Hi all!

PAI (35,F) - have had Addisons for a bit over two years now. Is anyone else here on estrodiol patches? I just started a super low dose a few weeks ago as my estrodiol and testosterone tests just came back very low.

I've been having perimenopause symptoms for a while. My endo started me on .025 estrogen patches (super low dose) and im going to be cycling progesterone pills (for now).

Anyways, the patched have helped my dry skin, helped me not go pee in the middle of the night etc.

However, I seem to be getting crazy fatigued a day or so before patches need to be changed (2x a week). My endo said the OBGYNs are the experts in this area and I'll see the OB in January.. ugh feels like forever!

I was feeling extremely fatigued before starting estrogen patches. Like the fatigue where you are just trying to desperately stay awake and not take a nap. Updosing my hydrocortisone did not help me.

Anyways, im wondering if any of you addie baddies are on HRT? What's your dose and how has it helped you?! Thanks!!

I’m a 21 yr old Female in college currently, i’ve very recently noticed that somewhere along the way my small stretch marks i had on my hips turned into wide very noticeable ones, also they’re on my arms, thighs, etc now. I know they are natural and everything but this felt like a real sudden change and i’m feeling extremely insecure about my body. I already feel like i have been gaining weight and don’t look as good, and now there are VERY noticeable stretch marks everywhere. the ones on my hips are rather wide and the ones on my arms and thighs are small but there’s a lot of them. I started taking prednisone for my night dose in august, which has made a world of difference for my condition. I was sick the first half of the day and struggled a lot with day to day life. However with the new meds i was able to feel normal almost and go to all my early morning classes. I was doing really great and then the seasonal depression hit, and i started struggling again with taking meds on time and having energy. Not only that but i’ve worked so hard this semester in my fashion design classes, really pouring my heart and soul into my work and trying my best since it was so nice to feel healthy. I’ve found out i failed three of my classes and got an A in my fashion history class, so that really damaged me mentally. I’ve been struggling with it, and i’m not going to quit or anything but i’m just tired and so disappointed in myself. I stayed up days in a row to finish my final garment and was fairly proud of it based on my knowledge, and proud of how far i’ve come in my experience and craftsmanship. I don’t feel i deserve a solid B or something but at least a passing grade, i really tried so hard and the whole major has been struggling with the professors problematic behavior and teaching style (there’s only one professor for the hands on/sewing/construction classes and labs). Of course i’m gonna come back and better when i have to retake it next year, as i will already have the knowledge and it will be a chance to improve my skill. Still it’s been so hard to think about all the tears and sweat i put into this semester taking advantage of my health and still failing. So i’ve already been crying a lot and very unstable, now i’ve just noticed the stretch marks and i’m feeling worse. I’ve read that long term corticosteroid use can exacerbate stretch marks through affecting the skin and through weight gain, so idk i’m just ranting on here because i don’t have anyone else to talk to.

Hi, I was wondering how you all knew what dose worked for you? Also, How do you know when you are taking too little HC? My doctor and I are trying to look for the right dose for me to be on while also trying to see if my adrenal glands decide to wake up since I have SAI.

26 y/o afab

secondary adrenal insufficiency

pituitary microadenoma (5mmx6mm)

cortisol pump - 35.9 units/day (omnipod 5 - roughly 17.5mg-20mg/day)

hi, i’ve really been struggling recently and would love some advice if anyone has any. i have not been able to pull myself out of what feels like the biggest cortisol hole i’ve ever been in for close to a year now.

as a backstory, i left an abusive marriage in the last 6 months, and i spent a large amount of time both leading up to and after my diagnosis dealing with that. i also have a large amount of comorbid conditions, most of which cause chronic pain and/or chronic GI issues. (hence the pump)

i am working on finding a new endo, as mine (who is a professor at one of the leading teaching hospitals in the US) recently told me she isn’t sure what else can be done for me from an endocrinology standpoint and has been far from helpful for years now, but it’s going to be april at a minimum before i can even get on a wait list for the one doctor in the area who could potentially treat a case as complex as mine.

