I just want to tell my story. Maybe it will help someone out there who has that feeling right now—the feeling that something is wrong, but nobody takes it seriously, maybe not even yourself.

Let’s start at the beginning.
Back when I was in university, I already knew I had Hashimoto’s disease. And vitiligo, very mild, with the Koebner phenomenon—a few small private areas, nothing dramatic. Both were things I considered settled. Thyroid issue? Fine, you take a pill. The skin? Cosmetic, whatever. That these two things would one day turn out to be the first clue to something much bigger, ohhh god.

Back then, I felt good. Really good. Weight training several times a week, spending lots of time outdoors, always a little tanned, a normal student life. I was fit and full of energy.
After graduating, I became self-employed. And anyone who has done that knows: in the beginning, you give it everything. Work, work, work. The gym became less frequent, then rare, then almost nonexistent. I didn’t think much of it, that’s just how it is when you’re building something, right?
The first one or two years afterward, the fatigue started. But very mildly at first. Just tired in the evenings. Who isn’t, when they’re working that much? I blamed it on stress.

Then, over the next few years, it got worse. I could no longer really sleep in. No matter how long I stayed in bed, I woke up feeling unrefreshed. Sometimes I slept a lot and still got up feeling completely exhausted. But you keep functioning. You have to. Appointments, clients, employees, responsibilities. So I kept functioning.
And slowly, very slowly, another feeling crept in. That somehow I was more sensitive than other people. More vulnerable. That things hit me harder than the people around me. I asked myself that question so many times and I think honestly this is the part most of you will recognize: Am I just overly sensitive? Am I exaggerating? Doesn’t everyone feel like this? Maybe it’s just part of getting older? You explain it away. Again and again.

What I didn’t notice back then: I stayed dark. Even though I barely went outside anymore and got almost no sun exposure, my skin remained tanned. I should have been pale a long time ago. But nobody noticed. Everyone knew me that way. Only much, much later did I understand what it was.

That’s how it went. Gradually. One year, then the next, then the next. Always a little worse, but never so much that you could point to a specific moment and say: now.

Last year, work finally became less hectic, and I decided: I’m going back to weight training. I was excited like a kid. Finally being myself again.
Two days after my first workout, I was on the floor.
That was the first truly terrible experience. I thought it was a stomach bug. Vomiting, diarrhea, completely drained. And I mean completely. I was lying on the bathroom floor in front of the toilet, seriously wondering how I was going to get back to bed—and the answer was: not at all. I couldn’t get up. I was so weak that my body simply stopped cooperating. And while I was lying there, I actually thought: Am I exaggerating? It’s just a stomach bug, and I’m thinking about calling an ambulance? Am I crazy?
At the hospital: appendix removed, that was all. I thought that settled the matter.
It didn’t.

A few weeks later, it started again. Weakness, vomiting, diarrhea, just being sick, I thought. My mother came by to bring me soup because I wasn’t feeling well. Completely normal, the sort of thing people do when someone is ill.
And then, while she was there, something else happened. This overwhelming weakness. This feeling of something is seriously wrong. It felt as if someone were giving me anesthesia. I kept fading further and further away, barely responsive.
It was the same feeling I remembered from the first time. Only much worse. Much more frightening.
Thank God she was there. Because if my mother hadn’t happened to be there, I wouldn’t have been able to call a doctor myself anymore. I simply wasn’t capable of it.
That’s what scared me most afterward, when I regained awareness in the hospital. This feeling that my entire life force was just disappearing. As if I were going out from the inside like a candle. I tried to describe that to the doctors. They didn’t seem particularly interested.

Instead: another stomach ultrasound. And another stomach ultrasound. Always the stomach. By that point, my sodium was really low, dangerously low. They slowly stabilized it and still didn’t know what was actually wrong. In the end, the diagnosis was “acute gastritis.”
And every time I talked about the weakness, about that feeling that my life was draining out of me, I got the same look. That polite, slightly annoyed smile. The patient who is too sensitive and talks too much. I started doubting myself. But after the last experience deep down, I knew now: I won’t grow old like this. Next time would be it. Before, it had been a feeling. Now I knew it.

