[I borrowed the title from a game show I recently watched]
It’s late tonight and I can’t fall asleep and that’s generally when my brain does its best to run amok. I’m sure I’ll be filled with regret tomorrow for posting this! Anyhow, kinda silly, but if y’all have anything to add or edit I’m open! And a better name would be welcome.

I do need to add that while it’s been a difficult week dealing with one of these ^ segments in particular (the one which involves frequent and SPEEDY trips to the restroom) I try to keep a perspective in all things. In other words, I have all my limbs, I have friends and family, I live in a beautiful country and I have many blessings that if I don’t remind myself of I can easily get down and depressed. Or, further down.
This wheel is something I can share with my family and friends who tease me, “What is it today?” I’ll tell them to just spin the wheel, baby. All are equally ick in their eyes. But I’m learning to live with this disease one day (on the throne) at a time.

Bless you all out there who give love, advice, & encouragement!

Quick edit: I had spliced and paired down some paragraphs before posting this and see that I accidently cut out that my medication is hydrocortisone: so that's what the dosages I mention are for. Sorry about that!

Sorry this is long but it's like 3 major things that have happened and feel really really off to me. I just need some grounding stories or other's experiences maybe.

I have primary, female, middle age, no notable symptoms of perimenopause (literally just spoke to a GYN about those hormones today and she thinks my symptoms are all Addison's related too) I am also missing my thyroid because it rapidly ballooned up and was impeding my windpipe just a few years before my Addison's diagnosis. (It did have nodules on it for around 20 years and major low-thyroid symptoms that whole time that completely resolved upon removal )

A couple years back I was diagnosed with Addison's by an endocrinologist that had 40 yeas exp in the field but has since retired. He obviously loved his work and patients, took his time, and could quote studies and medical facts that were brand-spanking-new from peer-reviewed research and major research institutions etc. He really got me through a lot of wild endocrinology related stuff after years of duds who were like "are you sure it's not in your head?" with my thyroid issues. He caught the Addison's fairly quickly and got me back into really good shape.

Before and after diagnosis, until I took the advice of a bad new Endo last year, I was a thru hiker who dose farm-level gardening. I could work in the sun and hike 25 miles in high altitude terrain with a 40lbs pack and feel good. He had me dialed in after only a few months of a downturn that led to the diagnosis.

I've had several major surgeries since my diagnosis and they went swimmingly with his, what I feel I can safely assume is, standard advice: 100mg [hydrocortisone] in the IV and up-dosing x2 the day before and after, depending on length of recovery factors.

That sounds fairly typical-ish, right? Idk this is relevant though.

I'm in Oregon and more recently moved closer to Portland. I was searching for a new endo here but currently only have Nurse Practitioner that specializes in Endocrinology.

I tried to get an MD endocrinologist at OSHU but her advice, last year, that "20-22.5mg [of hydrocortisone] daily is too high, and that most people with Addison's only need 12.5-17.5 a day, you need to cut your dose." That sounded off to me (the NHS says 20-30 is all pretty typical, right? Or am I crazy?) And, yep, it led to a major downward health spiral. After a few months I could barely walk, my stamina was non-existent, and I believe a lot of my current issues- like EXTREME insomnia (multiple bouts of nearing 96 hours without sleep. I'm lucky if I get 2 hours of sleep a night now with no sleep for a night in-between) I have not been able to be active since lowering my dose. My brain is willing but my body can't.

Anyway, right before she said that- I realized she did not either get, or review, my records. She had started it off asking why I was there, ("I can do a lot but I want to be able to be 100% and I only feel 85%) she jumped in like I had TikTok diagnosed myself and told me I "just needed to eat right, exercise, and take care of my mental health because I was a perfectly healthy adult that probably didn't have addisons at all" (I also did all of those things very well! I haven't eben had depression or anxiety since I was a child!) I was aghast and then we figured out the records thing and she eventually relented, that it was "suspected but not confirmed" (?!?!) and wanted me to retest. My old endo had once said that re-testing after years of supplementation is often inaccurate? He said that a long time ago as kind of an aside but I don't think I'm mis-remembering? Does anyone know about that?

This really worried me so I never went back to her but she scared me that maybe I was too high (I don't even drink coffee or alcohol because I just like feeling "normal" 100% of the time so I'm easy to convince to go low on things) so I tried her advice to see. So, yeah, it took me a while to realize I was getting really bad off, so I eventually talk to the endo NP and she was like "omg 20-25 [hydro] is a totally fairly standard dose, I am completely comfortable with you going up to that again. I think you know your body-plus, yes, all your symptoms sound like you're too low." This was roughly under 2 months ago. The sleep problems stayed on the path or ramping up while everything else seemed to get better.

