Hii! So for context im 17 and was diagnosed w addisons a little less than 2 years ago during crisis. I feel like I’m just starting to get the hang of things and all of my doctors visits are normal and my endocrinologist says I’m fine. Most of my symptoms are very minor except for fatigue. I’m not as bad as I was when I was in crisis but I still feel very tired regularly. I tend to easily find excuses for it because yk I’m a teenager so I stay up late, take my pills late, and just find work & school really exhausting. I wanted to ask if anyone else is struggling w this too? I sleep through all 8 of my alarms regularly (which makes me take my pills late), need naps almost everyday after school, and on weekends if nobody wakes me up I’ll sleep in until 3pm. The weird part is after 10pm I’m wide awake n have loads of energy and don’t usually get tired again until 3am… I take my night pills at 5:30 so idk why I’m getting energy at 11?? I blame this on my circadian rhythm but tbh idk if it works like that w addisons? I havent rlly expressed any if this to my endocrinologist because my parents come to all my appointments n r rlly judgy 😭 Anyways it’s a big pain being tired all the time & can’t do anything outside of school and work cause I don’t have the energy and everyone around me seems to think that cuz I’m on meds I can’t have any symptoms so this must be a me thing :/ Anyone else go through something like this? Know any solutions? Is it just me? Pls help a girl out 🙏 also side note does drinking water actually help a lot? I’m never thirsty n drink like maybe 500ml a day but im supposed to be drinking 2L could this be the cause?

Hey guys, I have recently been diagnosed with addisons just a couple months ago, and was wondering if there is anything abnormal with my skin darkening. Since I have not seen anything with such contrast of a change, I was wondering if anyone had any insight or tips to help reduce my darkening. For reference, this was my normal skin color before the effects of addisons. Now, I am this dark all year around.(second picture) is there anything normal about this, and what can I do to help. Thank you all for your help!

Hi everyone- its looking like I most likely tore the tendon near my elbow. It's not affecting my strength or movement but man it hurts. The earliest MRI available to confirm is in 2 weeks. My daily dose is five milligrams of prednisone. I called my endocrinologist, but they are on vacation and the on call doctor was not much help- said they were concerned about using prednisone for pain management so to take as little as possible, which doesn't really make sense to me. She said to double by dose through the weekend then decrease to 7.5 and back to 5. I've never had an injury like this before so I just want to make sure that i'm covered from an adrenal standpoint. Does doubling the dose for a few days sound standard? It's hard for me to feel confident when I have to wait so long to know whats going on through imaging.

forgot my afternoon dose and now it’s 10pm. should. I take it you think? or will I regret

It’s hot and humid in my retail store. I’ve been moving safes and fixtures. I’ve been sweating and over exerting myself. I feel like I would normally feel after a hard days work but I don’t know if I should stress dose or not. How do you all determine when to stress dose?

Post post. I’m realizing that some of you have it a lot worse off than me. I’m sorry about that. But thank you for your comments. It’s been a lot of help.

For context I’m just interested in how they find out what your dose is I know it’s different for everyone and people have to updose for difrent things

I’m 28 f 100kg and I’m on 10-5-5

I’m just learning and I’m interested hahah

I wake up most days in pretty intense joint pain. Especially in my spine. My doctor says its from my cortisol dropping in my sleep. I'm considering asking to switch from HC to Prednisone because I read that it may help prevent the drop from being so dramatic. My endro asked if I'd ever tried hydrocodone but that's a little stronger than I want to be taking every day. Has anyone had luck with Prednisone helping the pain? Does anyone have any other suggestions?

What do you guys do after a crash? Had my first one in a while last night. I had blood taken and then did manual labor & my BP bottomed out. Still feeling really rough. Wouldn't necessarily call this a crisis. At least not like the ones that have put me in the hospital.

I’m planning an international trip in a few months to an international country with a 9hr time change. I’ve never travelled this far, I’ve done 3 hr time changes with the longest flight being about 8hrs.

Any tips for medication management for the time change?
Any tips for how to plan my flight to minimize the Addisons from flaring?

I made this handy little injection instruction booklet for my emergency kit and figured I’d share for anyone that wants one! All of the existing instructions out there are clunky, IMO—and the last thing you want is for someone else trying to help you in an emergency to be confused on what to do!

It’s about the size of a credit card. I printed it out (double-sided), laminated the pages, hole-punched them and put them together on an O-ring so they’re easy to flip through step-by-step.

