Results of cortisol testing negative

No expert here. So many people comment here, I can't remember what your taper was. but I'm wondering why you went from 2 to 5mg instead of 2 to 3mg. I had trouble going from 3 to 2.5 to 2mg. I'm slowly attempting 2 to 1.5mg and having some problems. I'm trying to do a lot of weeding and my hands/wrists are hurting and I'm feeling very tired at times. I have OA and cppd in my hands and it's now aggravated so I may just stay on 2 mg for now until I get past outside work.

No expert here. So many people comment here, I can't remember what your taper was. but I'm wondering why you went from 2 to 5mg instead of 2 to 3mg. I had trouble going from 3 to 2.5 to 2mg. I'm slowly attempting 2 to 1.5mg and having some problems. I'm trying to do a lot of weeding and my hands/wrists are hurting and I'm feeling very tired at times. I have OA and cppd in my hands and it's now aggravated so I may just stay on 2 mg for now until I get past outside work.

A borderline ACTH level might result in "inadequate" levels of cortisol especially if something stressful happens.

What were the cortisol level test(s) that were ordered that came back "negative." I assume your cortisol level was within the normal range at the time you were tested. However, there really isn't a single result of a lab test for secondary adrenal insufficiency that can be interpreted as positive or negative. A cortisol level is reported as a numerical value in conjunction with an evaluation of many other factors to determine if you have adrenal insufficiency.

Cortisol levels are highly variable depending on many factors. There needs to be some sort of accounting for all of the factors that can influence a cortisol level. The time of day is one such factor so a morning cortisol level is usually only done as a "screening test" for secondary adrenal insufficiency. The result might only be called "probable" or "unlikely" but not with any degree of absolute certainty.

Being on 5 mg of prednisone is another factor that would make your cortisol level test "less reliable." I'm not sure that postponing your morning prednisone dose is enough time to get a reliable cortisol level lab test. My endocrinologist said I should not take any prednisone for at least 48 hours before my morning cortisol level blood draw. The longer I could be off prednisone the more reliable a cortisol level would be. Some doctors might say stopping prednisone for at least 48 hours or longer is necessary for an accurate cortisol level. Also, the way it was explained to me at least, a cortisol level can't be checked unless I was on 3 mg or less for a period of time.

The amount of stress prior to the lab test must also be considered along with other medications you may have taken prior to the lab. Cortisol levels are hard to interpret so it is good that your symptoms are being considered. Whether or not your adrenals are capable of responding to extreme stress is questionable for anyone trying to taper off prednisone. Healthy adrenal glands should be capable of increasing their cortisol output nearly ten times above baseline levels during periods of extreme stress.

When it was determined that I had secondary adrenal insufficiency, my symptoms were considered. My duration of prednisone use (12 years), cumulative dose (massive) and most recent doses of prednisone were all considered. Combined with my symptoms, my endocrinologist "expected" that I would have secondary adrenal insufficiency.

The only question was how long it would take for my adrenals to recover. I would guess that it took 6 months on a low dose (3 mg or less) for some adrenal recovery to happen. I would say it took another year after prednisone was discontinued for my symptoms of adrenal insufficiency to be totally gone. My endocrinolgist said my symptoms of adrenal insufficiency are gone. Sometimes I'm not so sure but I haven't needed any prednisone for more than 5 years so I assume my cortisol levels are adequate.

I would agree with dadcue. The cortisol test was likely not accurate. I did not do the search but its recommended your under 3mg and 24 hr but preferably 48hr fasting of prednisone. Then some Dr's do not consider it reliable at that level because of other influences of cortisol.

A borderline ACTH level might result in "inadequate" levels of cortisol especially if something stressful happens.

What were the cortisol level test(s) that were ordered that came back "negative." I assume your cortisol level was within the normal range at the time you were tested. However, there really isn't a single result of a lab test for secondary adrenal insufficiency that can be interpreted as positive or negative. A cortisol level is reported as a numerical value in conjunction with an evaluation of many other factors to determine if you have adrenal insufficiency.

Cortisol levels are highly variable depending on many factors. There needs to be some sort of accounting for all of the factors that can influence a cortisol level. The time of day is one such factor so a morning cortisol level is usually only done as a "screening test" for secondary adrenal insufficiency. The result might only be called "probable" or "unlikely" but not with any degree of absolute certainty.

Being on 5 mg of prednisone is another factor that would make your cortisol level test "less reliable." I'm not sure that postponing your morning prednisone dose is enough time to get a reliable cortisol level lab test. My endocrinologist said I should not take any prednisone for at least 48 hours before my morning cortisol level blood draw. The longer I could be off prednisone the more reliable a cortisol level would be. Some doctors might say stopping prednisone for at least 48 hours or longer is necessary for an accurate cortisol level. Also, the way it was explained to me at least, a cortisol level can't be checked unless I was on 3 mg or less for a period of time.

The amount of stress prior to the lab test must also be considered along with other medications you may have taken prior to the lab. Cortisol levels are hard to interpret so it is good that your symptoms are being considered. Whether or not your adrenals are capable of responding to extreme stress is questionable for anyone trying to taper off prednisone. Healthy adrenal glands should be capable of increasing their cortisol output nearly ten times above baseline levels during periods of extreme stress.

When it was determined that I had secondary adrenal insufficiency, my symptoms were considered. My duration of prednisone use (12 years), cumulative dose (massive) and most recent doses of prednisone were all considered. Combined with my symptoms, my endocrinologist "expected" that I would have secondary adrenal insufficiency.

The only question was how long it would take for my adrenals to recover. I would guess that it took 6 months on a low dose (3 mg or less) for some adrenal recovery to happen. I would say it took another year after prednisone was discontinued for my symptoms of adrenal insufficiency to be totally gone. My endocrinolgist said my symptoms of adrenal insufficiency are gone. Sometimes I'm not so sure but I haven't needed any prednisone for more than 5 years so I assume my cortisol levels are adequate.

Thanks. I was aware of the shortcomings of the tests, and I suspect that my rheumatologist is also since he neither ordered them nor apparently bothered to connect with my endo. As I said, my endo is primarily concerned with the amount of prednisone I am on and said it would "guide the taper." I think my rheumatologist is going to monitor my taper pretty closely basing it on symptoms and CRP/ESR. I don't intend to raise any questions regarding other tests -- that will be entirely up to my rheumatologist. He has been great at communicating especially since the triage nurse got in the way and set off a series of false cardio alarms. Details aren't important but I am still putting out the fires on that one.