r/AdrenalInsufficiency

Hi all. Was diagnosed with adrenal insufficiency this week after having an adrenal crisis and metabolic acidosis. Started hydrocortisone and feel like myself for first time in a year. But i just got a result in my chart showing normal afternoon cortisol the day i was admitted and normal 24h urine from the week before despite low cortisol (4ug/dl) and low borderline normal ACTH (2.1). What can this mean ? Is this still adrenal insuffiency. I'm so confused

Anyone experience wrinkles from steroid use? I have read that collagen production is depleted and I was over-replacing for nearly three years. I now have pronounced smile lines all over the bottom part of my face. Is it reversible?

Hey Everyone

I have classic CAH

I’m trying calorie deficit but I don’t seem to be making fast progress, I currently have Cushings from excess steroids (now tapering)

I was wondering if anyone else struggles to lose weight or has experienced weight gain due to steriods.

I've done 3 cortisol tests, 1.0; 1.6 and the last one they said I had to be standing for at least 2 hours bcz of Aldosterone, I could be only one and the tests came out being 5.6

Is that what was expected?

I have no clue about what is going on right now. If anyone has any advice where I should go and how to make doctors listen, I would appreciate it. I’m in the UK.

So I have has low cortisol for last 7 ish years. I did a test that showed very low morning cortisol before being diagnosed with another autoimmune condition. It went under the radar as I took steroids for that conditions. I’m now also on immunosuppressant so any autoimmune conditions wouldn’t get worse.
But. I came off the steroid a year ago. Since then I’ve been having low cortisol again. As I tapered I felt worse as well. Adding t3 thyroid medication has helped overall but days like today, I get these weird episodes. I feel like I used to with some extra symptoms. I’m my usual low cortisol symptoms include anxiety, feeling weak, dizziness, etc. I have had Addisons antibodies done (neg immunosuppressant will keep them neg even if I have it), short synacthen test came back normal. When I do home tests, they all are low though. These days when I get these episodes I also feel freezing, have diarrhoea and feel nauseous and dizzy. I don’t throw up though. It lasts about one or two hours and I feel back to tired usual. This usually happens when I have a head cold. I also have low stress tolerance and it takes me a couple of days to recover from stressful events.my worry is that I have budding Addisons that never fully destroyed my adrenals and I’m living this weird half life.

I’ve seen one endo, my usual diabetes one, but they just say nothing wrong because the SST was normal. Do I have to live like this the rest of my life? Is there a doctor that understand? Are there more tests?

my experience (and many others
The big problem when your body can t regulate any more… you will never be able to perfectly mimic your bodies regulation…
If you really need external cortisol life will never be 100% the same…

You will always have to monitor your body. Specifically when you do big heavy exercises.. then you most of the time need an extra small dose besides the regular 3-4 doses a day

Are there people who disagree?

Hi, I recently was switched from prednisone to hydrocortisone and the dose I’m on is pretty high because it’s equivalent to what I was taking on prednisone. 🙃 I’m taking my doses 3 times a day which seems to be helping. My question is do you all have any tips on how to get through these next couple of weeks as I taper off this high dose of hydrocortisone and God willing get to a lower/better dose?
My knees have been hurting and I've had other effects but nothing as bad as I had with prednisone. I'm trying to take it one day at a time and remember this is temporary. I do have some swelling in my feet, face, and legs. My endo said I was most likely experiencing Cushing-like symptoms on pred so now my body is trying to adjust to hydro.

HC since September.

Starting now to get IBS symptoms, not much cramping but the rest of it yes. I never looked it up and it sure does give IBS to patients who take HC. Lovely. Now what? Wonder if you can get it injectable or a cream so it doesn’t go through the stomach. Yes I need to build my flora up more drink that Keffer.

Those who are on HC and do you have IBS what’s your solution?

Hey. So, I have a very complex and extensive condition, mainly cognitive, comparable to dementia, which began in 2019

In 2021, I had a salivary cortisol test and it came back normal. Recently, however, my basal cortisol was measured and it was 1.0.

I repeated the cortisol and ACTH test (which came back normal/low) and cortisol 1.2 and have already started treatment with prednisone.

What bothers me is this 2021 test; my condition is progressive and I suffer a lot. I'm in an almost bedridden state of stupor. I needed this condition to justify everything since 2019.

Is there anything that could explain why salivary cortisol levels in 2021 came back normal?

