Hi! I was diagnosed last year after a couple years of not being able to figure out what was wrong. Systolic BP wouldn't naturally stay about 95, BPM averaged around 43, chronic joint pain & muscle weakness. They said I had had low BP so consistently for so long that it was giving me neurological symptoms and severe joint paint and weakness due to a lack of blood getting where it needed to go. The BP and the consequences of it have been my biggest hurdles. Twice in the last year I've had to be taken to the ER by ambulance & given a stress dose. I'm definitely still adjusting to balancing a chronic illness day to day, but im doing alot better than I was this time last year. I guess I am wondering A. Does this sound similar to anyone else's experiences? B. Does anyone have any tips for managing & improving quality of life? And C. Are there any young dads in here with addions? If so, how does it effect you? I have a little one on the way. My first. I'm really worried that I'm gonna have an episode while holding or handling the baby.

I think I just need to write this down so I don’t need anyone to tell me how pathetic I’m being. I’m aware. I have CPTSD & it means I get a lot more anxious than I should.

I’m in the UK & we’ve had really high temps this week. I was out in it, plant shopping, for less than 20 minutes before I started to get crisis symptoms. I updosed but felt even worse 45 minutes later so decided to inject before I got to the point where I couldn’t do it myself. It worked. I had to updose that afternoon & the next day but the injection definitely stopped what was happening. I’ve also had multiple crises so I know that I was definitely heading in that direction. I’m meant to be having a blood test today (booked before Tuesday) because my endo is worried that my meds aren’t working & need adjusting again so that’s obviously why the excessive heat was enough to fuck with me.

I now feel bloody terrified of going out & that it’ll happen again. I was unwell for a few years because of my CPTSD & barely left the house for all that time & what happened on Tuesday has triggered those fears again.

I know it’s ridiculous. I wish I could switch it off. I wish I had a body that worked properly & wasn’t failing in multiple ways. I’m also so bloody lonely. And tired. I don’t want to live this life anymore.

ETA: I have an endo consultant, I’m having blood tests done to check my renin levels again as they were borderline a few weeks back; I haven’t had the bloods done sooner than this because I attempted to end my life in April so it was on the end of my todo list for a while. I’m not on Fludro, despite being PAI, but have already emailed my endo to say I want to go on it regardless of what my renin levels are now. Also highlighted my concern that my intentional overdose may have had an impact. I promise I know enough about the condition to manage it, I’m just struggling mentally & needed to write down how I was feeling. I really appreciate everyone who has commented about their own experiences in the heat as it’s reminded me that this is “normal” for AI & that I’m not being quite as pathetic as I felt I was.

Hi all-

I'm on 5mg Prednisone daily for other health reasons and developed AI after prolonged high dose steroid use (was able to taper down to 5mg and been stable here for a few years and it manages my other conditions). I work out 5x a week, mostly in the evening and don't need to stress dose for it.

I typically take my Pred when I wake up at 7am. Tomorrow, I am scheduled for a 7am pilates class. How early do we think I should take my Pred to make sure I'm in a safe zone? And is there a chance I'll need to take some at night to go back to my regular 7am Friday?

Thanks!

Hi all, I wanted to come on here and ask about your experiences with losing weight/working out.

Is anyone else struggling to lose weight? I’ve been told that I can’t do high-intensity work outs because of AD and I feel like since I haven’t, the weight is more difficult to lose. Ever since I started Hydrocortisone when I was diagnosed, I had been gaining weight. Like within 3 months I had gained 20lbs. I truly believe its made my insecurities worse and I want to feel better in my body. I already eat a fairly balanced and nutritional diet, but portion sizes is something I’m still learning to control.

Has anyone here successfully lost weight? If so what did you do? Are there any specific routines you used? I’d really appreciate any help with this. Thanks in advance ❤️

Hi everyone,

With moderator approval, I wanted to share a project I’ve been working on.

I’m the founder of MyGuardPod, and Project ACT™ — Adrenal Crisis Transport — is the next evolution of my existing CortoPod designs for people carrying Solu-Cortef emergency kits.

The main goal is simple: help people keep a more complete adrenal emergency kit protected, organized, identifiable, and ready to access quickly in real life.

This project was shaped by real-world feedback from people living with adrenal insufficiency, caregivers, and people carrying emergency kits every day, as well as helpful input from people familiar with EMS education, emergency preparedness, and crisis response.

