r/AdrenalInsufficiency

Ive read that cortisol problem cause memory problems but if we take hc it should be somewhat better ?
Am i alone with this or other people too ? Old memories are ok but new memories are difficult to make . Sometimes i need to think for 1 minute to remember my aunt name . My brain is foggy.

Edit : im glad im not alone (sorry ) i thought i may have alzeihmer tbh but im not that old

My endocrinologist drew labs back in March and they came back normal my testosterone was a little low. I have been dealing with excessive sweating/cold sweats, weakness, brain fog, memory loss.. the sweating makes me feel like I'm going to go into shock now something. My DHEA was low, I'm calling money to make an appointment to go in. What should I be expecting? I think it's time for me to be put on medication because I want my life back..

Knew it would come. Been on famoditine since last year. On 18 mg of HC. Was recommended to take succlafate called the glass coating for gut. Can’t take a ppi had cdiff years ago.

Can’t get ahold of Endo, pcp in Europe and no one to cover. I have it, 2 yrs old. Does not ruin flora just take hour before your med. Probably end up on prednisone. Had a Cleveland clinic meeting for opinion. That was interesting.told totally different things.

I started my meds a day ago
But today I’m starting to have panic attacks
I know it’s just slight increase on how I was feeling and then it dipped again because I’ve just had a massive panic attack
Should I be taking more?
Or should I wait and then take more?
I’m so confused

Any help is greatly appreciated

Hello,

38/F/Uk

Im relatively new to my diagnosis and looking for some support, as its been a lot to take in and a massive upheaval

I have a diagnosis of Secondary Adrenal Insufficiency (Diagnosed officially in March 2026) although it was first identified in late Jan and hydrocortisone 20mg started

Background: I woke up from a dead sleep on Fri 3rd October 2025 with the worst head pain i have ever had, as I have a hx of migraines, I took pcm and went back to sleep. I went to work, took my young son to a family farm day, and on the Sunday PM, attended MIU to be told it was probably a migraine and to follow up with my GP on the Monday morning. Which I did, and by then I was sweating non stop and soaking through clothes night and day, my left peripheral vision had vanished, I was vomiting and was hypertensive. Straight to ED where a CT was performed, and I was told after 6 hrs it was just a bad migraine and released with some triptan medication

For the next four months, I became a shell of my former self. I lost 7kg in 5wks, I slept 18hrs a day and couldnt stay awake for more than 2hrs at a time. My HR wouldn't drop below 100 at rest and could peak at 175 climbing a single flight of stairs, I couldn't stand for more than 10 min, I had a non stop tremor in my left hand side and weakness so profound i could no longer carry my young son. I saw the GP weekly, and had 9 panels of bloods including a myeloma screening. I was signed off, and ultimately had to quit my job because I couldn't even manage a reduced shift of 3 hrs.

Then late Jan a final blood panel was done, and an 8am cortisol was added on the hunch of a GP. I started hydrocortisone the very next day, 20mg (10/5/5) and within 48hrs it felt like the power was being switched back on.

SST was done in Feb, and I met my consultant late March. I've had two crisis' (mid April and another just 5 days ago) both needing paramedics and my IM shot. 1 week ago it was discovered that the October migraine may actually have been a stroke in my thalamus so I'm under going an urgent referral to neurology for further investigation as it explains both my left hand side weakness and tremor, as well as SAI

Does anyone here have a similar onset? All the reading i am doing is suggesting that a tertiary cause like a stroke is quite rare, so im feeling a bit alone in all this. My endocrine team are honestly rubbish, and I have been left alone to manage my condition since March, despite my two crisis and am awaiting a routine appt for my next review

Going from a completely independent, healthy mum of a 3.5yr old old, to someone who cant stand up for more 10 min, is reliant on a walking stick and needs a nap in the car after visiting the supermarket has been a total mental rollercoaster.

Hello All

I have been suffering from low cortisol for almost 4 years now. My symptoms began after I suffered a very bad fall that caused a TBI.

