u/Internal-Cap-8885

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?

I’m 22M and have Addison’s disease. I don’t have diabetes, and my latest HbA1c was 34 mmol/mol.
Whenever I eat a really big, carb-heavy meal, especially around midday, I completely crash afterward. I get extremely tired, my thinking becomes really slow and foggy, and I usually have to take a nap. I also become very thirsty. When I check my blood sugar during these episodes, it’s high, even though my HbA1c is normal and I haven’t been diagnosed with diabetes.
Has anyone else with Addison’s experienced anything similar? Could this be connected to Addison’s or the timing/dose of steroid replacement, or is there something else I should ask my doctor to investigate? Any advice or experiences would be appreciated.
I also am on quite a high daily dose 32,5mg and have to taper down but thats slow process.

Hi everyone,
I have Addison’s disease and I’m trying not to spiral because I have some medical trauma around getting sick.
Earlier today I had a few ear thermometer readings around 38.1°C, so I took 20 mg extra hydrocortisone according to my sick day plan. Since then my temperature has mostly stayed around 37.1–37.6°C, and a few times it was normal around 36.9°C. I took paracetamol too, which brought it down to about 36.6°C.
My symptoms are pretty mild right now: tired, headache, warm face, and very slight throat irritation earlier. No vomiting, no diarrhea, no stomach pain, no low blood pressure, no fainting, no confusion, and I can eat, drink, talk, and walk around normally. This does not feel like previous bad infections I’ve had, where I quickly felt extremely weak and went up to around 39°C.
I’m wondering:
Can a mild virus cause just tiredness, headache, feeling warm, and a low-grade temperature without many cold symptoms?
For other people with Addison’s, do you sometimes get mild “sick-ish” days that don’t turn into a crisis?
If your temperature briefly goes above 38°C but then stays below 38°C for the rest of the day, how do you usually handle your hydrocortisone dosing? I know everyone should follow their own doctor’s plan — I’m just curious about others’ experiences.

I do have emergency hydrocortisone injections and people around me know what to do if I get worse. I’m mainly trying to stay calm and understand whether this sounds like a mild virus/irritation rather than something serious.

I recently took magnesium glycinate before bed — 2 doses of 400 mg during 2 seperate days— and since then I’ve been dealing with really bad insomnia. I’m having a hard time sleeping at night, and I can’t even take naps during the day. When I try to sleep in, it feels almost impossible, like my body is wired or full of adrenaline. Sometimes I wake up in the middle of the night feeling anxious and nauseous. During the day, I also feel more anxious than usual. This has been really uncomfortable and scary because I thought magnesium glycinate was supposed to help with sleep, not make it worse. Has anyone else experienced insomnia, anxiety, nausea, or an “adrenaline” feeling after taking magnesium glycinate? How long did it take to go away?

have Addison’s and a history of severe infections and hospitalizations. Every time I get even a mild symptom a little sore throat, some fatigue, literally anything my brain immediately screams “this is it, you’re going to crash, you’ll end up in the ICU again.” And then the panic hits, hard. Nausea, shaking, the works. And I can’t tell anymore what’s a real physical symptom and what’s just pure terror.

Today it’s a super mild sore throat. Temperature is 37.0°C, BP 133/88, I can eat and drink fine. I already updosed a bit (I’m on Plenadren 30mg, took an extra 10mg hydrocortisone as a precaution). Objectively I know I’m okay right now. But my body doesn’t care about objective. The fatigue is crushing and the anxiety makes me nauseous, which then makes me more scared because nausea can also be a crisis sign… it’s a vicious cycle.

have Addison’s disease and switched 3 days ago from 30mg hydrocortisone to 30mg Plenadren.

Still adjusting right now. I still get some fatigue and headaches sometimes, especially if I do too much, but no real crisis/red flag symptoms.

What shocked me though is that after years of low libido and ED issues, since starting Plenadren it suddenly all came back almost like when I was a teenager again. Stronger erections, random libido, morning wood again, way more sensitivity, etc.

