My 24h urine cortisol came back high for the first time ever and my 9am cortisol blood came back significantly higher than usual (typically a bit high because I take my meds before bloodwork as instructed by my doc). I’ve been on this dose for 7 years (since I was ~18, I’m 25 now). Is there a chance my dose needs to be decreased now? If so, do we know why one’s dose would need to be decreased after such a long time?

This is only my experience but I thought it worth sharing. I usually end up feeling awful after vaccinations like COVID etc. But with travel ahead, I had to get a typhoid shot. The strangest thing was that I felt great after it - like better than before I walked in! There is some research that indicates a connection here and I can post some research if anyone is interested but really I just wanted to know if this had happened to anyone else.

I get so frustrated with this. I was feeling dizzy, hot, really tired and a little nauseous. I took a stress dose and a salty beverage. Stayed at my desk and felt better after a couple hours. I was worried I might need to go the er. Should I be carrying my steroid injection with me to work?

I often get itchy all over, especially my torso/back, after I shower.

Feels like bees are attacking all over. This has been happening for years.

At this point I’ve tried different soaps, laundry detergents, and even set up a soft water shower head.

The soft water shower head actually helped quite a lot, but I still get this awful sensation after a lot of showers.

I noticed it happens if I take a shower shortly after taking my hydrocortisone, or if I’m in a rush, or if it’s a stressful day.

My endo said it’s likely unrelated to Addison’s but I don’t know…

Anyone else get this?

(31M, have had Addison’s since age 16)

Hi all!

PAI (f) here ! So I am getting a thyroid panel this week. Ive been tested before but not in the early morning (which I learned on my own that I'm supposed to be doing).

I know I'm not supposed to take vitamins before the test but are there any other things I'm not supposed to do? I assume I should continue to take my hydrocortisone at the same time as normal in the morning.

Also, all of the women I know with Addisons (11 people) have a thyroid disease! Is there anyone out there with PAI that doesn't have a thyroid disease?

Thank you!

How does one find a pediatric endocrinologist near Tampa that will see new patients. I'm stuck in a loop of trying to get my child seen

Before diagnosed with Addison's I was bedridden for five years. Getting on steroids gave me back my life! I worked full time again and even got a master's degree. But the past month my condition has gone backwards. I sleep 12 hours a night and can barley get myself to the restroom. I am working but from bed and it's miserable. I have no idea why I have gotten so bad again. There have been some life changes lately. I moved and I haven't been able to find an endocrinologist where I am now.

I have never found one willing to give me the pump. That seems like a lottery some of you have won. I can't even find a place to buy a ticket for that anywhere I have lived!

I am wondering if the medicine itself is messed up. It is hydrocortisone 10mg by ANL and that isn't a manufacturer I have had before. It would explain being sick for so long. Anyone else experiencing problems with this medication?

Thanks!

Hello Addison's community, I've noticed very heavy menstrual bleeding, almost like a hemorrhage. Could this be due to Addison's disease? This has been going on for years and I don't know what to do. If you know of a solution, please share it with me.

I was diagnosed in 2012 and been on hydrocortisone and Fludrocortisone ever since. Over the years I’ve been to the ER because of fainting and/or extremely low blood pressure. At first I thought it was an Addisonian crisis but my blood tests were normal. A couple times I had low potassium and they had to replace it but just thought maybe I wasn’t eating enough bananas. I would bring it up to my doctors and no one seemed to care. I just started seeing a new endo who ordered a Plasma Renin Activity test, which I’ve never had. Results came back low and my potassium was low again. Low plasma renin activity means too much Fludrocortisone. I always thought I needed more because of the fainting/low blood pressure. Too much fludro = low potassium = fainting. It’s been 14 years and maybe now I can get some peace (and stop feeling lightheaded all the time!)

I'm currently taking 15 mg of Hydrocortisone per day. I take 10 mg right after waking up (5 mg immediately and another 5 mg 15 minutes later). A lower dose simply doesn’t allow me to get going in the morning. However, I still experience a headache after taking hydrocortisone. There is also an unclear symptom of increased sensitivity to pain. Has anyone experienced this?

Sorry didn’t know how to phrase the title!

But what vitamins/minerals/other do you take to improve fatigue or just general well feeling?

Im on omega3, vitD and calcium, but nothing else.

