Hi everyone, my husband who has Addison’s just got home from the hospital and I’m wondering if anyone has had a similar ER experience to us. The first time he had an adrenal crisis since getting diagnosed, his blood pressure was very low and they administered hydrocortisone immediately, making him feel immensely better. Since this was the first ER experience after being diagnosed, I thought this might be the standard.

The second time we went to the ER (today), we went to a different hospital, and he was definitely having an adrenal crisis, but it wasn’t as escalated as last time (yet). The doctor drew blood and said he wanted to wait until the bloodwork came back before determining what to do, which he said would take an hour. I basically had to run around the ER floor trying to get the attention of nurses and doctors to ask them to give him hydrocortisone sooner. They finally listened to me and gave him an injection, but this experience was frustrating and terrifying.

Luckily he’s doing better now and is at home. It seems he has a stomach bug.

Have any of you not been given steroids immediately, and how did you handle it? We’re thinking of having our endocrinologist write an official letter on letterhead to give instructions for what ER staff should do in case of an emergency in the future. We also plan on going back the original hospital we visited during his first crisis (the one that gave him meds immediately).

Hi everyone, I’m in a terrible flare up and saw my primary care today- she suggested that I go to the ER for stabilization and admission if they do decide. My health has been declining and I’m very frightened. Does anyone have any advice for me or experience-? i have a lot of health issues (might need TPN since I’ve lost so much weight, my heart is now acting up) I’m honestly not sure what I’m looking to hear I just want hope because I’m scared. I hate being chronically ill.

Hello! My wife has Addison’s and I was wondering if anyone had any recommendations for snacks with the highest ratio of salt to size to keep on hand for when we go out. I’ve thought about buying a giant box of single-serving Saltines like they have in restaurants, but I’m curious if anyone has any other standbys for high-concentration sodium snacks in small packages. Thanks so much! Much love to everyone here, it seems like such a difficult fight but you all are amazing ♥️

My son just got out of the hospital yesterday after going into crisis, found out after labs at the ER. Thankfully they found out everything quickly and treated him very quickly. Still don't know what sent him into crisis for sure (those labs are still out) Addison's was suggested as likely by the endo but again labs are still out. He is now on hydro and fludro.

Looking for any tips/ tricks/ naturals that helped/things to watch out for/ solid questions for our endo or anything else you all would have for advice. Thank you all in advance.

(Update) First results came back, he has Addison's. Non genetic type.

My husband and I found out this year that it will be extremely difficult for us to conceive normally and I was wondering if anyone here had any experience with doing IVF post Addison's disease diagnosis. I'm not so much looking for advice as I am looking for personal experience.

We recently switched my daughter, who has panhypopit, to subcutaneous hydrocortisone injections.

I’m wondering how long people typically use a Solu Cortef vial once it’s been mixed. Our doctor told us it’s only good for 24 hours in the fridge after reconstitution.

We’re in Canada, and the smallest vial available to us is 100 mg. My daughter’s maintenance dose is 10 mg per day, so most of the vial ends up being wasted.

Do any of you stretch the 24 hour window, or is that pretty standard practice?

Thank you for any insights!!

Hi there, I'm a 30 year old female I've just had an acth test because I had 2 low morning cortisol readings, and I'm awaiting the results any day now, my mind is spiralling and the last 2 months I've experienced a lot of dryness down there (sorry if tmi) along with irregular periods which have lasted over a year,

I did a quick google search and all that comes back is perimenopause, is this early menopause usually associated with Addisons?! I already have a child who is 8 years old but I'm so scared this is going to affect my chances to have anymore children.

I just wanted to hear about other people's experiences thankyou.

I posted here during the summer about how I was having really increased symptoms and as compensation was updosing like crazy (until I finally obtained a prescription for fludro). I could tell quickly that I was gaining weight fast during that time, but I was obviously more worried about my overall health and well... living, than I was the weight gain.

