r/AddisonsDisease

Does anyone else get fatigued/ insomnia due to AI. For context I was feeling fine yesterday but I may have had a little bit less to eat than usual. That’s why I drank a glass of milk before bed and then slept. Flash forward to 1:30 I wake up am I have all the hypoglycemia symptoms shaking ect. I get up and ate some because that is what I felt like I needed. But it didn’t get better I felt chronically alert and needed to eat some more. I also have tinnitus and visual issues which I suspect is tied to cortisol but the ringing was insanely loud. It was like I couldn’t sleep even If I tried. Eventually I would get this jolt of fear and wake back up. This has happened before and I always feel like crap after. But always without fail whenever this happens I get this headache that feels kinda like a migraine and also my head feels difficult to keep straight. I am also hypothyroid and my endo decreased my dose due to being in lower ranges but this always happens to me along with jolting pain throughout my body. Does anyone else get these symptoms and what do you do to combat this?

For those of you with a confirmed Addison's (or SAI/TAI/CAH) diagnosis, AND (unfortunately) an adrenal crisis in which you recovered with a full emergency dose....

I'm curious to know what your own, personal, possibly oddball signs are.

As an example, my own "textbook" signs were initially just fatigue, which is so non-specific, as many of us know. But within 30 minutes, I can get to being loopy/tipsy, clumsy, high or low blood pressure, cold hands & feet, or breaking out in a full body sweat. Within an hour, I can be facedown on the floor, unable to move any of my limbs, eventually unable to speak even though I can vaguely tell what's going on around me. *shudder*

But then another Addisonian mentioned they would get this numb mouth and puckered feeling on their face as one of their low symptoms, as if they've been sucking on a lemon, and suddenly I realized I have this, too! I would never have known to add this to my list of warnings, if not for someone else mentioning it. It sure isn't in the endocrinology manual!

So, if you're willing, list your "not on the list" symptoms and maybe it'll help another Addie out, like that one did for me.

My doctor told me by 35 I'd be done, and within 6 months of turning 35 I:

Gained 20+ pounds

I get night sweats daily

I'm foggy, even with HC

Tired, sore, drained

I've had my period every 2 weeks for at least 4 months

This has happened to me before, except for the gain. Has anyone else gone through this? Adrenal 1 for 5 years, Hashimoto's for 6

​

​I was diagnosed with Addison’s disease when I was just ten months old. Today, I am 23.

​My name is Haider, and my story began in Iraq, around the fifth or sixth month of my life—shortly after the 2003 American invasion. As the war raged outside, with bombings and chaos tearing through every corner, my parents desperately moved me from one doctor to another. For five long months, medical professionals failed to understand what was wrong with me, until a pediatrician named Dr. Mohanad finally diagnosed the condition. He told my family that I needed to be hospitalized for months.

​As the years went by, my life became a cycle of prolonged hospital stays. I vividly remember a doctor once telling my older brother that I might be at risk of Down syndrome; to this day, I still don’t understand the connection or why he said that.

​Because of all this, I never had a normal childhood like other kids. Instead of playing outside, I used to watch my peers through the window or from the rooftop. Most of my childhood was spent by the side of my father—a truly great man. Together, we would read the newspapers and follow the news. I would sit quietly, listening to him recite the Quran or read through his books, while I immersed myself in a geographical atlas.

​For all those years, I never had a normal childhood or adolescence; physical exhaustion would catch up with me at the slightest effort. The sun and the heat became my sworn enemies—and if you know anything about the Iraqi summer, you know it's not just hot, it can easily reach 55°C.

​As I grew older, my understanding of my illness deepened, and with that understanding came a growing sense of resentment and frustration. But everything changed in the summer of 2024. I was 21 when I collapsed and lost consciousness. When I woke up, a profound realization hit me: there was absolutely no use in hating my condition, and no point in resentment.

​I formulated a mantra that day, one that I live by to this day: “If you cannot change something, adapt to it, and move forward.”

