not just the physical things. BP meds changed again (I don't know to what), and her blood pressure went down. She said she thought it was because she was in a new place, and finally just accepted everything. She is doing just fine now and feels great. Maybe it was external stuff, maybe it was the new med.

I can't say what happened in your situation. But I do know that not every BP med is the same. The endo is right, you really need to get a picture of what the adrenal gland is doing, or how will you ever know if it's the thing causing you to feel the way that you do.

I would still have a lot of questions though. The labetelol might be a blocking agent, but that means it blocks receptor sites, it stops the catecholamines from attaching to certain cells. But it doesn't stop any gland from actually producing the hormones.

So your levels of the various catecholamines would still be higher even if they may have less effect on the cells of your body.  

I recall from your  Indy labs that you were high in some of those tests, but only just. However, maybe that's all that is important, that you were high, maybe it doesn't matter by how much, or maybe it does.

I'd ask your local endo about that, because I recall from your 24 hr urine test, the one that measures an average over time, not just a single draw, in that test I seem to recall you were ok for those. (or maybe I'm wrong my memory isnt like it was when I was 20). You should compare if you have copies of the results.

I would ask your local endo about the effects of being under stress, travel and anticipation of your appointment with the Indy endo, and any possible connection to a rise in catecholamines as a result. Maybe there is an association, maybe not. Maybe he will repeat those tests if he thinks it matters.

One thing I do know is that you are getting closer to getting some answers.  

[rumpled]

It might have been a potassium issue... I hope they ran electrolytes. That would effect your heart and heart rate. I hope you feel better soon.

[upbeat63333]

Something was bothering me all day long, and I couldn't figure out what it was. Then I re-read your posts, and looked at your test results and it struck me, like a flash.

You've only had ONE cortisol test, ONE. Only one.

That cortisol test was a serum cortisol test, a single point in time, drawn at mid-day--3pm(ish). And from the lab references ranges given (AM and PM) you were well within those reference ranges.

Why in heavens name would the local endo order a dexamethasone suppression test? I really thought that test was reserved for a confirmation test AFTER determining your cortisol level was high. ???

something about that doesn't sit well with me.

Maybe rumpled can shed some light on that.

hmmmmm........Just wondering.

[rumpled]

He could be covering all bases (but IMHO the dex test is the most unreliable test for Cushing's out there as in I know hundreds that fail it and still have Cushing's) so he is looking for the hormone secretion after he felt the catacolmines were only mildly elevated.

Yes, the cortisol test was not done at a time that my neuro-endos would not find diagnostic.

I  however still think the lesion should come out and if it was me, I would do it - it is large and despite the silly testing from the doctors, I think you will probably be better off. But it is a personal and difficult decision.

I found this:
"Since the catecholamine test is sensitive to many outside influences and pheochromocytomas are rare, a doctor may see more false positives  with this test than true positives. If a symptomatic patient has large amounts of catecholamines in her blood and/or urine, further investigation is indicated. Serious illnesses and stresses can cause moderate to large temporary increases in catecholamine levels. Doctors must evaluate the patient as a whole - her physical condition, emotional state, medications, and diet. When interfering substances and/or conditions are found and resolved, the doctor will frequently re-test the patient to determine whether the catecholamines are still elevated. The doctor may also order blood and/or urine metanephrine testing to help confirm his findings and imaging tests, such as an MRI, to help find the tumor(s).

If levels are elevated in a patient who has had a previous pheochromocytoma, then it is likely that either treatment was not fully effective or that the tumor is recurring.

If the concentrations of catecholamines are normal in both the plasma and urine, then it is unlikely that a patient has a pheochromocytoma. Pheochromocytomas do not necessarily produce catecholamines at a constant rate, however. If the patient has not had a recent paroxysm of hypertension, their plasma and urine concentrations of catecholamines could be at normal or near normal levels even when a pheochromocytoma is present. "

"A variety of medications can interfere with catecholamine testing.  However, it is very important to talk to your doctor before discontinuing any prescribed medications. He will work with you to identify interfering substances and drug treatments to determine which of them can be safely interrupted and which must be continued for your well-being. Some of the substances that can interfere with catecholamine testing include: acetaminophen, aminophylline, amphetamines, appetite suppressants, coffee, tea, and other forms of caffeine, chloral hydrate, clonidine, dexamethasone, diuretics, epinephrine, ethanol (alcohol), insulin, imipramine, lithium, methyldopa (Aldomet), MAO (monoamine oxidase) inhibitors, nicotine, nitroglycerine, nose drops, propafenone (Rythmol), reserpine, salicylates, theophylline, tetracycline, tricyclic antidepressants, and vasodilators. The effects of these drugs on catecholamine results will be different from patient to patient and are often not predictable. "

Pheos are not easy to diagnose.

