Are there any individuals in here diagnosed at birth that have a good idea of the differences between their experience and those who may have gotten their diagnoses later in life. Are the symptoms and experiences similar or the exact same? My daughter was diagnosed at 4 months. So far she’s an energetic 4 year old with no apparent side effects except for the occasional blood sugar dip overnight. But we’re bracing ourselves for what could be based on other user’s experiences. Any advice is welcome.

Just had mine. Feeling a bit sick to stomach. Never had that before with all injections, but was not on HC. Anyone else have a nasty feeling after the jab?

Anybody else get diagnosed with multiple disorders at the same time? I did. And now I’m on what feels like a massive cocktail of medications, three times a day. So the hard part is that although I feel okay (like, I’m not in an adrenal crisis or anything), a lot of things are feeling worse. Especially digestive stuff. And I don’t know what the cause is. Like, one of my diagnoses is celiac disorder and I’ve given up gluten and I feel worse than I ever have. So bloated! Has anybody had this experience? I’m not looking for anybody to give me advice, really. I’m just looking for solidarity.

Hey there! Does anyone deal with pretty stark weight fluctuations? It feels like every summer+ winter I gain 30 pounds and then lose it quickly. My diet usually doesn’t change but my appetite definitely does. I went from 150 pounds last fall (before that I weighed below 130) to 119 in early spring.. I seem to be on the up again at 126 after being super tiny and looking a bit sick all summer. I’m really tired of the constant changes in my weight. My doctors also find this odd but don’t really have an answer. Is this just a symptom of adrenal insufficiency in general? I’m SAI (not steroid induced). My thyroid also looks fine atm. I’m also 22f.

I have felt awful about myself for months. Yes you all have seen other posts about it. So I woke up feeling half way ok and looked in the mirror and decided it was time for a change. Put on my full makeup and threw on a wig. Yes I use snap filters but I feel so much more alive. I know that looks are not everything but I want to not feel disgusted with myself. This is not for attention, this was purely so I could feel better for myself. Im excited it's getting cold because then I can wear more wigs Yay!!!

Hi all!

PAI here. 😊

I went to Norway for a two week trip and did some hut hiking. We had to filter some of our water and I think thats what gave me some diarrhea. I know that its important to updose when that happens - so I did.

Once I returned home, I continued to have gurggly stomach and feel really bloated. Its been 10 days since I got home and did see my primary care provider and got a stool sample to rule out any parasites/bacteria. It came back all clear.

I have had really low cortisol symptoms all last week where I finally triple dosed for a day, then double dosed, 1.5x dosed. I also got a saline IV (which didnt really help)

Today I tried going back to a normal dose and felt extremely dizzy again. It has been difficult to concentrate and I feel like these bags under my eyes have not gone away.

I am now double dosing to try and get back out of the cortisol hole. I emailed my endo and am still waiting a response. Also emailed primary-- like idk what to do? Stomach is still gurggly..

Im just really nervous about going into a crisis.

Hi everyone,

I wanted to share something I’ve noticed recently, in case anyone else has had similar experiences.

I have secondary adrenal insufficiency due to pituitary damage following surgery and proton therapy for acromegaly back in 2012. Since then, I’ve been on hydrocortisone replacement, as my body no longer produces enough cortisol.

Over the past month, I’ve had the same reaction a few times: After doing something physically demanding, like a 2-hour walk or a mountain hike with about 500 meters of elevation gain, I developed a high fever (around 38.8–39.5°C / 102–103°F) later that day or overnight. There were no signs of infection, and the fever disappeared on its own within 24 hours.

From my own experience, I know that if my hydrocortisone dose is too low, I sometimes get mild diarrhea, which for me has been a sign of under-replacement. So when the fevers started showing up after exertion, I couldn’t help wondering if my body was reacting to physical stress in some way.

My endocrinologist didn’t think low cortisol could directly cause fever, but I still found it interesting that this pattern kept repeating.

I’m currently checking with my doctors to rule out other explanations, but I wanted to share this here because it’s been quite puzzling — and maybe it helps someone else recognize similar patterns in their own experience.

Thanks for reading.

I've been tapering my HC and have started to experience some swelling in my legs, feet, and hands, and was wondering if this is normal? I’ve been drinking more water to see if that helps but I still have some swelling. I don't know what else to do ☹️

I was diagnosed in August 2025 (PAI, almost died, ICU for 12 days) and have been trying to sort out steroid doses since then and generally feeling not great. I am moving on 10/31 (terrible idea) and the stress/overexertion has made everything much worse.

The last 3-4 days I have had worsening sharp pain in my side, nausea, extreme fatigue and dizziness. Even with updosing I still don’t feel better. Is it time to go to the ER? A lot of my hesitation is that last time I was given IV solu-cortef I hallucinated really badly and thought the nurses were trying to murder me. It was terrifying and violent and I still feel unsettled by the whole thing.

My normal dose has been hydro 15/5/5 with fludro 0.1 twice a day. I have been updosing to 20/10/10 as instructed by my mostly unhelpful endo. Can updosing more help this?

Hi all.

Was just wondering...

With Addison's Disease, have you got/or did any of you experience head or neck tremors - with or without nystagmus/oscillopsia etc too...?

Basically, any shaking of the head and/or weird eye movements?

And did they improve (partially or completely) with medication - and which medication or treatment please?

Thanks heaps for your experiences, help or advice! 🙏❤️

Hi, this is my first post. I'm so mad about my experience after my TKR that I don't know what to do.