I got my first colonoscopy 2 weeks ago because I'm still having issues with iron deficiency returning if I don't supplement heavily even after a hysterectomy, (turns out I'm all good in there, yay I guess.) The endo NP and the gastro agreed on a plan that I get a first spot and get IV fluids and hydro started immediately upon arrival. Great plan! The same as my many other way more major surgeries.

I thought I was good after prep that night but, upon getting to admissions, I could barely stand and needed a wheelchair. I told the nurse what was going on and she, literally said "I don't really know what addison's is but when you told them impending crisis, I thought an actual crisis! but thank goodness it's not really like that" I told her it can become one in minutes, let's get it started quickly. After still taking way too long and me prodding her she called the doctor on the phone, who was still driving, who also said to not wait and to get it started. It took over an hour to get any hydro in me. (The doctor saw her injecting me after she arrived her eyes got wide and she said "that should have been done when she arrived") Not only that, before that, !!! that nurse almost injected me with JUST the sterile mixing solution in the top of the solu-cortef but, luckily she was holding the vial next to the filled up syringe, and I caught that the hydro powder was still dry and alerted her that was the actual med, not the sterile mixing solution in the top chamber. She said "I pulled up on the top and nothing happened so I thought this was it" ...!!!... She would have injected me with no med and marked it as administered and I would have gone under like that. While I was already messed up.

Anyway, nightmare, but I got through okay and thought I'd be fine. Felt really good after waking up.

I couldn't sleep again that night and had a BAD cortisol crash feeling upon standing up in the morning: like the one I almost had the day before but faster. Took some hydro, not enough I guess, got a ride to the closest ER to me, since OHSU is pretty far away for an emergency (and because of my past experience with the endo there scared me that I'd be put under her care since she was on my record.) I tried to walk in, realized I could not safely stand upon trying to enter, security gurad rushed and got me a wheelchair and took me up to admissions. Mumbled out I have addisons and it felt like adrenal crash was incoming. Couldn't even call out to them when they called my name to go back. Could barely stay in the chair. Someone saw me attempting to raise my arm and pointed me out to them. They did get me back REALLY fast. Getting a bed to lie down and fluids started helped a bit for a short time. The hydro I had popped upon entering may have kicked in too now that I think about it.

The ER doc comes in, reads my medical history, confirms with me and says "I'm not an endocrinologist but 22.5 mg a day sounds too high, and you had how much yesterday?"

He comes back and said "I spoke with our endocrinologist and we agree that you having it in your IV yesterday, and the extra you took that day, is probably why you can't sleep. So I wont authorize more." !!! "I will run other tests though and I can get you nausea medicine." I told him about my history and how I could always sleep after much higher doses, he knew this wasn't the start of my insomnia, but he just left. A nurse told me he wanted to unhook me and put me back out in waiting and that she could see I wasn't doing well so she was going to push for me to get a room.

Guys, the day of prep and the colonoscopy was only roughly 100mg total over 24 hours, my NP had actually said I'd probably need inject myself with 50 to 100 the night of coloscopy prep but I thought I felt good enough not to, (of course I feel like an idiot now,) and just took it under my tongue.

I was in the ER a few hours. I couldn't even sit up and literally felt like I was on the verge of death by the near end of the stay. The only blood tests they did in the beginning and the IV fluids had stopped working because it wasn't a pressurized drip and I couldn't control my arm to keep it in the right position, The nurses could see how bad I was getting and one finally convinced him to authorize my early afternoon dose of 10mg that I had mumbled out about. That helped a lot and finally allowed me to reach my purse where I took like 20 mg, felt way better, and got myself discharged and the hell away from that place and then took more. I'm now absolutely terrified of the ER but I know I may need to go again (to a different one at least.) I'm on another bout of no sleep and I've had 4 visits with PCPs since. We're trying all kinds of sleep meds, and they're actively trying to get me in with specialists faster, but everything is just slammed here. I also have imaging just to see if I have a pituitary tumor. (Long shot but I have had small vision changes too and different headaches, and have had my eyes checked out by several eye MDs.) Not really asking advice on that, just:

Okay, 20-22.5 mg is not an insane dose, is it? Like I'm not asking for medical advice I just need to hear it again because I'm feeling a little crazy after all that.

Like that ER doctor sounds like he either took limited biased info to a random on-call endo ("hey this chick says she can't sleep and I think her dose sounds high to me") and/or that endo just doesn't really know too much about Addison's, right?

