Any expats here? For years my husband and I both have desired to live internationally long-term. I’m American and spent several years pre-dx living in China, so I know what it’s like to live in a different culture with different systems and ways things work, different climate, learning and speaking a different language with little use of my native tongue… but I don’t know what it’s like to manage the cortisol demand of all those unknowns. When I imagine it in hindsight it seems like it’d be really difficult! I did already have T1D at that point, but the difficulties of management were more about learning the glycemic load of the food there and stockpiling supplies. Int’l travel is one thing, but I’m wondering if anyone has experience living somewhere with low cultural proximity to your home culture.

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.

Before I was diagnosed I was a pro at falling, and staying, asleep. Now I've been going through a bout where I can still fall asleep just fine, and really instantly, but can only stay asleep for 2-4 hours. I'm not restless and my brain and body want to sleep: but it's like the switch to actual sleep wont flip back on once I've fallen asleep once and then woken up. (I usually wake up at 3am. This has been going on for about a month now)

I know I have other stuff going on, like perimenopause, which is probably a huge factor, but I'm doing everything that's advised and I still can't stay asleep. I'm so exhausted. My brain and body are running on fumes. I said Screw It around 4am last night and took 2.5 of my hydrocortisone and I actually felt closer to going back to sleep than I have in a week. Then today I saw that sometimes dips can actually cause you to stay awake?

Any thoughts or advice is really appreciated, thanks!

Hello all! I found out about this disease 2 days ago when my new doctor ordered me some blood work. I have been suffering since 2024 with persistent nausea and vomiting (plus hypoglycemia, temperature regulation, loss of appetite, extreme weight loss, and passing out) . I will throw up for hours at a time with no breathing breaks until my body goes into shock. It SUCKS!! No one has been able to figure it out. My last PCP gave up on me and told me he can’t help me anymore, so I found a new one.

From my understanding, my symptoms are pretty par for the course. However, I didn’t have these issues (besides the hypoglycemia and generally consistent nausea) before I got norovirus January 2024. I threw up and sh*t myself violently for a couple of weeks and then I was fine..until like 5-6 days after I recovered. I started throwing up again. I threw up for a week or so until one night shit hit the fan. I couldn’t speak, hear, feel ANYTHING besides the toilet bowl and my stomach trying to escape through my esophagus. It was worse than the norovirus. I’ve been dealing with randomly and violently throwing up since then. Funny enough, for several months I would be nauseous, but fine, until almost 9pm on the dot, then I had about an hour or two before deciding to go to the ER. I was, at my worst, going to the ER 5 times a month.

I’m just curious about yalls thoughts, since I don’t have my blood results back yet. Anyone else get sick until around 9am and then violently ill around 9pm? Did a virus trigger addisons for you? Is that even possible or heard of?

I had nose surgery today and got perscription for a opioid. THE PAIN IS Un bareable, the medicine has done nothing to help. Anyone else experienced this?

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.

Hi all!

I’m going on my first multi-day hike (edit: 5 days 4 nights) at the end of the week. I have extra hydro packed in case I need to updose and lots of salty snacks. Im going with 9 other people and we have our emergency preparedness down to a T. I’m also an experienced hiker and I do not typically updose with any amount of exercise - I just find that I don’t need it.

I’m curious if others have done multi day hikes and whether they increased their fludro for something like this. I’m pretty stable in general, never been in crisis since diagnosis over ten years ago, but my sodium is always just slightly below the normal range. I’m currently on 0.1 in the AM, but considering bringing another 0.1 to take in the PM to help with sodium loss.

I do a lot of my own med adjustments without my doctor monitoring me & I am very in tune with how I’m feeling when I’m doing that, but I obviously don’t wanna have a day-ruining reaction to increasing my fludro while I’m supposed to be hiking 10+ km per day. So I guess my questions are whether it is safe/reasonable to increase my fludro for this, and if there are any day-ruining side effects of increasing my fludro unnecessarily short term.

Has anyone else noticed they need more hydrocortisone at a higher body weight?
I’ve been around 70, 80, 90 and 100 kg at different points, and I feel like my hydrocortisone needs have changed quite a bit with my weight.
At around 70 kg I felt fine on 20 mg a day. At 80 kg, 25 mg seemed to work best for me. Now at around 100 kg, I seem to need roughly 32.5–34 mg to feel properly replaced.
I know dosing is very individual and I’m not suggesting anyone change their dose based on this, but I’m curious whether others with Addison’s have noticed the same thing. Does your maintenance dose seem to increase when you gain weight, or decrease when you lose weight?