I have low BP - it feels like crud - right? You have no energy!

[upbeat63333]

What is your opinion of a two day dexamethasone suppression test (1mg every 6 hrs) followed by a 24 hr UFC?

[upbeat63333]

oops, I meant to say dexamethasone, 0.5mg every 6 hours for 48 hrs followed by a 24 hr UFC.

What is your opinion on that test.

Is that more sensitive or reliable than the low dose test with lab draw next morning?

Also, could you please provide your opinion to this question: if I am going to do an ACTH test to help determine cause (adrenal vs pituitary), would it be best to do the ACTH test the 3rd day, that is the morning following the 48 hours of dexamethasone, when I begin the 24 hr UFC?

ACTH should be very low after dexamethsone, shouldn't it. That would help rule out a pit tumor wouldn't it? If it were normal or high that would point toward an ecotopic or adrenal problem right?

And finally, would it do me any good at all to know TSH, estrogen or progesterone levels? I know cortisol can increase when there is extra estrogen present, therefore most doctors recommend discontinuing HRT or birth control pills so estrogen doesn't interfere with the cortisol test. But what if you are estrogen dominant--as in I have a fruit bowl of fibroids and I suspect that is driven by too much estrogen. Would estrogen dominance, a hormone imbalance,  skew the cortisol higher? Or could it be, that since progesterone is a precursor to cortisol, I'm using that up my progesterone making cortisol and by default I'm estrogen dominant. I guess that could happen, but which is it, that's kind of like answering what came first the chicken or the egg.

It's so hard to stay on top of all of this, especially when you think you should be able to rely on the doctors knowledge. Too bad that isn't always the case.  

[pme47634]

From what I understand, the medication that I was on (Labatelol) was working as a blocking agent to prevent me from being able to get a high cortisol test! When I took that test in Indy, I was on Labatelol, so I don't know! I am just going to wait and see what this endo recommends. Something else i have noticed the last few days is a dull, constant aching pain in my upper back on the left side, and it is very tender in that area! I don't know if the tumor is growing possibly, but it does not hurt bad, just very uncomfortable. I went back to endo today to get my BP checked and it was 135/83 and the endo told me to take 1/2 of the lisontopril instead of a whole one. I will start that again in the morning....currently my bp is 144/91 and HR is 104, so I am beginning to notice that I have not had my bp meds for several days.

[upbeat63333]

Labatelol IS a blocking agent.

Blocking agents work to block "receptor" sites on cells, they do not work to block production of substances like hormones, catecholamines or neurotransmittors.

Blocking agents fill or compete for the receptor sites on tissue cells so those substances (hormones, neurotransmittors etc) cannot attach there.

In that way, those substances cannot affect the tissue, ie, since the substance can't attach because it is being blocked from attaching, the substance won't affect the cell the way it normally would have, example if it has an affinity for heart cells and it can't attach there, it can't increase your heart rate. Take the blocking agent away, and the substance again begins to attach, causing the affect, like increased blood pressure or increased heart rate.

The substance itself was never affected, therefore the amount of it was never changed.

Labatelol is used to block the action of catecholamines. It attaches to the sites where catecholamines would normally attach. Catecholamines are norepinephrine and adrenaline ETC, . not cortisol.

I've read many endocrine journals looking for information on adrenal masses since I discovered I have one myself and I have not read any information about them producing pain. One journal had the story of a 60+ y.o woman who started having her period again and it was finally discovered she had an 18 cm tumor causing excess production of estrogen! 18cm, imagine that!

Anyhow, reading is not real life experience, rumpled might have more information about whether adrenal tumors can cause pain, but I have not come across that yet.