I honestly didn’t expect that at all, especially because it’s technically the same dose (30mg vs 30mg).

My guess is maybe the more natural cortisol release is helping hormones/dopamine/nervous system stuff compared to normal hydrocortisone peaks and crashes.

Has anyone else experienced this after switching to Plenadren?

I'm 22M with Addison's. A few weeks back I had a stomach bug that triggered a crisis, got hospitalized. A week or two after discharge my endo checked my renin, it was 6.98, so he bumped my fludro from 62.5 mcg to 100 mcg. I didn't think much of it and kept going. Within days my BP started spiking, hit 166/99, my face was flushed red, I was having panic attacks and feeling this constant sense of doom, even had suicidal thoughts which is not me at all. I was a mess for a whole week. Tonight I finally put it together: he measured renin way too soon after the crisis while my body was still recovering and probably still depleted, treated a temporary spike like it was my new baseline, and threw a 50% fludro increase on top. The insane salt intake just poured fuel on it. I feel so stupid for not seeing it sooner but also pissed because this was avoidable. I'm switching endos, going to Groningen UMC instead. Don't let them jack up your fludro right after a crisis without rechecking when you're actually stable. Also don't eat like a salt goblin on high fludro unless you want to feel like your head's gonna explode. Anyone else had their renin taken too soon and ended up over-replaced?

Does anyone else notice their tinnitus gets WAY worse during periods of anxiety/stress/panic?

The last couple days I’ve had a lot of anxiety and hormone/stress issues and my tinnitus suddenly became much louder, especially in one ear. The weird thing is it fluctuates a lot. Sometimes it’s almost gone, then later at night it becomes so loud I can barely focus on a YouTube video.

My hearing itself seems normal overall, which is reassuring, but the ringing gets super intrusive when I’m stressed or hyperfocused on it.

Just wondering if other people here experience the same thing where anxiety seems to massively amplify it?

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.

Hey everyone,

I’ve got Addison’s and I’m trying to figure out if what I’m dealing with right now is something others have experienced or if I should be more concerned.

My baseline condition wasn’t great to begin with, but about 6 weeks ago I had a really bad stomach bug that actually put me in the hospital for over a week. Then about 2 weeks ago I got hit with the flu. Ever since all that, it feels like my stamina and overall condition just got completely wiped out.

Right now it’s honestly pretty extreme, even taking a few steps can leave me out of breath, and I feel way weaker than usual. It’s like I got pushed back to my worst baseline (or even worse). I’m still taking close to double my normal hydrocortisone dose as well.

What’s confusing is I went to the ER yesterday and they checked basically everything. Heart and lungs were fine, blood pressure was fine, temperature normal, no signs of infection at all, and all my electrolytes came back normal too.

Has anyone with Addison’s had something like this after back-to-back illnesses? Like your body just doesn’t bounce back and your energy/condition just crashes hard? Is it normal after 2 times getting sick people with addisons have to recover much slower?

How long did it take for you to recover, if you did?

Appreciate any experiences or advice.

I’m 21 and have Addison’s (on hydrocortisone + fludrocortisone).

About 9 days ago I had a mild cold/sore throat, nothing major. A few days ago I felt fine again so I went out and walked around the city for about an hour or two and Ever since then I’ve been completely drained.

I can eat and drink normally, no fever or vomiting, blood pressure seems okay and my resting heart rate isn’t high.

But as soon as I move, even just a few steps, I get really out of breath, start sweating and feel a pressure on my chest. My whole body feels like I just ran a marathon. It’s been like this for about 2 days now.

I already doubled my hydrocortisone dose, so that’s what confuses me. It doesn’t feel like a typical Addisonian crisis, but something is definitely off.

Has anyone with Addison’s or after a virus had a crash like this? Could it just be post-viral + overdoing it, or should I get this checked urgently?