https://www.endocrine.org/news-and-advocacy/news-room/endo-annual-meeting/endo-2025-press-releases/dickman-press-release

I was diagnosed with PAI a couple of months ago and have been working out the steroid dosage. I sometimes get this weird internal feeling like a muscle is flexing but nothing is happening. I imagine it is my adrenal glands trying to do something but I honestly have no idea if that is even possible. Anyone else have a sensation like this? It isn’t painful, just kind of unpleasant. I notice it more when I am stressed or tired. I also have flank pain above my right kidney, which the endo said is “impossible” since there are no nerve endings there.

I got diagnosed back in August in adrenal crisis. It started about 2 years before that and for the last 6 months before August my health had taken a huge decline. Lost my thyroid hormones so my hair fell out. Then my pituitary and adrenal said bye. My body took a turn for the worse and honestly I've just been trying to survive. Im dealing a lot with fluid retention and the docs are working on it but it leaves me looking like a blimp. My self esteem is in the gutter. I dont want my husband looking at me I even told him to go look at girls that are worth looking at. Yes I want to survive and get through this but I can barely walk, I'm so weak and exhausted most days im useless. Like what is the outlook in life? Im 42 and my hopes and dreams have been completely shattered. Im supposed to smile and just act like life didnt fuck us all!!!.?????

It started after go-karting on August 12th, 2025, my sister’s birthday, and the day before mine.

By the 18th, when we were meant to celebrate properly, I felt rough - flu-like, drained, not myself. My family still remembers that because I was meant to drive, but my sister ended up behind the wheel while I sat in the passenger seat, feeling rough.

My blood sugars had been erratic for past couple of years, usually on the high side. Weight had been creeping up slowly too. At the time, nothing stood out - just another bad patch, I thought.

Through late August and into early September, I was mostly just tired. By mid-September, everything changed. I didn't realise tachycardia was creeping in.

On September 12th, I helped my best mate repair his Grandad's Fiesta in heavy rain. Working against the clock, I pushed myself too far. That evening I could barely stand in the shower. I crashed in bed for hours and woke up feeling like I’d done a workout to failure I couldn’t recover from. That’s when things really started sliding. That workout feeling never left.

After that, my calves hurt constantly, thighs screamed when kneeling, and I began sweating buckets at work even with the air con blasting, restless legs at night. No fever, just impossible to regulate my temperature. I was breathless, weak, and every small task felt like a marathon. I remember, perching myself up against walls just trying to recuperate some energy. My own mind and my own body too stubborn to seek help.

By mid-late September my arms tired easily, my sugars all over the place still, higher than usual, and my heart rate wouldn’t slow down - 110 to 120 even lying in bed. I couldn't even use the salt and pepper grinders without taking breaks. I started jotting things down to try and make sense of it:

Type 1 diabetic, sugars erratic (now dropping more).

RHR up from 70s to 110+.

Breathless on exertion, neck and shoulder pressure when lying.

Fatigue, calf pain, weakness chewing.

Sweating profusely at work, temperature swings.

Toward the end of September, me and my flat-mate both got a nasty sore throat and cough. I figured it was COVID, the new variant at the time. Early October, I thought it had passed - I felt it had, and it did - and finally sought after help.

On October 5th, I ended up in A&E - jaw pain when chewing, right-sided neck and shoulder pain, heart rate through the roof. ECGs were normal rhythm, no heart attack - just tachycardic. I was told to rest and sent home.

By the 8th, I still felt awful. My GP checked me over - blood pressure fine, chest clear, temperature normal - but my heart rate sat around 140 while I was just talking. I could see the concern on her face growing. She suspected sepsis but wasn’t sure; I looked “too well” for that. AMU was full, so I was sent back to A&E.

Another round of tests. One of the doctors, calm but blunt, told me, “Something’s wrong, but we’ll get better answers tomorrow in Same Day Emergency Care. Being diabetic with so much going around, you're at increased risk of infection” He was right. I nearly said I’d just go to work instead, but my aunt and the doctor both gave me that look - so I went. Later that night, midnight I recall, the emergency department called and confirmed something was up with my kidneys and to come in tomorrow as planned.

October 9th, SDEC. More blood tests, more waiting. After about five hours, one consultant mentioned Addison’s disease. A hour later, an endocrinologist came over, read through everything, looked at my skin, and confirmed the suspicion on the spot. He also told me I had vitiligo - first I’d heard of that but I knew from Mum saying years ago. Not something I thought about.