Over the years, I've been dealing with a wide range of symptoms that doctors haven't been able to identify. I was diagnosed with Crohn’s disease in 2018, mild Gastroparesis in 2023—which occurred right after stopping a long course of prednisone—and POTS in 2025, even though I had been experiencing symptoms since I finished the prednisone. Nobody has questioned my cortisol levels, even though I've mentioned it multiple times. I'm underweight, can't gain weight, dizzy, have migraines often and always feel nauseous, but lately I can't get my nervous system under control. I can't seem to calm my body down whenever anything stressful happens. I'm not asking if this is AI but whether anyone has been through something similar?

Hi all, I’m a 40 year old male with what continues to be a lengthy process of trying to feel normal. I was diagnosed with celiac disease in 2015. A few years later they thyroid went hyper. Had that radiated twice and then ultimately removed in May last year. Since then I continue to decline in my health despite my thyroid bloods being perfect on thyroxine/other thyroid meds.

Endo has started to look outside of the thyroid issue as I have continue chronic fatigue, headaches and dizziness, brain fog and mental clarity/decline. My appetite is gone, I can’t struggle to get off the couch, havnt worked in over 6 months. I’ve been on medication now for anxiety and depression that isn’t helping.

My most recent bloods were done with the only things coming back as abnormal were morning cortisol and acth (9am).

Cortisol was 96nmol/l (range 138-650)
Acth was <1.1 pmol/l.

Don’t see the endo again for a few more weeks and just continue to suffer each day.

I was diagnosed with Meniere’s in 2015 but couldn’t handle the diuretics or the low sodium diet, which is the main treatment. When my blood pressure starts to get really low, I can feel it in my ears - feels like pressure. I started Advair (250/50) in 2018 which is what my doctor thinks may be causing my Adrenal Insufficiency, but the Menieres thing is weird to me. My hearing when from moderate to severe low tone hearing loss, but returned to normal after cutting out wheat/ after I started the Advair.

I have to drink a lot of sodium to keep my BP around 110/62 - my diastolic falls down to 44 range and usually the top number goes down to 86 even before (86/44-50’s) the Advair.

Wondering if anyone has had a similar experience?

I am newly diagnosed with secondary adrenal Insufficiency this is my first time double dosing I am on 30 20 10 right now for 4 days and would like to get back to my normal dose of 15 10 5 slowly by tapering but I'm not sure how to do that?? How much do u taper by?? Do u taper one dose at a time??

Dear all,
I’m sharing this in case it resonates with others dealing with empty sella syndrome or pituitary-related issues.
After an MRI diagnosis of empty sella syndrome, I was prescribed hormone replacement (cortisol, thyroid hormone and testosterone) at relatively high doses. At first I felt much better, but after a few months severe sleep problems and extreme stress started. Eventually I was sleeping only 2-3 hours per night with constant hyperarousal (an overactive stress system) day and night. After years of this I ended up in a psychiatric hospital for 4 weeks because of suicidal thoughts.
Multiple endocrinologists confirmed I needed to stay on the hormones. After three years in this state I looked deeper into my older blood results myself. A professor later acknowledged that the doses had been too high. We tapered down, but the sleep issues and stress did not improve right away. The years of dysregulation had taken their toll.
During that time doctors prescribed various sleep medications, often several at once, without real improvement.
After four years of extreme symptoms, I tried medication focused on the stress system during the day (a centrally acting agent and a beta blocker). That night I slept 6-7 hours for the first time in years. My GP agreed this could make sense if hyperarousal was the underlying driver — not the sleep itself, but the overactive stress system.
Since then I take this support during the day and my sleep has improved significantly. I am still easily triggered and have to pace my activities carefully, but there is real progress. Recovery after years of dysregulation can take 1-2 years. I hope to return to work in 6-18 months.
This is purely my personal experience after a very long road. I do not recommend anyone adjusts their own medication — I did it out of desperation and strongly advise against it. Always stay under medical supervision and keep asking questions.
One thing I learned: sometimes an important piece gets missed, even when doctors are trying their best. Trust your own body signals while working with your care team.
Sleep and stress are intertwined. The trigger can be many things. The most serious are PTSD but also medical “trauma” can cause hyperarousal. Specifically if it starts with sleep problems or stress. Bad sleep makes your body produce more stress hormones like cortisol, adrenaline and noradrenaline. High stress hormones make your sleep worse. So it’s a self-reinforcing mechanism. And after a long time your body thinks this is the new normal and then you are stuck.
Nothing seems to help anymore. Sleeping pills won’t help and downers (benzodiazepines) won’t help either. The most helpful meds are the ones that work directly on your stress system itself, and time… Once in this hyperarousal state it’s almost impossible to get out of it without medical help for your stress system.
I wish you all strength.