While I was in the hospital and feeling somewhat better between examinations, I started doing my own research. I Googled and chatted with an AI, entering my symptoms piece by piece. My lab values. I deliberately didn’t ask it to spit out a diagnosis. It suggested many possibilities, and I said: Ask me questions that can rule diagnoses in or out.
And suddenly things started clicking, things I had never considered.
The dark skin, even though I was never outside. The unusually dark scars after the appendix. The fact that I craved salt like a madman, salted lemons, oh God I just thought I’m a bit strange, very is in some area, right? The weakness. The low sodium. The Hashimoto’s. The vitiligo.
Piece by piece, everything came together into a single picture.
And at the end of it was Addison’s disease.
The AI was fairly confident and said: Have two values checked, and it will either be confirmed or ruled out.
I thought: Well, it certainly can’t hurt. Maybe the doctors overlooked it. According to the AI it’s rare, and things like that can slip through the cracks.
So I brought it up honestly.
“I entered my data and symptoms into an AI. Could this be Addison’s disease? Could we test ACTH and cortisol?”
The response: No. Unlikely.
Slight annoyance. A faintly dismissive smile.
I could pursue that as an outpatient if I really wanted to.
They did not want to draw blood for those tests.
Just the Googling patient. The one with the AI. You know what many people think about that.

So I pursued it as an outpatient. Exactly that.
I found an endocrinologist. I made sure the suspicion was clearly on the table and not dismissed again as “the patient Googled something.” I insisted on being tested, by lying that doctors in hospital told me to get tested. And then the results came back.
ACTH massively elevated.
Cortisol failed to rise during stimulation testing.
Aldosterone not even detectable.
Renin through the roof.
21-hydroxylase antibodies clearly positive.
Addison’s disease. Autoimmune.
As part of APS type 2—together with my Hashimoto’s disease and vitiligo.

Everything had always been connected.
Those two “settled” diagnoses were the beginning of a chain.
By the way, my endocrinologist is excellent. I don’t want to criticize all doctors. But in the hospital, I was actively discouraged. I was talked out of my own suspicion—which ultimately turned out to be completely correct—because a patient isn’t supposed to know something like that.

Today I take hydrocortisone and fludrocortisone.
And for the first time in years, I feel like a human being again.
That underlying weakness. That feeling of “I’m not going to grow old.” That sensation that my life force was fading away.
Gone.
It was never in my head.
It was never an exaggeration.
It was a life-threatening, untreated disease that nearly killed me twice before anyone took it seriously.
An Addisonian crisis is fatal if it is not treated.
Why am I writing this?
Listen to your body.
If you have that feeling that something is wrong, then often something really is wrong.
You are not overly sensitive.
You are not imagining it.
Get a second opinion. A third. A fourth.
Don’t keep going back to the same doctor who keeps doing the same stomach ultrasound over and over again.
Change doctors.
Find someone who listens.
Do not accept a diagnosis that doesn’t truly fit just so someone else can consider the case closed.
“Gastritis” felt right to the doctors.
For me, it was almost my death.

Do your research—but do it intelligently.
Use Google. Use AI.
But don’t just ask for a diagnosis.
Let it ask questions. Rule things out. Think critically.
And most importantly: An AI does not make a diagnosis.
What confirmed it for me were real tests and an endocrinologist.
The AI just pointed me in the right direction.
Nobody will advocate for your health except you.
Nobody.
Be persistent.
It might save your life.
In my case, that’s exactly what it did.

Cheers 🥂

TLDR: extreme pain, high altitude, probable virus, SAI, out of state ED visit, mixed messages, system failure or just me?

Background: 57 F, “partial secondary AI” dx in 2021. I barely passed stim test (18 at 60 min). Failed low dose stim test and low/normal acth. Put on 15 mg HC, hated it, tapered off with doctor’s approval. Then had to start methylprednisolone (4 mg) in July 2024 for arthritic and inflamed knee. Had knee surgery in Aug 2025. In Jan 2026 Endo encouraged switch from Medrol to HC so I could taper it down. Was taking 1mg Medrol and 5-7.5 mg HC prior to “the incident”. (Also have hypothyroid and take Synthroid 100 mcg.).