​And that is exactly what I am doing. Today, I am on the verge of earning my bachelor’s degree in Arabic Language, ready to embark on my professional career.

​Accept. Adapt. Move on.

And finally apologies for any shortcomings in my English, and thank you for taking the time to read my story.

I cannot figure out why for the life of me I am SO shaky/lightheaded every day even after increasing my dose from 10 mg hydrocortisone in the morning to 15mg (plus an additional 5 mg in the afternoon + fludrocortisone). I got diagnosed a year ago, and the first few months I was completely fine on my first dose. WHY all of a sudden does it feel like I am randomly declining? Also, my endocrinologist is being so vague, I don't know if I am supposed to updose when I feel like this? But if thats the case, I would be updosing every single day!! HELP, is this normal? What do I do????

So I know we are supposed to updose when unwell. I have just been put on antibiotics for a wound infection. I feel well in myself - no fever or other signs of illness. Do I still need to updose?

Hi! I'm on the lowest dose of hydrocortisone I've ever been on and doing pretty good, so I thought I'd share my experience.

I was taking 20 mg hydrocortisone daily when I was diagnosed at 15, then 15, then 12.5, and even then my blood sugar was a bit high and I was getting moon face, so I'm finally down to 7.5 mg. I additionally take 5 mg DHEA, 0.1 mg fludrocortisone, and 20-40 mg omeprazole to deal with the acid reflux. I also specifically use Cortef.

I'm usually active pretty frequently, I ideally would be strength training several times a week. I have to look out for syncope in certain curcumstances (mostly waiting in lines, haha) but it's very managable.

I have no idea why I need so little hydrocortisone, but I'm feeling pretty great! My only issue is that I've been having nightmares lately, so I'm experimenting with a small dose at bedtime, but that's all.

If anyone else is on a low dose, I'd love to hear your experience.

Hi all.

I was diagnosed last year. Certainly feel infinitely better than I did pre diagnosis. Just not consistently.

I'm looking for any tips to figure out what is causing the dips. Meds timings? Nutrition? Fluids? Electrolytes?

Has anybody found any solutions to a more leveled out experience of the condition?

Side note: My endocrinologist is excellent, but I only see him once a year now. This community has been a great resource and I'm grateful to have found it.

What/where needles do you use for emergency injections. I put some gP1 weight loss needles with the solution in case its needed but i’m really not sure thats correct.

I was put on an off label drug for adhd that is a basically a norepinephrine and dopamine reputake inhibitor. It works in a similar way to Wellbutrin but is quite strong…in fact it’s used for narcolepsy too. The issue is that it feels like it’s tanking my cortisol. I have taken pain meds with no issue and I doubt dopamine is the cause but norepinephrine is basically adrenaline. Other drugs that increase this are stimulants like Ritalin, concerta etc.

Has anyone experienced this issue? My cortisol seems low every afternoon now. I did a search and it seems like some people take adhd meds without issue but I can’t think of another reason this is happening. I’m also secondary in case that’s helpful to know. Things like caffeine actually do help me a little when my cortisol is low.

My endo has been no help and my PCP is clueless. As usual. And doctors never consider my adrenal issues when prescribing unfortunately. I didn’t even know there were drugs that lower hydro efficacy until recently.

I have been taking hgh for around 6 months now before bed time and it seems to make my cortisol too low at night time while sleeping. My sleep has not been great because of this.

Has anyone had a similar experience and what did you do to fix it? Im currently on 15mg of HC per day, 10mg usually at 10 or 11am and 5mg around 5pm.

Hi all, how do you bring your emergency kit (solu cortef) when you are travelling by an airplane? Can you bring a needle also? Is a note from a doctor required?

Good times, right?

Three questions for ya:

1. How often do you get diarrhea?

2. Is your diarrhea from low cortisol or something else?

3. How do you typically treat it? Updose? Imodium? Just suffer through? If updosing - how much and how often? (Yes I know the sick day dosing recommendations - I'm looking for what other Addies actually do to treat it.)

Edited for clarity.

