ACTH Levels

[3WheelWonder]

Hello, All!

Does any of our group have high/low/regular levels? If so, what are you taking or not taking and, most importantly, how do you feel, energy level etc?

Last one I had was at 151-don't take anything, good energy..

[bluejadedwho]

levels of what specifically? Can you provide more details please

[3WheelWonder in reply to bluejadedwho]

Sure. testing.com/tests/acth-stim...

[bluejadedwho in reply to 3WheelWonder]

So that’s for the original diagnosis of adrenal insufficiency. Are you just had that stage where you are being diagnosed?

[3WheelWonder in reply to bluejadedwho]

no, I was diagnosed in 2001. The levels have gone up and down over time.

[bluejadedwho]

But that’s normally was just tested for diagnosing. As you go along, it’s important to test for sodium and potassium so you can see if you need to change your Florinef dose, and if you’re fortunate enough am/pm, cortisol levels.

[Tim76]

my last ACTH level when tested in October of last year was 264. It’s my understanding with Addison’s, these levels are almost always high because it’s a measurement of how much the pituitary gland is telling the adrenal glands to produce cortisol. Since our adrenal glands can’t produce cortisol, the level is normally high because it’s constantly telling another part of the body to do something it can’t.

What’s more important is the actual cortisol test just to make sure the steroid supplement we take is providing a sufficient amount of cortisol.

Hope this helps.

[deengo]

Mine has been high. I'd ont recall the number but it was over 200 last time and that was a few years ago. I don't have addisons, don't take any meds for it and my last morning cortisol test was in the high side of normal. Also I've only got one adrenogland. My endocrinologist couldn't explain it or my neurologist. I think its been over 4 or 5 years since I've had it tested.

[deengo]

This is a post i posted on fb in 2020 so my last yestvwas about 3 years ago... My ACTH levels keep going up. It was 214 6 months ago and now as of last week is 310. My morning cortisol is a little high 21.2 out of a 6.2-19.4 range.

Anyone have knowledge or experience with this?

I've been to 2 endocrinologist and they dont have answers.

[3WheelWonder in reply to deengo]

well, you keep pushing those weights and staying healthy…big factor, Mate!

[deengo in reply to 3WheelWonder]

I hope so I'd like to think its doing more then just making me sore the next day haha

[bluejadedwho]

I have never had an ACTH test again since I was 16 when I was diagnosed and I’m 41 now

[3WheelWonder in reply to bluejadedwho]

well, whatever you’re doing is working, so keep doing it😊

[bluejadedwho]

😊 surprisingly, I haven’t had an addisonian crisis really ever, except for when I was diagnosed. I do other things like take vitamin C, and B vitamins to help support things. I mean I’m not perfect. I do drink sometimes, which is not great as it’s a stimulant of the adrenal glands. But I try my best.

[3WheelWonder in reply to bluejadedwho]

keep at it!

[Djp1989]

In 2014 I had my ACTH levels checked around a year after being diagnosed. My levels were through the roof. 878 pg/mL. Did not feel sick though. Endo had me on hydrocortisone and fludrocortisone immediately. Started with 15mg hydrocortisone. After years slowly increased to 20mg. Noticed no positive change. Few months ago I cut back 5mg... Taking 15mg hydrocortisone and no fludrocortisone. Got my levels checked and they're the best they've ever been ACTH was 150 pg/mL. At the end of the day how your bodies feels is really most important.

Also, for years I had my levels checked while taking 17.5/20mg hydrocortisone and they were always overs 300.

[vinsanity1525]

It has been about 13 years since I learned that I had Addison's disease. I am now 27 years old. My ACTH level was always above 2000. The last time I had it measured, it was 3200.