Backstory:

30F. I was generally healthy before all of this. I developed severe chronic daily headaches/head pressure, nausea, brain fog, fatigue, anxiety, waking up feeling doomed. a few years ago that became disabling and eventually required opioids because nothing else adequately controlled them.
POSTPARTUM I had a baby in February 2025. It wasn’t until roughly 6 months postpartum that the more severe systemic episodes really started. Before anyone suspected an endocrine problem, I repeatedly went to doctors during these episodes and was told it was anxiety and prescribed benzodiazepines. They helped somewhat, but the episodes continued.

Typical episode:

lower-back pain → severe full-body aches → head pain becomes so severe that talking/moving hurts → sometimes chest pain and significant tachycardia → during the worst attacks, intense cold/chills where I cannot get warm for 1–2 hours.

Labs/timeline

Sept 2025 — ICU/severe illness
-Cortisol: 1 µg/dL
-ACTH: ~15.5 pg/mL
-Treated for severe sepsis/septic shock, but no clear infectious source was found.

Oct 2025: cortisol 7.72, tested my own at LabCorp

March 2026 — 1st Endocrinology visit
250-mcg cosyntropin stimulation test:
ACTH: 73.5 HIGH
DHEA-S: 37.4 LOW (98.8–340)
Cortisol during stimulation: 15.4 → 17.9
Sodium: 142
Endocrinology considered this a normal cortisol response despite the elevated ACTH/low DHEA-S and did not diagnose adrenal insufficiency.

August 2026 — second endocrinologist
AM cortisol: 2.7 µg/dL — LOW
ACTH: 76.1 pg/mL — HIGH
DHEA-S: 33.5 µg/dL — LOW
Aldosterone: 2.5 ng/dL — LOW
Renin activity: 0.463 ng/mL/hr
Aldosterone/Renin ratio: 5.4
24-hour urine free cortisol: 4.1
Endocrinologist’s diagnosis: Primary adrenal insufficiency
Started hydrocortisone + DHEA and ordered adrenal imaging.

Can primary adrenal insufficiency fluctuate, especially early on, where cortisol can be extremely low at one point but normal/near-normal at another?
Has anyone passed or borderline-passed a cosyntropin test and later been diagnosed with primary AI?
And would ACTH 73.5 + very low DHEA-S have made you question adrenal function even with cortisol reaching 17.9?
Mostly interested in hearing from people who had inconsistent labs or were initially told their symptoms were anxiety before eventually being diagnosed.

Hello all 👋,

I need advise as I was told by consultant around 10 months ago I have adrenal insufficiency. So since then I was fine and even told how to use the injection in crisis just in case it comes to that. Well I was fine since then but would get pains in abdo area like for 20 mins I would die but fade away. But today after having my first crisis is it normal to still have abdo pains ? Shooting pain coming in waves ?

🙂

Had total hip replacement 2 weeks ago. 49F.

Was only just diagnosed with secondary adrenal Insufficiency in March, so this is new. I believe it's opioid induced, as I don't have any other risk factors or signs for other causes, and I've been on pain management awhile (for the hip).

My endo did give the surgery team recommendations for extra IV steroids in pre-op, and they kept me overnight for monitoring. I seemed to do fine. But the past few days I feel stalled out in my recovery from surgery. I'm having a lot of pain, which could be from the opioid use/dependency or from previous surgeries I've had there that left scar 8tissue. Or both.

Should I call my endo today to ask for more recommendations? Right now I'm prescribed 10mg hydrocortisone in a.m. and 5 mg mid-day. I suspect that needs to go higher though, as my last blood test showed my cortisol hadn't budged since initial diagnosis. So, it's possible my baseline was already low. Since surgery I've updosed to 10mg/10mg for the stress.

I'm not sleeping much at night (2 hrs at most, then up awhile due to pain and dozing til morning, naps during day). I'm still very swollen and sore. Is there value in calling my endo to see what he'd recommend? They didn't seem too concerned when I called before my surgery, but I'm tired of feeling so tired and sluggish. And the pain. Blah. Hard to tell how much is from pain and how much may be due to the SAI.

Im struggling with one sided sinus pain headaches and a nostril that is struggling to breathe and really bad fatigue. Ive been on a lower dose of hydrocortisone 12.5mg and was wondering if i should try going up to help. I got really hot to touch yesterday but had a normal temp? so i updosed to 30mg.

Its been 7 weeks ive had these issues and my gp is hard to deal with as they said a steroid inhaler is the only thing they can do to help. I explained that i have secondary adrenal insufficiency and how i dont know how that will work. Said she cant prescribe inhalers without speaking to my endocrinologist about the date of my day curve which its been a month and i haven’t had a date come through after speaking to them at the hospital.

