very high morning cortisol

[xebex]

in 2018 i had a very hight morning cortisol test - i then took the dextro pill and had low cortisol next day so ruled out cushings.

today i had another am cortisol test and its vey high again (not sure its been this high for 5 years can't have been cos in general ive been fairly stable)

i have been very very sick recently - literally damaged my vagus nerve with a tens machine and am under constant cripling fight or flight

i thought ME/CFSers typically had low cortisol so am confused as to what's going on - maybe i just have high cortisol due to vagus nerve dmage but then why was it so high 5 years ago - and my doc completely ignored it???

thanks

 

[Judee]

I first was tested in my late 20's I think it was for 4x/day cortisol levels. That time, my ME/CFS cortisol readings throughout the day were high. They still followed the same pattern as a normal person's levels but my graph was about a pinky fingers width above theirs all through the day.

Anyway, about 7 years back, I bought and did the test again. My levels by then had mostly normalized with am cortisol still a little bit higher than normal and 3rd reading of the day being slightly under that graph line. The other two readings matched normal.

IDK. ??

Sorry about the vagus nerve damage and the constant fight and flight. That has to be rough.

 

[xebex]

@Judee thanks yea I did a saliva one too now I come to think of it and that read normal. But that was back when I was mild I’m now severe.

Panicking because I don’t want and can’t cope worth a load more test when I know I don’t have cushings. Doc is thinking I could have an adrenal or pituitary tumor but I just thin it’s my ME
gone nuts. No idea how I’m sposed to get to hospital to get all this testéd and I have to wait a week to see what doc says about result.

And yeah doesn’t help that my vagus nerve has also gone nuts - it has been a livinfnhell but feel it has calmed a little recently thank goodness.

 

[Springbok1988]

A had my AM cortisol tested in 2021 and it was high. The endocrinologist had me do the dexamethasone suppression test which came back normal. He just said I was stressed and wrote it off. But he also checked my ACTH levels which were on the low side of normal. It’s my understanding that stress causes high ACTH which stimulates a high amount of cortisol so that seemed odd to be. Never saw that doctor again. I still don’t have any answers.

 

[xebex]

A had my AM cortisol tested in 2021 and it was high. The endocrinologist had me do the dexamethasone suppression test which came back normal. He just said I was stressed and wrote it off. But he also checked my ACTH levels which were on the low side of normal. It’s my understanding that stress causes high ACTH which stimulates a high amount of cortisol so that seemed odd to be. Never saw that doctor again. I still don’t have any answers.

Thanks @Springbok1988 yes I waiting for the ACTH result to come back I really hope doc did it properly as I managed to persuade him to come to my home to take blood but the result isn’t showing up yet up on the health app.

i wonder if my old doc just wrote the high cortisol off as stress aswell though I wasn’t very stressed back then but now I’m super stressed so I can understand why the reading is high i guess.

 

[Zebra]

Doc is thinking I could have an adrenal or pituitary tumor but I just thin it’s my ME
gone nuts.

I encourage you to let your doctor look for such possibilities before chalking it up to ME. If your doctor finds something treatable, maybe you could feel a bit better

I have high AM Cortisol as well. First showed up in 2017. At that time, Cushing's disease was ruled out for me. More recently, my AM Cortisol came back high in 2021 and 2022.

I plan on revisiting this topic with my PCP this Spring. I will add more to this thread tomorrow to explain why. Too pooped tonight!

 

[Gingergrrl]

@xebex I copied a chart in case it is helpful and it shows potential tumors with different combinations of high/low ACTH & Cortisol (separate from Cushing's or Addisons).

I went through this for quite a while (in 2020 and 2021) w/my endocrinologist trying to figure out if I might have a benign tumor b/c my lab results were so off. In my case, both my ACTH & Cortisol (AM blood draws) were way below the normal range. I was taking hydrocortisone (Cortef) at the time but would withhold it for 24 hours before the blood draw.

Ultimately, I did not do an MRI of the pituitary gland b/c I am allergic to contrast dye (and this MRI requires contrast dye to show anything useful). I have attempted to taper off Cortef but was never able to do so (and have horrible side effects even withholding it for 24 hrs for blood-work). So in my case, I have stayed on the Cortef and my ACTH & Cortisol levels ultimately returned to normal on their own.

 

[xebex]

@Gingergrrl thanks very much

Ive not got my ACTH results back yet fingers crossed no tumor eeek!

 

[Gingergrrl]

@Gingergrrl thanks very much. Ive not got my ACTH results back yet fingers crossed no tumor eeek!

Good luck and let me know what happens. I want to clarify that even though that chart shows potential ACTH & Cortisol results that *could* be a tumor, there are also other possible explanations so I hope that I did not scare you with that chart (like I initially scared myself last year )!

Edited to Add: I'm sorry if I missed it but do you currently take any steroid?

 

[xebex]

@Gingergrrl thanks, No I’m not on any steroids.