r/AddisonsDisease

I got back from a wedding in New Orleans this past weekend (where we later found out many people got sick with a virus). Felt fine all Sunday and the first half of Monday. Second half of Monday I started to feel crappy and took a nap. Woke up from the nap and through up within an hour. Tried updosing and eating small and drinking a little water. Ended up throwing up again 2 hours later. Rinse and repeat one final time at 10:30pm. Could not keep any meds down nor food or water. I was so weak. My wife and I were debating going to the ER, but we ended up going.

At the ER, they tested me for a bunch of viral infections, pneumonia, COVID, gave me chest XRay, CT scan of my belly, and tons of blood tests. I was still feeling feverish for the first 7 hours or so of being there, which is why I was kept for 18 hours total I think. I actually didn’t get a stress dose from the doctors until 3 hours in of me being there, which I maybe should have emphasized at the beginning that I needed that. I told them about Addisons disease, and they knew what it was, but they didn’t seem alarmed.

I think the stress dose and the Zofran (anti nausea meds) in combination started to put me back on the right path, and by 11am yesterday I felt like I could go home. Didn’t end up leaving until 5pm though.

I’m hoping this can be a lesson to those who maybe think since they haven’t had one yet that they’ll never have one ever. It can happen, and I feel like I was a good example of that. Addisons doesn’t affect my life hardly at all, and I thought it would be that way forever. Guess not. Be prepared for situations where you can’t stop throwing up or are very sick. I’m hoping I can get some Zofran for future issues to avoid going to the ER. Otherwise, there’s no hope for me really lol

Hi, so I've been taking prednisone and am tapering off of it for another medical condition. I mentioned to my endocrinologist that I've been having bad side effects but she said to continue tapering off prednisone for now. I just got labs done and my cortisol and ACTH are super low even with taking a high dose of prednisone. I'm not sure what to do in this case as my appointment with my doctor is a couple of days from now and I feel horrible. On top of all of this, I'm fighting an infection and taking an antibiotic. I don't know if it is okay to take hydrocortisone on top of prednisone to see if that helps the low cortisol symptoms.
It's no wonder I've been feeling so bad 😭

Hello my friends 💕Currently stuck in hospital awaiting a dr. I Administered emergency injection around 7:30pm, V&D persisted for 30 mins after injection so called 999. Was told on arrival at hospital "you'll be seen when you get seen" I tried to say what normally happens is I get another emergency injection plus fluids, was told I need to wait. I gave up. It's now half 11, only just got fluids and anti sickness. Currently playing toilet Olympics. Which kind of defeats the fluids... Apparently because I injected myself at home I don't need another?! I have a feeling I would have been better trying to manage this at home. My wife isn't with me, I'm pretty rubbish at standing up for myself when I feel so shit... Pun totally intended. Back is killing me, feeling pretty weak. I don't have a good track record with this place, they usually make me worse before I get better. -I found an emergency injection in my handbag, I'm tempted to inject myself to stop this from spiraling. No puking currently (anti sickness) but my guts seem to think everything within an inch of my life needs to hurry out the exit like it's some kind of natural disaster escape drill. Thoughts? Xxx 💖 😘

I’m a male, 1.90m and around 95kg. I’m not super active, don’t do intense sports or anything, but I seem to genuinely need around 33–34mg hydrocortisone daily to function normally.
If I go closer to 30mg or below, I become extremely fatigued to the point where getting out of bed feels almost impossible. It’s not just “a bit tired” either, it feels like my body completely shuts down.
What confuses me is that a lot of people online say doses above 25–30mg automatically mean overreplacement
I take 20mg at 07:30, 10mg at 12:00 and 3/4 mg at 15:30 depending on how i feel.

What do we need to do?

Scrolling through this sub seems a bit depressing in terms of outlook… any positive stories of how people are actually doing great and living their best lives and so on?

EDIT: thank you all for sharing your experiences with me

Modern medicine is bashed so often and there is a distrust of doctors and meds and while some skepticism is definitely warranted, I wanted to give a shoutout to doctors and nurses who know what they are doing and save lives every day.

