High Morning Cortisol

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Hello, everyone!

I know people with ME typically have low morning cortisol but mine was high. My ACTH was on the low end of normal but cortisol was abnormally high. Typically ACTH is high when cortisol is high. Because of this, I had to do a dexamethasone test overnight to test for Cushing’s Disease (adrenal tumor). The steroid lowers ACTH to see how the level of cortisol changes.
Has anyone else experienced anything like this? I’m wondering if the cortisol levels could be because of my ME and not Cushing’s. I’ve seen others discuss high cortisol in the morning but they didn’t mention ACTH levels and the discussions didn’t go anywhere.
Have any thoughts on this? Thanks!
 
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Gingergrrl

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My ACTH was on the low end of normal but cortisol was abnormally high. Typically ACTH is high when cortisol is high. Because of this, I had to do a dexamethasone test overnight to test for Cushing’s Disease (adrenal tumor). The steroid lowers ACTH to see how the level of cortisol changes.
I'd love to discuss this w/you further b/c I am currently dealing w/a similar (but slightly different) situation as you. My ACTH has literally been "undetectable" on labs for a full year (and it remains so) but now my morning Cortisol is within the low end of the "normal" range. My Cortisol has never been high but my endocrinologist has a new theory that I might have a benign adrenal tumor/adenoma, or adrenal hyperplasia, or adrenal Cushing's.

I'll be doing blood tests next week at a specialized endocrine lab and depending what we find, my next diagnostic test will most likely the "dexamethasone suppression test" or "Dex Test" that you do overnight that you just mentioned. When you did the Dex Test, what did your results show? Also, do you currently take Cortef (hydrocortisone) or any other steroids?

I've been taking Cortef (hydrocortisone) since mid-2015 and have a complex history with it including a period of 2+ years that I attempted to taper off it but was unsuccessful and had to re-start. My doctor (one year ago) thought that my ACTH was undetectable b/c of pituitary suppression or pituitary inflammation (which actually made a lot of sense to me). But I never did an MRI of the pituitary b/c I am allergic to contrast dye (plus it was too challenging to arrange during the COVID lockdown).

But now my doctor thinks it is likely not a pituitary issue and that my adrenals are independently producing Cortisol, even when my ACTH level is undetectable, although my Cortisol is still on the low end of normal on morning blood tests. I had thought that Cortisol was always high in Cushing's but he said that is not the case and that it can be in the normal range but it "never shuts off".

The strange thing is that I do not have any of the symptoms of Cushing's and I am the opposite and I start to get symptoms of an adrenal crisis without Cortef/HC (and I have to wear a Medic Alert bracelet to alert people that I would need hydrocortisone in an emergency).

So in the future, I'll most likely be doing the Dex Test, and possibly saliva & urine Cortisol tests, and possibly an MRI of my adrenals. The problem is that I can't safely stop taking Cortef (hydrocortisone) for the testing (b/c the saliva test is supposed to be done for 4-nights at midnight). I will be stopping it for approx 27-hours before I do the blood tests and I'm hoping that this will provide truly accurate results. In the past, I never take any Cortef (hydrocortisone) on the morning of the blood tests but I wondered if some of the Cortisol being measured is from the residual Cortef pill from the day before (especially since I am a very slow metabolizer).

Has anyone else experienced anything like this? I’m wondering if the cortisol levels could be because of my ME and not Cushing’s. I’ve seen others discuss high cortisol in the morning but they didn’t mention ACTH levels and the discussions didn’t go anywhere.
Have any thoughts on this? Thanks!
I don't have ME/CFS (all of my doctors thought that I did in 2013 & 2014) but I ultimately ended up w/several other autoimmune illnesses. I have never had high Cortisol at any point in my illness (including now). But your post really resonated for me b/c of your mention of low ACTH and your doctors having you do the Dex Test (which I had never even heard of prior to a few weeks ago)!

You are right that (in a "normal" person not taking any steroids) if someone has low ACTH, then they should also have low Cortisol. But in my case, I think my doctor is trying to understand why I literally have non-existent ACTH but still have some Cortisol (and whether this is from the hydrocortisone that I took the day before or if it is independently being produced by my adrenals going rogue) instead of it being triggered by the normal process of the HPA axis.

I debated creating a thread on PR about this but thought it might be too obscure or not make sense. I've been discussing this issue w/a few people by PM but then I got really busy and far behind w/replying to PM's (but I plan to catch up w/them again soon and feel badly about this)! Part of me doesn't want to deal w/this but if there is even the smallest chance that I have an adrenal tumor then I need to know! I also find endocrine issues to be the most confusing of everything to understand.
 
