Adrenal Gland Mass

[pme47634]

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]

Did they remove the adrenal gland as well?

Are you sure it is .8 cm (8mm)?  Is that the size of the mass or the gland?

"The Normal Adrenal Gland: The adrenal glands are small organs, weighing approximately 5.0 g each, on average, and measuring approximately 30.0 mm in width, 50.0 mm in length, and up to 10.0 mm in thickness. They have a linear "V’ or "Y’ shape and are located anterosuperiorly to the kidneys (Figures 1 and 2). The glands receive arterial supply from the superior, middle, and inferior suprarenal arteries, which are branches of the inferior phrenic arteries, abdominal aorta, and renal arteries, respectively. Venous drainage is through the suprarenal veins, into the inferior vena cava and left renal vein. On gross sections, the adrenal glands have a golden-yellow cortex and a reddish-brown medulla."

Have you seen an endocrinologist for testing? Do you have any symptoms like high or low blood pressure, fatigue, weight issues?

[villaparkglass]

Need some answers- please- Had my Gallbladder taken out and this is what they found.  Left adrenal gland 0.8 cm and -5 hounsfield unit in density. What does this mean, I have called my Dr. but in the  mean time...

[rumpled]

It is always scary at first - hope things turn out ok. Compile all the data you have and see how it goes. Keep  us posted. A new thread would be great so it would be only about you.

[silli4ever]

Thanks so much it is all so scary, doesn't help that my hubby is out of town for work when I got this news on saturday. I think I'm gonna head to university of madison in wi for a dr . Will let you know how it goes. Thanks again for the info everything you read online about a mass is terrifying, not the thing to read when u do not know what's going on. Appreciate all your help.

[rumpled]

You should find an endocrinologist ASAP to get the testing that you need. If you can, I would find a pituitary center only because a larger university center has a better chance of ordering the testing correctly as timing of the tests and handling of the tests impacts how they turn out.

They need to test you for cancer (hopefully not), carcinoid, pheo, Cushing's etc and see what is going on. Your primary may not be skilled enough to handle this testing as it is pretty special.

You may have to (actually you will) have to collect your urine in a jug (or more) for 24 hours - just make sure you keep the jug(s) cold no matter what they say. The preservative does not work so well and bacteria impacts the test. For many of the tests - 8am fasting is best. Read up, and get copies of everything - including scans and reports.

Not sure if the lung nodules are related but now is the time to find out.

[silli4ever]

I'm truly hoping someone can help with a little info. I went to urgent care today for what I thought could be a kidney stone in the left kidney. They did a CT scan and urine test, urine test revealed blood in my urine. Ct scan showed no stone or no inflammation of left kidney but it did show a 12cm mass in my adrenal gland. I have horrible pain in my back radiating to the front on my left side, they said to follow up with my primary . Here's the problem I have had pain on my left abdomen since before Christmas 2011 my primary keeps saying he sees nothing now this I don't know where to start to have this addressed and I'm scared outta my mind. Four years ago they found nodules in my lungs that everyone says is no big deal . I just want to not be in pain...

[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!

[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]

Good luck! Hensteeth.. ugh...

[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]

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 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]

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]

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]

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]

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]

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]

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.

[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.

[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!

[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 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]

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.

[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.