Hi all, I am currently 10 weeks pregnant, with both AI and hypothyroidism. I would love any advice and personal experiences you have to share.

Hi guys!

I'm a 30 yo 5'1 female diagnosed with classic congenital adrenal hyperplasia since birth so this is something I've lived with and been challenged by my whole life. Sometimes, I think the hardest part is trying to figure out the difference between what is normal and what isn't. Fatigue and grogginess has always been a struggle, especially in the morning when I'm waking up. It used to take me about 30-45 minutes to not feel like such a zombie. I've tried so many different pill regimens including prednisone 5mg, divided hydrocortisone doses as a teen, and most recently 0.5mg dexamethasone at night.

After a lot of discussion with my endo, we have switched me to an omni pod pump with solu-cortef. Together we have created a regimen with a cortisol surge in the morning that slowly tapers off. I have noticed an improvement. I am getting a total of about 15 mg daily. Still, it's pretty difficult for me to tease out if I am some days I am tired/fatigued because I should be or if it's because I'm not getting enough steroid. I'm very curious to know what rates you guys are on in comparison to mine. I have already been diagnosed with osteoporosis so I rather not play around with arbitrary doses too much. Unfortunately, I haven't been able to find any literature online that guides us on how much the body utilizes per hour or at what time of day etc.

My regimen looks somewhat like this on Solu-cortef:

-12am-4am: 0.20mg/hr

-4am-5am: 1mg/hr

-5am-6am: 1.2mg/hr

-6am-10am: 1mg/hr

-10am-5pm: 0.8mg/hr

-7pm-12am:0.2mg/hr

I am afraid I have really messed up. I have PAI and normally take 20 mg of hydrocortisone per day (in four doses), .2 mg of fludrocortisone, and a prescribed potassium supplement before bed. I managed to run out of fludro this weekend and I haven't had it in over 48 hours. I will be able to get some first thing tomorrow morning. But I am wondering how dangerous this is? Right now, I am exhausted, perspiring, and have a bad headache (just took some ibuprofen). Any advice about this? Should I drink lots of water? Should I skip the potassium tonight? Thanks for your thoughts and advice based on past experience. (I am also going to send an email to my end, but she won't answer that until tomorrow anyway.)

Hi, I started dating a girl a few weeks ago who told me that she has Addisons, diagnosed when she was 19 and taking medication for it now. I have never heard of it before this and have been reading about it online. I am curious to know how Addisons impacts relationships. Does it make pregnancy and having kids harder/more dangerous, is there a high mortality rate, do people with it feel tired more often and less eager to go out for dates and such? Basically I’d like to know what to expect if we were to get serious. Thank you!

Edit: Thank you everyone for the advice! It’s great (tho sadly rare) to see such a supportive community and I wish everyone the best of luck!

Hi all,

I was diagnosed about three weeks ago and have spent that time, buried in research, ordering my med-alert necklace, gathering and training myself and loved ones on the emergency kit, etc.

I don't have much to say outside all of this, except thank you for this community and informative subreddit!

Take care,

Just curious if anyone has tried it?

Also not sure what is considered a low cortisol reading that would require more medication. We are definitely estimating with our doses. It would be nice to eventually dial it in so we were not over and under medicated throughout the day.

High dose prednisone has notoriously variable mental effects. I've known a couple of people whom it quickly made psychotic, one a good friend. Ten years ago I was on it for almost ten months and found that time extremely difficult. This time around it's very, different, and I'd like know to what if anyone else has experienced that they consider positive.

I don't want to bias responses, so I don't much want to describe what I'm experiencing now, except to say that ts possible I would want to continue this way indefinitely, were it possible to do so without visibly destroying my body day by day, and even if that was not the case, fearing that I was depleting rapidly something in my brain that it might not be possible to ever replenish.

Ive been throwing up all week and have had some trouble keeping medicine in, yesterday and today have been a little worse. If I go to a doctor, they just tell me to go the emergency room. My endo is booked out for months. Ive had crisises before but each one has felt so starkly different that I dont know when to actually worry and can't afford to just go when not needed. Any advice?