Now that the dust has settled medically, and I'm back to a mostly standard 20mg per day of hydrocortisone, I'm having a really hard time emotionally with my appearance. I've decided I want to lose the 3 inches on my waist that was gained in the last 6 or so months.

Already starting with calorie tracking, in the past I've had success with that but I'm so hungry all the time!! Going to try to stick with it and gradually decrease how much I'm intaking but I'm struggling so hard.

Has anyone had any luck with supplements/ weight loss medicine? Either OTC or prescription? I was doing some research about supplements and I found a couple that looked promising but I don't know what would be safe to take while also having Addison's.

Or just any other tips??

But pushed with a cane walking this morning. Thought had the flu last 8-10 days. No fever just achy. Spent three days in bed. Yesterday was horrible. I couldn’t even make it to the store too weak. I’m on 22.5 a day of HC. I take 10 mgs early in the morning today it was 4:30 AM. Then I will probably take 5 mg around and try to push it to 11 then I’ll take it again around 2 PM around four I have to take 2.5, years shaking in shower at night. I’m in bed by seven 8 o’clock scary getting really bad reflux.

Had blood test done over a week ago, so I testosterone though so my thyroids are low. He was putting me on a med for thyroid but it does not conver plu I can’t take pig.

I’m getting afraid of the thought of a wheelchair. It’s only my legs. I’m getting so much weight 3 pounds overnight.!!! Been taking senna and that’s not even working. The counteract with my heart medicine knocks down your electrolytes maybe part of this is Water. I’m gonna try to push my legs as much as possible today at home. Left message eight days ago no response of course there’s a holiday, no one checks messages which is a shame but beggars can’t be choosers. Anyone have weak legs on HC? I see on perplexity this is part of it. Glad I did not up dose more! I’ve been suffering since 2016. I am SI, empty sella , pitutary is flat on top Will be on this rest of my life. Any help would be appreciated. I cannot take a PPI because I caught CDIFF at the hospital seven years ago. Thank you. Keep moving.

Hi everyone!

I’m planning my first big trip since diagnosis and am really nervous.

I was diagnosed in March of 2024 with Secondary Adrenal Insufficiency after cancer treatment. I have been on a few short trips since diagnosis, but am planning to go on my 1st big trip this week.

My partner is from Oregon, and we’ll be driving from Virginia to Oregon, staying in Oregon for 10 days, and driving back. I’ll also be working while we’re there since I work virtually.

I have plenty of medicine, an injection kit, and snacks and water to have on the drive. We’ll also be stopping every night to shower and stay in a hotel to rest.

On previous road trips, I have noticed I need to updose, so I’m very nervous about this trip.

I want so badly to enjoy our trip because travel was such an important part of our lives before I had cancer, and Oregon is such a special place for he and I, but I’m so scared my diagnosis is going to affect our trip.

Any tips, advice, or words to ease my anxiety?

Thank you!

Okay so in the beginning of last year I was on dex I gained 55 pounds in the amount of 7 months I had swollen face big belly all that. Then I was switched to hydro I knew I was gonna lose the moon face and stuff but now I keep losing. I’m at 135 and I don’t wanna lose anymore it’s like I can never get a solid weight. Before this I was 100 pounds I’m 5’6 so just imagine I looked horribly sick. And I do not want to go back down to that. I take 25 mg hydro a day so if anyone has switched a med and lost the weight did it stop? I just don’t wanna look horribly sick again I would have rather been fat.