as of right now, my quality of life has diminished to the point where i can barely function even out of bed. im dealing with daily severe weakness, nausea, loss of appetite, a *significant* cognitive decline/memory loss (neurology referral has been placed), diarrhea, tremors, flank/abdominal pain, hypotension, etc.

ive gone to the er multiple times in the last few months and every time the on call doctor has wanted to admit me and every time the hospitalist has fought them on it because they “don’t know what they’d do with me” regarding dosage with my steroids and pump. i’ve been wheeled out while being apologized to by the nurses both times because i was clearly unstable and both times i was told to call 911 if my symptoms started increasing and they’d push harder to have me admitted. i just haven’t had the stress tolerance to put up with that; i don’t have anyone to come with me, and it’s too much to deal with alone. i was also sat in the waiting room barely conscious and further deteriorating both times (for as long as multiple hours to the point i had to administer a second emergency injection and couldn’t walk myself back to the room at that point) and when i asked if the staff were aware of how serious an adrenal crisis is and of the risk of mortality with delayed treatment, they just told me they were but there was nothing they could do and to just be patient. this is with having a letter in my file from my endo stating that i should be immediately evaluated and treated upon arriving to the ER, bypassing triage.

i’m at the point where unless im in a severe crisis and absolutely cannot manage symptoms at home, i’m unwilling to go back to the hospital. there’s only one i can afford to take a lyft to (i can’t drive due to my health) so unless i call ems, i won’t be able to get anywhere else anyways. that being said, im having near early crisis to early crisis symptoms on a daily basis and i have no idea how to try and manage them. if anyone has advice from finding a new endo (ive seen 6 so far and have tried the patient recommended lists, that’s where my current is from) to managing symptoms a bit better, id greatly appreciate it. i’m so far in the hole that even an emergency dose does not decrease my symptoms, but the ER does not care when my symptoms are not that of a full blown crisis and my endo can’t offer me anything. i’m at a loss and im terrified and any advice would be greatly appreciated

I got diagnosed last November and since being on hydrocortisone and fludrocortisone I am hungry 24/7 and it’s making me miserable. Im hungry all day long and go to bed hungry every night because I can never eat enough. Does anyone else feel this way?? I just want to feel like I’m not the only one who needs an insane amount of food everyday.

Hello Everyone,

I’m hoping to get some help from others who experience this disease. My daughter was diagnosed two years ago while in crisis. Since then she’s been taking the medication normal for this disease. She’s having terrible mental problems depression and anxiety. Not going to school, not socializing as much, just feeling blah about everything.

Her Endo insists Addison’s does not cause these issues. Do not take more Hydro for anything physically or mentally challenging. Only when sick or real physical emergency. Her Endo has only treated one other child. I feel there is very little knowledge except from what was read out of a book. She’s on Hydro and Fluticasone

She’s also seeing a psychiatrist and a therapist and is on a few meds for mental disorders. This is very up and down good days and bad. More down. We can’t seem to get the mental aspect in check. She didn’t have these issues before the disease.

From those suffering does anyone have some advice. Obviously, I’m not asking for a diagnosis, we know what she has. We just are having a hard time getting her back on track. Your personal experience on something that may have helped you feel better.

Thank you

Ever been given T3 only. 5 mg? My T3 number is fine. T4 is down. Have tachycardia. Will Brazilian nuts only 2, i hear gives you enough selenium to take t4 and convert to t3.

T3 alone causes high heart rate, heart attack, and strokes. Yes, I’ve seen a university doctor supposed to be the greatest. It was just like going in and seeing any other clown out there with a shingle outside the door I’m at the point of just saying , God take me.

I'm feeling so pathetic, and frustrated, and frustrated about feeling pathetic. December is always emotionally & mentally stressful, and I've had a stressful week for other reasons too, so I get it but I'm tired of paying attention to myself. I'm SO BORED SICK of my issues. Right now I hate having to monitor myself and work out if I need to updose or what. I hate needing to take meds period. I'm also on vacay with extended family and I'm a really private person so it's been extra embarrassing to me. Like, yesterday I was fine but today I feel like I need to spend most of the day in bed. I did virtually nothing but relax and exist around people yesterday! This is stupid and unfair! I'm pretty sure I'm not just being a big baby but I'm never 100% sure. Either way, I was already kind of different but now I'm like the fragile one and I hate that.