Hi everyone 👋
For a while now, I’ve been trying to find the cause of recurring episodes, and I’d love to connect with people who have had similar experiences.
The pattern is almost always the same: I feel relatively normal in the morning, sometimes with a headache from the start. Around midday, there is a sudden sharp drop in energy — I have to lie down, I sleep, and light bothers me. Then come nausea, vomiting, headache, abdominal pain, back pain, muscle pain, and joint pain.
For 24+ hours, I can’t eat or drink anything. I sleep through most of the first day. The second day is heavy fatigue, and by the third day I’m still feeling the aftereffects.
Before and after each episode, I feel completely fine. I don’t take any long-term medication and my blood test results are good. The episodes repeat on average every 3 weeks, but sometimes after 2 weeks and sometimes after 4 weeks, with no clear trigger.

The only things found so far are gallstones — gallbladder removal has been recommended — and an incidental finding on my left adrenal gland, likely an adenoma, still being investigated.
So far, migraine, porphyria, carcinoid, celiac disease, and thyroid issues have been ruled out. In 2013, I had chronic Lyme disease.
Does anyone recognize this pattern? Any idea which direction to look next?
Thanks so much for any tips or shared experiences 🙏

My father died unexpectedly three months ago. I triple-dosed my steroids for a week and capped it off with a solu-cortef injection on the advice of my endocrinologist.

I have been taking my normal dose (17.5mg HC) since then.

I know grief causes fatigue. And stress on an AI patient also causes fatigue. But I’m sleeping twelve hours per night and still struggling to get out of my recliner during the day.

I’ve had better days, but even on my best day the most I was able to do was get myself to a doctor’s appointment.

It has been worse since Mother’s Day. I went to church with my stepmother, the first time I’ve been back since the funeral. The whole day was extremely draining.

Has anyone else had a longer term stress situation, and how did you handle it?

I do plan to call my endocrinologist Monday, but I’d like an idea on what to ask for.

In the last 4 months I’ve been diagnosed with a pituitary tumor, SAI, and POTS. I’m just wondering if anyone else has POTS or dysautonomia alongside their adrenal insufficiency? What are you doing for treatment?

Hello. I am hoping someone may be in the same boat as me. I have a history of pituitary trauma. I have had vague symptoms for the past year and a half that include nausea, vomiting, unintentional weight loss, the worst fatigue ever, general malaise, low blood pressure. I had pituitary testing done which only revealed low (5) (normal range is 6-60)ACTH hormone. I am a medical lab scientist and know that I need it drawn between 6 and 10 AM which I did. My cortisol drawn at the same time was 14. I was referred to endocrinology by my PCP. My endo retested, ACTH still 5 and now cortisol was 13. Collected at 9 AM. She said cortisol is within normal limits and ACTH is unstable so it doesn’t matter (despite me being the one processing the sample, immediately it’s placed on ice, centrifuged, and frozen within the hour. QUEST says it’s stable at room temp up to 16 hours, tho). A few months after these labs, I had two episodes of syncope which has never happened to me. I was hospitalized the second time to investigate if it was cardiac related as I had no prodromal symptoms . It appeared to not be related. I messaged my endo about this and we retested. Now my ACTH hormone is undetectable and my cortisol was 11. Both drawn at 830 AM. Endo again says cortisol is within normal limits (4-20) and the ACTH doesn’t matter. I am getting increasingly frustrated as I have every single symptom of SAI. I know partial SAI is a thing and I feel like I’m just being dismissed. I have a biology degree and understand a negative feedback loop. I feel like she’s not looking at the entire picture.. wondering if anyone else has a similar experience?

Good morning everyone, I been having Hypoglucemia specialy after walking more then 5 to 10 minutes and this weird tension/burning sensation within my muscle at night and when I wake up in the morning, 2 endocrinologist and a primary doctors haven't been able to figured it out, I'm not diabetic but I had hyperthyroidism and graves for 3 years but I'm on remisión right now, today I ran some more blood work and my cortisol is 4.99 uL at 8:30 am, also my ALT is 63, besides those 2 values everything else looks pretty good, does these symptoms sound familiar to anyone here? What's your take on my cortisol levels?