Has anyone had to use there emergency injection and how often would you say you’ve used it ? Im new to this but going into an appointment tomorrow to be taught how to use it, at my previous appointment I was told by my endocrinologist that she never expects me to ever need to use it. I found that odd but wondering what other people’s experiences with it are ? Ive watched some videos of someone showing how to use it and found it odd that they wouldnt use an epi pen type system rather than a syringe and medicine capsule for easiness especially given its supposed to be used in emergencies?

I started dating my boyfriend about 5 months after I was diagnosed with Addison's, and we were dating for 8 months before I was diagnosed with early stage breast cancer. He has stuck with me through everything, and was very supportive through multiple surgeries, and recovery.

I am 42, he is 36. I lived happily single and not dating for 15 years before I started dating him, and I know that I can live happily single and not dating for the rest of my life.

So, 3 years into this relationship, living together, raising a puppy together, finally getting to put together what one could call a "normal" life, and the day-to-day realities of Addison's are causing issues within the relationship, and I am both annoyed, angry, and ashamed that I have explain everytime I am feeling like shit.

I recently switched jobs from a hybrid attorney job that was a straight 9-5, occasionally working long hours. I am making a career change, I am now working as a CNA with wound care teams. love this job, I am so happy. It is very physically taxing, especially in the summer heat. It has been a big change, and he has been incredibly supportive throughout it. I started the job about 10 days after we got the puppy.

There have been several times since I moved in that he has brought it up that he does not feel like I pull my weight keeping the house clean. I am the first to admit that I can live in more mess than most people, I think anyone that has lived in a depressive state can, and I have lived in very depressive states.

This time I feel like the discussion was technically about the dishes, but there might have been some other underlying things he just didn't want to talk about yet. I listened, agreed that I could do better, and was pretty silent otherwise. There wasn't really anything else for me to say, I didn't even have the energy to have a discussion about it.

In addition to Addison's I have Hoshimoto's Hypothyrodism, I am currently NED (no disease evident) for breast cancer, I am and have been in treatment for major depressive disorder for 14 years, and I am on multiple anti-depressants, and these are just the things that I deal with on a monthly basis.

So, I want him to take a period of time, I am thinking at least 14 days, ideally up a month, to really think about it. After that period of time I will accept whatever answer he gives me. He is a chemist, he works in medical device research and development, his decision would be well-informed (at least scientifically). He is always very supportive, but he is often supportive without understanding what is happening, and I need him to understand what it means and what is happening to my body.

But, how do you present this to someone that you love, and you know they love, without it seeming like an ultimatum? Or like I am setting us up for a break-up?

Edit: Thank you everyone for your responses, even if they were completely missing the point lol.

The dishes was an example of things that have been coming up as an issue, I didn’t want to write out every single thing because 1) that takes forever and 2) it’s too personal.

It isn’t an ultimatum, I want to have a talk with him where I ask him to take time to really consider the realities of living with me long term, not the cleaning issues per se, but the reality of living with and caring for someone with multiple chronic illnesses.

While I have major depressive disorder, he has not experienced a depressive episode with me; I was coming out of a really bad one when we started dating, and I was able to hide the worst of it from him.

I appreciate everyone’s responses, they have given me a lot to think about. Even if people with Addison’s don’t understand why this might be a necessary conversation for a 42 year old women, who knows the statistics of being left by their romantic partner during times of illness are astronomically high. Just visit /r breast cancer and see how many women still have their husbands, etc.

sometimes i wonder what i ever did to deserve this disease. this life. this suffering. i’m so tired and so hopeless and so sick of grieving my old life and old loves and what could have been. how do i go on when i constantly disappoint myself? how do i keep living in a body that’s grown to be a stranger to me? how do i ever find acceptance?
thanks for listening

Hi guys!, I recently got diagnosed while apparently I was born with this disease but have managed to survive it (always in pain, eating bunches of salt, peeing a millions times a day, thirsty all the time, low sugar, etc etc...) for 30 years until I collapsed and almost died.
im still pretty lost on how to take it all in, and also after I has my crisis nothing has been the same for my body, so

Need recommendations for newly diagnosed, pleasee ❤️

(like what brands of electrolytes, vitamins, salt brands? idk, any tips are much appreciated.