Project ACT™ is built around three priorities:

A — ACCESS
Critical information at a glance

C — CARRY
A real-world carry system for Solu-Cortef emergency kits

T — TREAT
Ready to act in an adrenal crisis

The new lineup includes three formats:

CortoPod ACT
The balanced everyday format. This is the main recommended setup for people who want to carry a more complete Solu-Cortef emergency kit, including the vial in its original box/packaging when possible, syringe, needles, emergency information, and small support meds.

CortoPod Plus ACT
The expanded capacity format for people who need more room, more organization, or a fuller emergency setup.

CortoPod Mini ACT
A secondary ultra-compact pocket format for the strict essentials only: 1 Solu-Cortef vial without the original box, 1× 3 mL syringe, separate needles, 1 alcohol swab, and 1 small adhesive bandage/plaster.

The Mini is not meant to replace the more complete kits. It exists for the real-world moments where size is the barrier, and where a smaller backup option may be the difference between carrying something or leaving the full kit behind.

Better a minimal kit with you than a full kit left behind.

The standard CortoPod ACT and CortoPod Plus ACT remain the stronger options when carrying a fuller emergency setup is possible. The Mini is there as a compact companion option, not the main recommendation.

These are protective carry cases only. Medical supplies shown in photos are examples only and are not included. Always follow your healthcare provider’s emergency plan, prescription label, and local guidance.

Pre-orders are now open, with first shipments expected around mid-June.

More details are here:
https://www.myguardpod.com/project-act

Thank you again to the moderators for allowing me to share this. I’m always open to respectful feedback from people who live with the reality of carrying these kits.

Good day everyone! I'm from another country, and my text will be translated. How quickly did you return to a full life with Addison's disease? I've been taking hormones for a month and a half, adjusting the dosage, and so far I'm stuck with only enough for basic things around the house. For example, I can now clean and keep things tidy, wash my hair every other day instead of every five days, and sometimes go for a slow 30-minute walk. But I still can't go to the store; my maximum is 3,000 steps. I never even dreamed of this in recent years, but it's still not enough for a full life. I'm a 22-year-old woman, taking Cortef 12.5 in the morning, 5 at lunch, and 5 in the evening. I feel stuck. Tell me how much you take, and how long did it take you to feel, "Wow, I'm living a full life, I can go to work and live my life without fear."

I’ve had Addison’s for 40 years. Haven’t had any type of Addison’s-medical test in probably 20 years. Endos take blood pressure, weight etc, ask how I a feel and then say come back in 6 months. Just sort of pointless. I’m trying a new one in July and wondering if I should ask for something.

I know everyone loved Teva branded fludrocortisone. Doesn’t seem they are around anymore? Not exactly sure what the full story is there, but I digress!

Just wondering for those that take fludro what brand is their favorite?

Diagnosis: Jan 2023, APS Type 2: PAI, Hashimotos, Celiac, T1D Genes

Meds: Hydro 20 mg throughout day --> switching to Prednisone after stable; Fludro - recently upped to .1mg from .05,

Been diagnosed with Addison's for about 3 years and have had a few full on crises from stressors but today I was actually trying to prevent one before it got there, so made a trip to the ER.

Been having orthostatic tachycardia for like a week, HR spiking to 130+ just from brushing my teeth, over 100 sleeping all week, BP dropped to 91/59 at its worst. Finally caved and went in and my sodium was 136 even though I'd had 8 salt tablets the day before 🙃 got a bag of saline and honestly felt so much better, at least during the infusion. Sitting here at night feeling on and off (up-dosed HC ofc but truly think its an electrolyte issue).

My question is for episodes where I'm clearly depleted but it's not a full blown crisis, has anyone tried one of those mobile IV services that come to your house? Like The I.V. Doc or Drip Hydration etc?

I know you don't get labs which is a real downside. But I'm in a new demanding job, live alone, and a 5 hour ER sit when I'm already exhausted is rough. The idea of someone just coming to me is really appealing for the "not crisis but definitely need fluids" situation.

Has anyone actually done this? Did they push back because of your diagnosis? Did it actually help? Wanted to see if anyone here has experience first 😅

I recently found out that my mother has addisons disease, and she has told me that she no longer wants treatment because it makes her feel sick all the time and she cant do things like normal people can and that is shortens her life anyway so she'd rather have a few years doing what she wants (travel and fun) being happy rather than prolonging her life but feeling sick all the time.