Funny thing is i went into the pharmacy and asked for something and they just threw the inhaler at me which i used and ceased using after learning it might not be best with my condition. This was before i had a chat with that particular GP. I had already been moaning on the phone that i was struggling to breathe with another GP which i since changed from. (Wouldn’t even give me my meds on repeat)

Any advice would be appreciated and i hope you are all doing okay!!

Anyone been on HC and went to Prednisone? How was the transition? Did you feel better?

Constant as day goes on sailboat feeling. Tired of it.

Read a few who did and felt better and lost weight. .

Any response will be appreciated!

My husband has adrenal insufficiency after being prescribed a high dose of methylprednisone for sarcoidosis. He is allergic to prednisone. He currently takes 8mg a day.

I have a hard time telling when he is having issues. He has always had sleep issues but now when he doesn’t sleep it seems worse.

* I think* when he falls into adrenal insufficiency he gets cold first, then nauseous. Does this happen to anyone else with the coldness?

What would you tell your spouse if you could about your case? What should I have on hand other than steroids?

I am currently under evaluation for adrenal insufficiency most likely caused by prednisone but I do have a substantial autoimmune family history so addisons is on the differential list.

I switched just over two weeks ago from prednisone 5 mg to hydrocortisone 15/5 mg. My endocrinologist doesn’t want to run any tests until I get to 10 mg for two weeks. I feel pretty awful now and mentally preparing myself to white knuckle it. Honestly I can manage the body aches, nausea, low appetite…but the mood changes are hard to live with. The worst is crying spells (worse in evening), but also struggling with feeling overwhelmed and agitated but there is substantial fluctuation.

I am seeing my pcp next week to talk about mental health…do antidepressants help? I am concerned that they won’t if the mood changes are inflammatory (I have RA) or adrenal insufficiency. Any advice on management? I do see a therapist and that helps. I have scaled back on exercise too as I feel intense activity worsens it and caused diarrhea which probably further worsens it. Ugh.

I had my adrenal glands removed in 2017 when I was 23 to cure Cushing’s disease (pituitary tumour). I’m kinda always flawed when I speak to other medical professionals outside of endocrinology that they don’t seem to know how not having adrenal glands/producing cortisol affects me.

For example, I’m have some scarring removed on my fallopian tubes which will be laparoscopic surgery. Every person I’ve seen I’ve told hey you know I don’t have adrenal glands right? But every person still tells me ‘this is a day surgery’ so I’m pretty worried about how my steroid replacement is going to be managed after the surgery if I’m due to be discharged the same day.

I am not asking for medical advice, I’m just wondering how can this be missed? Low key freaking out, very grateful for the NHS but pretty fed up of medical secretaries gate keeping me from trying to tell doctors important information like I’m a hypochondriac

I really feel when you have Addisons it’s so important to be clued up on the condition so you can always advocate for yourself with other health professionals - but I do feel that it shouldn’t have to be this way for us.

I recently tried to reduce my HC from 17.5 to 15 in an effort to improve my sleep. When I take 17.5 I wake up every night and I can’t get back to sleep so I thought I’d go to 15 but I realized after several days that this gave me severe low back pain which is unbearable and I’ve had to go back up to 17.5.

I’ve read I’ve read here that you have to taper slowly. A question for the group is what do you do? just put up with that pain until it goes away or is there some trick that you can use?

Hello I've been told by my endocrinologist that she thinks I have this. She instructed me to stop my thc gummies to make sure they weren't the problem I'm second week in without my gummies and let me tell you I am not sleeping well at all. I've been given Xanax for the time I will be off my gummies which isn't really helping much only occasionally. My question is I've missed some work because of this being awake all night and I'm also dealing with hashimotos and didn't know if anyone here has gotten any kind of work place special accommodations for this? Thank you in advance for your advice. When she did try me on steroids I felt like myself again. I'm so desperate to feel better thanks again

Title basically if you could share more or DM directly that would be appreciated!

Thanks!

Hey all,

I have been diagnosed SAI for approx 8 years, on 25mg HC and Fludro and I'm in the UK.

I have been having something happen a lot more frequently recently - waking up shaking quite badly. Along with weakness, slightly slurring, a bit 'fog brained', hot and other lovely things we tend to experience. The shaking/trembling is the worst symptom.

It happened again this morning. I have taken an extra 10mg, made sure to eat and had a coffee so it's starting to settle. I do have a few of the stressors going on - upset stomach for a few days, it's hot in my flat and ac unit got turned off, terrible sleep for the past few days and something that is causing huge anxiety. I don't always have all of the same things going on for it to happen but there is one thing recently that always happens.

Very vivid, very stressful dreams.