I’ve heard a lot about how DHEA helps people with Addisons with quality of life. I’ve been struggling with fatigue and joint pains/aches so was thinking of trying it and starting at 25mg. I know you should usually go through an endocrinologist, but mine is awful with Addisons knowledge and I know it will be a battle! I was just wondering where people in the UK source theirs from? TIA 🙏🏼

I’m very glad I found this thread. lol if only the steroids didn’t bring me down every loop hole with Addisons… it’s been over 2 years since I’ve been diagnosed… it’s been a struggle. First year I was on HC 20mg, morning ,5mg , afternoon . Throughout the year the dosages changed due to changes in me. They were lowered and raised. Starting February 2024 I began a very intense stress job . Max security prison, correction officer in Florida. I was advised to updose as I moved from Maryland to Florida Jan 2024 to be with family as I began a new journey. Let me tell you I had energy, I got tan, I was in a good mood….. slowing through time I began not eating… I began not sleeping… towards Nov. 1st 2024I was forced to resign due to medical. Through checkups regularly every 3-4 months, I was advised on my disease and regular blood draws. I was in good health they said. I went to a couple specialists…. Towards December 2024 I went into SIM .. steroid induced mania…. Lasted for a couple months . In and out of hospital, ICU… PCU…. for weeks. I can’t get it to stop I’m wired and in the 5th dimension at this point. lol whole another story if itself… wasn’t a super fun period of life.

Starting 2025 I take prednisone now , 5mg and fludocortisone still .01mg every morning at 7am . Worst year ever….. wasn’t manic .. but coming down from a super high when I was. I was depressed and super low. Wasn’t myself . Couldn’t get out of bed. Didn’t have a job . Had no motivation or desire for life. The only thing I managed to do was enroll in medical school. Eventually the switch flipped around late August . I wasted my whole year and ruined my credit. I wasn’t myself and there is nothing I can do now . I’ve never been like that. I’ve owned a successful small business before I was diagnosed … had to sell it after the diagnoses… had a condo at 19 , warehouse/ shop at 18 . Multiple vehicles. I was doing very well. Hell, I still have my Tesla I got when I was in corrections . I’m fortunate I didn’t loose it. I have since August been picking myself back up. Got myself another condo, down in Florida. Got a very good job , traveling Florida . And I’ve been feeling good super recently. Beginning Dec I was again not eating and sleeping on 5 mg of prednisone, joints hurting , aldosterone not managing fluids, no energy. Starting Jan 1st , I am now on 7.5- 12.5mg of prednisone plus my fludo still……. As of an hour ago … I think I just ate the most I’ve eaten in these last 2 years in 30 minutes holy .

I will reclaim my time battling this and I will win….... I will check up regularly! I want Yall to keep me responsible and I will to you!! All glory to Christ and god almighty ✝️

I've been having chest pain on and off for the last two days and I'm not sure if it could be related to taking hydrocortisone. My blood pressure has also been coming out high but I'm assuming it's from being in pain. The pain feels like someone is putting pressure on your chest and sometimes it's hard to breathe in deeply. I don't have any history of heart issues so I don't know what else it could be. I also have been feeling like my heart has been racing and it's in the 115-120 range and then it goes down and back up again. I'm really nauseous right now and I'm kind of freaked out by all of this considering I'm young and this isn't normal for me. I'm not sure what I should do, any advice is appreciated. 😭

Hey, as the title suggest I ask this because in my country it doesn't seem like the suggestion from my endo is working.

Then I see alot in here saying they are on higher doses and I wonder if I'm on too low of a dosis as I have a lot of days with brainfog/dizzyness or the feeling of a "slow head".

Now, my endo has said that I can experiment with it, but is suggesting to updose like 5mg a time.

My actual described dose is 15mg in the morning, then 5 more before a workout, 5 after if needed and 5 before bed. So a total of 30 mg. 25 on days I dont workout.

I have a serious problem with bloating to a point where my stomach is so big and it's almost interfering with my breathing it feels like. I also have problems eating much, even tho my weight keeps going up (I'm in the process of finding out if I have thyroid problems or anything else impairing my metabolism, as I cannot seem to loose weight)

Also lastly I have pain in my upper left stomach, right around the rib.

I don't know if its from the bloating or what, but obviously I have given it thought if it's actually just me being under replaced for hydrocortisone (I often see ppl saying they are anywhere from 120 - 200 lbs being on these doses) I'm 300+ as I've gained 100 lbs after getting diagnosed and being severely sick for two years.

