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?

[rumpled]

Have you had any blood or urine tests? Is your blood pressure high?

Until they do testing, it is not possible to tell the nature of the lesion - usually adrenal masses mean something like Cushing's syndrome, pheochromocytoma, ...

They should run a bunch of testing. Let us know how that goes. Any symptoms like weight gain or loss, low or high blood pressure, stretch marks?

[pme47634]

I have been having a lot of problems with blood pressure as of late! It is the strangest thing because one minute it will be high and then the next it is extremely low! I went to the hospital 2x last week with chest pains, shortness of breath and just an overall feeling of not feeling well. I just recently had to start taking Anxiety medications in March becasue I feel like I can no longer handle stress the way I use to be able to. I am going for another scan with Adrenal Mass Protocol on Monday, but so far that is the only other testing I am going for....do you think this will have to be surgically removed? I don't like the idea of a surgery, but to me 4.1 cm seems large compared to what I have been reading, and I just want to feel better!

[rumpled]

The BP thing could be related to the adrenal mass. Anxiety - makes me think more like Cushing's than pheo as I don't know if pheos cycle but I know Cushing's does.

I had both my adrenals removed at the same time. You can have it done laprascopically. Or however it is spelled... Just a few incisions and they can pop it out your side. It is not the most fun surgery (abdominal surgery in general takes longer to recover) but it is not bad. I have had 12 surgeries so far. It was not the worst. My adrenals were enlarged due to Cushing's.

Any blood or urine tests?

[pme47634]

No, no blood or urine tests yet, but I have a feeling that will be coming after I get this 2nd scan done!

[rumpled]

They are more important than the scans - you already know about the lesion - know you need to know about the nature of the lesion. Let us know how it goes. With the urine jugs - keep them cold even if the lab stupidly tells you not too.

[pme47634]

Well, I went for my 2nd scan today, and it was a terrible experience. First the receptionist gave me this stuff to drink, and said I had to wait 30 minutes. Then the tech came back to get me and said "I'm not going to make you drink anymore water", and I said "Water"?? The stuff I drank looked like orange juice, and she went up to the reception desk, and came back and said we should be ok.....It was freezing in the room, and she had me lay down on the bed to start an IV....well the first time the contrast dye leaked into my skin, not the vein, and you talk about pain....and now my wrist is swollen.....the 2nd time she tried in the other arm (upper), and same thing there! Finally she got another tech to come in and she did it right. However, during the scan I got very short of breath and it scared me really bad, and I told them about it. It was the weirdest thing.....also, I noticed that the paperwork said that some people with pheoceocrytoma are more sensitive to ct scans? Why is this? I have not been diagnosed with this, but I was just really curious why they would do scans on patients if they are more sensitive, and have pheo?

[pme47634]

So I got the results of my scan back just now, and the nurse said it is adrenal adenoma, and I need to have it rescanned again in 4 months to make sure it is stable. However, I am not comfortable with that, because something is seriously wrong with me. I feel terrible, and my symptoms have been worsening for a while. I go to the Dr. on Monday to make sure my pneumonia is gone, and I plan on talking to her about this. I am just surprised that she does not want to do any urine or blood tests, and if she doesn't order any after I see her on Monday, I am going to look for an endocrinologist to take me. I want this tumor taken out because I know it's what is causing all my symptoms.

[rumpled]

The scan is one thing - but I agree - they at least need to do a 24 hour cortisol, ACTH etc. and see if the adenoma is active. That whole watch and wait thing is... icky.

[pme47634]

Well, here is what my scan results actually say, and I hope someone can help me interpret this....Enhanced images were obtained according to adrenal mass protocol. There is a clearly demarcated oval lesion in the left adrenal gland measuring approximately 4 cm in greatest diameter. Average density within the lesion measures approximately 10-11 Hounsfield units which is considered borderline for a high lipid adenoma (typically 10 Hounsfield units or less) Following administration of contrast images were obtained in addition to 10 minute delayed enhanced images. There is greater than 50 percent washout which also favors a benign adenoma. No other significant findings are noted.

Impression
1. 4 cm adrenal mass. Imaging characteristics favor a benign adenoma. Approximately 3-4 month followup is recommended to assess stability, However,
2. not mentioned in the body of the report is a small left renal cyst.

What does all of this mean?

[rumpled]

It means it is not cancer - but they have NOT ruled out hormone secreting in my tiny little mind - that has to be done with testing. Please go find a neuro-endo in a pituitary center and get some testing under your belt.

[pme47634]

So my Dr. did some more testing, and I am still waiting for most of the results....however, they did call yesterday to tell me that my aldosterone level is low, thyroid tests came back ok, but they are still waiting for the 24 hour urine results, and I guess that will determine the next step. My question is what does the aldosterone level being low have to do with the tumor on my left adrenal gland?

[rumpled]

Hypoaldosteronism is not typical. Is your potassium and sodium normal? What was the 24 hour urine test for? Cortisol? So they are looking for Cushing's or Addison's. Finally.

