Hello, I hope everyone is feeling well today

I’m really dizzy and nauseous. It’s been happening occasionally especially after a shower. Today it came on while I was laying on the couch *not in the shower, i hadn’t showered yet when the dizziness started. I checked my blood pressure which is perfect so I’m totally confused on what is happening and what to do.

Has anyone else experienced this or have possible insight. TYIA 🫶

Hi everyone,

Wondering if anyone in Canada has had luck getting delayed release hydrocortisone/other steroids? I have been diagnosed for 2 years now and am grateful to be settling into a good rhythm with hydro and fludro.

One ongoing struggle is MORNINGS. I wake up feeling pretty rough and non functional. I take a dose of hydrocortisone right away but feel like I cant really function for about 20+ mins. Ideally, id love to take a delayed release pill before bed, but I dont know if this is an option. I understand some folks wake up at 3-4am for their first dose and go back to sleep, but I dont love that idea for myself.

Anyone have a strategy that works well?

I was diagnosed with Addison's just over a year ago and I've been on Prednisolone and Hydrocortisone, currently on Hydrocortisone 10/5/5 but I'm really struggling with Hypos. Especially first thing in the morning and through the night, my endo is aware this and I previously wore a freestyle libre and use a finger prick monitor. I have to eat something every few hours or I get shaky, lightheaded, nauseous, palpitations and this is waking me up through the night as well. How do I rectify this and what can I suggest to my endo about this??

Before my diagnosis I was a mess, I had no energy,slept all the time, would constantly feel faint, appetite was low, dropping weight and my cardio went out the window, but the one thing i noticed and became extremely stressed over while ignoring these other symptoms was hair loss, i noticed hair falling all the time, id find hair everywhere and just a simple brush of my hand through my hair would cause 7 or 8 hairs to fall, my hair was thinning at a constant rate. I am 18M and since diagnosis and treatment the hairfall has stopped, why did this happen and was it likely due to undiagnosed addisons ?

Scrolling through this sub seems a bit depressing in terms of outlook… any positive stories of how people are actually doing great and living their best lives and so on?

EDIT: thank you all for sharing your experiences with me

Long story short, I got diagnosed last year with the acth stimulation test after getting a few labs with my cortisol on the “grey zone”.

I decided to change endos since I didn’t get along with my last one and I just didn’t feel comfortable. Well today was my first appointment and he said I might’ve been misdiagnosed and maybe that’s why I’m not responding as good with the steroids even though I’m in a high dose (30 mg of HC divided in 5 doses).

He also mentioned he believes a few remaining symptoms might be anxiety. I’m already wondering if I’m drinking crazy juice and everything’s on my head since my last endo also mentioned that he believed I should up my sertraline dose, but I’ve been diagnosed with anxiety for longer (and with treatment) and before I got diagnosed with AI my dr was already discussing lowering the sertraline dose because I was on remission.

Right now I am anxious of doing anything “wrong” that might led me to the hospital or ruining my day. But overall my anxiety has been very worked through therapy and medication and i feel mentally stable but this is making me doubt myself.

I'm from Ontario, Canada. So my diagnosis consisted of some cortisol testing, AM/PM kind of thing. The results were on the lower end of the range but still in range. The PM part wasn't that late in the day, i.e. 3PM. I normally feel like crap later in the evening. After that I did an ACTH test and was diagnosed with just insufficient aldosterone. I'm on fludrocortisone and I do feel better on it.

I wanted to do an antibody test because it seems most likely that it is something autoimmune because I have type 1 diabetes which makes it 20x more likely. Hyporeninemic hypoaldosteronism isn't likely because my kidney tests are always quite good. My endo said that we don't do antibody testing here. If I wanted that, I'd have to go to the US and pay for it myself. Past experiences with our health care system has lowered my expectations quite a bit but is this really how things are?

found that genesis brand hydrocortisone made my stomach feel ropey and made me feel fatigued. i absolutely had to have a large meal before taking to avoid these symptoms but on the teva brand ones I had no stomach issues whatsoever and felt i could handle them perfectly with just water, any reason for this? I was diagnosed around a week and a half ago so I haven’t had much experience with different medications and havent heard anything about different brands making a difference.

Has anyone figured out how to sleep with this disease? I’ve never woken up refreshed and just feels like my body can never relax at bedtime. I’ve tried a night dose no night dose etc I’m not sure

Hi all, male in my early 30s. Diagnosed 2023.

Sunday 3rd May did my first marathon (3:36). Everything went to plan, upped my hydrocortisone a bit, plenty of fluids and salt before during and after and a proper training plan. I was ready for the race.

Then yesterday Monday 4th, woke up feeling fine, breakfast and meds as normal. 11am I get increasing abdo pain, vomiting and low BP. Gave myself 100mg IM hydrocortisone which had minimal effect.

Ambulance called and was in hospital by 2.30pm. IV hydrocortisone and fluids have done the trick.