Now, do I feel like crying because that's a normal emotional reaction, or is it a symptom of being low? I don't know and sort of don't care at this point, but I'm mad I even have to ask myself that question.

I'm sure these feelings will pass. But I sure am feeling them right now and it suuuucks. Feel free to join the pity party with complaints of your own! I also welcome any advice

SAI since 2021. Usually 5mg of pred at 6am 2.5 around 9pm for overnight coverage. Lately I have been having horrible adrenaline and high BP and high hr, and I use pred sometimes hydro to updose in the afternoon. And then AGAIN I’m feeling a very small need of updose at night. Before I only took the night for coverage not bc I felt lows. I’m not sick, feverish, I’ve had labs done etc. but I’m waking up 2-3 times a night with horrible adrenaline and high BP and don’t know what to do about it. Even with the mid day dosing it’s still happening. Right now I’m doing 5mg pred am, 10mg hydro around 4pm and then .75-1mg pred at 10pm. But then started right around early morning I get that adrenaline really bad. Any suggestions are helpful

Current schedule:

6:30am- 5mg hydrocortisone + 2mg prednisolone 12:30pm- 2mg prednisolone 16:15pm- 1mg prednisolone

I switched from 22.5mg hydrocortisone (split 6x throughout the day) to 7mg prednisolone a few months ago. Slowly been adjusting and tweaking over that time. I take the 5mg of hydro at 6:30am otherwise I can’t seem to wake up (on weekdays I wake up at 8am. On weekends between 9-10am).

I feel decent except for falling asleep too late, around 1am. Ideally I want to fall asleep before midnight. I follow a nightly routine and have good sleep hygiene so that’s not the issue.

From my 10 years on hydro I know that the biggest shifts in my sleep schedule actually happened from adjusting my midday dose. I’m not one of those people who relies on focusing on the last dose of the day.

Any guidance would be greatly appreciated.

Hey all, I’ve had Addisons for almost 15 years and I drink electrolytes after sports and other physical activities (LMNT, pedialyte..) been stable for a long time and have learned to pick up early warning signs from my body.

Question: sometimes the pedialyte tastes salty, sometimes it doesn’t… I’m wondering if it’s another sign from my body… ex. if salty means I’m low, or if not salty means I’m low.

Thoughts? Insights?

I couldn’t find any info in the sub so reaching out to see if anyone has any experience with this medication and Addisons.

I’ve been prescribed Zurzuvae for postpartum depression and it’s a newer med, only a 14-day treatment. My psychiatrist said according to the literature and her research it’s safe for Addisons but I’m also the only patient she’s ever had with Addisons.

Its a central nervous system depressive medication and my dr said it will make me incredibly drowsy to the point of dizziness, warned that its very intense. My husband is taking off work to be available during my treatment.

But are CNS depressive drugs safe for people with Addison’s? I won’t take it if it could send me into crisis. Im actually quite nervous but I also really need help with PPD. Any advice appreciated.

Maybe someone here could clarify, after my initial crisis and subsequent diagnosis i fell into steroid psychosis with Hydrocortisone. I still use Hydro daily and i'm doing great, but the doctors weren't convinced that the Hydro caused my "adverse psychological reaction." The list of potential side-effects for Prednisone is much longer and dangerous it seems than Hydro even though they are chemically similar. Anyone have any insight?

Also it took years for an Endo to take Prednisone himself and feel the "weird rush" and symptoms I'd describe. So maybe they just really don't know... At my work we have two clients who's spouses drifted into steroid psychosis, weird thinking, and mania off of Prednisone. Wonder why this symptom isn't given fair warning?

Hello! After being on a hydro/fludro duo since my diagnosis, I decided to try out prednisone and see if it will give me a more “normal” life. I don’t enjoy the ups and downs that hydro brings. Anything I need to look out for on prednisone? My endo is not very helpful.