Take comfort in the fact the labatelol was not blocking production of the catecholamines (or cortisol), so your lab tests aren't compromised in that way, and you can at least trust them to the extent they were done at the right times and done by the lab correctly (ACTCH).

[rumpled]

I took that dex test too - I know people that did not suppress on that test but if you are a borderline case (like me - I was a cyclical pituitary case) - I just did do well with any test involving dex.

Has any doc done a CBG on you? Your own estrogen (as well as medications) can bind free cortisol. Your body has to then reach a higher serum level to spill over to free for you to even register so your tests will be off. It does not have to just be estrogen - it can be other meds like pain and other types. I too had a like of gyne issues like fibroids, endometriosis and cysts and things - so my tests were all over and it was very hard for me to get a read on it until that one doc explained it.

I am unaware of progesterone being a precursor to cortisol. That I do not know. I know they used to test for 17-hydroxysteroid which is a cortisol precursor to cortisol.  But that could be a deficiency in what I know - but I was googling around and there are derivatives of a progestrone -like in some papers but I am not sure if they are the same, but I was not ever tested for them in so far as for cortisol purposes. 17-OHS was a test used for a while but deemed not useful enough but some docs use it still in conjunction with other tests.

As for the other tests, more is better. (to me!)

[upbeat63333]

When you say that estrogen binds with cortisol, does that mean that the body makes more cortisol in an attempt to have enough?

I have high estrogen, will that mean I will possibly have high cortisol?

And, if you could also please, let me know your opinion about getting/taking the ACTH test on the morning following the 48hr dexamethasone test. Will measuring ACTH at that point provide good information on whether there is pituitary involvement driving high cortisol? Or is it better to have ACTH before dexamethasone, as a stand-alone test.

Thanks so much, you have a lot of great information to share.

[upbeat63333]

How have you been?

Just wondering if your blood pressure has been ok since you've stopped the lobetalol. I know you had a couple of funky days up and down, and even your heart rate was up. Hope you've been able to manage and hope the other BP med the endo recommended is helping.

Hang in there. You're getting closer to the answers you need.

[rumpled]

If you have high estrogen, you will have usually lower free cortisol testing as the estrogen binds free cortisol.

ACTH is not supposed to be effected by dex - so when you test, the doc switches you to dex for that reason. Dex shows up in some tests but not others. If you did it after the dex test as directed, it was probably to see what was going on.

I found this:
"
ACTH tests were performed with and without dexamethasone (dex) pretreatment to clarify the nature of the relationship between the absolute and incremental response (delta) to ACTH in normal men and women, hirsute women, adrenarchal children, and women heterozygous for congenital adrenal hyperplasia (CAH). The purposes were to test the effect of dex preparation on adrenal responsiveness to ACTH and the efficacy of the dex-pretreated ACTH test in detecting heterozygosity for CAH. Cosyntropin was given as a 10 micrograms/m2 iv bolus dose at 0800-1000 h; dex (1 mg/m2) was given at 2200-2400 h the night before. Dex did not alter the absolute plasma steroid levels achieved in response to ACTH. However, since post-dex baseline concentrations of adrenal steroids were lower, the delta to ACTH was significantly greater for the major adrenal secretory products, 17 alpha-hydroxypregnenolone (3 beta, 17 alpha-dihydroxypregn-5-ene-20-one), dehydroepiandrosterone, and cortisol (F). For example, for all paired tests, the mean plasma F values achieved 30 min post-ACTH were 26.0 +/- 4.4 (+/- SD) micrograms/dl without dex and 23.8 +/- 5.5 micrograms/dl after dex. In contrast, the mean delta of plasma F 30 min post-ACTH was less without (13.3 +/- 4.8 micrograms/dl) than after (19.4 +/- 3.3 micrograms/dl) dex (P less than 0.001). Apparent 21-hydroxylase efficiency, computed from dex-prepared tests, was found in follicular phase women to have a markedly skewed distribution without clear demarcation between 15% of the population and CAH heterozygotes. Luteal phase responses differed from follicular phase responses in dex-pretreated women in the magnitude of the 17-hydroxyprogesterone response. In the luteal phase, although the plasma 17-hydroxyprogesterone level at 30 min was higher, a response to ACTH was not consistently found, averaging only 22 +/- 26 ng/dl, in contrast to the consistent 52 +/- 15 ng/dl response in the follicular phase. These findings have practical implications for interpreting rapid ACTH test results. The absolute plasma F level achieved post-ACTH is more important as an index of adrenocortical reserve than the increment. Dex pretreatment appears to offer no practical advantage in ACTH testing for mild defects in 21-hydroxylation; we postulate that this is because of considerable normal variability in the efficiency of 21-hydroxylation."