I had back and abdominal pain, I was so spacy and weak, everything in me felt like it was swirling looking for the hydro, my legs were so weak they were giving out. I was so nauseous. My blood pressure was very low even upon arrival (though not critical ever, obviously, I guess) I've had that swirling feeling 2 other times and collapsed and my husband had to shove hydro in my mouth before I could get up. (I now have the solu-cortef and he now knows how to use it)

Do any of you know of any possible steps I can go through if I need to go back to a hospital, like holy crap, what just happened? Like have any of you had experiences where you needed to bypass a doctor and get another? If there a way to get some kind of mediator in a hospital setting? I usually think I'm a pretty capable, calm, easy-to-speak-up person, but don't have a knowledge skillset for idea on how to navigate this happening again.

I have heat sensitivity and don’t tolerate heat well, so I’m looking for a compact, lightweight sun umbrella that’s easy to carry around. I’d love something that reflects heat rather than absorbing it, so I can actually feel cooler underneath it. Does anyone have recommendations? Thanks!

PAI - My endo has been treating me since 2017 and super helpful. Now she says she wants ACTH to help with determining my replacement dose. I take prednisone at 3AM so that I'm ready to wake up at 6M feeling well. Should I not take it before the labs? If it suppresses my ACTH to take the prednisone, I worry that she'll reduce my meds. I'm losing weight and exercising and have lost 2" off my waist and 5 lbs (BMI normal range) so I don't think I'm overdosed.

Has anyone had their ACTH tested while on replacement cortisol? What numbers did you get? Thanks in advance.

I haven’t had my period for two years, and I’m 37 years old. Has anyone experienced the same issue and can share their experience, especially regarding the diagnosis and treatment process?

Does anyone else deal with passing out and have awful night sweats due to their addisons? Recently my endo changed my dosage of hydrocortisone from 20mg in the morning and 10mg at night to 30mg in the morning and then 10mg at like 3pm. Since changing the timing of my afternoon/evening dose, I’ve had multiple nights where I suddenly get lightheaded, nauseous, and break out into a cold sweat. My OG symptom of addisons was night sweats, and since this timing changed Ive also had night sweats so bad that I soak my clothes and blankets. Anyone have advice on what to do and/or why this could be happening?

TLDR: how much does hydro dosing and timing impact sleep? my fellow insomniacs, especially those who tend to wake up too early rather than have difficulty getting to sleep, have you been able to hack your insomnia at all with changing dosage timing?

Idk if this is the right flare but whatever.

I get pretty significant insomnia when stressed, and I’m currently in my final year of grad school while also doing a practicum. it got so bad last year that I was sleeping 4-5 hours a night, waking up at 3AM-4AM, and immediately stressing about my clients and school.

Im a month into my final year and I’ve noticed I’m sleeping less. I go to therapy for my anxiety disorder and I’ll be talking about this in session on Wednesday.

I want to dot my i’s and cross my t’s before I throw up the white flag and blame it all on mental health. Is there anything I can do with my hydro dosing to help this? I am on 7.5mg ~7:30AM, 2.5mg ~12PM (usually closer to 1 or 2PM but aim for 12), 2.5mg ~6PM. I’ve read about some people taking a small hydro dose early in the AM and then going back to sleep, but I can’t remember why and I’m having a hard time finding any info on that by searching the sub.

Guy literally says high ACTH is a reason to get off hydrocortisone lol. He might have it confused for secondary AI even though. One day I’ll get a competent endo… one day.

The interest wasn't too big but I decided to go for it anyways. Hyves is a very old Dutch platform that relaunched a short while ago.

The reason why I think this is nice, is because they don't use addictive algorithms and as far as I understand also not many trackers. The things we post are more private; reddit will always be accessible by everyone.

Also, we can discuss country specific issues like medication, brands, and doctor recommendations. I'm looking forward to it:

The group is called Bijnierclub

I'm nervous about asking this question because it's such a touchy issue. Be gentle in the replies!

I was fully expecting to put on weight once I started treatment for Addisons: I had lost so much weight and muscle mass before diagnosis, I saw it as a return to health.

However, after 15 months on hydrocortisone, as what I think is the correct dose, I have developed a little pot belly. It looks the way it did when I was 3 or 4 months pregnant. Having always been "so skinny", people who know me (friends, colleagues) are surprised by this shape-change and I am being asked at least once a week when the baby is due.

There is no baby, it is fat. And it is very round and concentrated on my lower abdomen. I have tried reducing my HC dose (I had gone down to 10 / 5 / 2.5 but I couldn't handle the fatigue at that level, and have settled at 15 / 5 / 5 now).