If your Aldosterone is low, renin is low and cortisol is high - that points to Cushing's syndrome.

[pme47634]

Dr. called this morning and wants me to do another 24 hour urine, follow a low sodium diet for a couple of days and then come back to get another aldosterone level....stating that some people who follow High Sodium diets have a low aldosterone level....the Dr. was thinking that maybe I had a Pheocromocytoma, and that was the initial reason for the 24 hour urine, and she was checking for catacholamines. Here are my results of my 24 hour urine and blood work.

CAT UR CREAT MG/DL  68
CAT UR CREAT MG/DAY 1734 Normal range is 700-1600
Ephinephirne UG/G CRT <3 Normal is 0-20
Ephinieprine ug/g Day <3 Normal is 0-25
Norepinephrine UG/G CRT 32 Normal is 0-45
Norepi UG/Day 56 Normal is 0-100
Dopamine ug/CRT 176 Normal is 0-250
Dopamine UG/Day 306 Normal is 60-440
Volume of urine in 24 hour period was 2550
Aldosterone ng/dl was <1.6
T4 Total 6.9 Normal range is 4.5-10.9
T3 Total 0.93 Normal range is 0.60-1.81
TSH High Senstitivity 2.32 Normal range is 0.55-4.78

Does this help any at all?

[rumpled]

*Sigh* Your doc is looking for a pheo? What about cortisol? That could do the same thing and accounts for the ups and downs. Pheo would only be super duper high blood pressure.

Your tests look normal to me. He should look as well for Cushing's.

[pme47634]

They look normal? She was concerned about the Aldosterone level, and had me do another 24 hour urine, and then follow a low salt diet for 2 days, and then do another blood test tomorrow, so I don't know.

[rumpled]

All but the aldosterone... sorry was not clear - that was abnormal before. I hope the doc tests renin too - they are normally tested together.

[pme47634]

Yeah, it was....I just did not have the results in my hands, was only told it was low. I know today I went back for bloodwork, and the tech said they was testing Chem 8, and another aldosterone level. Let me ask you this.....if they know the mass is there, why is it so important to do all this testing? Seems to me they would just want to take it out, especially if it's causing me problems!

[rumpled]

You would THINK that huh... but having had the surgery... they don't do any surgery unless there is a reason to take the puppy out. So they need to determine if [insert name here] is effecting you. Surgery has risks - infection, etc. and anesthesia is nothing to laugh at.

I carried Fred around for 12 years.

But I am like you - I want them out too...

[pme47634]

Yeah, I just am praying that they figure it out soon!

[rumpled]

Push for a cortisol test! For me! LOL...

[pme47634]

OK, I will do that! I have an appointment on Tuesday with primary Dr., and then one on Thursday with Cardiologist!

[upbeat63333]

I've been following a couple of your posts because I recently found out that I have a 4.5 cm, lipid poor but well circumcised and homogeneous tumor on my left adrenal gland. This infor came after having a CT scan for abdominal pain--turns out it was an enlarged appendix which I've since had removed. But they didn't take delayed images at the time of the initial CT to check for wash out, because once the appendix was found enlarged, I was off to the hospital to have it removed.

Now all the work up on the adrenal adenoma begins.

I've had DHEA Sulfate, Aldosterone, Aldosterone /Renin ration, Metanephrines and Adrostenedoine come back as within normal range but I don't have copy of my results, or the lab/ranges.

The 24-hr urine cortisol test came back at 164.5 (lab range given as 10 to 80ugm/dl). I know lab ranges can be different, but upper limit seems to be 100ugm/dL. Would urine output be a factor? I think mine was 3500cc for 24 hours, I'm not sure if that was considered. And since I was three weeks post surgery, healing, limiting work, and  hospital bills pouring in, I've been **stressed**. Can a measurement this high account for stress? Or any of these other things: I have gained weight, maybe 40lbs, but over 10 years, therefore I would be considered to be obese , and I might even be depressed now knowing I have this tumor. However, I don't exhibit any other cushings symptoms. (( I used to have panic attacks, I think were as a result of pvcs at 1200/hr. I've never had high BP, but after taking a beta blocker to control the pvcs, I hardly get pvcs, and I don't get panic attacks anymore either)).

I have just completed the dexamethasone suppression test today, but I don't know the results, until Monday or Tuesday.

I have been told I need an MRI to get baseline of adrenal tumor and then another in 6months to check stability. But if the tumor is secreting, shouldn't it come out regardless? They said they might do a fine needle biopsy. With lab normal except cortisol, I'm not sure why, I know it's lipid poor, but everything else points to benign.

pme47634, I know you haven't found out the function of the tumor yet, secreting or not, but I know from what I've read that a lipid rich tumor that has a 50% washout is almost certainly benign. I guess it would be nice to know that myself.