I hear things like; ' Go to a naturopath and drink herbal tea, doctors are useless' or ' I would NEVER take hormones' etc

Well thank goodness for synthetic hormones and for the fact I did go to a doctor.

Here I am, so incredibly grateful to be alive after almost dying 3 years ago from an adrenal crisis and getting diagnosed with PAI.

Grateful humankind made a synthetic form of cortisol in the 1940's without which we all would have died right after being diagnosed (or without being diagnosed)

It is crazy to me to think of all the pieces that had to fall into place for me and most of you reading this to be alive today.

Someone had to invent cortisone. Someone had to recognize our rare illness and treat it in time.

🙏

Hi everyone.
I’ve recently been diagnosed with SAI after a year and on hydrocortisone since a few months.
Because I’m still extremely exhausted, still have abdominal pain, dizzyness and just overal feeling of malaise my endocrinologist said there’s probably something else going on.
According to her patients with SAI that take hydrocortisone feel at least 80% better in a matter of days.
All of my other hormones have been checked and everything looks good. They’re thinking about me/cfs.
I wanted to ask if it’s true that most of us with AI feel like normal again after steroids? Should I keep looking into other problems? Or is it possible to need a lot more time to heal even when taking steroids?

Hi all, male in my early 30s. Diagnosed 2023.

Sunday 3rd May did my first marathon (3:36). Everything went to plan, upped my hydrocortisone a bit, plenty of fluids and salt before during and after and a proper training plan. I was ready for the race.

Then yesterday Monday 4th, woke up feeling fine, breakfast and meds as normal. 11am I get increasing abdo pain, vomiting and low BP. Gave myself 100mg IM hydrocortisone which had minimal effect.

Ambulance called and was in hospital by 2.30pm. IV hydrocortisone and fluids have done the trick.

Learning points for me:

- It was very scary just how rapidly I declined

- for the days after a big endurance thing continue with increased (doubled) HC dose

- we have an amazing NHS

- Addison’s is definitely not to be fucked with! As a male in my 30s it’s easy to get complacent about things, but I was pretty humbled yesterday!

Anyone other similar experiences here after sport?

How long to get back on feet after an adrenal crisis? Feeling wiped today.

Fellow Addisonian here. I had a conversation in the wild with another Addisonian in a JFK TIL comment section and realized I’d never shared this in the Addison’s community specifically, so here goes.

I stumbled on ubiquinol randomly and noticed two things: my energy seemed more stable, and my face seemed to gradually normalize the longer I stayed consistent with it. Turns out there’s actually a reason for both.

Daily steroids deplete CoQ10 in adipose tissue mitochondria. This has been shown in dexamethasone studies. The depletion causes oxidative stress, impairs ATP production, and suppresses collagen synthesis in dermal tissue. So you’re getting hit on multiple fronts at once, energy, skin structure, and fat metabolism, all from the same underlying mechanism.

Ubiquinol is the active reduced form of CoQ10. The distinction matters because your body has to convert standard CoQ10 before it can use it, and that conversion step tends to work poorly in people dealing with chronic illness. Ubiquinol bypasses that entirely and actually gets into the cells. There’s a placebo-controlled double-blind study where CFS patients took 150mg of ubiquinol daily for 12 weeks and saw improvements in multiple fatigue-related symptoms. CFS isn’t Addison’s but the mitochondrial dysfunction overlap is real.

The face stuff is where I can only speak from personal experience. I notice a real difference when I stay consistent, and the mechanism is coherent, but nobody’s formally studied it for moon face specifically. Worth being upfront about that.

Start at 100mg with a fatty meal. Some people doing heavier steroid loads do better at 200mg. Give it 4 months minimum. You’re waiting on cellular turnover, not a quick fix.

If you want to dig into the research yourself, search “dexamethasone mitochondrial CoQ10 depletion adipose tissue” for the depletion side, and “glucocorticoids collagen synthesis suppression dermal fibroblasts” for the skin side.

Worth a shot.