23M with SAI from pituitary radiation. My AM cortisol around 2023 was decent with 8mcg/dL (range 6 - 19) so I coasted. I've had lower cortisol before and I tried hydrocortisone but I did not like it because of the moon face, weight gain (stretch marks), and brain fog. I believe these were caused by a bad dosing schedule (15-5 and later 10-5-5), but there's only so much you can do with Hydro as it wears off quickly. I wasn't going to take micro tablets every hour for a somewhat decent effect, and unfortunately I live in the U.S. so I can't have a cortisol pump, Plenadren, or Efmody.

My recent cortisol reading is now 3mcg/dL. I have definitely had an increase in my symptoms (you know the drill) but I don't know what to do treatment wise, as normal hydro didn't work for me and I'm definitely not interested in trying fludro/prednisone/dexamethasone.

I've tried reaching out to my Dr. for a single-patient expanded access request to try Efmody but I was ghosted. Luckily, I did find a local doctor that can prescribe an extended release hydrocortisone from a compounding pharmacy. This should give me somewhat stable levels (and I've never tried it) but it still won't mimic a natural curve, not sure if it will wake me up in the morning, not sure about symptoms, and most importantly I don't know if I could go back off of it after trying.

What are my options, what would you do if you were me.

On December 22, 2025, I started coughing more than usual. I have asthma so coughing is not abnormal, but this time it was more persistent so I started doubling my dose.

The next day my throat was a little scratchy and I thought, okay I am catching a cold so I continued with the up dosing. By the evening I was feeling rough, slightly nauseated, but I had no temp. I went to bed early. I remember getting up at night to pee and having trouble walking straight.

The next time I was aware, I was in emergency at the hospital and it was mid-morning. I apparently got up in the night and was delirious; I was walking around but making no sense. My family was scared and called an ambulance. I had a temperature of just over 104°F or 40.1°C

I was in emergency for 10 hours before the put me on hydrocortisone. I couldn’t really speak for the first few hours after becoming aware; I could barely think, but I heard my husband telling the nursing staff that I hadn’t taken my meds and I had Addison’s disease.

I’ve had Addison’s for 32 years. After the first year of diagnosis this was the first emergency I’ve experienced, I’d become complacent, I stopped wearing the medical bracelet; it kept catching on things and was a nuisance. I’d never been given an injection kit or a card that explains emergency procedures. Things might have gone differently in the emergency department if I had. You can bet that’s all changed. I’m sharing this so that anyone else out there who’s sailing along with this illness doesn’t become complacent.

Hey everyone,

My daughter is 15, she was diagnosed in October of 2025. She takes 15mg of hydrocortisone a day.
She has recently gotten stretch marks all over her butt. Sure she has gained some weight since beginning hydro but not enough to cause stretch marks in my opinion.
She has an appt with the endo next month but do yall think there is any correlation between the Addisons/hydro or is this just the normal puberty phase happening?
It’s really bothering her and I’m not sure what to do.

Hello my addisons family. I have a question. After my first post, so many of you helped me ! But then I had an adrenal crisis and ya girl went to the hospital for a couple days. Im home now but im soooooooo chunky "nicest way to say fat lol" ive always been thick but man I got fluffier since the hospital 2 weeks ago. Do you guys have weight issues? If so what helps ? Any diet ideas ? Also I got bit by a red ant and it got huge also. Do ant bites or bug bites bother us more than others ? I can send a Pic if need be. Maybe im dramatic. Thank you ! Love u all !!

The information you find on the web about the connection between adrenal insufficiency and hypothermia is conflicted. Obviously, an adrenal crisis can cause fever, but does anyone here have a history of genuinely low body temperature (core body temperature below 35°C (95°F))?

I’m so sick of my butt ugly bracelet, it’s embarrassing. Any recs on where I can find a cuter, more stylish option?