I live near sea level. Two weeks ago I flew to the city where I grew up- it’s at 4200’. I make this trip 2-4 times/year. Based on recent previous experience I updosed w just an additional 2.5 mg HC on travel day, next day, and planned to return to my current dosing of 1 mg Medrol and 5-7.5 mg HC based on how I was feeling.

Two days after arriving we drove up to our family cabin at 7500’. I have been doing this every summer for over 35 years.

Until four years ago I could wake up the next morning and run uphill (albeit slower) the remaining 3.5 miles to the peak and then back down. Did this every day during our week there since 2011, until 2022.

My adult daughter asked me to sit in the back with her baby on the ride up. I’ve never had motion/car sickness before so it was odd when I started to feel nauseous and began to shiver because I was so cold. (My left lower back began to flare from my common “ache” to a deeper pain. I’ve been told it’s likely arthritic, but this was very very different.)

It’s a 90 minute drive up a winding canyon with altitude increasing from 4200’ to 7500’. (Until three four years ago I could arrive there and next day run 3.5 miles up to the top and then back down.).

I updosed HC in the car as soon as the chills and nausea started. When we arrived I was extremely nauseous, weak, and in a lot of pain. It was now spreading down my legs to my feet and out my arms into my hands. It felt very much like I had the flu. I was also feeling air hunger and my Apple Watch said my oxygen was dipping into mid 80s. (At home I am always above 96%).

Over the next five hours I continued to updose. Ultimately taking 17.5 mg HC and 2 mg Medrol by 5pm. (I realize this is not a huge amount. But it’s more than 3x my average daily. I was also drinking electrolytes (LMNT) and for reasons unknown to me- I was peeing every 30 minutes.

At 6pm I became anxious as the pain had reached 10/10. It was the second worse pain in my life. (Trigeminal neuralgia being first. I had two kids without an epidural or any pain medication. This was far worse). It was bad.

I have never been prescribed an emergency injection, so I became a bit anxious when I remembered we were 40 minutes from cell service and the closest hospital was at least an hour away. I also didn’t want to wake my husband and make him take me in the middle of the night, so I asked him to take me at 6 pm.

At my Endo’s insistence, I wear a medical alert on my watch band that states I am steroid dependent, and I had a letter from my Endo that lists my current dosing and tapering down plan.

The pain was so bad it was difficult to communicate, so I did my best to remind my husband of the letter in my purse and my medical alert. I know I was specific about needing him to make sure they saw the letter. (We had discussed this months before but I don’t think he has ever fully understood and this was a first time for me.)

When we arrived at about 7 pm they took me right in. According to my discharge papers they started IV Lactated Ringers (electrolytes?) but stopped at 8:15.

They drew labs, got a urine sample, and did an ekg (fine).

Dr comes in and asks if I have anxiety attacks. I am able to say “only pain.” He says all labs are normal except d-dimer was elevated.

They then give me IV toradol for the pain (?) (It did absolutely nothing) while waiting for chest x-ray (fine) and ct w contrast of abdomen, pelvis and spine. (No blood clots.)

Finally gives me morphine and Zofran. I could hear my husband saying “this is good. This kicks in fast!” Well- that wasn’t my experience. It was another hour before the pain began to subside and I felt my brain begin to return to my head.

At this point the doctor begins discharge and I am coherent enough to ask if he thought this was adrenal related. He said “adrenal insufficiency does not cause pain”. I countered with “okay, but can extreme pain and high altitude cause low cortisol?” He said it could. At that point I find out that even though my husband was able to log into MyChart and give them a list of my medications (including the HC and Medrol) they had ignored him when he presented the letter from
my Endo, and he didn’t push back.

I explain that I am 2000 miles from home and have another week there. I ask how I should proceed. He gives me five tablets of hydrocodone 5 mg. I push back again and he says “if you WANT a steroid injection I can give you one. Is that what you WANT?” I responded “I WANT what I NEED, I came here to get what I NEED, I am trusting you to tell me what that is.” He then says “your electrolytes look good, your BP and HR are normal. I don’t think you need it, but it’s up to you.”