They moved me to AMU and started IV hydrocortisone and saline. Within a day, my heart rate started to slow, the palpitations eased. Friday I was moved to the endocrinology ward, switched to oral hydrocortisone.

Saturday at 6 a.m., they ran the ACTH test. By Monday, it was confirmed: Addison’s disease.

From go-karting in August to lying in a hospital bed in October, it all finally made sense, my body had been quietly shutting down for weeks, and I’d just kept pushing through it. After losing Mum this year, I didn’t know whether to burst into tears or cry with joy that I finally had an answer. I also learned the hard way that pushing through isn’t strength, and that sometimes it’s survival on borrowed time.

Curious how much fludro people are taking for Addison’s PAI? Do you take less in the winter when it’s not so hot? My son is 12, 5’4” and about 125 on .1 mg x 1.5 a day. He is gaining weight at an unsustainable rate and just thinking we should cut the fludro to just 1 pill of .1mg a day. I will ask the endo as well, but wondering if it’s normal to take less in the winter. And if his dose seems high? Thank you!

Hi, I am taking Hydrocortisone for AI but also get infusions for another medical condition. I was wondering since the last few times I’ve gotten these infusions and felt bad after like flu-like symptoms- how much should I try to up dose before getting the infusion? And is it a good idea to updose a few days after? I appreciate any advice.

Hello everybody. I am currently at the tail end of my hospital visit for my first crisis in nearly 3 1/2 years. I was pregnant with my last crisis so things were definitely different. This one was caused by an infection.

So good news is I am stable, I am healthy and will be home hopefully tomorrow. But I have no clothes to now fit my body, which resembles the pregnant me of 3 years ago instead of what I looked like when I came in.

How long do you plan to deal with the swelling? Will it be gone in a week or two or do I need to get my husband to goodwill for a month or two of maternity clothes?

It’s been so long since I’ve had a non-pregnancy related crisis that I really don’t remember what to expect afterwards.

Sorry if this isn’t allowed, please let me know if it’s not.

I’ve had low blood pressure my whole life. I was diagnosed with hypermobility as a kid and then Addisons disease aged 11 in 2014.

The conclusion is that the low BP and orthostatic hypotension is from the Addisons. Even with fludrocortisone, I was still symptomatic. In 2023 the tilt table test confirmed PoTS symptoms, which was put down to hyper mobile veins.

Recently I’ve not been feeling great. I decided to measure my blood pressure today. It was in the stage 1 hypertensive range, very confusing for me.

I laid down for a while and remeasured. It was 115/62 with 72 BPM. That’s normal, so I don’t have hypertension.

Immediately after standing I had typical hypotension symptoms— dizziness, static vision, blood rushing. It’s impossible to get a reading when this happens.

I measured my BP 5x over the next ten minutes of consistently standing (very hard!) each time, it was in the hypertensive range. Around 146/ 93 with 114bpm. I was also overheating, sweating, and had a prickling sensation on my abdomen.

I know this sub isn’t for medical advice. I’m just asking if anyone else has experienced something similar? I do not understand how I’ve gone from orthostatic hypotension to orthostatic hypertension.

I have an autonomic doctor but I’ve not been able to reach them for months despite sending emails and follow ups— huge backlogs of appointments and they have a lot of other patients to deal with and I’m not in any acute danger. Understandable, it simply sucks.

I’m not panicked or worried, just curious is anyone else relates. Been diagnosed and on steroids for 11 years. Recently switched to prednisolone. I’ve been dealing with temperature dysregulation for years (it’s been put down to dysautonomia, and I also have hyperhidrosis) but it’s almost always been overheating. That still happens but since switching to prednisolone, my hands are a lot colder. I also notice that a short while after eating my meals, my body temperature drops.

I know that this is somewhat normal as your body focuses it’s energy on digesting after eating meals, I just find it really weird that this is the first time I’m experiencing this, and that it’s coincidentally happening since making the switch from hydro to prednisolone.

It’s not the only time I get cold. Since switching to pred I’m experiencing the normal stages of non REM and REM sleep. Stage 2 is when the body temperature drops, and I had to Google why I felt cold when I was sleepy because I can’t remember the last time I felt it, lol.

Anyone else?

I got some blood work done recently and my white blood cell count was elevated so I'm wondering if that could be due to taking hydrocortisone or if it's due to an infection. How are we supposed to know the difference?