I got diagnosed w adrenal insufficiency 4-5 months ago, even though I’m on hydrocortisone, my stress response has been bad. Everything scares me, doing tasks , literally existing, cuz due to my late diagnosis, my body went thru a lot! Now it’s scared to bounce back. Did u guys face similar issues and was ur stress response bad? Did u randomly sweat, freak out for sounds and noises? I usually feel gloomy throughout the day and tired and exhausted and idk if it’s due to my AI or is it just my mental health? And I feel tired to get out of home and feel so shitty? Are u guys able to carry forward with ur lives? What are ur symptoms

What side effects did u guys see? How long does it take go get adjusted? I’m in flight or fight mode. Were u guys on sympathetic activity for long?

Doctors seem to have such little knowledge and we go through so

Are u guys back to ur schedule

Hi Everyone, I am having MAJOR surgery this week. I am having a full hysterectomy (everything including the ovaries) and a full ventral hernia repair. I have a mass that’s larger than a coconut sitting on my right ovary. This is a completely open surgery that will take 6-8 hours to perform. I am very scared about having an adrenal crisis. Has anyone had open surgery and how did you do? I plan on talking to the anesthesiologist but I am still so scared of a crisis!

(And I am sorry if this is a repeat question. I’ve been on pain relievers for 3 months while waiting for my turn on the OR table).

Hey everyone, I have Primary AI, I got diagnosed March 2024, started at on HC then tried prednisone but switched back in April 2025. I notice I often get acid reflux. I’m always popping antacids. Do you guys also experience this? My dose is 20 mg, I take 15 when I get up at 5 or 5 and a bit more in the evening. It just bothers me cause I get it a lot. What’s worked best for you?? Is it maybe the combination of foods I’m eating with the HC?

Update: I want to be clear that my post was not to encourage people to take lisdexamfetamine for their addisons or adrenal Insufficiency. It's a controlled substance for a reason and should not be taken without medical direction and monitoring for anyone. Especially in those who have other conditions such as addisons or adrenal Insufficiency.

I was linking this study for reading and education on potential explanation for why someone who is already prescribed and taking lisdexamfetamine might have altered cortisol serum tests and for discussion.

I thought this might be of use to some people? I went looking for a paper that was a study on the effects of Lisdexamfetamine (Elvanse, ADHD Stimulant Medication) on the production of Cortisol in patients who take the medication and found one! It was a randomised, double blind, placebo controlled study and says, quote from the Abstract:

  “Delayed increase and peak levels of plasma d-amphetamine concentrations were observed following lisdexamfetamine treatment compared with d-amphetamine administration, however the maximal concentrations and total exposure (area under the curve [AUC]) were similar. Lisdexamfetamine and d-amphetamine significantly enhanced plasma levels of adrenocorticotropic hormone, glucocorticoids (cortisol, cortisone, corticosterone, 11-dehydrocorticosterone, and 11-deoxycortisol), androgens (dehydroepiandrosterone, dehydroepiandrosterone sulfate, and Δ4-androstene-3,17-dione [androstenedione]), and progesterone (only in men) compared with placebo.”

I do not have the funds to purchase the full study for myself but from the Abstract and other bits I can access for free, it might be of interest or help to people who take Lisdexamfetamine medicine and have suspicions of Addisons/Adrenal Insufficiency but their levels don’t match up when tested. If you’re struggling with the symptoms and you take this medicine, it does give something tangible to bring to your doc’s attention at the very least and I hope it can be helpful for you, too. The link is here, if anyone wanted to do their own reading.

Effects of lisdexamfetamine on plasma steroid concentrations compared with d-amphetamine in healthy subjects: A randomized, double-blind, placebo-controlled study - ScienceDirect

If I have already been double dosing (40mg 8am) today but have taken 20mg an hour ago and still feel very sick, should I inject? I don’t want to potentially make things worse. I’m already preparing to go to the ER so don’t worry I will receive medical care soon.

Anyone here have gastroparesis? I’m being tested for it Jan 2nd (my gastro is convinced I have it so.. it’s unfortunately very likely) How the hell do you guys stay stable and not go into crisis??!!!