Sorry for the long post. Just wondering where to go from here. The results of the suppression test will point the way I guess. But I wanted to know from rumpled if you'd be willing to share any information since you seem to know an awful lot about this. I mean, how do they know I don't also have pituitary tumor involvement, they haven't done an ACTH lab. Would that be necessary given my other labs being normal? Geez i have so many questions.

[upbeat63333]

I've been following a couple of your posts because I recently found out that I have a 4.5 cm, lipid poor but well circumcised and homogeneous tumor on my left adrenal gland. This infor came after having a CT scan for abdominal pain--turns out it was an enlarged appendix which I've since had removed. But they didn't take delayed images at the time of the initial CT to check for wash out, because once the appendix was found enlarged, I was off to the hospital to have it removed.

Now all the work up on the adrenal adenoma begins.

I've had DHEA Sulfate, Aldosterone, Aldosterone /Renin ration, Metanephrines and Adrostenedoine come back as within normal range but I don't have copy of my results, or the lab/ranges.

The 24-hr urine cortisol test came back at 164.5 (lab range given as 10 to 80ugm/dl). I know lab ranges can be different, but upper limit seems to be 100ugm/dL. Would urine output be a factor? I think mine was 3500cc for 24 hours, I'm not sure if that was considered. And since I was three weeks post surgery, healing, limiting work, and  hospital bills pouring in, I've been **stressed**. Can a measurement this high account for stress? Or any of these other things: I have gained weight, maybe 40lbs, but over 10 years, therefore I would be considered to be obese , and I might even be depressed now knowing I have this tumor. However, I don't exhibit any other cushings symptoms. (( I used to have panic attacks, I think were as a result of pvcs at 1200/hr. I've never had high BP, but after taking a beta blocker to control the pvcs, I hardly get pvcs, and I don't get panic attacks anymore either)).

I have just completed the dexamethasone suppression test today, but I don't know the results, until Monday or Tuesday.

I have been told I need an MRI to get baseline of adrenal tumor and then another in 6months to check stability. But if the tumor is secreting, shouldn't it come out regardless? They said they might do a fine needle biopsy. With lab normal except cortisol, I'm not sure why, I know it's lipid poor, but everything else points to benign.

pme47634, I know you haven't found out the function of the tumor yet, secreting or not, but I know from what I've read that a lipid rich tumor that has a 50% washout is almost certainly benign. I guess it would be nice to know that myself.

Sorry for the long post. Just wondering where to go from here. The results of the suppression test will point the way I guess. But I wanted to know from rumpled if you'd be willing to share any information since you seem to know an awful lot about this. I mean, how do they know I don't also have pituitary tumor involvement, they haven't done an ACTH lab. Would that be necessary given my other labs being normal? Geez i have so many questions.

[rumpled]

I have met people with Cushing's that gained hardly any weight but you have gained 40lbs. You are having depression - another symptoms BTW, I had Cushing's and had low BP. It is possible and entirely likely you have it with the UFC so high - stress does not last like that.

The high output should be looked at for an ADH issue. How is your potassium and sodium as well?

As for doing ACTH, yes it is necessary as cortisol and ACTH are in the same feedback loop and it is entirely possible for a pituitary lesion to cause an adrenal tumor, but an adrenal tumor cannot cause a pituitary one - so you need to find the cause of the imbalance - ie the source of the problem so the proper surgery is done. You don't want to remove the adrenal and still have Cushing's. Seen it happen. Just knowing that your doc only ordered one test (and a very unreliable one at that) means he is not knowing how to test or treat this disease - try to find someone else - find a pituitary center so you can get more comprehensive testing. Also, get a copy of your testing.

[upbeat63333]

thank you for your information, I feel really fortunate to have found this site, and someone who has so much knowledge. I understand it comes from your own experience, which isn't necessarily good for you, but it sounds like you are getting the right treatment and that matters greatly. Thank you for helping so many others to do the same.

I have asked for copies of my labs, but the lab won't release until 7 days after submitting to doctor.

I think my doctor is ok, she is doing me a favor by seeking the the advice of an endocrinologist and then requesting tests (since she knows sending me there will cost me more money, which is an issue right now, hence the stress--but there is also physical stress from the appendectomy itself, and healing, I was hoping that would be the reason for the increased cortisol, not knowing how high 164.5 really is).

I wondered about the implication of a pituitary tumor, especially if I don't suppress with the dexamethasone. If I do suppress, does that mean pituitary is NOT involved? Or should the ACTH test still be done regardless?

By the way, my potassium and sodium, and all other labs really, are good. They are not low normal or high normal even. Sorry, but what does ADH mean?

[pme47634]

I am so frustrated at this point! I just got off the phone with my Dr. office, and she says that my aldosterone level is now normal, but my Vitamin D is extremely low and wants me to start 50,000 units of Vit D 3 times per week. However, the rest of my blood and urine is normal. So I have an appointment with her tomorrow afternoon, but I have a feeling that since all of my blood and urine are now normal, I will not be getting this tumor removed, or probably not even get a referral to an endocrinologist!