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I just got my dexamethasone suppression test results back. My cortisol was very low which indicates to me a normal result of the test. I don’t take any steroids so I’m not sure why there was an initial discrepancy between my ACTH and cortisol levels.
I did not enjoy that test, at all. In the first half hour after taking the dexamethasone, I felt great. My muscle pain faded away and my brain fog cleared significantly. But that faded and I became irritable, itchy, restless, and couldn’t sleep at all. I already struggle with insomnia and throwing all of that on top of it meant I didn’t get any sleep. I am very sensitive to medications so you may not have the same experience.
However, if your ACTH is already undetectable then I’m not sure why your doctor would order the suppression test. Dexamethasone lowers ACTH, which should normally lower cortisol. If your ACTH is already undetectable then I don’t think your test results would mean anything.
I’m not a doctor but it sound to me like a pituitary issue and not an adrenal one. Undetectable ACTH means your pituitary isn’t producing it. Normally, this would mean undetectable cortisol, as well. It sounds to me like the cortisol tests are detecting your Cortef and not endogenous cortisol, especially given that you are a slow metabolizer. I would ask if there would be a benefit for an brain MRI without contrast. If you are unable to stop taking Cortef before a cortisol test, you might ask your doctor about temporarily increasing your dose of Cortef (if you are able) before a cortisol test to see if your cortisol level increases while ACTH remains undetectable. That could indicate it’s the Cortef showing up on your cortisol tests.
 

Gingergrrl

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Thank you so much @Springbok1988 and @Learner1 for your replies! I have a question in case either of you know the answer:

Do you know what is the "half-life" for Cortef (hydrocortisone)? I realize that it will vary in people with a fast vs. slow metabolism but I was just wondering, in general, what is considered to be the "normal" half-life for hydrocortisone?

I've been Googling it (and found a variety of answers & charts) but am still unclear. The actual concept of half-life actually confuses me no matter how much I research it! Many charts seem to say that the half-life for (oral) hydrocortisone is 8-12 hours. I do not know if this is correct, but if it is, I'm trying to figure out how many hours it should take to be completely removed from the body and not appear in a blood test.

Thank you to anyone who knows and I am going to reply to the rest next.
 
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Gingergrrl

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I just got my dexamethasone suppression test results back. My cortisol was very low which indicates to me a normal result of the test. I don’t take any steroids so I’m not sure why there was an initial discrepancy between my ACTH and cortisol levels.
Thank you and I am glad to hear that your Dex Test came back normal. And your result should truly be considered accurate since you do not take any steroids. I would think this means (in your case) that your adrenals are not producing Cortisol independently of the HPA axis and it rules out an adrenal tumor or adrenal Cushing's. Is this how your doctor interpreted your results?

I did not enjoy that test, at all. In the first half hour after taking the dexamethasone, I felt great. My muscle pain faded away and my brain fog cleared significantly. But that faded and I became irritable, itchy, restless, and couldn’t sleep at all. I already struggle with insomnia and throwing all of that on top of it meant I didn’t get any sleep. I am very sensitive to medications so you may not have the same experience.
I had an absolutely horrific experience the two instances in my life that I took dexamethasone in 2016. I honestly would never want to take it again although I'd consider it for this test if both my doctors feel that I need to do it. I am not surprised at all that you did not get any sleep. Did it also cause you to have severe tachycardia, agitation, confusion, or other abnormal neurological symptoms?

However, if your ACTH is already undetectable then I’m not sure why your doctor would order the suppression test. Dexamethasone lowers ACTH, which should normally lower cortisol. If your ACTH is already undetectable then I don’t think your test results would mean anything.
This is actually my thoughts exactly! Although there must be a way that Dex suppresses ACTH that is different from how Cortef/HC suppresses it (or it must affect Cortisol production in some other way)? Otherwise, I also do not understand what new info this test would provide? And I would not be taking any hydrocortisone during this test, only the Dex, in case that is relevant? But I am honestly hoping that I will not need to do it at all!

I’m not a doctor but it sound to me like a pituitary issue and not an adrenal one. Undetectable ACTH means your pituitary isn’t producing it. Normally, this would mean undetectable cortisol, as well. It sounds to me like the cortisol tests are detecting your Cortef and not endogenous cortisol, especially given that you are a slow metabolizer.
That was my feeling, too. I feel that it is possible that the Cortef/HC that I am taking (even though it is a low dose) has suppressed my pituitary and even when I was finally completely off the Cortef (following a 2+ year taper), my pituitary was not able to kick back into gear and start creating ACTH on it's own. I have heard of cases where this process (with the pituitary and the HPA axis) can take months to start producing ACTH again.

I wish that I could have waited it out (to see if this was the case for me) but I started to have the signs of an adrenal crisis and both my ACTH & Cortisol were basically undetectable at that time (although my Cortisol was not completely undetectable, just VERY low). I also was barely able to function and it made me very ill so my doctor said that I had to go back onto the Cortef (HC) which I did. This was approximately one year ago.

I suspect that now my pituitary is still completely suppressed (probably from the HC plus potential inflammation or autoimmunity) so it is not creating ACTH and that the Cortisol that is showing up on the blood test is from the Cortef pill and is not endogenous Cortisol b/c I am a slow metabolizer (exactly like you said). This is what makes the most sense to me vs. that I have an adrenal tumor or adrenal Cushing's (plus I do not have the symptoms that would match with that).

I would ask if there would be a benefit for an brain MRI without contrast.
My understanding is that there really would not be a benefit without contrast (unless I had a brain tumor but neither of my doctors think that)! To see pituitary inflammation, you would need contrast dye, and it is possible that even WITH contrast, the inflammation would be so small that you would not see it. Also my endocrinologist is now focused on my adrenals vs. pituitary (but he said that this is just a theory and we'd need to test it out to confirm it).