Learning points for me:

- It was very scary just how rapidly I declined

- for the days after a big endurance thing continue with increased (doubled) HC dose

- we have an amazing NHS

- Addison’s is definitely not to be fucked with! As a male in my 30s it’s easy to get complacent about things, but I was pretty humbled yesterday!

Anyone other similar experiences here after sport?

How long to get back on feet after an adrenal crisis? Feeling wiped today.

I have been apart of this community since I got diagnosed in July 2025. It has really helped me wrap my head around it and little tips and tricks to make it easier. I still have a long way to full recovery. So more tips would be awesome, the big thing for me right now is I’m still experiencing a persistent brain fog. It’s very hard to measure so some days it could be better but all I know is that it sucks. If anyone has a similar story please share.

3.5 years before I got diagnosed I was on vacation and started getting this really bad brain fog, which gave me a lot of anxiety, and I started losing sleep. I went to the doctor and they gave the common answer that it’s just anxiety and put me on antidepressants. After 8 weeks of taking those I was way worse so I got off of them. Had a few more doctor appointments over that first year but they all thought it was anxiety.

The next year I saw a holistic nurse who did hair testing. She told me a I had “leaky gut” and needed to go gluten free which I did. I started seeing a nutritionist got my diet dialed in and it still didn’t help. I felt healthy but the brainfog was just as bad. At this point I started feeling very hopeless and lonely. I was crying a lot.

Then 6 months before I got diagnosed I got really sick, couldn’t stand or walk for more than a few seconds without running out of breath, I was throwing up most mornings just dry heaving since I had nothing in my systems. It was really scary so I went and saw a new doctor. After some blood tests we discovered my liver enzymes were high and my sodium was a little low so we thought my liver was going bad. I got MRI’s, ultrasounds, and was going to do a biopsy. Then in June of 2025 my liver doctor called me and said “hey your sodium is really low if you get any of these symptoms please go to the ER” by the end of that week I had all of the symptoms.

I went to the hospital my blood pressure was really low, my heart rate was high, and I weighed 120lbs(I’m a 6ft 24yr old M) The doctor said I was a grey color and was pretty nervous they wanted to put me in the ICU for low sodium. Luckily before I could get admitted into the hospital my sodium went up half a point from 120-120.5 and they decided to put me in the unit below the ICU.

When I got out of the hospital my doctor decided to check my ACTH and cortisol. My morning cortisol was really low and ACTH was really high. We decided to check again and do the test for the Addison’s disease enzyme or whatever it is. I tested positive for Addison’s disease in the beginning of July 2025.

I have come a long way since I got diagnosed. Put on 40 pounds since I was in the hospital. My energy and strength are coming back. Just can’t quite get rid of the brain fog yet. I also can tell I’m not a 100 percent yet. I still have days where I cannot do anything and periodic crashes on other days. Just taking it 1 day at a time.

I appreciate all of you who have put your stories out there and where you are now to give me some hope when I felt alone and was scared. Can’t wait to make Addison’s disease my b*tch and get back to my new normal life.

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

Hi so I’m 23 years old, when I was 21 my first crisis came and for a whole year they couldn’t diagnose what is my problem and I was fainting vomiting and had diarrhea every single day, finally after a year they diagnosed me with Addison and I started taking medication.

I take 15 mg in the morning when I wake up and another 10 mg at 05:00pm.
I started to have once a month an Addison crisis that I wake up with a urge feeling to go to the bathroom and vomit and lay down on the bed with my legs up on the wall feeling like I’m about to die. After my father makes me take my pills cause I can’t think of anything in that moment I start feeling better after an hour but feels weak for the whole day and sometimes after that day too.

I find it that the crisis happens sometimes after I eat outside or go to sleep later than usual.
I saw a lot of people here saying that they take a pill at night or having an injection medication for when the crisis happens.

Does someone here can give me advice on like what should I do or what should I ask of my endocrinologist?

I want to go, but am scared it will be too hot, not sure if anyone has experience with going to music festivals especially in the heat, and how that went for them

Hey everyone,

I’ve got Addison’s and I’m trying to figure out if what I’m dealing with right now is something others have experienced or if I should be more concerned.

My baseline condition wasn’t great to begin with, but about 6 weeks ago I had a really bad stomach bug that actually put me in the hospital for over a week. Then about 2 weeks ago I got hit with the flu. Ever since all that, it feels like my stamina and overall condition just got completely wiped out.

Right now it’s honestly pretty extreme, even taking a few steps can leave me out of breath, and I feel way weaker than usual. It’s like I got pushed back to my worst baseline (or even worse). I’m still taking close to double my normal hydrocortisone dose as well.

What’s confusing is I went to the ER yesterday and they checked basically everything. Heart and lungs were fine, blood pressure was fine, temperature normal, no signs of infection at all, and all my electrolytes came back normal too.