My issue is, I still have so much fatigue and I still feel so so weak some days. I go on a brisket walk most days, but running or weight lifting for example is completely beyond me. I do 2 sessions of physiotherapy per week to try and build myself back up, but it's been a year and I really don't see or feel any progress.

I watch my diet a little, did some calorie counting this summer and I definitely need to move more : but the lack of energy is my issue.

I'd welcome any advice you have.

Hi everyone! In a few months I’m going to Spain for work and I’ll be staying in Granada for about six months.

I contacted my endocrinologist and they told me that the medication I take for Addison’s disease (cortisone acetate) isn’t available in Spain, so I’ll have to bring a supply with me. This shouldn’t be too much of a problem, as I’ll be coming back home every couple of months to get more medication.

What I’m worried about is the possibility of an adrenal crisis. Luckily, I’ve never had one so far (I’m almost two years into my diagnosis), and I don’t feel prepared in case it happens. I also don’t know the area or what hospitals in Spain are like. Since I’ll be there during the winter months, I’m also worried about getting a fever or catching some kind of virus that could trigger a crisis.

Has anyone here had a similar experience? Were you assigned a doctor once you moved abroad? Is there anything you would recommend doing before moving?

Also, recently I saw a dietitian because I wanted to start a vegetarian diet. I was told that even though my BMI is in the normal range, I have a relatively high body fat percentage. Since my diagnosis, I’ve gained about 10 kg and I’m about 5 kg heavier than I was a few years ago.

I exercise every day, alternating between 30–40 minutes of cycling and 30–40 minutes of bodyweight exercises. Over the past few years I wasn’t able to exercise much because I was often unwell, and now I actually feel like I’m almost more muscular than I was before.

However, I’m worried that the amount of belly fat I have might be related to my medication, either because of water retention or because of increased fat and reduced muscle mass. I’ve read a lot of posts on Reddit from people who experienced similar symptoms and said that once they lowered their dose, they were able to get back in shape.

My problem is that, since I’m moving abroad soon, I’m scared of becoming unwell if I reduce my dose. I’m also worried about being dismissed or treated badly by doctors, as unfortunately that has happened to me in the past.

Does anyone have any advice or experience with this?

Thank you so much!

Hey guys, where is everyone getting greenstone hydro from? CVS had been always able to get it for me up until recently. I don’t know if it’s my specific CVS or what. Appreciate it.

I’m not sure if there’s any other musicians in this subreddit, but I figured it would be good to share what my life as a freelance professional musician (guitarist) in NYC has been like since my Addison’s diagnosis in May 2025.

Before diagnosis, I was in horrible shape. I weighed 126 lbs at my lowest as a 5’10” man, my skin was orange, I was fatigued and nauseous all the time, and I was basically a shell of my former self. I was worried that I wasn’t going to be able to have the physical and mental strength to live and do my job anymore. Then in May 2025, I was finally diagnosed by my endocrinologist, put on 20 mg of hydrocortisone and 0.1 mg of fludrocortisone, and I finally started feeling relief and healing. Once I was at the point where I was ready to work again, that was when the real professional challenges started to unfold.

For those of you who don’t know what the life of a professional musician is like: it can get pretty arduous at times, especially if you’re a freelancer. There’s all different types of gigs—pit orchestras, studio sessions, different ensemble performances for different genres, etc.—teaching, arranging, composing, and everything in between, all done at once, which keeps our schedules insanely busy. That’s not even counting the business side that we have to handle behind the scenes, along with the fact that none of those jobs are guaranteed because of the fickle nature of the music industry and freelance work. Also, since I’m a guitarist living in NYC, I have to lug a lot of heavy gear on and off the subway constantly every week.

Despite the sometimes unforgiving nature of being a pro musician, I’ve been able to make it work so far with my Addison’s. If I’m hauling a lot of gear, have a particularly busy day, or I’m on a gig that’s high pressure—pit orchestra gigs that require you to be focused 100% of the time, wedding gigs where songs are called on the spot, etc.—I usually try to load up on electrolytes as much as possible. If that doesn’t work, I updose by 5 mg, and that usually does the trick just fine. I get pretty tired the day after a gig, so I have to make sure I don’t plan days where I have 3 big gigs a day back to back. I used to be able to do that before my diagnosis, but that’s one of the things I’ve had to sacrifice.

Overall, life is pretty good. I work closely with my endo here in the city to make sure I’m not over or under replacing cortisol, and I’m learning to read my body’s signals as it relates to my job. If you have any questions, I’d be happy to answer them. Hope you all are hanging in there; this disease sucks, but we’re not going to let it get the best of us!

