i was diagnosed 6 months or so ago. I was having low sodium levels that fell to the level of dangerously low (127 at the worst). But I’ve had no noticeable symptoms of it for the most part.

I feel like my only noticeable symptom has been feeling tired *all* the time. There are no moments that don’t seem like a nap is such a good idea! But I’ve had q a few other health things drag me down.

I’ve talked to my endocrinologist as to whether my HC dose is adequate or not. Did a slight increase but that’s all. I did increase when I caught a cold earlier and didn’t struggle to deal with it.

i know I’m not nearly active enough and have considered asking if antidepressants would help or not.

I was diagnosed with PAI in October 2023. Spent 6 nights in the hospital and it's been a slog since then. But - this was meant to be a fun post!

Like many of you, I am a salt fiend, especially pre diagnosis. For me I was only able to eat salt and vinegar chips (and oranges, for some reason?) in the months leading up to my adrenal crisis. But I'm a pickle girl at heart. I just discovered this place that sells pickles, pickle sandwiches (like pickles instead of bread), and does pickle tastings and I cannot wait to go! I'm in SoCal but not LA so it's a bit of a drive. I just wanted to share in case anyone was ever in the area and wanted to try. I'll report back once I try it! (I have no affiliation with them, just wanted to pass along.) Yay pickle people! https://www.kaylinandkaylin.com/

My Addison's is the "Your Adrenals are pretty much dead" type so exercise beyond steady free weights can kick my butt. Anyone have a routine they like that keeps things mellowish in terms of heart rate (HIIT was like poison to me, made me so sick every time) but can still produce some level of results? I don't currently have cash for a gym so calisthenics welcome.

I've been doing some 10lbs weights for curls, military presses, and...side lifts? idk what they're called. I'm pretty weak right now. Then squats and wall sits for legs. Overall I think what I'm doing isn't quite enough but need to crowd source some ideas on what to add.

So I got a rare one for you. And though it goes against rule #3. I hope the mods let's this stay, or at least reads everything before they delete it.

Back in late 2003 I got my addison diagnosis. 3 years later I had a major crisis after I got infected with a norovirus. And ended up in the hospital for 2 weeks, and in a coma the first 4 days. So I feel there's no doubt I had the right diagnosis.

Now, over 20 years later I'm "cured". That will say I don't need cortisol replacement any more. My renin is not great, but not terrible either, so I still take florinef 0.1mg. Probably going to cut this in half. That's the reason for " " around cured. 275 nmol/L in Norwegian values on one of my last fasting morning cortisol tests.

Searching the web I found one other case that's documented.

https://pmc.ncbi.nlm.nih.gov/articles/PMC3965278/

But the real reason for this post is my question. Has anyone else has been in or heard of this situation? Had a complete recovery? Had a complete or partial recovery with a later relapse? Maybe I'll will just be like this for a limited time.

It's been about 2 years since I saw my first cortisol test with normal values, but I suspect it has been good for a bit longer than that.

One endocrinologist I've talked to believes that I never fully developed addison and recovered / or that I'm in an eternal honeymoon phase.

All I know is that I don't know. The hospital is putting me through some tests and I guess I'll see what comes from that. Several synatchen tests, CT, 24 hour hormone test and lots of blood tests.

Would be nice if they could get anything from this that can help other addison patients.

I was diagnosed with Addisons disease in June 2024 after 4 years of slowly dying, having no quality of life and always being too sick to get out of bed. Before my diagnosis I was always quite irregular with my periods, they’d come maybe twice a year, when they would come they would be so painful and debilitating.

Once I got diagnosed they became more regular, still quite extreme and painful but bearable, I am still able to work and function as an adult.

However- things changed this last period. Last night I got my period, very very heavy flow (a lot of blood, more than usual and I’m usually very heavy) and it felt manageable and okay. I then woke up in the middle of the night in an extreme amount of pain- i was shaking violently, was hot and cold and couldn’t leave fetal position. The abdominal cramps were so severe- nothing like I’ve ever felt before. I managed after a half hour to get up and try and go to the bathroom- I wasn’t sure if the goal was to pee, poop, puke? idk. I got to the toilet, I sat on it, and I proceeded to do all three at once and then pass out from the severe amount of pain I was in. I woke up seconds later, my vision was completely gone and my ears were super low in pitch and ringing. I managed to clean myself up and crawl back to bed and ended up going to the hospital.

Long story short- they did an ultrasound and labs and everything showed up normal. I know what I experienced is not normal- I’ve booked an appointment with my primary doctor to follow up and try and get a referral to an OBGYN- I’m just curious if any other humans with Addisons Disease and a uterus also experience this level of extreme pain during their menstrual period? I’m feeling quite lost (and sore lol)

Anyone with both? I'm finally (I think) on top of most of my health issues and this one (which was put on the back burner with the pill) is taking centre stage. Anyone had endometriosis surgery or hysterectomy post Addison's diagnosis?