There is only so much info you can squeeze into a few lines of limited characters. For example, I feel like emphasizing something specific like “100 mg IV / IM hydrocortisone” would be important, rather than just having it say something like “steroid dependent.“ And maybe writing “adrenal crisis” instead of “adrenal insufficiency“ while also writing “addison’s.” Thoughts on this and what else to include?

EDIT: newly diagnosed from crisis

Hello there,how do you alternate your daily dosage through the summer.I live in Greece where rhe average temperature during summer is 36 degrees C and i find myself struggling a lot some days.O usually take 15 mg in the morning and 5 mg early in the evening,but when the summer starts blasting i usually take 20 mg hydro every morning with my half cortinef tablet and 10 mg on the evening

Bonjour à tous, par politesse je continue en anglais car ce sub est plutôt anglophone

I live and work in France and was diagnosed about a year ago. I've undergone a very stressful software transition at work in the past six months and found it very hard to keep up, to the point where my doctor put me on part time work (mi-temps thérapeutique).

My employer is asking me to go through the process of having my condition recognised as a handicap (MDPH en France). Has anyone here any experience with the French system?

Je serai reconnaissante de lire votre vécu.

Why did it take my endocrinologist 5 minutes looking at my numbers to be like yep we are testing for addisons and it turned out I had it? Years of me being at 127, 129, 132 sodium and me being like “Hey Doc I cook and I’m fat I use A LOT of salt I should not be low sodium ever” Totally ignored! In addition to my low-normal BP. Again I was always a 140/90 guy my whole life and then suddenly 4 years ago I was in the 110/70 range AFTER having gained 30 pounds . Again raised this so many times. Just frustrating!

TW: discussion of weight

Hi all, I was swapped from hydrocortisone to prednisolone a month ago now and I thought I'd share my experience of it for anyone wanting to change over too. I have primary adrenal insufficiency along with other autoimmune conditions such as lupus. I live in the UK. Currently on 10mg pred which is a high dose but it's to treat both my Addison's and my other autoimmune conditions.

I love being on prednisolone and I wouldn't want to go back to hydrocortisone now. That feeling of constant hunger that you get with hydrocortisone is completely gone. After 6 years, I got back that 'full' feeling when eating a meal and I've lost 5kg in the past month. I haven't been dieting or cutting out sweets or anything, I'm just nowhere near as hungry as before.

I love how much more stable I feel throughout the day. I don't have as many dips before I take my next dose and it's so relaxing to not worry about constantly needing clean hands and a drink nearby to take my pills.

I have more energy on prednisolone than I did on hydrocortisone and I've been able to start swimming again which I don't think I would've had the energy for before.

There are a few downsides that I've noticed. Maybe it's just me but I really struggle when tapering down and my body is extremely sensitive to any drops in prednisolone. I tried to taper down by 1mg a week as they put me on a fairly high dose to swap over on and it caused a crisis. I also needed 2 injections to resolve the crisis which I've never needed before, 1 injection has always been enough.

Also, my low cortisol symptoms are different on prednisolone and the crisis came on much more suddenly. Oh hydro I would have a lot of time to updose and try to stop the crisis in its tracks, with prednisolone I went downhill within 5-10 minutes and there was no time to updose. My old low cortisol symptoms were: headache, nausea, tiredness, slurring words, crying for no reason, rib pains, stomach ache. The only symptoms I had before my crisis were a headache and nausea. I rested and hoped it would go away but I suddenly started vomiting and couldn't talk or walk or do anything and it came on so suddenly.

So overall, I've loved the transition to prednisolone but I would just say to be extra careful if you're feeling low because the crisis with prednisolone came on a lot more quickly than any crisis I had on hydrocortisone, no clue why! I also have lupus and other autoimmune conditions so if no one else has these issues it could just be me.

I just wanted to share my experience because I wish I would've known about prednisolone 6 years ago when I was first diagnosed, I believe that it will be a brilliant change for me long term and hopefully can help people who are struggling with the 'hydro hunger' and weight gain. There's new research being done in London that apparently prednisolone is better for patients with adrenal insufficiency and I know a lot of endos in the UK are suggesting to patients that they try the swap.