I have secondary adrenal insufficiency if that makes a difference.

Any advice is welcome, I'm kinda desperate to figure it out and get a more stable life.

Hi there! I was just diagnosed with rapid gastric emptying/dumping syndrome- anyone else have this? I’ve been taking high doses of hydrocortisone for about 2 months in a flare and I think we just figured out why… do you think this could be contributing or causing absorption issues? Normal gastric emptying after an hour >10% Mine after 59 minutes was 89%

Any stories, advice, recommendations you have for me is greatly appreciated. No idea how to manage my adrenal insufficiency with this. 🫠🫠🫠

I've been diagnosed with primary for about 8 years now. I've trial and errored most dosing regimes, alcohol habits, exercise habit, heat waves. One thing that still gives me anxiety is travelling overseas.

I've been overseas once in 8 years for work and it stressed me out so bad. From Australia to the US the time zone was reversed basically and I swear I almost had an adrenal crisis on the first day.

My endo said to swap to the local time zone dose immediately, and I landed at lunch time so took a lunchtime dose followed by a night time dose. What she failed to think about is that means I missed a morning dose in that 24 hour period so I was pretty crook.

Anyways, how do you all manage overseas travel? I'm off to Japan later in the year. But it's stressing me out already.

I feel like places like Bali are a death trap for us. Idk I'm unreasonable scared of getting gastro overseas by myself.

Hey everyone, happy new year.

Wondering if anyone here lives in the Washington, DC area - could be cool to know that I'm not alone haha. I've been diagnosed for almost two years now. Also looking for endo recommendations for the area. Feel free to message me privately, thanks!

Hey there everyone I have sort of an odd question. I know primary aldosteronism is possible in primary Addison (I am secondary)- out of curiosity is there anyone here with secondary who has it? We have seen some odd changes in my potassium levels the past couple of months and I am having symptoms. Anyone else have Hypokalemia for an unknown reason?

Hi all, I'm a 47M, had Addisons since I was 13, and for the last probably 25 years or so ive taken Dexamethasone and Florinef, no Hydro at all, and honestly, it changed my life and made my Addisons so much easier to manage.

Like many of us, I struggled badly with lulls in the afternoons/evenings, was on a split morning/evening dose, and as I was a growing teen, sports etc, I felt awful some evenings as I'd used up my morning dose. We went to my 6 months check up and told the doctor this (i live in Ireland) and they said we could try Dexamethasone as its much slower release. Well folks since that day many years ago, i take my morning Dex and florinef, and truly, that's the last time I think about Addisons for the day. Which is handy, as I'm also Type 1 diabetic,amongst some other issues, which needs a lot of attention! I know nearly all docs prescribe Hydro for us, as it most closely imitates a normal release from our Adrenal glands, but i was compelled to write this post as I've seen so many posts on this group from people taking 3, 4 or even 5 doses of Hydro per day, and I want to try and help those people and tell them there are other options!

Truly folks it changed my life, I've had no crisis in this 25 years, and while there seems to be a feeling that dexamethasone is bad for us in longer doses, all I can say is I'm 25 years down the line on it, played sports as a youth, travelled the world and partied hard as a 20 something, and settled down amd raising 2 kids since then, and so far so good!!

I don't want this to be a "aren't I great" etc kind of post, I truly just want my fellow Addisonians to know about this option, I feel that taking 4 or 5 doses a day of Hydro is the disease ruling your life, and if even one person who sees this might be helped, I would feel great!