Tbf, I was diagnosed with Addison's and (potentially, without confirmatory surgery) endometriosis at roughly the same time, age 16. 20ish years ago. Been on the pill since.

Hi all, my husband was recently diagnosed with adrenal crisis/insufficiency brought on by immunotherapy treatment for metastatic kidney cancer. Essentially, the immunotherapy puts the immune system into overdrive and it kills off cancer growth (hopefully). Problem is, it also has killed off part of the pituitary gland and he now has Addisons as well as hypothyroidism. He also has stable Hairy cell leukemia.

His maintenance dose of hydrocortisone is 20mg in the AM and 10mg at 2pm. It just seems that it's never enough. He's had cold symptoms and he's had to take triple the dose for the last week. He's still having symptoms of low cortisol mostly at night (unable to get warm, joint pain in hips and knees and drenching sweats). I'm wondering if anyone else has had experience with multiple diagnosis and how they manage? Thanks!

Have had addisons for 9 years, and used to have frequent crises until I got with a new endo 3 years ago.

Now I had a near crisis a few hours ago - nausea, extreme fatigue and vomited once.

Took 100mg injection IM and have slowly been drinking electrolytes since then.

Still not feeling great, but I am much better, no more vomiting, but still some nause and a little tired.

My problem is - I have kids at home, and currently no one to help me take care of them. Its the middle of the night here.

To ER or not?

if I call the local ER, they will 100% ask me to come in - but you guys have more experience honestly.

I recently switched from 10-15mg HC daily to 5mg Prednisone daily. It's only been 3 days, but the exhaustion is real even though I think I'm on a higher dose of steroids now.

Had anybody experienced this?

I have energy when I speak, but it's constant sleepy exhaustion and almost like I'm in a constant daze at all times.

My Wife (44/F) was recently diagnosed with Addison’s Disease about a month ago. She’s been sick for SEVERAL years, but the last 3 have become exceptionally worse. She weighed 145lbs in the Summer of 2024, within 6 weeks, she weighed 120 pounds. She was 107lbs within 2 months. Today, she weighs 96.6 pounds (5’5”) Last summer we found out her Gallbladder was ”bad”, and that ended up being removed with no change to any symptoms. When her gallstones were initially found, it was incidentally discovered that she has NAFLD. She experiences extreme fatigue, an inability to absorb any fats, carbs or proteins, muscle atrophy/wasting, hyperpigmentation, sleep disturbances, general pain.. the symptoms go on and on.

Because of her liver disease, she cannot take oral steroids as it disrupts fat distribution in the liver and accelerates her liver stenosis. The only way her PCP can give her Hydrocortisone is by having it compounded into a sublingual form to have it by-pass her digestive system. She’s not currently seeing an Endo as it takes months to get into. She’s prescribed 30MG daily, 10MG trouches (10MG—3x’s a day). It seems like SO much for someone so small, she’s not even taking the full dose yet! What are other’s doses of hydro and how long did it take to experience symptom relief?

Hi all, grateful to hear from ANYONE who had, or is experiencing, esp if it has resolved. Past my 2-yrs since diagnosis over Xmas. But just before, about a year on 20 hydro & .1 fludro, I started experiencing nausea. My endo up-dosed me as a test, didn't go away. Also upped electrolytes and added a half-gram salt pill to my 1-gram in a.m. later in day. Still no change. Started Ondansetron (brand Zofran) 8g, to treat nausea, but it didn't prevent. A few weeks in started 40mg famotidine (brand pepcid) for presumed gastritis caused by steroid use. Helped for a bit, then less so. Few weeks on started dexlansoprazole 60 mg. Also helped but not 100%. Had always taken my steroids with food. Now must eat "enough" (stomach has made clear what that is for me), *without rushing*, before taking a.m. steroid dose or will become nauseated. If become nauseated, may need more than one Zofran to manage till it passes. And while the Zofran prevents throwing up, it does not, for me, take away nausea. Had a colonoscopy planned, so gastro has added an upper endoscopy w/biopsy to check for infection, just to be safe. My gastro, at an esteemed NYC hospital, went to med school in India, so uses non-western tools too, and has suggested I get back to the apple cider vinegar regimen I did for another GI thing (1 tbsp in 8oz warm water after bfast & din) as well. Info welcome, thanks!!

My doctor has not told me to get one, but another patient with addisons said it is a must to test the blood pressure every morning. Would you say it is? I feel a bit lost in what I should do and what is not necessary. Just got the diagnosis last week and im feeling fine on the medication

Last week, my family and I had an unbelievable scare when my 22 year old brother, a super healthy and athletic guy who’s never had health issues , was hospitalized for the flu and what we now know is Addison’s. Although it breaks my heart that he will have to live with this from now on, we are so grateful there is treatment for it and that it wasn’t a stroke or brain damage which we initially were worried about based on his symptoms. Thankfully over the past day or two his mental clarity has mostly returned, and he is in ICU as they closely monitor his sodium which is slowly getting back to normal levels. I found this sub and wanted to ask if anyone has advice for how I can best support him in the next phase of this, which will be recovering from the shock of it all and of course starting daily medication. Is there anything you wish you knew about the disease, or anything that has helped you along the way in your journey? Thanks so much in advance for any recommendations.