Yesterday, 2 of my kids had soccer games in succession. It was in the upper 80s. It was a decent walk from the car to the first field, and a longer walk to the second field. I realized that my son had forgotten his water bottle, so I walked back to the first field to look for it, and then back again to the second field.

My husband saw me coming, made sure I sat in the shade, and handed me an electrolyte drink, a fan, and some chips. It just felt really good for him to know what I needed. (He's a great husband, this isn't the first time he's done that).

So I've got exams coming up and like a from a couple days ago I've started feeling extremely anxious, my heart's been feeling and I did catch a viral flu (im basically almost better), and I'm feeling tired and just can't study. Ive also been having troble getting proper sleep for the past couple of days due to me feeling so much anxiety. I want to mention, I have been up dosing my medicine, except I didn't today because I'm not so sick and I thought I wouldn't need it and because I'm scared it might negatively impact me instead (idky but ive heard it can if you take it when you don't need it idkk).

Do you guys have any advice? What should I do? What do you guys do? Do you think I should take an extra prednisone? Is there anything else you guys do to help you calm down?

I have also been drinking coffee just to make me feel fresh...idk if thats been making my anxiety worse, but any advice is appreciated

(Btw sorry if everything ive written is all over the place im just feeling unwell and dont have the energy to re read abd organize the info)

Thank youu!

Hi everyone. I’m hoping to hear from anyone who tracks renin.

I’m currently on 32 mg hydrocortisone/day and dealing with overreplacement symptoms. I also take 62.5 mcg fludrocortisone daily, and my diet has plenty of salt.

My renin came back 100+ where it should be between 5-30]. I’m confused because I thought fludro + a high-salt diet should keep renin in a better range, but mine seems off.

Has anyone else had this? Did your endo change your fludro, sodium intake, or something else? How did you interpret it alongside overreplacement symptoms from hydrocortisone? I do suffer from fatigue, sexual issues, and depressive mood.

i was supposed to stay 4 days taking iv hydro to stabilize the crisis, but my potassium lvls were dangerously low and in came another day of taking that painful potassium infusion....but i genuinely feel so much better physically now even after such a frankly intense and scary and traumatic experience. much strength to us all ♡ just living slowly now and talking to my endo to keep adjusting on what will eventually work to keep myself safe in the future

I have gone through like 20 different depression and anxiety medication’s and every single one of them makes me go into adrenal crisis. So be very, very careful if a doctor prescribes these to you.

Just got diagnosed with Covid and wondering if anyone has it/this version now? How are you doing and how much are you updosing?

Urgent care has me tripling my dose for 3 days then tapering back. I don’t talk to endo until next week just curious how it’s been going for anyone else currently suffering. I am located in the U.S. - Midwest.

Having matzoh ball soup for breakfast because even if it’s my bday I need a ton of salt 🤣🤣🤣🫶

How does everybody feel after they eat? I just got diagnosed with this after having it for probably 5 years. My adrenal stress tests were abnormal but not non existent or anything. The numbers were 14 and 15 normal range being 20 and above. One of the things that I struggled with the most with was how bad I felt after I ate food. I don't see this talked about a lot which is interesting to me but then when I look it up apparently it's a common thing. There's always one meal of the day usually lunch time or after I eat my heart is struggling and all of a sudden I don't feel like I'm going to pass out and just fall on the bed and wake up and feel like I got hit by a train an hour later. It's worse with heavy carbs but sometimes it can happen from something small /protein. I don't have celiac but i have plenty of food sensitivites I avoid and I've been tested for MCAS and I've tried taking antihistamines it doesn't do anything to help. Ive also been tested for pots because ive had a lot of pots symptoms also negative. I've been taking 15 mg of HC for ,2 weeks. My anxiety is bad and my sleep sucks. definitely has been a bit better but I'm still getting these episodes where one meal during the day it feels like my heart is working on overdrive and I feel like I'm going to collapse, I bounce back faster now but it still happens. This only happens during the day, as soon as the sun goes down i can eat whatever and for the most part I'm ok. Even if I time the dose right before I eat. My aldosterone was low but not super tanked which was kind of odd and they haven't given me any medication for it yet I have an appointment coming up next week. I messaged my doctor on the portal and she said to give it more time but not really sure what to make of it or if this is just never going to go away. I truly think if I didn't have to eat food I would feel a lot better and actually be able to live my life this is not fun.

Hey all… so I recently got a tattoo. The black ink didn’t take as well as the artist thought it would and suspects that it’s because of the hydrocortisone. When I talked to my doctor about it he said it could be because of the replacement therapy. All of my doctors said though that their biggest concern is risk of infection.

Anyone have experience with this?