I tend to have episodes of low cortisol a few times a year and when tests are ran it does confirm low cortisol production. Being that all my other hormones aren’t being affected my endo believes it’s secondary adrenal insufficiency. He’s still not certain what is causing the drop in cortisol production so I’ll be doing a brain MRI with contrast to look at the pituitary function.

I was put on a trial dose of cortisone to see how my body responds to it, since I’m currently experiencing a low cortisol episode.

Has anyone experienced low cortisol after a TBI?

Any advice?

I’ve been on prednisolone for about 3 years now - most of that time has been spent trying to get off it. My Endocrinologist just gaslights me so I have absolutely no understanding of this. I was prescribed for autoimmune flare up, so secondary AI. All tests refused except a morning cortisol test (very low) which was pointless because I couldn’t withhold my dose for it.

When tapering - my heart rate, SpO2% and glucose (blood pressure was too inconsistent to add to the data) all followed the exact same pattern. Stable for the morning after my morning dose, hit an absolute cortisol trough in the afternoon and all 3 metrics would go haywire and body never adjusted no matter how long I held the dose or pushed through and continued to taper - that trough would just come sooner with even more unstable readings.

Endo scoffed at the idea this was even real, CGM is too inaccurate (I finger pricked for accuracy but it was the pattern I was more interested in) despite me losing consciousness on 2 occasions. Wearables can’t be trusted (OMRON medical grade cuff was used for BP and pulse) and SpO2% has nothing to do with cortisol.

Anyway I watched the data and at 12.5mg/2mg split that data stabilised, as well as many other symptoms like electrolyte handling, weight, sleep quality, stress tolerance… but this was all completely brushed off (refused to even look at the data) and repeated over and over “the science says X weight needs only X dose a day” and even though she agreed my symptoms of an adrenal crisis fit, it wasn’t possible for it to be real? I feel like I’m going mental - I’ve spent the past year religiously sticking to the “do not go above 10mg, do not split dose, do not stress dose” and it almost killed me… but I feel like I’m in the wrong for taking matters into my own hands and gaining a tiny bit of life back…

And it wasn’t that helpful?? I told her my history with cancer treatment and prednisone use. Showed her my undetectable cortisol and ACTH labs that I had from my oncologist. She said “I’m not convinced all your symptoms might be from adrenal insufficiency.” Then she said a lot of my symptoms could be anxiety induced. Which immediately put on a red flag. And when she reviewed my meds she said budesonide is a very potent steroid and that if I was taking 9mg of that a day, that I didn’t need hydrocortisone. At that point my boyfriend stepped in and said she barely feels okay with 30 mg of hydrocortisone a day, it’s literally her lifeline. I told her that I had always been told that budesonide doesn’t absorb much systemically. She then stepped back and said that if I felt good on 30 mg per day then she was okay to keep me on that but to taper to 25 mg in one or two weeks. She said she would do her own bloodwork until September, which seems like a long time from now. She explained sick day rules and prescribed an emergency kit. And then basically said I might be on steroids for the rest of my life but that time would tell.
She told me to split the dose
15mg -8 am
5mg - 3 pm
10mg- 7 pm
Idk what I expected but I left the appointment feeling let down.

So, I don't want to go into detail about my labs because people here seem to jump on it very quickly to say I don't have it. Never taken steroids in my life however I did use a drug (which I am not willing to disclose) that I believe induced my symptoms. I have frequent low-normal 9am cortisol values for my age, yet I passed the stim test twice. I have some of the symptoms of AI but not others, though it is confusing because some studies I read didn't need to have low BP and low ACTH to have it. So my symptoms are fatigue, apathy, memory loss, irritability, hypoglycemia. I have been investigated for other conditions and they've all come up zilch. Wondering if anyone who has been diagnosed with SAI or TAI is in a similar boat to me?

So lightning hit my workplace and we are hobbling along with partial A/C. Which of course is one of the things that makes me go into a “flare”. It’s currently 74-76 throughout the building but I am still hit with the fatigue.

My boss joked that I looked tired and said it was because I just got back from vacation. But nope-it’s my SAI rearing its ugly head. It’s just frustrating because I don’t want to make waves and due to my work I can’t work from home the next few days without creating a lot of work barriers for myself.