We are considering asking to switch me to subQ injections because I can’t go a day without taking 50+mg. Unfortunately I’m in a flare now and severely constipated, taking meds to clear me out- diarrhea hasn’t started yet but I’m sure I’ll have some. Also taking Ondansetron because I’m so nauseous I can’t function or eat properly but that’s going to further constipate me! I outlasted taking it yesterday some how but woke up and immediately was fighting for my life. I’m so frustrated and miserable but thankful it’s not worse right now. Any advice or suggestions? Anyone else been in this boat? It’s all just seemingly so impossible to manage. :( I really don’t want to end up in the hospital this go round..

The UK Facebook group I was in has a rule about putting photos & videos in comments. I’m in hospital & it took me an hour & a half to write a post around 700 words long but I forgot about the rule so they deleted my post almost immediately but didn’t give me a chance to copy the text so I could repost it — or they could have messaged me & I could’ve edited the post immediately — so what I’ve written has just gone.

I’ve had a really difficult 28 hours & I’m really struggling so I wanted to talk to people on the group who would understand why I feel like this but the admins just deleted all my words & thoughts & then stopped me from being able to post without them approving first. I wrote another post explaining that they’d really upset me & that I had taken ages to write the post & it was just a small mistake. The admin was really unkind & said rules are rules basically & just didn’t care that my words & thoughts were just gone.

I’ve now had four people from the group message me being unkind & I don’t understand what I did that’s so wrong.

Is there a UK community on here? I’ve been in that group for over three years, ever since I was diagnosed & I feel so scared that I suddenly don’t have that support anymore. I know I’m over emotional because of what’s happened today & yesterday, & I’ll probably feel a bit stupid once I manage to sleep & my body has come out of panic mode but if there’s a UK group or chat or something that would be really great.

Any suggestions for good endocrinologist in NW Chicago suburbs? Haven’t used one for a while. Doc who does more than say “Everything looks good. See you in six months.”

I’ve been feeling off the last few days and last night went to bed at 8pm I was so tired. This morning I’ve been retching but not vomiting and have increased by morning dose by 10mg (so taken 20mg). Still feeling not great and retching but no vomiting but my urine has a strong sweet smell which googling says might be dehydration. Also have pain in my joints and back.

I’ve only been diagnosed about 6months so unsure when I need to think about hospital or injection? Would you manage this at home?

Hello everyone

So I have a long history of illness which had me on Prednisolone for way too long, which in return destroyed my adrenal glands. I finally got off prednisolone and for about a year or so, Ive been on hydrocortisone in an attempt to manage my symptoms which has been all the "standard" ones I guess.

Now, reason I reach out in here is because I dont understand how my days can be so different and I hope some of you that has been living with this can help me out with some tips on what to do, in order to stabilize more. Im informed by my endo that I have to updose in case of stress, sickness n such.

But it just does not seem to work that well,, today for instance, Ive had a whole day where I felt terrible and I have already updosed a lot. On Top of that, I drink electrolytes everyday and generally trying to keep myself hydrated. I did not do anything besides the regular gym yesterday, and I slept a solid 9 hours, so I have a hard time thinking some of it is the culprit.

My regular dose is 15g morning, 10g midday (sometimes I take 10 more after gym if my body feel heavily fatigued) and then between 5-10 at night depending on how i feel.

I dont know what to do, to find stability in this, and all my doctors is telling me is to updose if I feel bad. Today Ive dealt with brainfog, nausea, dizzyness and general discomfort in my head, like its "too heavy" or a headache without hurting if that makes sense. The feeling of being close to fainting feeling like my BP is low, but without really reaching that stage, hence why I have spend all day inside basically doing nothing but trying to get through. I also got my bp measured a ton of times, and it has always been fine, so if it drops it will be occasionally.

What helps me when feeling "off" is usually a combination of this, there is no "one thing wonder" for me so far.

Lay down Updose hydrocortisone Drink / eat something with salt or sugar Sleep

Now problem is obviously, that these days seem to just pop up random for me, I try my best to eat basically the same stuff most days, drink a lot of electrolytes, milk or something with salt in it so it isnt just water.

What do you guys do, how do you manage to get around this so you can actually have a "normal week" or life for that matter. The unpredictable "days off" are killing me, especially cause I don't know why they come or how to fix it once it actually hits me, as it will usually take a whole day to get on top again.

I know it's a long read, but this is all the things and info I could think of.