I would actually love to be tested for autoantibodies that attack the pituitary but there is no commercial test for this.

If you are unable to stop taking Cortef before a cortisol test, you might ask your doctor about temporarily increasing your dose of Cortef (if you are able) before a cortisol test to see if your cortisol level increases while ACTH remains undetectable. That could indicate it’s the Cortef showing up on your cortisol tests.
I am able to stop it for 24-hours but not much longer than that (and I will not feel well during that period). What you just recommended makes sense but in my case, it doesn't turn out to be true. We monitored my ACTH & Cortisol every 3-4 months during the 2+ years that I was doing the taper off Cortef (HC) through the present and I created a chart for my doctors with all of the lab results and they don't correlate in the way that you described (meaning that me taking a higher dose of Cortef/HC does not equal a higher Cortisol level on a morning blood test).

On University of Michigan's website:

"A problem with the adrenal glands or pituitary gland. A high level of ACTH and a low level of cortisol (or low ACTH and high cortisol levels) could be caused by a problem with the adrenal glands. Low levels of ACTH and cortisol could be caused by a problem with the pituitary gland."
This also makes total sense to me. In my case, I have a VERY low (undetectable) ACTH level and a lowish (but in the normal range) Cortisol level. To me this would fit with a pituitary problem but my endocrinologist is now thinking that since the Cortisol is not undetectable (and it is within the "normal" range), that it is an adrenal problem.
 
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I also had high cortisol when I have tested years ago, I remember that I have done the dexamethasone test as well...and ACTH testing too...but the endocrinologist could not find anything suspect like Cushing ar Addison disease, etc.
 
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Hello, everyone!

I know people with ME typically have low morning cortisol but mine was high. My ACTH was on the low end of normal but cortisol was abnormally high. Typically ACTH is high when cortisol is high. Because of this, I had to do a dexamethasone test overnight to test for Cushing’s Disease (adrenal tumor). The steroid lowers ACTH to see how the level of cortisol changes.
Has anyone else experienced anything like this? I’m wondering if the cortisol levels could be because of my ME and not Cushing’s. I’ve seen others discuss high cortisol in the morning but they didn’t mention ACTH levels and the discussions didn’t go anywhere.
Have any thoughts on this? Thanks!
Just a question: low = within reference range or below = too low?
 

Gingergrrl

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I remember that I have done the dexamethasone test as well...
Do you remember how you tolerated the Dexamethasone and test at the time? Also, were you taking hydrocortisone or any other steroids at the time that you did the test?

Just a question: low = within reference range or below = too low?
I think you were only asking Springbok1988 (and not me :)) but just in case it is useful, my ACTH on blood tests is below the range where it is flagged as too low and it can only be labeled as "undetectable". At Quest (lab) in the US, anything < 5 for ACTH is labeled as undetectable.

But I assume (or am hoping!) that at the more specialized endocrine lab where I am doing blood tests next week, that they can get a true measure if my ACTH is truly zero or if it is between 1-4 (which Quest Lab cannot quantify on their testing).
 
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Do you remember how you tolerated the Dexamethasone and test at the time? Also, were you taking hydrocortisone or any other steroids at the time that you did the test?
Hey! It was a long time ago, somewhere in 2015 I guess, I still have the tests though! From what I remember, I didn't have any issues with dexamethasone, and I hadn't been taking any other steroids at that time...
 

Gingergrrl

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Hey! It was a long time ago, somewhere in 2015 I guess, I still have the tests though! From what I remember, I didn't have any issues with dexamethasone, and I hadn't been taking any other steroids at that time...
Thank you and it is good to hear that you tolerated the test well (from what you remember)! I had to postpone the blood-work that I was going to do today for 2-weeks and depending on the results, it will determine if I will be doing the Dex Test in the future. So I am temporarily in limbo :headslap:
 
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Thank you and it is good to hear that you tolerated the test well (from what you remember)! I had to postpone the blood-work that I was going to do today for 2-weeks and depending on the results, it will determine if I will be doing the Dex Test in the future. So I am temporarily in limbo :headslap:
All the best to you dear, I hope you will sort things out! Let me know if I can be of any help to you!
 

Learner1

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I had an absolutely horrific experience the two instances in my life that I took dexamethasone in 2016. I honestly would never want to take it again although I'd consider it for this test if both my doctors feel that I need to do it.
I learned that all steroids contain milk products which I am allergic to, and which will cause violent reactions. Having the dexamethasone compounded has made it a useful drug for me.
I also had high cortisol when I have tested years ago, I remember that I have done the dexamethasone test as well...and ACTH testing too...but the endocrinologist could not find anything suspect like Cushing ar Addison disease, etc.
It's not necessary to have full-blown Cushing's or Addison's to be able to have a problem. I did an ACTH Stim test, which didn't show that I had full blown Addison's, but it did show that I had a problem And I've been on hydrocortisone ever since, though I've been able to drop my dose over time as I've gotten better.