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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?
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.
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.
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?
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?
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.
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.
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.
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.
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.
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.
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.
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.
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