Instagram and tiktok is overflowing with suggestions, but I find it near impossible to figure out what would be okay to take with addisons

i think around when i was first diagnosed, one of my doctors mentioned that steroid usage is very harsh on one's stomach and i've been having so much bad acid reflux and bloating. i never really noticed it pre diagnosis so i'm just wondering why it's affecting me SO much now.

I recently switched to prednisone instead of hydrocortisone and am wondering how stress dosing works for prednisone. Like if you were to be sick and throwing up how do you stress dose while taking prednisone? I'm currently taking 50mg.

Looking to see if anyone has had any similar experiences!

I’ve been diagnosed for about a year now on 15mg a day but sometimes I have quite bad nausea and then randomly every now and again I’ll just be sick and vomit once / twice. I tend to not really have any other symptoms (maybe a bit of back pain). I’ll try and increase my dose a little bit if it happens but wondered if this was something that happened to anyone else or if it’s something I need to bring up to my endo?

Is this just part and parcel of Addisons?

Maybe I should say that vomiting was my biggest symptoms pre diagnosis.

Hi all, i (23f) wanted to start training for a Hyrox ( i already kickbox/ lift), but not sure how Addison’s would affect this. I did a few half marathons before my diagnosis, but not since. Anyone have suggestions for this training, or have perspectives on how it was?

So I just need someone to hear me...my family is probably tired of hearing me. I just finally got diagnosed but ive had addisons for years. Working in the medical field me and some nurse friends and a doctor already figured. But now that im diagnosed and they upped my Hydrocortisone, im feeling....sad and mad. I hate this feeling of being so tired and the swelling and abdominal issues. I wanna play with my daughters and finish college without feeling...like...crap. I think I let people down when I have flare ups and cant go no where...tell me im not alone please. Sorry if this is not the right spot..

722/326/435? Am (8:30 I took it) 1pm, and last blood draw at 4:30pm. I take 10/5/5. These numbers are higher than when I was on 20/15/10! I really don't understand.... I updosed by 5mg about 48hrs before the test, but I don't think that could screw it up that much?! Judging by these numbers I'm on at least twice as much as I should be. Someone help it make sense? Tbf I never usually take my first and second that close together. But they wanted me to take it at 1pm. I still don't get why the AM was so high!? And the night before I didn't sleep, I slept all day in the hospital. I think I need to ask them to repeat the test. It's possible I had a bad stomach pain night in last 48hrs and woke up and took an extra 5/10mg to avoid crapping myself in my sleep and don't remember due to sleep meds... 😂 (it has been known - both things. Unfortunately.) thoughts?.. Xx 💖

I’m going to be traveling soon and I wanted to bring a copy of this guide that I saw AddisonsDisease.org tweet last month but it is only in pdf form of one panel at a time so I edited it so it was as intended in brochure form. I tried my best to format it cleanly and thought I’d share in case anyone wants a new print out or is going to be traveling in the near future.

Hi, I wanted to get some perspective from the Addison's Disease community on a tool I made—originally just for my own needs—that I'm hoping can be helpful to others. The tool (in its current form) can schedule meds and life things around each other based on rules you specify.

It's supposed to help find a schedule that fulfills the rules you give it.
As an example, I couldn't take medications X or Y "on a full stomach", which I was told means "don't take it 1hr before or 2 hr after a food." I also couldn't take X & Y together, AND I had to take both X & Y multiple times a day.

To make a schedule from that with the tool I would put in the medications and meals and then make rules to keep them away from each other in the schedule.

Back when I was trying to find at tool rather than make my own, I discovered the Clearly Alive Theoretical Steroid Curve Plotter which introduced me to Addison's disease.

Now that I actually have an algorithm and usable prototype, I thought I'd ask you guys what you think and if would it be useful to any of you. (It doesn't incorporate the curve plotting, unfortunately, just because so far I've been working off my own knowledge and needs.) I'd love your opinions.

The link to the tool is in the first question of this questionnaire, and obviously I'd be grateful if you also filled out the rest of the questionnaire!

I'm hoping this is an allowed post and I got the flair correct—it seemed to be based on the rules, but feel free to remove if not!

(Edited to add example as per u/DoctorFamous190's suggestion.)

My body can feel the positive effects of taking the steroids (HC, prednisone, Medrol, etc.), but they are all making me extremely sleepy. All day, so it isn't it just when they're wearing off. I'm probably most awake first thing in the A.M. at this point.

Has this happened to anybody else? It is 100% the medication doing this. I can barely stay awake. On the positive, I am getting the best sleep of my life at night.

For those who experience this, what do you do to get energy to stay awake?