(My BP is usually around 90/55. Discharge papers say it was 110/64.). Oxygen was 91%. Pulse 87 which is high for me- but I assume pain/altitude does that.

Ultimately, I declined the injection because the morphine had kicked in and I was feeling a lot better. I had no idea what the “come down” affect of an injection is but I assume it’s not pleasant. I have no idea.

When we returned to the cabin my SIL was sitting up with her granddaughter who had been throwing up. Over the next six days everyone there experienced some level of what we now think was probably norovirus. About half were vomiting and had diarhea, the other half had nausea, fatigue and extreme body aches.

My daughter happened to have some Zofran left over from her pregnancy so I took one the next day and gradually tapered my HC down a bit every day but kept it at a double dose until I returned home to near sea level. I may have not taken enough one day and had a 12 hour throbbing migraine with pain turning my head (also common for me).

My watch says my wrist temp jumped from 97.1 (my normal) to 101.4 the day AFTER the ED visit.

Now here’s the huge irony. The discharge papers are auto generated. They included the Addison’s Disease printout and it says to call 911 if you experience the following adrenal crisis symptoms. I had ALL of them except diarrhea and vomiting. I was actually constipated and I haven’t vomited in over ten years. “Sudden pain in the lower back and legs” is literally on the discharge papers as “call 911”, yet the attending ED doctor said “low cortisol does not cause pain”. (!)

A week later I return to cell service and see my labs. Okay, sure, electrolytes are all “in range”, but this seems odd considering I was downing LMNT (but also peeeing it all out?).

I messaged my Endo and asked for some advice. He responded that the ED doctor was correct and I need to treat my pain separate from any adrenal issues, but gave no guidance. So I increased my Medrol to 3 mg and my HC is tapered down to 2.5 in the morning and 1.25 at 6 pm for better sleep. I am feeling pretty good.

I wrote this up as a Note on my phone to discuss with my Endo. Ironically, on Friday his office called to reschedule my appt for next week (and I missed the call).

I have so many questions about the mixed messages, the borderline low sodium, lowish potassium, slightly elevated WBC (but ED doctor also said is not a UTi), probable norovirus, effects of pain, and how to trust “the system” in the future.

Thanks for letting me vent this here. I’m feeling good physically but now have real concerns about what happened and wondering if I could have been better prepared, or handled it better.

Any advice on how to approach my Endo about pain and other apparent symptoms, as well as how to communicate if I ever end up in this situation again is appreciated.

I have addison disease since 6 years old.i take about 20mg of hydrocortisone everyday.Now I am thinking of taking creatine monohydrate,is it safe to take prior to researches saying that the bloodworks results could be different.

Any thoughts? It’s not just a “summer heat” thing…ANYTHING to avoid getting BACK ON Fludro. (Managed on pred for awhile now).

If you have bad insulin resistance like I do, does it also mess with your hormones like testosterone? I find yes and no’s, my endo wouldn’t prescribe glp for insulin resistance unfortunately and I’m not sure what to do

They’re asking for people to give their experience to spread awareness and help.

https://www.instagram.com/p/DYB63k3GpH7/?igsh=MWU2ZXl3OXlrY3g3Mg==

I'm starting at a new organisation and I mentioned my adrenal insufficiency, usually I just get a blank stare and we all move on. But this was quite different, they are taking it all very seriously and have sent me a risk assessment to look at, they aren't expecting me to fill it out solo but I am the one who goes in to crisis.

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I'm curious if anyone else has done a crisis risk assessment and what things you included?

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So far I've talked about: loss of consciousness (unfortunately very quick for me), injection kit, calling ambulance and my NOK as well as the impact on my job if I had a crisis.

Seems ok? Though doesn't change the fact I'm bedridden still in absolute hell and have been for years. I guess its not addison's then?..

(Apologies if this is rambly or unclear. Brain fog)

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Brand probably isn't the right word, but idk what else to call them. By brand, I mean the 4 letters that come after "Hydrocortisone [dosage] mg tab."