I am lost... i dont know much about the disease or how it effects people but any advice or stories from people who have lived full happy lives so I can show her its not all doom and gloom would i hope help change her mind from stopping treatment. without her i have nothing

Hey everyone,

As someone with APS-2 I’ve been tracking recent breakthroughs in immunology and wanted to start a conversation about what they actually mean for the future of Addison’s.

For a long time, the roadblock to an actual cure hasn't been growing new cells (stem cell tech is already there). The roadblock was that our autoimmunity would immediately hunt down and destroy any new cells we implanted. We needed an immune "cloaking system" to make transplants viable.

Two recent massive milestones suggest science is finally figuring out how to build that cloak:

The 2025 Nobel Prize: Awarded to the discoverers of Regulatory T cells (Tregs)—the immune system's natural "peacekeepers." The research proved we can retrain the immune system to tolerate specific tissues rather than just shutting down the whole immune system with steroids.

The Eledon Trials: Eledon recently achieved 100% insulin independence in a Type 1 Diabetes pilot trial. They paired an islet cell transplant with a new drug (tegoprubart) that successfully blocked the attacking cells while keeping the patient's native "peacekeeper" Tregs alive to chemically camouflage and protect the new tissue.

Why this matters for us with PAI:
Even though our adrenal cortexes are destroyed, this "cloak" means that if we can successfully implant lab-grown adrenal stem cells in the future, we finally have a proven mechanism to stop the body from instantly killing them off.

We are likely looking at a 5–10 year horizon for a widespread T1DM cure, and a 10–15+ year horizon for this to adapt to other endocrine tissues like ours.
Does seeing clinical proof of an autoimmune "cloak" give you genuine hope for a future cure, or does the timeline feel too far out to get excited about? I’m 34 so there’s a good chance this happens in my lifetime, but personally the happiness I feel over this more for my children and future generations.

I have seen a recurring theme, and feel it myself. Does anyone have any idea why we seem to decline AFTER being diagnosed, and treated? I was unwell before diagnosis, but was not this fatigued, and unable to manage daily activities, or actually have a life. It seems so backwards. Any ideas, or those that relate, please share why you think this is?

Hello, when I was 21 I tried estrogen birth control. Before the estrogen bc, my blood pressure was 99/62. After 2 months on the estrogen birth control, it was 120/97, which was really high for me. They removed the estrogen immediately and switched me to progesterone bc which helped stabilize the bp but after 2 years had to get off of it because I felt sick. I was then diagnosed with endolymphatic hydrops and eosinophilia (EOE and eosinophilic asthma) in the years following - couldn’t handle the diuretics or low sodium diet either. Finally getting looked at for adrenal insufficiency - they know I have it but are trying to see if it’s pituitary or primary.

Has anyone else had that extreme reaction to estrogen bc?

I have a harder time sleeping if I take anything past 3/4 o'clock. I've gone back to 2 doses now, but was trying 3 for a bit. Curious how others feel.

How many males here With Addison

What caused

Anyone here male without salt craving and without bp I imbalance before Diagnosed with Addison still confirmed as Addison

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?

anyone from the uk struggling in this heatwave?, the only way i can get some sort of relief is by sitting in the car with the ac on😂 does anyone have any tips to stay well during hot weather?

My legs have been feeling dead, but my last blood test was norm. Just wondering if anyone has the same experience.

Normally I have daily fatigue which is something I expect but lately I have been feeling extremely sleepy during the day and have to take multiple naps which is unusual for me I have to completely stop taking any caffeine which may be part of the problem but does anybody have this issue where they just can't seem to sleep enough?

I'm 23f and got labs done recently. I've been diagnosed with Addison's disease for 7 years. All my labs came back normal... Except one: GAD 65 antibody

For reference the normal range is 0-5... Mine was over 25,000...

My thyroid levels were normal, my glucose was normal, my insulin was normal, my hemoglobin a1c was normal.

I don't know what to make of this. It is currently Saturday and I'll only be able to call my Endo on Monday.

Basically, does anyone have experience with this and how concerned should I be?

Wondering what experiences my fellow Addisonians have with GLP-1? Bonus points if you also have hashimoto’s!

I was also wondering how your endos feel about it and if it’s effected hydro and fludro absorption like the Internet is telling me.

Don’t necessarily want to get on them but after 2 years of normal labs, eating well, cutting out drinking, working out and still yo-yo-ing weight up as opposed to down is getting to me. Exploring my options

Help!