That is for CAH but a lot of the testing is the same.

[upbeat63333]

Thanks. I'll take the ACTH as a stand-alone test and see if the results have any significance in the big picture.

If I am high cortisol due to the adrenal tumor secreting, I "should" be low to normal ACTH.

If ACTH is high, that increases the suspicion of pituitary involvement.

I just have to have a basic understanding before taking the tests, so that I know how much weight to give them, whether to trust them enough to make a decision on surgery or not.

[rumpled]

That test alone is not definitive - after all I had all normal ACTH tests and I had pituitary source Cushing's. There is some art to this diagnosis... it pays to see an expert.

[upbeat63333]

By expert, do you mean some other doctor besides an endocrinologist? It is the endo who ordered the ACTH test, after I insisted that I wanted to investigate pituitary involvement. But that is as far as she would go. (that and the two 11pm salivary swabs for cortisol, and the 48hr dex followed by 24hr UFC).

Do you think there are some things I would notice if I had pituitary involvement? I've read lots of people get visual disturbances and/or headaches. And if it's causing increased secretion there are a lot of other symptoms too.

I know in your case you kept going back and pushing your doctors because you knew something was wrong. It's different for me. I don't have many complaints, and if I do have any, they are very mild and pass.. If I hadn't had the CT for my appendix, I wouldn't know I had an adrenal tumor, and I would not have guessed I had high cortisol.

Again, your thoughts are appreciated.

[rumpled]

By expert I mean someone that does a lot of diagnosing of adrenal and pituitary  issues.
In your case, you are probably fine though... just keep it in your mind in case something comes up later.

[pme47634]

So I just got my lab results back from the Dr. and I wanted to put them here to see if anyone can help me decipher them. I spoke to my Dr. lastnight on the phone, and he just said my labs looked OK, but did not go into any detail. So I did the saliva samples (2 of them at 11 p.m. 2 nights in a row, and then went the next day and had a cortisol blood level drawn). I also had a DHEA, HYSDROXYPROGEST-17, and a testerone panel. Here are the results.

Cortisol,Saliva

Feb 9 @11 P.M- 0.043 This was processed from ARUP LAB
Feb 10th @ 11pm- 0.081

It says for collection at 2300 hr. the normal cortisol concentration is less than 0.112. Patients with Cushings Syndrome have concentration of 0.112 or greater.

Cortisol-AM Done at 8 am after taking dexamethason at 11 pm night before
2.3 (range is 8.7-22.4)

DHEA Sulfate
39 (range is 45-270)

I also had a testosterone panel done, and all of those were normal except for a test called Sex Hormone BND GLOB and it was 25 and reference range was 30-135.

Can anyone help me figure this out?

[upbeat63333]

Really looks like you are in the same boat as I am in. Big old tumor on our adrenal gland(s), 4cm+, and our tests really don't show with 100% certainty what it is doing, if anything is going on at all.

Glad you finally had the cortisol tests done at a time when they would be more diagnostic (8am and 11pm). your results would suggest that cortisol is within the "normal" ranges and follows the normal diurnal pattern (higher in morning and lowest at night).

That seems good, seems like your adrenal tumor isn't secreting excess cortisol. But the dexamethasone test might be considered borderline. I suppressed below the normal reference range like you did, but I've been told by my endocrinologist that it wasn't good enough to rule out cushings, that to rule out cushings, to be absolutely sure, I would have to suppress near 1.4.

Rumpled has highlighted that even with "passing" the tests, you could be cycling. Which I guess means going through highs and lows. I'm not sure when you would experience the highs and lows or what changes it, maybe time? Rumpled could better explain that.