Study on autonomic nervous function/CFS:
Published in BioFactors (Wiley) by Fukuda et al. 2016: https://iubmb.onlinelibrary.wiley.com/doi/10.1002/biof.1293

Hi I’m taking prednisone and have SAI. I recently got diagnosed with a uti and got an antibiotic but am not feeling better. It’s day two today but my symptoms are a bit worse, I have some back pain now, my bladder hurts more, I have nausea, my temp is going up, and I just feel worse over all. I’m trying to figure out what I can do because if I can help it I don’t want to have to go to the ER 😩. I’m not sure if it would be a good idea to take some hydrocortisone to see if that helps me too? Any advice is appreciated.

Hi so I’m 23 years old, when I was 21 my first crisis came and for a whole year they couldn’t diagnose what is my problem and I was fainting vomiting and had diarrhea every single day, finally after a year they diagnosed me with Addison and I started taking medication.

I take 15 mg in the morning when I wake up and another 10 mg at 05:00pm.
I started to have once a month an Addison crisis that I wake up with a urge feeling to go to the bathroom and vomit and lay down on the bed with my legs up on the wall feeling like I’m about to die. After my father makes me take my pills cause I can’t think of anything in that moment I start feeling better after an hour but feels weak for the whole day and sometimes after that day too.

I find it that the crisis happens sometimes after I eat outside or go to sleep later than usual.
I saw a lot of people here saying that they take a pill at night or having an injection medication for when the crisis happens.

Does someone here can give me advice on like what should I do or what should I ask of my endocrinologist?

Hello, I hope everyone is feeling well today

I’m really dizzy and nauseous. It’s been happening occasionally especially after a shower. Today it came on while I was laying on the couch *not in the shower, i hadn’t showered yet when the dizziness started. I checked my blood pressure which is perfect so I’m totally confused on what is happening and what to do.

Has anyone else experienced this or have possible insight. TYIA 🫶

I used to feel very bad shaking etc now i feel almost normal in the morning . I have tertiary ai . Just want to know if other people with ai still feel always bad or some people with ai feel normal after a while. Or its because my condition get better ?

I’ve been in and out of adrenal crisis for almost 10 days due to grave mismanagement by my endo, and finally admitted myself under a different endo at the hospital. Current plan is stabilizing me for 3 days on around 200-150mg hydrocortisone/day.

My question is: how do people usually transition from ICU/hospital-level dosing back down to physiological dosing after a bad crisis?

What kind of dose were you discharged home on, and how fast did you taper back down? I can’t imagine tapering by tiny 2.5mg steps every few days starting from like 80–200mg HC… that would take forever.

Just trying to understand what a normal recovery taper looks like after severe instability/crisis.

PS: halfway through this process my regular endo told me “secondary AI patients can’t have adrenal crises” 🤡 and “if you want to stay on high dose steroids go ahead, you’ll just gain weight.” So… yeah. Looking for a new doctor now.

Hi everyone,

Wondering if anyone in Canada has had luck getting delayed release hydrocortisone/other steroids? I have been diagnosed for 2 years now and am grateful to be settling into a good rhythm with hydro and fludro.

One ongoing struggle is MORNINGS. I wake up feeling pretty rough and non functional. I take a dose of hydrocortisone right away but feel like I cant really function for about 20+ mins. Ideally, id love to take a delayed release pill before bed, but I dont know if this is an option. I understand some folks wake up at 3-4am for their first dose and go back to sleep, but I dont love that idea for myself.

Anyone have a strategy that works well?

I was wondering if anyone had any experience with ADHD and Addison's disease. I do not have a formal diagnosis for ADHD however have always struggled to focus on one thing, sitting still, mood swings and I am always messing with something. This has never caused me any problems however I recently got a new job that requires more focus and is a job that I actually care about.

For the last few months I have been constantly exhausted and have started having what I believe may be panic attacks or feels like my heart stops for a moment followed by a feint sensation. I have never in my 31 years of existing had a panic attack or suffered with anxiety. I have booked an appointment with my endocrinologist however I was wondering if anyone had any experience with the two conditions affecting each other.

Background - I am male and have had Addison's around 19 years with no crises but have multiple other lifelong conditions so my health is regularly monitored and 3 months ago had low folic acid and low vitamin D