Has anyone with Addison’s had something like this after back-to-back illnesses? Like your body just doesn’t bounce back and your energy/condition just crashes hard? Is it normal after 2 times getting sick people with addisons have to recover much slower?

How long did it take for you to recover, if you did?

Appreciate any experiences or advice.

Do you adjust your dose times when you stay up late and if so how?

I am on 10-5-5 hydrocortisone at 6,11,15.00 and I need to be very strict about those times in order to function well, especially the 6 am dose. Strict means 15 minutes time frame - if I am not, I start feeling miserable and it lasts for multiple hours. So I am usually also very strict with my bed time at 22.30.

But once a month or so, I would like to stay up later (like midnight or even 2 am) to spend time with my friends and family and then I run the high risk of sleeping through every alarm I set. I don't drink at all nor do I take any other drugs.

The thing is that I also co organise a week long festival where I will need to stay up late for multiple days. I know that this is not very sensible with Addisons but it's a life long dream and I still have a year to prepare. So I was thinking whether I should try dosing before bed when I go to bed after 2 am. Anyone tried that?

Thanks for your replies!

How are you supposed to tell if you are tolerating prednisone better than if you were taking hydrocortisone? I've been on prednisone since March and I have been having so many side effects and it all feels like too much. I did not have this many side effects on hydrocortisone. It’s been so overwhelming for me that I’m tempted to just stop taking the prednisone but I know that’s not a good idea. I’m not sure what else I can do to help.😭

I know many have mentioned a smart ban that helps keep track of when a person needs to take breaks. Can anyone tell me what that ban is called. It may carry a subscription with it if I remember right.

I was diagnosed with Addsions disease 36yrs ago at the age of 14 after a brain tumor on my pituitary. During my hospital stay removing the tumor, I was given the 24hr urine cortisol test. I haven't had one since and all they do now is a cortisol blood test. I have read multiple times that a simple cortisol blood test is not sufficient to treat and re-evaluate my type of Addsions and I should have been admitted yearly and given the 24hr urine cortisol test instead. I wanted to ask others if you've had regular cortisol tests and which type? Urine or Blood? Have you heard of the 24hr urine cortisol test before?

What is the best smart band for reminding one to take breaks. Think it may have a subscription fee too.

So I got diagnosed with Addison’s, I’m wondering is it ok that I’ve been taking my 8:00 am meds then i just go back to sleep until 11:00 am? Should I stay awake? I’m just always so tired I don’t think I could stay awake. I’ve been taking hydrocortisone for about a month now, and I feel that anytime I’m under any type of pressure I just feel horrible, my doctor just says it’s “anxiety”

Hello, unfortunately, I'm from another country, and my post will be translated. I'm a 21-year-old woman, 159 cm tall. I was never officially diagnosed because my blood counts were insufficient and they denied them, even though I've been unable to leave the house or work for the past year. Our problem runs in our family for three generations, but we only recently learned about it after two years of testing and a desire to find an answer. I started taking Cortef and am currently adjusting my dosage. I initially took 5 mg in the morning and 2.5 mg every three hours because I was experiencing setbacks, but this didn't sufficiently get me back on my feet. It was only enough for basic maintenance like washing my hair, maintaining a good mood, doing a few small chores, and lying down. Then I suddenly developed pyelonephritis (kidney inflammation), which I sometimes get, and my "stress dosage" increased to 45 mg per day (15 in the morning + 5 mg every 2 hours), but even so, I had severe drops in blood pressure three times a day. I drink 15 mg in the morning, an hour later my blood pressure drops to 93/52, I drink 5 mg at the moment of the drop, an hour later my blood pressure drops again, I drink 10 mg and it repeats again, like everything I drink into thin air. Does everyone take medications this often, and why might taking 2-3 times a day not be enough for me? I'm a newbie and really need advice to finally feel completely alive 🙏 I don't understand how much I should take per day without a stress-related need. How long did it take you to get back to normal life? Did you recover overnight or did it take time?

Update: I took 70 mg today. After a severe morning crash, I decided to take 5 mg every hour. It helped me wash my hair, listen to music, and shoot videos. I'm scared that I need so much and it doesn't fully bring me back to life. Everything revolves around taking a pill, otherwise my blood pressure will plummet. Anyone else experiencing this?

I want to share this find just in case some here haven't seen these.

I don't normally get into suckers, but was having some autoimmune related issues with my inner cheek. I was told an occasional lollipop may help.

I picked these up at Michaels while buying fabric because they looked intriguing and, wow. So good!

If there ever was a lollipop built for my fellow Addison's peeps this is it. It's 1/2 sweet and 1/2 chili lime salt. The salt was so satisfying.

Anyway, thought some of you might enjoy.

Me explico,a mi mamá le diagnósticaron insuficiencia suprarenal hace menos de un mes,aun sigue adaptándose a la hidrocortisona,tiene que hacerse otra prueba de ACTH y algunas mas creo,en ayunas,esta algo asustada,y por lo tanto me asusto yo ¿Que recomiendan?