[rumpled]

Cortisol can cycle.
Low D can be a symptom of high cortisol. Get copies of the tests - move on to another doctor but it may take education first - but take the D - it does help.

[pme47634]

OK, is Cortisol and Aldosterone the same thing? I don't think my Cortisol has even been checked yet, but I will get copies of all labs tomorrow when I go to the Dr.

[rumpled]

Cortisol and aldosterone are not the same. However, cortisol can effect aldosterone (cortisol can pretty much mess up a lot of hormones, but docs for some reason cannot fathom that concept...). Cortisol can only be checked at certain times of the day to be valid as in a normal person it varies - it is called a diurnal rhythm and if that is off, you feel like... bad. Mine was reversed so I was high at night, low during the day which meant I could not sleep and could not function. Joy. Aldosterone and renin manage sodium and potassium balance and are also an adrenal function so often those with adrenal issues will have issues with them as well - and it can effect blood pressure as well as make you sick as a dog.

[upbeat63333]

I have not heard back yet on whether I suppressed with the dexamethasone low dose.

Just wondering,really, what that test will prove.

If I suppress, does that mean that I don't have a pituitary tumor? AND that the adrenal tumor is non-functioning???

If I don't suppress, that probably means I COULD have a pituitary tumor, so would have to investigate that, and/or that the adrenal tumor is functioning (with or without a pituitary tumor).

By the way, I'm vitamin D deficient (had blood work a year ago). I'm going to start telling more people about the low vitamin D / high cortisol connection.

[upbeat63333]

I just discovered what ADH relates to, you mentioned it in a previous post. Diabetes. I don't have any problem with sugar handling. I took a high sensitivity test for sugar handling this year, HC A1, I think it is called, and I came back in the middle of the range.

I'm "calmly", best I can, waiting for the dexamethasone suppression results. I think chronic stress, really over a couple of years now, related to job satisfaction and finances, coupled with the physical stress recently of the appendectomy contributes to the high cortisol level. At least that's what I'm telling myself until i get the suppression test result.

[rumpled]

ADH  is water diabetes, NOT sugar - totally different! It means you drink a lot, and pee a lot. I only thought that for the high output - at least, I thought it was high output... look up diabetes insipidus.

As for the suppression test... well... the doctor is going to say that if you suppress you are fine and if you do not, then it indicates an issue, however, I failed all suppression tests (there are low dose, high dose etc.) and I still had the tumor - and I know more people that have failed the test WITH tumor than have passed it... oddly... so it is not my favorite test.

D can be low for reasons other than cortisol - but cortisol will lower D, and ferratin, and thyroid, and testosterone...

[upbeat63333]

Thank you once again for your information. I guess no test will provide 100% certainty. In addition to any lab or diagnostic test result, we also need to take into account how we "feel".

I think my urine output was high too, but I think it's because I drank a lot of water THAT day. I wanted to make sure that I wasn't dehydrated for the 24hr UFC test, just in case concentrated urine skewed the results. I now know it's independent, silly me.

But generally, I try to get at least 8 glasses of water a day, some days are better than others. I think that is about average. I'm not driven to drinking water by thirst, more by thinking I should drink water to be healthy and because I don't think I drink enough.

I could go a whole morning, or day without drinking a single glass of water if I didn't consciously make myself do it.

Regardless of the result of the test, I will ask for an ACTH test since I haven't had one yet. If there is a problem with ACTH, I'll ask for a CRH test also. Short of asking for an MRI of the pituitary, I'm not sure what else to do, even then an MRI might not show anything, right?. GEEZ. Do you suggest any other thing to request or have done to prove or disprove pituitary involvement?  

So again, even with all these results, it might be based on how I feel, and I certainly never felt or thought of myself as cushionoid. My weight gain has been small over many years,  and I attributed it then and now to poor coping techniques for stress, like drinking more alcohol and eating more sugar and convenience foods, and finally, not exercising.

I maintained my weight for the last year just by reducing alcohol and sweets. I think, if I am depressed, it comes from the chronic stress and lack of exercise.

Maybe I'm also just in shock and denial and hoping for the least involvement possible, adrenal tumor not withstanding.

[pme47634]

Well, just got back from seeing primary care Dr. and she said that she does not know what to do about blood pressure or anything.....she said since aldosterone was normal, she does not think it's the tumor that is causing it, but she is sending me to a nephrologist to see what they can find out! I am just so discouraged at this point! My blood pressure has been running around 150/98 with 145/114 being the highest reading over the last 24 hours, and I am just so frustrated and tired!

[pme47634]

I do have an appointment with my cardiologist on Thursday, so I am hoping he will be more concerned with the tumor then she has been!

[upbeat63333]

I don't think I've read anywhere in any of your posts that you've had a cortisol (blood or urine) test yet.