I found some information on sex hormone binding globulin (SHBG), I hope it helps.............

""Conditions with low SHBG include polycystic ovary syndrome, diabetes, and hypothyroidism. Conditions with high SHBG include pregnancy, hyperthyroidism, and anorexia nervosa"""

Have you had your thyroid checked? Did you have the MRI to check pituitary? Has your blood pressure stabilized? So Many questions!! Hope you are feeling better.

[pme47634]

Thanks upbeat! I have had my thyroid checked, and it is normal according to blood work done in the past. I have not had the MRI done to check pituatary yet, but when I spoke to my endo on the phone last night, he is wanting another CT scan done within a week. My blood pressure has been doing better, but my heart rate has increased since being taken off the Labetelol. It has been about 130, and that is pretty high, and it just feels like it is all over the place.

[upbeat63333]

I hope rumpled can respond soon and explain "cycling". I'm not sure if that is relevant to your situation or not.

Will you be getting the CT done at the same center as the previous two you've had? My doctor feels there could be some error (although slight) in measurement when more than one radiologist is reading/interpreting the study. I'm not sure how that can be determined, or how much impact it has, but if it's all done at the same place that should reduce the chance of reader error.

Also, I thought it was determined from your second CT that your adrenal tumor was benign. I've read the wash-out protocol that you had is very sensitive for determining this.

Is your local endo just checking to see if it is growing? I wouldn't have thought three months between CTs to compare would be that long, unless these tumors can grow  quickly.

I just don't know enough about adrenal tumors to know how quickly they grow. BUT I don't think the endo(s) know either!!!! Adrenal tumors are only now being "discovered" so to speak, because people are having more CT(s) for other things, and ooops, did you know you have an adrenal tumor!

So I don't think most doctors know enough about them, and we have to rely on the doctors for our information! Or like you and I are doing, asking as many questions as we can of people who have some personal experiences.

Sorry to hear about your fast heart rate. That must be very uncomfortable.

Just out of curiosity, I wonder if any of the doctors (cardiologist included) ever questioned or looked at the relationship of the position of the adrenal tumor to your heart? I'll have to look up some anatomy to see how close they are. Just wondered if the tumor might cause some physical contact irritation to the heart muscle??????????

[pme47634]

I just found out, that the range I posted for my cortisol is for someone who had not taken the dexamethasone, and I did take it, I can't find out specifics for what the range is for someone who did. As for the CT scan, he is just checking to see if it is growing, but my endo has not ruled out cancer at this point even though the CT suggest benign.

[upbeat63333]

I think the lab range they gave you for cortisol is *regardless* of whether you've taken dexamethasone or not. It's just the range.

They draw your serum and measure cortisol to see if you are within the range (no dexamethasone).

If you've taken dexamethasone, it's still the same range, they just look to see if you are below the range--if you've "suppressed".

In your case, 2.3 is below the range you were given. But if you've read many of the posts that rumpled has written, lots of people can suppress, but may still have a problem. It's maddening that it can't be 100% for sure one way or the other. Although my endo says if you are at or below 1.4 then it's 100% sure. Other places I've read 1.8. Geez.

Is your endo going to do the adrenal protocol CT again? Check for wash-out? Again, I've read that protocol is supposed to be pretty sensitive, but like I said above nothing appears to be 100% sure.

I think short of a needle biopsy, they won't be able to tell 100% for sure whether it's benign or malignant. Or as rumpled has said, they could remove it, send it to pathology and you'd have your answer.

However, I'd like to keep as many of my organs as I can and the thought of removing something that isn't causing a problem just doesn't seem right. As easy as they like to make it sound, it's still surgery.

Surgery still has risk, and more people die of secondary infection or complications than I care to think about. I'd like to avoid that if I can, but I'll proceed if they can find a problem.

I don't think they've found a problem with your tumor. Yet.

Still, it is your choice.

And I still wonder, without an identifiable problem, would you feel better after surgery, or would you still have all the same symptoms you are suffering from now. Just wondering.

[upbeat63333]

Hope you are doing better. Did your heart rate go down yet?

Have you had the additional CT for your adrenal gland yet? I was wondering what they discovered from that.