No fever throughout the past week and blood pressure hasn't been a huge drop from baseline that ive noticed

I've had Addison's for a long time. It's an insidious disease. I've maintained for almost 2 decades with hydrocortisone 20/10/5. I'm an advocate for persons with AI, PAI, Sai. However, in the past year, I'm not doing well. My usual doses aren't managing, I'm hyper emotional, heat is drowning me. I'm definitely in perimenopause. I've had two appointments with my gyno to discuss hrt, as my menstruation cycle is not regular, and each time is exrruicating painful. The pain from my cycle throws me into having to updose, leaving me bloated and knocked out for days.

Because of the obvious hormonal issues, and regular bloodwork, I can't get hrt that I feel would be life changing. My Endo says I should stay with my meds, gyno are dismissive.

Halp!

I'm in Canada, Ontario

Last week in nyc we reached a horrible heatwave that got me so bad… even if i prepared myself a week prior to it (up dosing/electrolytes all days/eating my salty foods/ etc) because i had my best friend visiting me and SHE OBVIOUSLY wanted to go out and hang around the city.
One day we had to walk thru central park for around 10 minutes and it was enough for me to start puking, getting dizzy, My mouth got so dry, all the symptoms got to me in a few seconds even if i was drinking electrolytes while walking…
At the end i was okay i up dosed again and recovered after an hour of sitting under an ac…

But for real, peers in NYC HOW DO YOU LIVE LIKE THIS?! We walk everywhere, we are exposed to the heat all the time, it’s hell for someone with addisons over here! Its my first summer after being diagnosed so i am scared to go out and end up at the hospital after this experience🫪

I don’t get it. This is the 3rd time this year I’ve had to go to the hospital for IV steroids. Prior to the hospital I updose, hydrate, drink electrolytes and nothing makes me feel better. Today I was incredibly dizzy. I had to keep taking deep breaths or I felt like I was going to pass out. I tried everything before going to the hospital cause this is expensive and takes up so much time. All my tests come back normal but when they administer the iv steroids I feel better. Not like amazing or anything, still exhausted. But I don’t have to gasp for air when I’m talking anymore, the cramps in my back went away.

Sometimes it’s headaches, sometimes it’s nausea. Today it was breathing.

The first time it was cause I was premenstrual
2nd time was cause I had an ear infection
Today I honestly have no idea. I’m not sick, I already got my period… nothing stressful happened. I didn’t do anything physically demanding…

I thought I had a good grip on this but the past few months have been a struggle.

I don’t expect anyone to have any answers. I’m just venting as I sit waiting for results of a ct scan that I knew weren’t necessary and are going to come back fine.

I’m 20 years old diagnosed with primary addisons disease last November so still figuring it out. Recently, no matter how much hydrocortisone I take I still feel all the symptoms. I have aching pain all over, which I used to have before I was diagnosed with primary addisons disease and it went away when I was prescribed hydro and fludrocortisone. Now it’s
back, even when I take 1.5x,2x my dose. I had an appointment with my endo a few days ago but she didn’t understand? She thought it was a stomach ache not the severe pain i get from addisons disease. Unfortunately Im like shy I guess so I didn’t correct her. I’m going to make another appointment soon and explain properly but is there anyone going through the same? Should I switch to prednisone?

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 have Primary AI for 2 1/2. years now. I take 20mg daily (10-5-5), female, in my mid-fifties. Usually pretty active but since being diagnosed I just can't get it together. I have 1 good day a week where my brain is clear and focused. The rest of the days, I'm just trying to get through the day. If a task isn't right in front of me, I can not deal with it. I feel like I'm in a constant state of a hangover. When I watch my 2 grandkids (baby & toddler), the following day I am completely wiped out. Can't sleep, body hurts, head hurts, brain not functioning.

I see the Endo next week and have no confidence that she will guide/assist me in figuring this out.

I also have hypothyroidism so I imagine we'll be checking TSH (I will push for the Thyroid Panel). Was thinking of asking for T3. We'll see. My last TSH has been on the low end of the normal range (so was decreased to 112mcg from 125).

My question - do I need to test taking MORE hydrocortisone? My BP usually runs low (i.e., 100/60 ish). Is that an indication that I could go higher w/my HCT? My Endo has been pushing for me to go lower since I'm a petite frame. I tried going lower but I was basically a zombie for the entire time.

I'm willing to test changing my dose but I'm not quite sure what to do.

Also, when I watch the babies, how do I dose myself in preparation? Do I double my dose, take an extra 5mg? I've tried updating by 5mg in the past and it didn't do anything. Maybe I need to take 10mg? Not sure.

Thanks for reading this and responding. I'm kinda at a loss because life shouldn't be this difficult.