I have a 4.5 cm tumor on my left adrenal, found after a CT scan for abdominal pain (appendicitis). Sadly, they did not do delayed images to check for wash out, like they did for you, so there is still some question as to whether mine is benign or not. I've read, with results of wash out like you had, yours is almost certainly benign. Most doctors lose concern if a tumor is benign, because they think that is all that matters.

However, as rumpled keeps asking, unless they do some other blood work, they still don't know if its "functioning" meaning secreting--in your case possibly secreting cortisol.

I don't think I've seen that you have had an ACTH result either. So, you are like I am, wondering if your adrenal tumor is secreting, and if it is, why? Without the cortisol, you don't know if its secreting, and without the ACTH test you don't know if pituitary gland could be involved.

As rumpled so succinctly put it, a pituitary tumor could cause an adrenal tumor, but an adrenal tumor doesn't cause a pituitary tumor.

I think the nephrologist is going to focus on your urinary tract system, but I am happy you will see a cardiologist and get a work-up with that specialist as your current symptoms may be completed separate from the adrenal tumor, or they may be as a direct result.

[pme47634]

Thanks upbeat! I have not had the cortisol or the ACTH yet, and I am not quite sure why the Dr. did not check for that! All she checked was thyroid and aldosterone. My cardiologist only sees me due to complaints of shortness of breath, heart palpitations and I feel like my heart is beating out of my chest ( pounding really hard upon little exertion). However, they have never found anything wrong with my heart except it is a little enlarged due to High blood pressure which I never knew I had until recently. He started me on a very small dose of Toprol to ease my symptoms! It did seem to help for a short time, but I am now up to 50 mg of Toprol, and the symptoms have returned with a vengeance. I did not really understand the referral to the nephrologist, but the Dr. said they are the ones who investigate blood pressure issues??? Never heard of that before, but my hopes are that since I do have the tumor on my adrenal gland (found on CT scan), as well as a cyst on my kidney, he may be a good place to get some more test run. I am also going to look into seeing an endocrinologist without a referral. I honestly and truly feel that the tumor is the cause of all of my symptoms, and for the last 4 years I have been seeing numerous Dr.s who cannot give me any answers, and now that I know I have the tumor and I have been researching it, I really feel that this this is what it causing me so many problems!  Here are some of the latest lab and urine results, but I don't know what much of this urine stuff is for, so I am hoping you or Rumpled can help me out here!

Urine
17-Hydroxycorticosteroid-10.2...Range 4.0-14.0
17OH UR CREAT MG/DL-44...Range mg/dl is all this says
17OH UR Creat MG/DAY-1540...Range 700-1600mg/d
17OH UR 17OH-6.6(H).....range....2.0-6.5
My urine output was 3500 in a 24 hour time period...Also, at the top of my lab result paper, I notice it says 24 hour urine result-Abnormal

VMA, 24 Hour Urine ( Not sure what this is)???

VMA, 24H Ur Adult-4.6....Range is 0.0-7.0
VMA UR CREAT MG/DL-46 Range is mg/dl
VMA UR CREAT MG/DAY-1610 (H)  range is 700-1600
VMA Interpretation....normal

Blood Results

Glucose-115(H) Range 70-99
BUN-10 Range is 6-20
Creatinine-0.8 Range is 0.4-1.1
Sodium-138-range is 136-145
Potassium-4.8 range is 3.5-5.4
Chloride-104-range is 98-107
CO2-29 range is 29
Calcium-9.4 range is 8.7-10.4
EST GFR- >60 range >60
Vit D 25 Hydroxy-11 (L) range is 30-80
Aldosterone-16.0 no range is listed

How do you know what the range is for the ones that are not showing a range?

[pme47634]

So after doing some more investigating, I see on my lab report that maybe she did check my cortisol in my urine because it says:
170H UR 17OH Corticosteroid was 6.6 and normal range was 2.0-6.5 so it is just barely high? Am i reading this right, or is there another cortisol?

[pme47634]

Also, what is renin?

[rumpled]

17 OH UR 17 OH Cortocosteroid is a metabolite of cortisol but is not cortisol... alas, she has not tested cortisol.

Renin and aldosterone work together - they have their own axis/loop to keep sodium and potassium and therefore blood pressure and other things correct.

I agree with upbeat - the nephrologist is not going to test cortisol and only will look at the kidneys - not look at the entire picture. She has NOT ruled out everything.... she has ignored a pretty obvious finding but perhaps she thinks it is rare... dang it!!!

[upbeat63333]

I received the results of my DST, and it appears I did suppress.

8 am serum cortisol 4.0 ug/dl, with lab reference 5-23 ug/dl and report states that suppression occurs <5 ug/dl.

After pouring over the internet I thought suppression meant' < 1.8ug/dl, but I've since looked at manuals of Lab & Diagnostic Medicine which seems to indicate there are two scenarios that doctors use.

1) if there is a decrease of at least 50% from baseline cortisol level
or,
2)  that "most endocrinologists" use the measurement of < 5 ug/dl to rule out Cushings

That being said, I haven't had any cortisol baselines, I haven't had an ACTH test to check that level, and  my doctor, who has been ordering all these tests following discussion with an endocrinologist, now wants me to see that endocrinologist to talk about cushings and having a future adrenalectomy.