[pme47634]

Well, I got another CT scan done of the 9th of March, and the Dr. called me with results a few days ago. Remember, I had this scan done at a different facility, so the measurements are a bit different on this one for some reason. However, it is still close to the 4cm that it was on the original scan I had completed. Here is what the report says:

"Liver, spleen and pancreas are normal. No renal stones or obstruction. Hypodensity anteriorly in the left kidney measuring 2.5 c.m. May be a cyst. There ia a 3.8 x 2.8 cm hypodense mass on left adrenal glad. Statistacally this would be adenoma. I do not have any prior studies to compare. No free fluid or adenopathy. Pelvis not imaged. No acute abdominal findings.

The order was done without contrast, and when the Dr. called me, he told me that the cyst had not grown in size, but he wanted to do one more test. In the meantime, the Dr. from Indianapolis finally called me back to let me know that my lab values for adrenaline were on the higher range of normal, but not enough to indicate a pheo or malignancy. She did tell me that there would be nothing more that would need to be done, and if I would feel better to have the adrenal gland taken out, then let her office know.

My blood pressure has been doing very well, and I have not even been taking any blood pressure medication as of late. I check it frequently throughout the day, and a couple of times it has been like 130/90, but no higher than that without the medication. I know it is probably not a good idea not to take the medicine, but that was something I decided to do on my own.

I have been having sharp shooting pains in my back area near my kidney, and I wonder if that is not due to the cyst. The cyst was noted on the last CT scan done in November, but the size was not noted. I seen a nephrologist in January, and he did not seem concerned about it to much.

I am still waiting to hear back from the endo to find out about this other test he wants to run, but I am growing more frustrated by the day.

[upbeat63333]

I think all the news you've had is great! I'm not sure why you are frustrated?? Especially in light of the fact that your blood pressure has gone down without medication. Hooray.

130/90 is a touch high, but at this point most doctors would recommend lifestyle changes to try to bring it down further, not medication. That should be good news.

It will be interesting to know the further test your local endo wants to order. Does he still have a suspicion about something? I'm not sure what it would be. You've had this mass imaged several times, and you've had so many blood draws you must feel like a pin cushion. I can only think repeat lab tests to confirm the original findings would put everyone at ease.

As I recall from your previous posts, one of the things you've been trying to resolve is chest pain. Is that correct? Does this relate to the pain you have in your back? Since all the testing from a cardiologist to a nephrologist to two endos can't explain it, I just wondered if you had ever thought of seeing a chiropractor. Just wondered it if could be related to old fashioned joint pain from spine and ribs. Worth investigating I would think since you've tried all the other specialists, why not try this one.

And finally, to update you, since we kinda have the same thing going on, tumor wise. I did two midnight salivary swabs this week, results to come. And I've just done an ACTH test this morning. With that done, I will begin my 48hr dexamethasone now followed by another 24 hr urine Free Cortisol. I hope my results are as good as yours. I would love to know that the mass is stable and not secreting much of anything.

Thanks for your update. Please let me know what is next for you. Hope your blood pressure stays right where it is, or better yet, that it goes even lower, now that you have some of this behind you.

[pme47634]

Thanks upbeat! I will keep you updated! Good luck with all your results, and please keep me posted on how it goes.

[boobookitty666]

if any needs information on adrenal gland and tumor being removed. I just had surgery six wkd ago.  Rose

[pme47634]

Well, I am doing another 24 hour urine tomorrow, so I will let you know how that goes. I seen Dr. on Friday, and he said if this test comes back ok, we will just sit on things for 6 months and do another CT scan at that time!

[upbeat63333]

I hope that your test comes back within normal range.

From everything I've read in medical journals regarding adrenal tumors, and from everything you've posted regarding your own results, to monitor is the best recommendation.

If your tumor is non-functioning (not secreting independently), and is stable in terms of growth (it might even shrink, that's been recorded as happening in some cases), you can afford to wait and see.  

I posted some of my own, new, results, in a different thread, and it looks like my tumor is secreting excess cortisol. Although, when it comes to reference ranges, its not outrageously excessive.

I'll keep you posted. Thanks for sharing your own experience, it helps me greatly.