After learning that Teva was the only manufacturer for the US market to ever make fludrocortisone in an oval shape, I wanted to know if they planned to make it again (it was discontinued in 2024 iirc). This is their response:

>Good Afternoon,
Thank you for contacting Teva Pharmaceuticals Customer Service.
Unfortunately, it is highly unlikely that Fludrocortisone Acetate Tablets will return from discontinuation status.
There are a number of reasons why a product may be discontinued such as lack of demand or unavailability of raw materials to name a few.
In this specific case the reason for discontinuation is not provided.
I hope this information has been helpful in addressing your concerns. Please feel free to call us at 1-800-545-8800 or email at tevacs@tevapharm.com if you have any additional questions. Thank you very much for contacting us and please enjoy the rest of your day.
Kindest Regards

Just wanted to share this as I hadn't seen a definitive answer when I googled it

Drives me nuts that I can't split them evenly! I'm trying to be good and fill my med organizers to be more consistent with timing, and I wanted to add .05mg fludro in the evening to the regimen but the damn things are impossible. The splits are just too uneven for my peace of mind. Little crumbly bastards. It's probably not that big a deal but it's just one of those things I can't help being a little irrational about!

Thinking of adding a 1g salt pill instead...I know everyone really likes LMNT but it's so expensive!!

I (33f) had a crisis about a month ago and ended up in the ER, got fluids and 100mg steroids. Then was stress dosing for a week after. Back to normal now but I’m having some pretty extreme hair shedding.

I know some hair shedding after medical stress can happen, but when does it stop?

Another factor, I was taking 20mg DHEA and had zero side effects, but also zero improvement so I increased to 25mg and immediately had crazy acne so I stopped taking it all together, that 25mg dose I was on only for a week tops.

Idk if the hair loss is from all this or something else but I would love for it to stop as it’s pretty bad and making me freak out a little bit. Any advice or experiences appreciated!

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

Has anyone found any medications or supplements have added or unusual side effects with Addisons? I know there’s a few such as ashwaganda that you shouldn’t take but wondering if there’s anything else that has affected anyone.

I am not diagnosed with Addisons but I have hashimotos and I’ve been having increased symptoms of fatigue and diarrhea and feeling a bit nauseous. Particularly worse in the mornings for diarrhea and nausea. I’ve also noticed some spots on my lips. If you had spots on your lips how long did you have them before more symptoms/diagnosis? Did they slowly appear over time before other symptoms got worse?

A male family member of mine, aged 12, has just been diagnosed with Addison’s disease, and I’m trying to understand as much as I can so I can support him and his parents too.

I’ve been reading up on it, but there’s only so much you can learn from medical information. I’d really appreciate hearing from people who have Addison’s themselves, or parents/carers of children who have been diagnosed.

What do you wish you’d known when you or your child was first diagnosed?
Is there anything family members can do that makes day-to-day life easier, or anything you think is particularly important for us to understand?

I imagine it must be a huge adjustment for a 12-year-old, so I’d also be interested in hearing how people found the emotional/social side of things, particularly at school and with friends.
I’m not looking for medical advice or to replace what his doctors have told him — I’d just really value some practical advice and personal experiences.
Any support, advice or things you think I should know would be hugely appreciated.
Thank you.

curious if fludrocortisone releases from the body potassium/magnesium/minerals ?

I noticed after being late with the pill my muslces feels frozen/stiff

thanks

I have been in a medical nightmare lately. I feel like I have been pulled in all directions besides answers. Today I had an appointment with a new cardiologist due to frequent fainting and I (and 2 of my other doctors) had concern for POTS. I do not have POTS - and he brought up Addisons disease. I have never heard of it until today, two of my previous bloodwork markers alluded to it so now I am getting bloodwork done & have a heart monitor. After reading, this very well may be what I have been dealing with.

What were your first symptoms with this disease? What’s your day to day like?

Hey friends.

For context I’m in Ontario Canada, work full time in a career that I love (and I don’t want that to change!).

My question isn’t so much about getting time off work with AI - my workplace has been great. It’s for tax purposes… because other health issues due to AI are now costing money (and not covered by OHIP).

Because I’m steroid dependent, it’s caused other issues… like type 2 diabetes, cataracts, dental issues with infections that almost took me out

Has anyone been successful with their doc in getting them to say AI is a disability?

edit - I should say that I’m specifically looking at the Canada Disability Tax Credit, for a little financial relief because this disease is now costing money that OHIP isn’t covering.

Just wanted to make a quick post, that I am incredibly proud of what I've been able to do post diagnosis. Spent 2 days doing a clutch on the street on my car in 30c+ heat, ran around all day with my sister, driving her around and sight seeing the day after (with a quick 4hr shift finishing my clutch job), then spent my 27th Birthday driving for 5 hours, walking 6 miles and spending 1.5hrs on the London Underground in 38c heat all within 4 days, Monday-Thursday. Absolutely shattered now, resting heart rate is going up and HRV is down so a day horizonal is much needed but I don't know how I've managed it but wanted to share some positivity :D I have T1D too, that has been wrecked even more so by all this but I'll get it back on track.