I'm fine with the referral, but it makes me think that she isn't quite sure of herself.

What definitively rules out pituitary tumor involvement?

[pme47634]

I tried to get into an endocrinolgist, but they won't see me without a referral! I don't know what more to do! I feel like my hands are tied. I am in Indiana, if anyone has any ideas, I am willing to take them! I wonder if my cardiologist will refer me to see an endocrinolgist? What are your thoughts on this?

[upbeat63333]

Its worth a try to ask your cardiologist for a referral, if he/she can't explain a cardiovascular reason for your symptoms, but they would much rather have your general family physician do all the "gate-keeping".

If you were to bring all your blood work results, I'm thinking the cardiologist would not know what to make of them......the things they look for in lab are much different. Your better bet is to ask the nephrologist for an endo referral (after the nephrologist has run the tests they think are important, of course).

I can tell you that I used to suffer much the same things as you are now experiencing, and I went through all the heart tests possible, ending with the same diagnosis every time, pvcs, benign, benign, benign.

But when I got to 1200pvcs/hr I was half mad and wanted them to do anything to make them stop. Finally I tried a beta-blocker that did work, and with about 100 pvcs/day, its a level I can now live with. No more shortness of breath, dizziness, anxiety. Never dreamed I had an adrenal tumor, or any pituitary involvement, that was never ever considered to work up for the pvcs. So I'm left wondering now.

Internist thinks I'm in a gray area and could go either way for a secreting tumor. So off to the endocrinologist for more tests, yippee. But I will get some answers, and thanks to rumpled, I'll not let them look past the pituitary as a contributor.

Rumpled, could you tell me why they would take the entire adrenal gland and not just remove the tumor, especially as the tumor is described as large with well defined borders. Why remove the whole gland, if its the secreting tumor causing the problem?

[pme47634]

Thanks Upbeat! I am so glad that I have this forum to come to and get some insight as to what may be going on! What are pvcs?

[rumpled]

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.

[rumpled]

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.

[pme47634]

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!

[rumpled]

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...

[pme47634]

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!

[upbeat63333]

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.

[upbeat63333]

Sorry, I guess I addressed my question to the wrong person yesterday, it should have been to you, please see my post of yesterday,,,,,,,,or, better, I'll just paste it to this post,,,,,,,,,,

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.

[rumpled]

I completely disagree with your doc on the suppression... that is sad. How many cases has she diagnosed? But I agree that stress is not the issue, you do have a cortisol issue. The other DST is just to cover her - she is just looking to see if you are going to not suppress at any level. DST is ... just not a reliable enough test to draw any conclusions like that. I know people that suppressed and were pit, I failed all and was pit, most pit people fail, adrenals fail too... it just seems like a test that... whatever...

The ACTH should be done before you take the dex - as well you should do the salivary tests too. ACTH is best as an 8am fasting test. Make sure it is a chilled EDTA tube and put in the centrifuge immediately. Scream about if necessary.

Salivas can be done anywhere from 11pm to midnight.

Having a lot of urine would actually decrease the amount of cortisol... You may or may not lose the other gland - but it seems silly not to look at the pit since pit cushing's is 80% common and adrenal cushing's is 10% - so odds are pit.

[upbeat63333]

I will do all the tests. I just wasn't sure what the best order would be.

I had to "ask", maybe the better description is "tell"?, the endo that salivary cortisol and DST would probably not give the best results if done together. She wanted me to start them at the same time because the results of the salivary cortisol might take a long time to get returned, maybe longer than the next scheduled appointment so the sooner I started, the better.

But when I asked about the "logic" of collecting salivary cortisol while on dexamethasone, she said, "right.......(pause), do the salivary cortisol test first, then start the DST on the third day, then do the UFC starting 8am on the final day".

After her confusion, I wasn't sure if I should be doing UFC following DST or taking a serum cortisol. UFC usually doesn't "start" at a specified time, like 8am as she suggested I should start collecting.. Is UFC more sensitive after DST?

And more importantly, she just seemed to acquiesce when I asked, often, why pituitary wouldn't be involved, and finally she agreed to add the ACTH test, but gave no instruction on it, except that labs almost always do it wrong so it's usually not worth doing. WHAT? I guess no one can look past the big old adrenal tumor I have.

I didn't know if ACTH would provide much information without a corresponding cortisol. Does it provide worthwhile info as a stand-alone test?

I know ACTH is best at 8am, and thank you for saying it should be done fasting, and I know that I should make sure they do it right, but I thought that meant putting the sample on ice after it was drawn so that it was chilled until it got measured.

WHEN should I do it in relation to any of the other tests??

Does it matter if I take it on the morning on the same day as one of my salivary swabs? I mean, would it help, give more information if I did it the same day?