For at least the last year I always/nearly always have one before one of these mornings. I have them other times and I don't have this issue when I wake up. Has anyone else experienced this? Like I said - it's become much more frequent but I've had vivid dreams since being diagnosed with PTSD nearly twenty years ago. How many have these horrible waken ups and how often? What kinds of things do you do to settle it? Guess I'm hoping to know I'm not alone in this and looking for any tips/suggestions etc.

Thanks for reading. Hope it makes sense, brain is still slow!

so ive had SAI for 4-5 months now caused by opioids initial dose 20/5/5 HC

im kinda confused why im not dead to be fair i also have tried stopping my steroids for a couple days felt faint about day 4ish so i took my meds. i was on 12.5mg hydrocorisone when i tried this, reason i tapered down is because i felt like i was living underwater on that dose and kept missing doses and was fine yet when i was on higher doses, i could not think, had memory issues and extreme tiredness. i did try up dosing for certain things exercise, heat, etc. I just ended up suffering your textbook low/high cortisol symptoms which i was told by my doctor are alike. i tapered to 15mg to 12.5mg now i am at 10mg.

anyways where do i go from here with my endo and healthcare?

i imagine my endo is gonna flip when they hear im on 10mg but what can they do im not dead and have been more active than ever since diagnosis, ive told my gp but they didnt really care. Thing is i didnt know opioids can supress the HPA axis and was diagnosed after a blood test. After the brief "have you stopped or been on any steroids" i was sent on my way with a hydrocortisone script. its been months and ive been diagnosed with secondary AI, my ACTH was 5 with my cortisol being 28 at 9am i didnt have any "Stim test or any another test besides one cortisol and after extended hormones which seemed a lot better once i stopped taking oxycodone which is the opioid i was taking.

heres the tricky part, the oxycodone is not prescribed (good luck in the uk unless death is coming on paper) and i had about 50mg in my system during the test which i have read can cause supress the axis never mind daily before the test.

I also have been feeling really good on a morning until i take my HC?

Should i get another morning cortisol? no painkillers?

and how often do you guys see your endos?

I'm super newly diagnosed with secondary adrenal insufficiency likely stemming from a pituitary microadenoma which was found a week and a half ago. My first ACTH stimulation test is scheduled in 4 days.

Last night I was at a wedding event and I suddenly had a sharp mid-abdomenal pain and started getting extremely fatigued, dizzy, and lightheaded. It then progressed quickly to nausea and disorientation and I was on the verge of passing out and throwing up. For the next few minutes I was in a cold sweat and couldn't open my eyes fully or speak and it only stopped when my husband got me some water.

I don't have any medication prescriptions for this yet and this has never happened this drastically before. Was this an adrenal crisis event and if it happens again, what should I do? TIA!

2 years ago I had tapentadol thrown at me after 5x staph infections and chronic back pain.
I would love to say I wish I could go back and not take that first pill. But pain is pain. And I probably would have still taken it knowing what it would do to me 2 years later.

I was on 500mg a day at one point. My doctor wanted nothing to do with tapering so I did it alone. I am stuck at 180mg.

Now my adrenals are not producing enough cortisol and I have severe loss of oestrogen, hypogonadism, FSH is through the roof. OIAI is worse for females, especially going through menopause.

Endocrinologist has never heard of this. I have read about 10 peer reviewed papers so far, and this is it.
My level in the morning is 30 nmol/L and it should be at the least 300+

My Gp sent me urgently to an endocrinologist afraid I would go into adrenal crisis. She was not interested. It’s not Addisons. It’s secondary and now I know why. The sweating, extreme weight loss, doom, agitation, muscle wasting, horrible pain in my adrenals.

The only cure is to stop opioids and wait for my hormones to recover. Alongside a bit of hydrocortisone to help my poor adrenals.

Easy right? Nope I am terrified of the suffering from opioid withdrawal. I was going slow but now have to go a lot faster.

Has anyone experienced opioid induced adrenal insufficiency? How quick did your system recover after stopping? Did hydrocortisone help a bit?

I will ask on the appropriate sub for tips with withdrawal. I just want to know I am not alone. My health journey has been so long and this seems like the final step.

This sucks…

I’ve had migraines almost daily over the past week. It always starts with visual disturbances that last about 30 minutes. Recently they lasted over 2 hours and only went away after I took a dose of hydrocortisone. That’s when I realized I need to increase my dose by at least 10 mg during a migraine attack. Now my question: I had increased my dose over the past few weeks due to illness, and then went back down to my normal dose. Could it be that the change in dosage, or that I’m now possibly under-dosed, is triggering/causing the migraine attacks? Has anyone had similar experiences? I actually almost never had migraines in recent years, and now I’m getting them so often