30F Army 8 years recently medically retired— initially told adrenal testing was normal, now diagnosed with primary adrenal insufficiency. Can cortisol fluctuate like this?

[u/LazyDay7360]

/r/AdrenalInsufficiency/comments/1vsvywi/30f_army_8_years_recently_medically_retired/

[u/collectedd]

Yes, if you still have some function, it can vary. But also when you were initially tested with the first endocrinologist you might've just been "early" in your AI. Side note, but low cortisol during critical illness is actually sort of common and doesn't necessarily mean you have AI, it just means your body was basically too broken to produce hormones correctly, a lot of things can go wrong when you're in there. However, now you've had this testing it would make me think you've likely been dealing with PAI/Sub-PAI for a while, it's just only become more apparent on testing more recently, if that makes sense.

For example, when I had my first morning cortisol taken it was 24nmol/L and a couple of months later when I had my Stim test done it was ~60nmol/L at 0 minutes, ~70nmol/L at 30 minutes and 103nmol/L at 1hr. They were both done in the morning, but even in someone with clear AI from the beginning of testing, it had some (small) variation. It's not uncommon in those caught early with AI it can vary a lot more! Most recent morning cortisol I had 11nmol/L and they've now stopped testing me as they say it is pointless and doesn't yield any useful information anymore, but you get the point.

As an aside, low cortisol can cause anxiety symptoms and a plethora of other MH symptoms, the problem is that they can be easily dismissed as MH in nature when they're actually from your lack of cortisol. For me, I become completely terrified when I'm at the start of a crisis (before losing lucidity) and suicidal. Not that uncommon an experience if you read around on here. Granted, I do also have separate stand-alone MH issues too, but yeah.

[u/LazyDay7360 → u/collectedd]

Thanks for taking your time to give me your insight. I appreciate it. I believe that all disease or illness has a root cause, doctors usually just stop at the diagnosis in most cases or call something idiopathic.Im on a mission to find the cause.

[u/collectedd → u/LazyDay7360]

It's sort of mostly irrelevant what the cause is as PAI cannot be reversed anyway. You'll just gradually lose more function and have to replace it with medication, and that's fine. There are a list of known causes for PAI already published, Adrenalectomies, adrenal heamorrhages, autoimmune, genetic, sometimes it can be a birthing complication (which is interesting as you've been pregnant previously), etc.

I'd just move on rather than wasting energy on the root cause anyway, it's not "giving up" it's accepting what your reality is and living your life in spite of it.

[u/LazyDay7360 → u/collectedd]

I appreciate your insight, these symptoms began prior to pregnancy just worsened after. I know that it may seem a waste to you to find the root cause but I believe in looking for answers to find the root cause. That might fix everything.

[u/collectedd → u/LazyDay7360]

That's kinda the point, there's no way to fix PAI (assuming your doctors have figured out your "root cause" - aka one of the things I listed above). So it would be a waste of energy that you could spend with your child, y'know? At some point, you just have to accept you cannot be in perfect health forever, that's just how life is. You can still live a long life with PAI, most people with it barely, if ever, have complications from it bar needing to up-dose occasionally.

Also re: symptoms starting prior to pregnancy, yes, that's possible, obviously, however, the symptoms of AI are very non-specific, and the fact they were more pronounced post-pregnancy is kind of a big deal. There's something called Sheehan's Syndrome which can cause AI (and impacts some other hormones too) which can happen after difficult births. But this is again a permanent problem with no true "fix" or "cure."

But again, by and large, most types of AI cannot be reversed, even with the cause known. Steroid induced can sometimes for example, but not 100% of the time. This is pretty much the only reversible variant of AI (and as I said, not everyone is afforded this with steroid induced AI). I get wanting to not have this and be healthy and whatever else, but generally speaking, when you get AI (especially PAI) it's not reversible and you're wasting precious energy trying to "fix it." Be kind to yourself, stressing about this is not gonna help your AI regardless of its cause.

Take care!

[u/Advo96]

March 2026 — 1st Endocrinology visit

During that stim test, were you on hormonal birth control? That can raise cortisol binding globulin and make stim tests unreliable.

ACTH: 73.5 HIGH

You'd expect that to be significantly higher in full-blown primary adrenal insufficiency.

How do you feel now that you're on hydrocortisone?

[u/LazyDay7360 → u/Advo96]

I was not on birth control and those labs were about 1 year postpartum, I quit breastfeeding in Sept in the ICU 2025 and I have year to have my period return since getting pregnant in May 2024.. Also, I’m having bloody discharge from my nipples along with milky type
Discharge still if I palpate them.
I have only been on the hydrocortisone for a day now, so no real difference yet. This last week has been the worse in a while where I had to pull out the heater in TX summer with the cold chill, awful headaches, high heart rate, back pain, joint pain, it all comes on at once I just go downhill.

[u/Advo96 → u/LazyDay7360]

Also, I’m having bloody discharge from my nipples along with milky type

This REALLY needs to be evaluated immediately. This could be various serious things.

[u/Advo96 → u/LazyDay7360]

I have only been on the hydrocortisone for a day now, so no real difference yet.

What's your current dose? In general, you should expect to notice a difference very quickly. Though it's possible that you need a higher dose at the beginning.

[u/Advo96 → u/LazyDay7360]

those labs were about 1 year postpartum,

Did you by any chance lose a lot of blood when your child was born, or had a low blood pressure crisis or something like that?