Should I do it the day after my 48hr DST? That should suppress the ACTH too wouldn't it. Would measuring ACTH after the DST be worthwhile, while at the same time starting the UFC that day?

It seems totally up to me when I get the ACTH, and I'm so confused right now I just want to do the right thing and get this figured out, because I'm pretty sure my internist and now this endo don't really know. And the endo is only one of two, at the same clinic in my town. I'd have to drive 3 hours to another city/clinic, and that visit would be out of my pocket. I just can't do that. I've just arranged to pay off my appendectomy in 24 months/payments.

It's so strange, and maddening to me, but if the adrenal mass wasn't found on CT, none of this would have started, and I didn't/don't really have any symptoms that would reveal a pit. or adrenal problem except 40lb weight gain over more than 10 years. I wasn't too bothered by that, contributing it to diet, which, when I improved, I lost weight. It was just the recent terrible stomach pain that lead to a CT and diagnosis of appendicitis, and oh ya, you have an adrenal tumor, surprise surprise.UGH.

[rumpled]

Do all the testing before the DST - once you take the dex - it will take 2 weeks to get out of your systems. You can do the ACTH, saliva and urine all together as they do not interfere with each other - you can put the saliva in the freezer and do a urine test another day and then go the lab for the ACTH and turn them all in - then go back and start the dex... but dex lasts a LONG LONG TIME so your doc is not smart telling you to do a urine at the end - the urine will pick up the dex. Dex will suppress ACTH.

The tests are not that they are more sensitive (I would say accurate as I personally detest any and all DSTs... but that is me) but they are measuring different things and different reactions. She could consult an expert with your testing on her own to find out if it was pit or adrenal. Docs consult each other all the time.

[upbeat63333]

Well, I don't have any confidence, in any of the tests, now.

I know I am reading the lab request correctly, and I am to collect 24 hr urine AFTER the 48 dexamethasone. I have no other request/order for a separate UFC to be done before the DST, I was told, "collect it after finishing the dexamethasone". I am to do it once, and its the morning after dexamethsone.

I will do the ACTH test at 8am in the morning, and then do the salivary cortisol at 11pm that night. That is followed by another salivary cortisol the next night at 11pm (she wants two 11pm swabs). I was never told to freeze the swab(s), I have to mail them into a lab, so I don't see the point in freezing the swabs. Endo says there are only two labs in the USA that measure salivary cortisol correctly.

Isn't the point of DST to suppress ACTH, thereby suppressing cortisol to ensure the HPA loop is working correctly?

My understanding is that doing an ACTH with serum cortisol to get a baseline, taking dexamethasone, and then next morning follow with another ACTH with serum cortisol is the best combination. How else would you rule out pit vs adrenal?

I am now thinking none of these tests will tell me (or the Endo) anything. If the 24 hr urine sample is useless after 48hr DST, why would she order it?

[rumpled]

Actually I looked it up - bleah - a UFC is done after that DST... it is not often done so I forget! agh!...  But that is still just done for diagnosis, not source. So she is doing this as a diagnostic test. Other ways to look for source are a pit MRI, ACTH tests...

I am confused with two of you posting in the same thread - have you have a high UFC on your own before? Or just the DST test? Any other plain serum cortisols?

Some of the large labs now are taking in the samples, so if you hold them, I would freeze, but if you are mailing, we do freeze before mailing as bacteria can degrade the samples but if you do the samples one right after the other and then mail off the next day, then you should be ok. I would keep the one you did in the fridge though before you mail it off. I used to use either esoterix or I forget the name but it was in Wisconsin.

[upbeat63333]

Thanks for your reply. You have so much information, knowledge and experience, and answer so many posters questions, it's a wonder you can keep it all straight.

I had DHEA, Aldosterone Blood, Metanephrine Plasma, Renin Plasma, Aldosterone/Renin, and androstenedione all come back "normal" in reference range of lab.

At the same time I did a 24 UFC test (3 weeks post abdominal surgery for appendicitis) come back 164.5 nmol/dl lab range 7-80 nmol/dl.

Following that, a single .5mg DST was ordered, and it came back as 4 (lab range 5-23) Lab report said suppression achieved if below 5, but internist said I should have suppressed to 1.8, maybe 2 so she referred me to endo for suspected, mild hypercortisolism, suspect adrenal mass.

I have since read that in the past all labs used <5mg to denote positive dex suppression, but in order to make the test more sensitive and rule out ALL cushings potential, they now say 1.8, and some drs allow 2-3 to suggest suppression.

However, I have not had a baseline serum cortisol, and I have not had an ACTH test, although ACTH test is ordered now after my persistence at the Endo appointment.

Endo ordered ACTH, salivary cortisol, (two at 11pm to be mailed into lab), and 48hr dex followed by 24hr UFC.

I wasn't given any instruction on ACTH, so I thank you for your input. I now know that I should do it fasting, wasn't told that by endo. And I'm now thinking it would be best if I did it between the two late night salivary cortisol tests.