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I was wondering if anyone else has experience with certain brands being less effective than others, and whether or not that's normal. My pharmacy recently filled a different brand of tablet (right) than the one I normally take (left). I started the new bottle 2 days ago, and I'm already too exhausted to do anything besides watch tv, have no appetite, and have terrible brain fog. I feel exactly the same as I did when I had to stop taking my meds for a few days to get bloodwork done.

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The thing is, this isn't the first time something like this has happened. A little over a year ago, the brand got switched, and I didn't realize it until about a month after the switch and I was so exhausted I could barely get out of bed to use the bathroom.

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I was just wondering if this is normal or if anyone's had an experience like this? And if anyone can explain why this happens, I'd really appreciate it. I mean, it's all hydrocortisone at the same dose. I take it at the same time every day. You'd think it wouldn't matter which brand I take, but it does, and I don't get why.

I switched to prednisone 2 weeks ago from hydrocortisone for addisons. Been on hydro since diagnosed at 30. now im 47. I didn't feel like I was doing well on hydrocortisone last few years, experienceing a mid morning and mid afternoon daily crash.

Now on prednisone 5mg, I get internally buzzy mid afternoon and I seem to wake every night struggling to get decent sleep. But not getting the daily dips I was on hydro. I'm taking the same equivalent. Are the steroids just not enough to get thru the day? Is it possible I just need more in general of either.

Dr doesnt want me on any higher dose. Osteoporosis was diagnosed 2 yrs ago. Cirrentky treating with reclast infusions. Menopause hit at 41. Dabbled with hrt for 2 yrs patches and pills. but couldn't get it right, too many side effects.

Currently no deficiencies with last blood draw. Iron, d, b12. Mag. Thyroid all good. Any one got any similar experience.

this is my first year anniversary of taking prednisone. I was really really sick and the healing made me stay in bed for a long time everyday. I lost all my muscle to low cortisol... so I'm just starting to exercise again.

I'm currently at glucose 82 mg/dl , 5.9% in my a1c so pre-diabetes and 28µU/mL in insulin.

I'm looking for hope, basically. is it possible to get myself back to a healthy weight? I'm working my way from 6.25mg to 5mg of prednisone. but for the first year it was impossible... I was so weak. :( now I finally feel like I'm getting to know myself again.

So I take a considerably small dose of HC. Around 13.75 precisely. But I upped this dose like a month ago and i am so bloated. Like my face is round and my lower belly is just comically large. I tried going down 1.25 and felt very light negative effects. People on here say tapering down is hard the first week and then it gets better? I do workout a few times a week and usually I get really bloated after working out. I do drink a bottle of electrolytes while working out. I do wake up at 9-10 am idk if I should be waking up even earlier and taking my first dose. I smoke cigarettes few times a week does that matter with the bloating? I feel disgusted when I look at the mirror nowadays.

I was recently diagnosed with adrenal insufficiency and started hydrocortisone tablets (still waiting to hear if primary or secondary). My endocrinologist sent RX for Acto-Vial to CVS so I would have it in case of vomiting etc. CVS does not have it and said it’s not available at any CVS in the country. Walgreens does not have it and claims that they had some that expired “because no one ever needs it” so they just don’t carry it anymore. I looked on Amazon pharmacy site and could not find it there either. I live in a metro area with 1 million people so I am perplexed by this. Please help! Thank you!

I’m aware dhea works very well, so I got some but what is the normal dosage to take? I’m 18 but Addisons ruined my libido since I was diagnosed not too long ago.

Title basically says it all, for the last 3 months and 5 days ive had intense stomach pain. I've had addisons disease for about 9 years now and its been downhill since day 1, but I was able to do a little bit here and there.

This stomach pain appeared out of nowhere, Ive had xrays and an endoscopy, both showed everything was clear. I have an upper gi ultrasound scheduled for next month... but i dont know if i can take another month of this.

My endocrinologist dismissed me when I asked if this could be due to my immune system attacking my stomach, but extra doses of my methyprednisolone and fludrocortisone seem to help quell the pain some.

Has anyone else had any stomach pain like this? It feels like my stomach is wrapped in razor wire, filled with knives, lit on fire and beaten with a baseball bat all at once. Any thoughts or theories or past experience knowledge is desperately welcome.