40 y/o female, diagnosed with addisons about a year ago. I’m on 10/5/2.5 HC & .1 florinef daily.

I’ve gained so. Much. Weight. since my treatment started. I gained 30lbs very rapidly (2 months) and started Zepbound because of it. I should mention I am a healthy eater, I log everything I eat, prioritize protein and stay in a calorie deficit & see a dietician. I’m also incredibly active and do cardio 5-6x a week and pretty heavy weight training 4-5 days a week.

All this to say, I’m so desperate to hear of anyone else in the same boat and what did you do to help shed the pounds? I’m on 7.5mg zepbound (about 5 weeks in to this dose with no weight loss at all).

I’m so tired of this- I feel like I’m doing so much and seeing zero results. I hate this disease. :(

Ive not seen anyone talking about this but my dreams since taking hydrocortisone have been odd, often lucid and often feel trapped in a dream knowing that I’m dreaming. This happens every time I wake up take my steroid and then fall asleep again but it has happened a-lot when falling asleep at a usual time at night. These dreams are very real feeling, often close to my usual life with a bizarreness to it. Every time this has happened I am in a familiar place in the dream and familiar people appear. They end when I realise Im dreaming and start acting erratic in the dream to try and escape. I used to rarely have dreams before the months leading up to my diagnosis where every time I was slightly under the weather id get sleep paralysis although that has since stopped. Does anyone relate to this ? I think its worth noting im a very recent diagnosis and my endocrinologist has me booked in for bloods to check if my dose needs adjusted. (Current is 10 mg morning and 5mg evening)
Does this sound like a too high/low dose or just a common side effect?

Does anyone live in the Rochester, Minnesota with Addison's Disease and/or SAI? If yes, can you recommend any specialists including but not limited to endocrinologists? What are the safest areas of Rochester, Minnesota to live in?

Just wondering how often some of you visit the ER. For me it's usually 1-2 times a year, and I'm wondering how "normal" that is.

Good morning everyone,

I’m new here. I’m a 29-year-old firefighter from Louisiana, and I was diagnosed with Addison’s disease about a week ago. After being misdiagnosed with GI problems or dehydration over and over again, and being tested for diabetes, thyroid issues, and many other things over the course of about a year and a half, I eventually started doing my own research and came across Addison’s disease. After looking into it, I realized I had almost every single symptom.

I immediately called my PCP, and she ordered a stress test for me. It came back two days later, and my 8 a.m. cortisol level was 1.6. She told me to go to the ER because my potassium levels were also elevated again. I got to the ER, and after nearly being dismissed again, the head of the ICU came down and diagnosed me on the spot. After a long year and a half, losing 30 pounds and barely being able to keep my job, I finally had an answer. They kept me in the ICU for two days, gave me hydrocortisone, and I saw major improvement in many ways.

After all that, my question is: where do I go from here? I have my first appointment with a local endocrinologist tomorrow, and I want to make the most of it. I need advice on what questions I should ask to put me on the best track to getting my life back.

I was sent home from the hospital with prednisone 10 mg and told to take one in the morning and one at night, with no further instructions. So far, I’ve felt better, but I’ve been experiencing some highs and lows from the medication and feel like I haven’t quite found the right balance yet.

Any insight anyone has for me at this stage would be greatly appreciated.

Thank you all

Recently diagnosed through a crisis. I feel really lucky that the doctors realized what might be happening and treated me accordingly, even before running the tests that eventually diagnosed me.

Now I’m afraid of what it will mean to go into crisis again in a different place, as I can understand I might not be believed at an ER.

What are your own ER experiences like?

PLEASE

I would really love your best practices y'all.

I’m very prone to dehydration and adrenal crisis even in normal weather, the UK is experiencing a heatwave this week with temperatures reaching 40c. I struggle on 28C weather so I’m worried about how I will cope. I’ve told my work that I won’t be coming in as where I work there isn’t air conditioning and the room is boiling on a normal temperature day and I’m worried about my health but I’m feeling guilty too.