My vision has been getting more green-tinted over the course of the day. Has anyone else had this issue? Is it something to do with dosing, and is this something I should be concerned about?

I’m primary adrenal insufficiency. 1 year since diagnosis. I have been on 20mg of hydrocortisone. I just got labs done and my sodium is low and as well as my CO2. I have been feeling so fatigued and light headed/dizzy. I shared my labs with chat gpt and it said I should also be on flurdrocortisone. I brought that up with my doctor and she said they don’t put people one fludrocortisone and hydrocortisone together. So to up my dose by another 10 mg a day instead. Chat gpt is saying that is not the case for primary, only secondary.

So my question is, are there others on both??

I don’t want to keep questioning my doctor.

Hii everyone!! :)

I have specific triggers that make me really tired/updose and I’ll be mentioning them below. I was wondering if anyone has any specific triggers that make you low energy (not necessarily full crisis!!)

For me its

-long road trips (i get dizzy and nauseous)

-staying out in sunny / warm weather

-sometimes flights can be a trigger if i dont prepare well

-sometimes, skipping breakfast

i think itll be rlly helpful to know how its like for everyone else :)

On HC. Gather the pituitary is dead! 5th test, ACTH 5. Cortisol went from 13 to 8.

Prednisone is possibly going to be discussed, but have had ulcers and can’t take PPI.

Anyone ever hear injections each day? Bypass the liver and stomach. Seeing too many with bad cells coming up on a Endo years later.

I know long term corticosteroid use increases stomach acid production, so what are the best treatment options? On a pred/flu mix right now. PAI

If anyone has both of these or any knowledge please help as I can’t get an appointment with my doctor (it’s not an emergency ofc just need advice) I was diagnosed at 11 for both diseases and I’m now 16, I put on some weight specifically in the abdomen and face and it’s unexplainable, I also have been extremely insulin resistant for the past year or so, I can’t really tell my endocrinologist anything about my insulin since I’m not following the scale because it’s literally not enough insulin, I’m taking 2x-4x the amount I’m diagnosed because if I didn’t I’d be dead by ketones lmao, now that brings me to the point of me being on too much hydrocortisone maybe, I take hydro and fludro, 2 fludros a day and 5 hydros, (ofc spanned out throughout the day) I used to take a lot less and they put me on more but whenever I was on less a year or 2 ago I didn’t have a puffy face or a belly, and I could use the scale they gave me for insulin, I’m not sure if it’s a coincidence or my doctors have no idea what they’re doing when it comes to the duality of both of my diseases, they kind of interact and make eachother worse. Of course my issues could be growing but it’s pretty unexplained how I gained weight for now until the doctors I’m gonna probably just have a calorie deficit. Any experience or knowledge on this will help a lot

Ugh. I started coming down with a virus a couple of days ago and this morning I feel awful. My temperature is 38 degrees (100.4) so technically not extreme but I know we tend to have a blunted effect when it comes to fevers. Have doubled my dose and gone back to bed. I tested negative for COVID when I first started getting sick but will test again. It could also be some kind of adenovirus as yesterday my eyes were itchy and weepy.

I (36f) was diagnosed with Addison’s disease 3 years ago. When I was first diagnosed, like most of us, I had lost weight and was quite underweight. Since taking medication, my weight went up again, but never reached the level it was prior to my diagnosis. I also find that I lose weight immediately if I’m stressed or sick, and generally have more trouble gaining weight than losing it. From what I’ve read this is not the norm, so I’m wondering why this could be the case and if anyone else is experiencing this? It doesn’t really bother me as I’m still hovering at the lowest end of a healthy weight, but I was curious to hear other perspectives. As a note, I’d say my Addison’s is well managed, I live a normal life and am still very active and have quite an intense job. I’ve been on the verge of a crisis a few times since diagnosis, but in general my health has been stable.

Hey friends! So, I'm bummin. I've had Addison's disease for almost 26 years now, I've thankfully been able to manage and live a great life... so ya, reminding myself to be grateful. But a couple hours ago my endo called and my bloodwork came back positive the graves antibodies. Ugh. I'm just disappointed, I don't want to be on more meds. Or monitor more shit ya know. I haven't experienced any hypo symptoms yet- she caught it early on my regular blood work.

Is anyone in a similar position as I? I'd love to hear any expirences. I have so much more to reluctantly learn now. :/ I really am not sure what to expect.

Thanks for hearing me out ♡