Whatever I have, it seems to be mild, the numbers don't appear to be too high, not in the range I've seen some people post here, but of course we are all individual.

I think with my symptoms, or lack thereof, that I have some time to try to figure this out........I want to make sure that everything is done right, done to give the best diagnosis and reveal the source (pit vs adrenal) ESPECIALLY, because you have highlighted your experience with the maze and confusion in getting correct information, and from reading these posts, it is an experience shared by many.

Do you think the stand-alone early morning ACTH test (without serum cortisol), will provide sufficient info to rule out pit involvement? Or, in combination with the salivary cortisol and 48 hr DST/24hr UFC, will I have enough information to rule out pit and discover if the 4.5cm mass is secreting?

[rumpled]

Yeah... I think actually an accurate  ACTH would tell her more - the DST she ordered threw me for a loop - it is rarely ordered! But no one should go to surgery on so little - she is right to order more testing so the salivas are good, UFCs are good. I am just not good she has ruled in/out pituitary and so I would really ask for the pit MRI just to be sure. It is well known that pit tumors cause adrenal lesions but not the reverse and pituitary cushing's is way way more common. She should know that. We shall see what her plan is.

[upbeat63333]

Thanks again for your input and knowledge.

When I asked the endo about pituitary involvement she said "it's about as common as hen's teeth, I don't expect to find any hens teeth here".

ha ha ha ha ha ha

They discovered a 4.5 cm adrenal tumor, incidental to a CT for appendicitis. That's a big ole hens tooth in my opinion.

I'm told adrenal tumors are not very common (although more are discovered as a result of CT for other things) and if they are present, "most" are benign, but they need to be investigated to determine if  they are secreting.

Guess I just want to rule out any more hens teeth floating around my body, where there is one..............

I will do the tests in the next week or so, attend the follow-up endo appointment and based on the results, I will decide what to pursue next.

If these lab results are "equivocal", especially the ACTH, I will not agree to adrenalectomy until they can positively rule out pit involvement. If that requires an MRI to determine whether a pituitary lesion exists, then I will push for that, as hard as I can and hope they will agree.

However, it concerns me that not all pituitary tumors can be detected with MRI. ugh.

So if I push for the MRI and it is negative, then I'm not sure what to do next. It would be near impossible to get my doctors to agree to further pituitary investigation, especially in light of the fact that I'm basically symptom free.

I have a few odd symptoms here and there, but now I'm wondering whether I should be getting my thyroid tested. They are going to become unglued if I start asking about thyroid involvement, when it seems apparent to me all they want to focus on is the adrenal mass and taking it out.

Thank you once again for your information. I will post my results following the endo appointment mid-Feb. I'm sure I will have more questions following that. You've been most generous with your information and time.  

[rumpled]

Good luck! Hensteeth.. ugh...

[mazielynn]

I am 59 yrs old, chronic liver disease since 1997. My GI spec orders gastro testing (colonoscopy, ct, ultrasound)  q 12-18 mos. for followup.I also have quarterly lab work that includes liver function, urine and CBC complete. In 1998. I was sent to rheum and dx'd with arthritis and fibromyalgia. An ANA abnormal test at that time had him thinking it was more in the Rheumatic Arthritic family. The following year, 1999, lab tests revealed a blood sugar level of 598 and A1C of over 10. In the hospital, ct abd revealed a lipid rich adrenal less than 10 H measurement and liver scarring as well as additional fatty infiltration. New on this ct was now fatty deposits in gallbladder and pancreas. An identified cyst on right kidney had grown from 2 to 6cm.
Lab works since becoming insulin dependent at that time have been high (blood sugars avg 225 and A1C 6-7.5. BP on med ranges from 150/90 to 195/115. Lots of sweating, joint/muscle pain, fatigue, abd distention, weight gain of 30# in 7 yrs, concentration problems, depression, IBS, adult acne over last 3-4 yrs. Two mos ago, for the first time, lab tests specific to endocrine disorders were performed including cortisol, aldosterone/ renin. Both tests came out normal to the surprise of myself and endcrinologist. He will rerun all lab and ct next month for comparison.
Does anyone out there have similar hx and would be farther along in knowing if the adrenal tumor could be the puzzle piece that completes this " game of life " for me.
Thank you, Queenie

[rumpled]

Wish this was a new thread...
What time were the tests run? Lab error and testing time is critical in this. Plus cortisol varies anyway and you can cycle. I had the cyclical form.

It could also be that you need more testing over time - free cortisol (urine and saliva) has issues so you may have high cortisol binding globulin - try serum (blood) at the diagnostic times. Tests are fussy. ACTH is super fussy. Get copies of everything.

Pituitary tumors can cause adrenal tumors - so make sure they look *up* so to speak - and pituitary source is more common - so get tested very thoroughly for source. It may even be ectopic - so you have to really look hard. There is no one test for Cushing's - it is not easy to diagnose. There are some resources in the health pages - lower right - to help!