Jump to content

Cortisol levels


DizzyGirls

Recommended Posts

Does anyone keep track of their cortisol levels on a regular basis, maybe a couple of times a year?  My daughter just had one and it was 2.1.  Her doctor did a random one to see what it was at the moment (it was noon).   I know your cortisol levels shouldn't be 2.1 at noon.  Maybe later in the night....   She's been very tired and it's been hard to balance her bp and hr.  Any thoughts?

Link to comment
Share on other sites

I was told by my endocrinologist that cortisol levels bounce around all day depending on many factors.  I had done a saliva test for cortisol at the time and it indicated my cortisol was high.  There are specific ways to test for properly functioning cortisol response--I am not sure of the details.  I would talk to her doctor or a specialist to get more understanding.

Link to comment
Share on other sites

Cortisol is tricky. My doc said the test needs to be done at 8 am and can't be done if you have been on a corticosteroid in the last few months. I have always wanted my cortisol tested at noon, 4, 8, midnight and 2 am because I think mine are off, but this isn't a test that is done... at least that is my understanding. I bet if we all got that test there would be eerie similarities. 

I had a cortisol stimulation test that was normal. I think the system works, just the control for it is broken in me.

Link to comment
Share on other sites

I have had several cortisol level tests with samples taken 4 times a day. My pattern was the reverse of normal—very low in the morning and increasing to its highest level at night. This corresponds with it taking several hours in the morning to “wake up” and having a very hard time getting to sleep at night. Apparently other Dysautonomia pat have a similar reverse cortisol curve during the day.

Link to comment
Share on other sites

Yes, I would love for them to take her levels at 8, 12, 4, 8, midnight, and 2 am also!  I do think hers would be "off".  My mom's pituitary doesn't work well at all.  Her ACTH test came back proving that.  I do think that dysautonomia people would probably have very similiarities, too!  This is all very interesting.  Her hematologist sent a referral for her to see an endocrinologist that she likes.  Hopefully he'll be better than the last one my daughter saw.  She was awful.  I think there might be a correlation to her cortisol and her pain levels.  Maybe even her norepinephrine levels (is that the same thing?).  She's never had any of these tested and I'm just wondering if it would be beneficial.  I do think though, that due to her pain and sleep cycles, it might throw some of the testing off, and that can't be helped.  Hmmm, always something.

Link to comment
Share on other sites

About five years ago, my 8 a.m. cortisol was trending above range a little, with a high-normal ACTH.  Starting two years ago, it started trending down.  In the beginning of last year, it was at the bottom of the normal range (around 5) with an ACTH sitting inappropriately low-normal (around 11), and my new endo did a Cortrosyn stimulation test in September.  It came back 0.2 points BELOW the cut-off of normal stimulation(18 is the cut-off), but he said I was just fine and it was nothing to worry about.  (I beg to differ).  From my research, I think I have a pituitary that is not working correctly, so it isn't signalling the adrenal to put out cortisol.  That is Secondary Adrenal Insufficiency.   When my cortisol began getting lower those two years ago, I also got what I call a new case of having CFS.  I used to have POTS but plenty of energy to want to do things but couldn't because of POTS.  Now, my POTS is actually better, but I have no energy or drive to do anything.

Link to comment
Share on other sites

@Sue1234 - my mom's pituitary doesn't work either.  Fortunately, her doctor recognized it, but there wasn't anything she could do to help her.  I think my daughter might need a 24 hour cortisol test (she hates those), and maybe an ACTH test.  Her rheumatologist is also running some labs, too, just to see where those numbers are at.

So sorry your doctor won't do anything. So frustrating!

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

×
×
  • Create New...