Hi, I recently was switched from prednisone to hydrocortisone and the dose I’m on is pretty high because it’s equivalent to what I was taking on prednisone. 🙃 I’m taking my doses 3 times a day which seems to be helping. My question is do you all have any tips on how to get through these next couple of weeks as I taper off this high dose of hydrocortisone and God willing get to a lower/better dose?
My knees have been hurting and I've had other effects but nothing as bad as I had with prednisone. I'm trying to take it one day at a time and remember this is temporary. I do have some swelling in my feet, face, and legs. My endo said I was most likely experiencing Cushing-like symptoms on pred so now my body is trying to adjust to hydro.

Update: I was able to slow down, but ended up about quadruple my dose. Today have held off a bit because I got delayed over replacement symptoms. Talking to a doctor soon about normal dosing.

I have been sick from iron infusion from 23 days. Very very sick. Barely eating, nausea, weakness fatigue, muscle cramps, so much more.

Got kidney blood test yesterday. Came back complete kidney failure (creatinine 500, gfr 9)

Called ambulance. ER triaged me wrong. Didn't see Dr, get fluids or hc for almost 12 hours. Dr. Was livid I was triaged like that.

Turned out to be lab mistake.

Kidneys fine.

Thought I was going to die.

Now home, having crash after crash. Severe. 25 to 30mg Hc needed Evey 2 hours or I am almost dying. Shakes, moaning from nausea, can't barely use my eyes. Feel like life is draining out of me. (normally take equivalent to 30mg hc using some Methylprednisolone)

I'm already at 105mg. It's nowhere near when I go to bed.

No signs of over replacemt. Always get hot cheeks, can't sleep, they are cold and I'm falling asleep.

Do I just keep going as needed? All day ans night?

Can't it be too much?

Can't go back to ER. They caused this.

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?

Hey everyone, PAI 21M here diagnosed in December. I was previously on 20mg hydrocortisone in the morning and 10mg afternoon, and my endo has been trying me on a different dose the last few days. I have been taking 15mg in the morning, 5mg at lunchtime and another 5mg later in the afternoon. So far I haven’t been feeling great but I find it hard to distinguish these symptoms from anxiety- slightly nauseous, dizzy at points and a bit of tiredness/muscle weakness. I’m wondering if anyone has anything they look out for when their cortisol is low but not 0? Thank you for your input :)

I have read extensively about Addison's disease from doctors and scientists and the consensus is that an adrenal crisis is a life-threatening medical emergency that always requires immediate medical attention. I've been attacked for saying that because some people believe to have had a crisis at home and survived it. According to everything I read and was told by different endos, you can crash at home and get over it by updosing, but in a crisis you need the hospital and preferably a 100 mg injection on the way to the hospital and then an IV to save your life. Because if your body goes into full fledged crisis, you are beyond the point where oral updosing is going to save you. Is it possible some people confuse crash and crisis? Granted, my definition of a crash is personal and based on my experience (low cortisol to the point of needing to rest a few days and hydrate and updose) whereas the definition of a crisis is not mine but the official one. I don't think we can become creative and make up our own definition of a crisis, right? It just confused me when people say they had multiple crises at home? My question is this: If you had one or more crises, was it confirmed by a doctor that it was in fact a real one and did it need immediate medical intervention? do we need a name for a severe crash that does not meet the medical definition? I would like to know we all mean the same thing on here when we say crisis

I was diagnosed with Meniere’s in 2015 but couldn’t handle the diuretics or the low sodium diet, which is the main treatment. When my blood pressure starts to get really low, I can feel it in my ears - feels like pressure. I started Advair (250/50) in 2018 which is what my doctor thinks may be causing my Adrenal Insufficiency, but the Menieres thing is weird to me. My hearing when from moderate to severe low tone hearing loss, but returned to normal after cutting out wheat/ after I started the Advair.

I have to drink a lot of sodium to keep my BP around 110/62 - my diastolic falls down to 44 range and usually the top number goes down to 86 even before (86/44-50’s) the Advair.

Wondering if anyone has had a similar experience?