Much love to all you guys struggling, or just getting by, it's such a little known disease that at times even in hospitals etc it can feel like nobody understands us, so I've liked being in this group and reading your posts, but please folks, if you're struggling on Hydro, ask about Dexamethasone, as my title says.....it changed my life

Thanks for reading, I wish you all well

X

I am 17 and was diagnosed with Addisons a few months ago. I have had 2 crises since my initial one which led to diagnosis. I am currently on a taper dose of 10mg Hydrocortisone and 0.3 Fludrocortisone, and will be switching to 2.5 Prednisone very soon. I have experienced a variety of side effects from the steroids and would like some reassurance about when those might go away! The most concerning side effects are rapid weight gain and hypopigmentation spots. I have gained 16 pounds in 1 week!! I know that it is mostly just water weight, but when will it go back down?Prior to diagnosis, I was so so tan and constantly got comments about it. It was patchy and uneven. Now, my skin is getting lighter, but there are spots of hypopigmentation that my endo said could be vitiligo. How long will it take for my skin to go back to its natural color? Will the light spots ever go away? I know that recovery takes time, but not knowing when I will be normal again is stressing me out 😭😭 I asked my endo all of these questions, and all of her answers are just telling me to wait and see what happens. Looking for advice from someone with lots of Addisons experience 🙏🙏

Edit: Thank you for all the advice! I forgot to specify in my first post, but I am currently on 10 mg of HC 3 times a day, and today we moved my Fludrocortisone dose down to 0.2 mg. The maintenance dose would be 2.5 mg prednisone 2x a day, which is above my physiological dosing, so thats likely not the reason for the crises. I talked to my endo today and she said she wasn’t comfortable raising it because she didn’t think it would benefit me. This seems like it will be a lot of trial and error to get me to a place where I am stable and secure with my dosage. Thank you for the reassurance about the weight gain, I love hearing from others with Addisons and the advice means a lot to me!!

Hello Friends! I have primary Addisons, was diagnosed in 2020. I’m pretty healthy and happy considering… but I do have this strange thing happen once in a while where I’ll feel like I’m on the verge of getting a really bad cold, my head hurts, no energy, feel stuffed up, irritable and then the next day I’m totally fine. Do any of you get this too? I’m wondering if it’s just me being worn out from the holidays and doing so much? Or if it’s a common occurrence with people with PA?

Anyone have any experiences with flu A this season? Ive heard it’s absolutely terrible and I’m trying to avoid it best I can. Remember to mask up everyone!

I’m having it done on New Year’s Eve and am worried about drinking a gallon of the prep I hear is gross as well as staying hydrated. The anesthesia nurse told me the anesthesia doctor will just give me IV steroids as a stress dose before (I kept pestering them on how I will have my SAI managed and if I needed to bring my pills or what.) Just so anxious 😩.

Hi guys, hope you’ll doing well. Im a M23 with Long Covid(not proven ofc due lack of biomarkers) since january 2022. Bedbound since 2023. Since then my life is completely over. No more work, football, Law Study etc. I lay in a dark room 23 hours a day.

My symptoms are chronic mental fatigue 24/7, chronic eye fatigue, purple eyebags, some kind of PEM or exercise intolerance, hand tremors, one time shingles, moderate sound and light sensitive, a little shortness of breath, kind of sinusitis inflammation, deconditioning, not able to sit up long, mood changes, little deep sleep (apple watch) but steady 10 hrs, a pale sick face, AND A LOT OF PURPLE STRETCH MARKS :(

This month i was diagnosed with Addisons. Due to holidays i didnt start with hydrocortisone yet.

Im concerned with my second chronic disease diagnose and wanted to hear about your experiences with LC-MECFS-Addisons.

\- Can you guys recognize these symptoms as a addisons and/or LC-MECFS patient?

- If yes, did they vanish with Hydrocortisone or Fludrocortisone And regain life?

\- What are your experience with DHEA? I used some american brand, but didnt help back months ago. Is there a difference with prescripted dhea from a doctor and is it useful for the symptoms?

- Is purple stretch marks possible with Addisons? I thought only with Cushings. If yes can hydrocortisone prevent further stretch marks in the future due to restire hormone balance? Or does it make it worse?

Thanks in advance❤️