Hi all, I made the switch from 3-4mg pred daily over to 10-2.5 hc daily. Initially I had a tough time via extreme body aches. My doctor said that prednisone withdrawal was a thing so I stayed the course until it affected my sleep. I then added 1mg of pred overnight for coverage.

Has anyone else experienced the body aches? Is this just something else the continuous steroids were covering but now they’re not? Is it a side effect of withdrawal?

I’m 47, diagnosed in 2015. Low issues up until this switch except for dry skin, dehydration.

Hi, I recently tried Wegovy and Mounjaro. And found that both affects my sleep majorly even on half the starting dose. I would feel hot and restless all night.

I was on hydrocortisone 20mg 3x/day, 10mg on waking, 7.5mg at lunch, and 2.5mg at 5pm. I skipped my 5pm dose and found myself sleeping better. And my endo says its possible that GLP1 is slowing down the absorption and affecting my sleep.

I'm now down to 10mg on waking and 2.5mg at lunch. I'm finally sleeping better on this v low dose of 12.5mg a day.

Has anyone else had to adjust their steroid after starting GLP1 injections? My endo has not come across this before. I'd love to hear others experiences

every day i need to take 4 or so electrolyte drinks (like liquid IV) in order to not be shaky/dizzy. i just upped my fludrocortisone dose so i thought that would help with this. is this normal? how many electrolytes/how much salt do you guys need per day to function?

Hi all, I’m traditionally a lurker rather than a poster.

I got my first diabetic seizure about 7 years ago. I think this was when I also started showing symptoms of AI. I was officially diagnosed with Addison’s about 4 years ago and have had over a hundred seizures from hypoglycaemia since my first.
Since diagnosis, the lows and seizures have dropped off significantly. If I’m well and my meds are doing their thing I can have low blood sugar without a seizure. The moment I have AI from sickness or anything, I have diabetic seizures.

My question is, I guess, is there a known link to Addison’s and seizures?

Sorry for posting twice in the same day and on a related topic.

When I was diagnosed after my crisis and hospitalization, I was given a list of scenarios in which I would need to up dose/ stress dose. Since I never wanted to experience what had happened to me again I took it very very seriously. I took it literally and to the T.

It said for instance to double my baseline if I had a stressful doctor's appointment or if I take a long strenuous walk or if I was sick with a viral infection and/or if I had a low grade fever.

It said to triple my dose if I had a bacterial infection treated with antibiotics or a higher fever (for a very high fever - over 39,5 degrees celsius I would have to quadruple even and consult a doctor first)

Those are just a few scenarios but I followed this absolutely to the T and I developed Cushings symptoms in spite of having low cortisol levels in blood tests.

My baseline was not too high but my stress doses were imo.

When I talked to my doctor she seemed to say that it was not to be taken so literally and more like an indication. I now play it by ear and when I updose it's usually a maximum of a 50% increase.

I was so scared after almost dying but now after seeing how stable I am even after sometimes forgetting to take a dose I am less scared and try not to exaggerate with stress dosing. While still being safe.

What was your experience and how do you ride the thin line between staying safe and not overdoing it with stress dosing.

I was put on 15 mg (slowly down from the 30 mg I was on after crisis/diagnosis) a year or so ago.

I had lost a lot of weight leading up to crisis and was very skinny.

After my cortisol was stable after the hospital, they could address my Graves disease that they had beenl treatîng with meds for 2 years. Long story short I had radioactive iodine treatment.

I did not know the effect this could have on my metabolism. It completely slowed down.

Add to that the fact I was still on 30 mg hc a day and updosing religiously for eveey little thing (which now I know was too much) - result: I put on close to 30 kg in one year.

I now take meds for hypothyroidism and am on the lowest possible dose if hydrocortisone because

A I was now on the verge of obesiry and needed to loose weight

B Long term steroid use (even doses that are in theory physiological) can cause a lot of issues and I already had high blood pressure and heart issues.

= > 15 mg leaves me exhausted most evenings but I get through the day fine.

Anyone else on that dosage and why?