Mind you if I hit a crisis I would go home in a heart beat. And if we got over 80 I’d take my laptop to a Starbucks and suffer the extra barriers. It’s just frustrating how easily I’m set off with heat.

(I’m currently in the “Ring of Fire” with feels like 110-115 outside too)

I feel curious if there are any adrenal crisis survivors here?

I had a full (life-threatening) adrenal crisis last summer, coming off Prednisone. I am in month 10 of an 18-24 month adrenal recovery arc.

I still have not returned to normal yet.

I’ve gained 70 lbs, I have full-body edema, I can’t be upright for more than 20-60 minutes at a time (depending on my capacity or bandwidth that day), and I still sleep 12-15 hours some days.

I am the only person I know who’s had an adrenal crisis.

I’d love to hear from others and what your experience has been?

Edit: To clarify, I’m looking for someone to normalize my experience or share theirs. I don’t have anything to compare my experience to so idk if it “normal” or not

40m - started a course of prednisone yesterday morning for some back pain. I had some jitteriness afterwards and I figured this was normal. About 12 hrs later, I had a weird episode of increased heart palpitations, lightheadedness, faintness and cold skin. Went to urgent care and everything checked out but the palpitations and faintness are still there. Should the side effects linger this long after only one dose? I was told to stop today.

12 days ago, my oncologist diagnosed me with adrenal insufficiency and hypothyroidism (resulting from immunotherapy). She wants me to follow up with an endocrinologist, but my appointment is in 4 months. However, my oncologist started me on hydrocortisone (20mg a.m. 10mg p.m.) , and Levothyroxine, in the meantime.

I started the meds 12 days ago. Within a couple of days, I felt 1000% better. I went from sleeping 23 hours a day to a normal amount lol.

However, during past few days, I have been going through a very stressful life event. And actually, I felt OK— until now. Today I woke up, took my meds, and yet it feels like I’m back where I was. My eyes feel really heavy, and I can barely keep them open.

I called my oncologist, and she was very concerned because the meds should not just suddenly stop working. Then I was reading about something called stress dosing. However, it said that it relates to physical injury, illness, or surgery. But for those of you who are currently dealing with AI, does it make sense that a very stressful life event would leave me fatigued afterward? Is there anything I do about it? TIA!

My sister is 22 years old and she was diagnosed with Addison disease when she was four or five months old. Obviously it has affected her physical health, mental health immunity, everything she is different from other adults of her age. She could not complete school after eight standard. We made her drop out of school because it was too tough for her to catch up with all the pressure. She’s 22, but her mental capacity is not the same as people of her age. She still has a mind of 15 or 16 years old. She is fully functional. She understands things, but her way of thinking, interacting and perceiving the world is of a person who is 16 or 17 years old, maybe even younger than that. Her energy levels remain low for her to take charge of her life, to take care of her health, of medicines and diet. I know it’s not fully in her control, but I don’t know how to help her. What resources can be helpful for her, or is this the way she’s going to be, and we need to have acceptance regarding that or is there any way that she can get better and be her best and explore herself to her maximum potential?

Last year I had a temporary reaction following an intramuscular steroid injection. My AM cortisol dropped to 0.2, and I have never felt so sick in my life. The endocrinologist did not want to do a stim test as they are quite expensive here- his approach was no steroids and wait. It took about a month for my AM cortisol to climb back up and about 6 months to feel fully recovered.

Obviously I’d like to never go through that again. Today my doctor prescribed me a steroid nasal spray (same drug as Flonase) for my allergies. She is aware of my history and said it should be fine, but I’m feeling quite anxious about it.

Has anyone had a similar experience and been able to take steroids without reacting after?

I've always had ibs since like age 10 BUT it was constipation. I havent had diarrhea since swine flu in 2011. Fast forward to diagnosis in february, i have diarrhea almost daily. And its urgent. Like if i dont get to the toilet, I'll shit myself. Doctor says it's probably a side effect from the HC itself since its different than my low cortisol diarrhea, which is paired with all the other classic symptoms and is recurring while this is just my new bowel movements. I've noticed if i dont eat clean, it's worse. Has anyone else had this? Would appreciate insight to know if its related