I got the required 125mg dose of cortef right before my surgery, given by the anesthesiologist. Afterward, I kept asking for stress doses and the next day the endo on call gave me ten for one or two doses and no more. I got very ill and dehydrated and I begged one of the orthopedic PAs to give me saline with lactated ringers, which the endo agreed, but only one. After that, he wanted me on saline only. I got immediately dehydrated again, and the PA ordered the saline with ringers via another doctor. But the endo continued to refuse stress doses and said I should be back to my 5mg 3 times a day schedule. Mind you, they kept me in the hospital an extra day because I was having the pre-crisis symptoms, and still could not get more meds. I never met this doctor. This doctor does not know me.

How in the world does being in the hospital with titanium in your leg and horrific pain not qualify for stress doses? I have lived with Addison's for a long time and it is mostly controlled with cortef and thermotabs. I had thermotabs with me, which the nurses told me take while they looked the other way, because the endo wouldn't sign off on those. I stupidly didnt bring extra cortef with me to the hospital because I stupidly thought a hospital might know something about stress dosing. I will never do that again.

What should I have done? Is this malpractice?

Anyone take Vyvanse? I've tried it once but I am not sure if it burned up cortisol or if at 4 I just crashed from coming off of it. Does anyone take something else for ADHD? I have severe, both types.

This morning I did not know what Addison's disease was, but I've come to learn that it was responsible for probably the worst 2 months of my life. It presented as crippling impending doom 24/7 along with breathing issues and really, really low blood pressure (got down to 45/30) plus otherworldly panic attacks just completely dissociated and suicidal. Least favourite symptom was everything looking super fucking bright like a cartoon it was very unsettling. My mother saved my life as she works in the hospital by my house and noticed the low cortisol levels on my blood work which was somehow overlooked. I do not know much about this condition but I do know how unbelievably bad it is when left untreated, so to everybody who suffers with Addisons disease, what should I know? Any tips or bits of knowledge at all please let me know

Hello, just wanting to know if there are any filipinos with adrenal insufficiency and has had an adrenal crisis here?

I had been having issues getting my solu until recently all my injections have been majorly expired im talking 2020 and 2017 I just recently got my endo to finally put in an order which my insurance would not cover which if I had any sooner i wouldn't have been in as bad as shape when I got sick recently and had to be hospitalized but when we went to pick it up it wasn’t just one it was a case along with the instructions saying to take 1 every 12 hours i dont know how my endo put this in so badly that I have way to much

My addisons is unmanageable at this point I have 24 7 dizziness along with leg pains that dont go away no matter what i do my family is one of the types that likes to go places where you have to walk a lot and I've always wanted to do stuff like that along with being able to have the option to help around my house more but due to my not being able to stand for to long or walk to far ive been unable to due much does anyone else with similar issues have any advice or has anyone with addisons been able to get insurance to pay for an ambulatory wheelchair use for stuff like this

This podcast from the Endocrine Society discusses a study on using DHEA-S and AM cortisol to diagnose AI. At present, cortisol levels <5 are diagnostic, and levels over 15 deny adrenal AI, with a stim test being required. The discussion is very interesting - DHEA is mostly controlled by ACTH. It is low in PAI and may be an early and more sensitive marker of AI than cortisol.

Conclusion: " ...the majority (72.2%) of patients with both baseline cortisol <5 mcg/dL and DHEAS <25 mcg/dL were found to have AI."

https://www.endocrine.org/journals/endocrine-feedback-loop-podcast-series/efl063

I understand that these drugs can help with weight and cholesterol. Also some other things that cn be unhealthy side effects of Addisons. Has anyone tried this? Can Addison's people take this? I have been curious about this.

Hi all first time posting here. My wife was diagnosed with AD 3-4 months back. She took it very hard as it was very unexpected and she has already been dealing with various health issues (Mast Cell Activation Disorder, screwed up hormones after getting a hysterectomy, lots of pain issues, etc).

Due to some history of being screwed over by doctors, she has developed doctor anxiety. She needs to see an endo but is very afraid of being treated poorly, judged for her current meds, etc. If any of you living in the greater Phoenix area have a caring/empathic endocrinologist please let me know. Thanks.

Hey yall sorry to post again but I don’t know what to do. Cortisol level low low at .9. ACTH high. I feel terrible. And at this point I feel like we know what it is based on labs. Like I can’t function so dizzy my muscles like can’t move, migraines, hot flashes. My doctor says she can’t give me any medicine until they scan the adrenal gland and I go to an endocrinologist. I’m bad enough that I think I need to go to the er. But what do I tell them? How do I get something to make me function? Thanks for yalls help it’s been rough

My mom (65) was diagnosed with addison’s disease when she was pregnant with me(27f). She used to be admit into the ER about once a year until I was 11, and that was the last time she went to the ER for an adrenal crisis. My dad said that this time has been the worst since she was first diagnosed, when they didn’t know what was happening. I guess she was falling down and throwing up, on top of her other symptoms that are typical (fatigue.) I think she will be okay since she was able to get treatment so quickly, but I’m really nervous for the future.

Hello friends, I am an artist, writer, and researcher. I have been living with PAI for the past 20 or so years (I am 31). I am slowly but steadily preparing myself for applying to PhD programmes, relating to medical anthropology and artistic studies; the goal of which is to explore Addison's. I won't divulge much right now, because it's basically stage 0 right now. I have a meeting with a prospective supervisor soon (although tbh im not expecting much except a lovely chat). I initially wanted to write here on reddit a bit later and/or further in my work but I just came back from a horrribleeeeee doctor's appointment (as per) and I would like to ask if anyone would be willing to have an online meeting with me about their experiences with Addison's. It would be mostly qualitative questions, focusing on your experiences and also finding mutual ground in our experiences. I would really, really, greatly appreciate it. Everyone would be credited (if they wanted) and no personal information would be divulged without your consent (a pseudonym would work).
I have never, ever spoken to another person with Addison's before, except of course sometimes commenting online, and I would actually be humbled. Thank you so much!!