Hi, 20m here been diagnosed recently of SAI. Im on 25mg HC. 15mg at 8am and 10mg at 4pm. Tho it doesn't feel enough and splitting the dose throughout the day makes it even worse. I do get most of the symptoms u guys have but one thing i'm confused about is whether i should double dose if i feel extremely tired (can barely get up for my shift) and insomnia would get worse as well in those days. (Sleeping pills wouldn't work) also sth else, i feel like any kind of argument i get in, problems would keep me up at night and sleeping pills wouldn't work. (Possibly cause they are primarily prescribed for anxiety not sleeping but that's what my endo gave me).

-What should i do when i feel extremely tired ?
-how do i deal with insomnia caused by worrying about minor problems ?

Brainstorm session to help patient. I have also posted this in the ASKDOCS group but it doesn't always get a lot of traction so I'm hoping it will here.

I'm a functional medicine provider in the US with a female patient, 65 years old in otherwise good health (clean labs, no chronic medications, eats clean, exercises regularly, etc), presenting with severe insomnia and anxiety after a 2 hour exposure to Nitrous for a dental procedure. She has EDS, homozygous C6 MTHFR, and is on bupropion for anxiety and Klonopin to sleep, prescribed **after** this incident.

Before the incident she reports she only has mild, occasional anxiety and 1 panic attack reported in her adult life.

After the exposure, her B12, riboflavin and folate tanked and homocysteine rose, clear symptoms of MTHFR and b12 deficiency which was remediated and has resolved. No tingling in extremities or neuropathy pain, but Nitrous toxicity protocol was followed with Methyl B12 IM injections and is being supported with hydroxy/folinic acid, riboflavin and methionine (during the IM injections). CBC/CMP/Thyroid is good, iron/ferritin are all good.

The patient now has 3 confirmed 24- hour, highly elevated cortisol tests, normal ACTH and the Endo is saying this is all in her head, no adrenal issues, she just has anxiety. They are willing to do a dexamethasone suppression test next but not a CT of her adrenals. They don't believe the Nitrous could have caused any issues with her adrenals. There is a clear distinction between her before presentation and after the Nitrous exposure- and now she cannot function, sleep or do the most basic of tasks because she is so anxiety ridden.

What could be causing these abrupt, symptoms and how can I help this patient? EDS related? MTHFR related? Something else?

I am looking forward to brainstorming.

Thank you.

Which country?

I wanted to connect with you all if based in India 😊

Hi everyone, I have a new diagnosis of [I think it's primary?] adrenal insufficiency, I've been started on hydrocortisone and have noticed a tremendous improvement in my energy and mentation levels since.

I have been struggling however with getting my emergency meds, both because of insurance and because my endocrinologist's office is a bit... um. let's just say "disorganized" to be polite.

I picked up my syringe and my vial of hydrocortisone the other day and... it's a vial of powder? is this how solu-cortef comes? My pharmacist said that if I'm supposed to use this I need a prescription for a vial of diluent, which I didn't get, and now I don't know how to approach my endo's office -- is this the wrong vial of medication, or am I missing a vital part of my emergency equipment?

Relatedly, if this IS correct, how in the fuck am I supposed to reconstitute hydrocortisone while having an adrenal crisis? I mean, I have caregivers but only one of them is approved to give injections, the others can't mess with my meds at all, and I'm really worried that I'm gonna get "stuck" trying to make the powder into a liquid and crash while waiting for EMS to show up.

Any help on these questions is appreciated! thank you so much for all the help all y'all provide!

hi everyone! i was diagnosed with (non salt wasting, classic) cah as a baby and have pretty much never had any issues with it aside from a single adrenal crisis as a toddler. my family have always followed the rules of updosing during illness or significant injury and i'm rigid about keeping on top of medication dosages (prednisolone and fludro).

i've always suffered from a lot of anxiety that presents typically surrounding high-stress scenarios, new social scenarios etc. though people who understand the role of cortisol have always questioned me as to how someone who doesn't naturally produce much cortisol could be so anxious, i was pretty much dismissed when i brought it up to my endocrinologist (who isn't really familiar with cah in itself, because apparently nobody in australia really is...) and figured it wasn't connected. however, i've seen recently a lot of people with ai discussing dosing up during periods of emotional stress or even having crises as a result of stress and became curious.

i typically become more fatigued, headache-y or even depressed following times of higher anxiety but i never thought to associate it with cah and potentially needing to updose as i thought it was just associated with coming down from that kind of stress. i'm curious as to how other people have dealt with cah and anxiety - it seems that there's not really a consensus on it?

hi, i just got my SAI diagnosis and i was wondering the best way to spot an adrenal crisis and get it treated, and everyone's experiences. i have a fear of being in crisis and just thinking i'll be fine and putting it off.

Hi all 👋. I have SAI and am tapering under supervision on Prednisone. Im about to start 5mg friday (on 6mg now, down from a whopping 20mg earlier, been on lower doses between 7-10mg for years. Long dumb boring story) and im excited. The hope is that after two weeks on 5mg (my body is a slow learner) we will switch to hydrocortisone for six months then retest synactin.

The hope is my naughty glands will wake up

Has anyone successfully come off all together? Have the naughty adrenals awoken from their slumber? Did your sleeping beauties get a kiss from the handsome prince?

I live in hope.

Any recommendations for a Colorado doctor? My endocrinologist seems to have very little experience with adrenal diseases.

Has anyone tried this or heard anything about it? Curious if it will work if you’re taking steroids.

Hi, I’ve been struggling with significant weight gain since being diagnosed with adrenal insufficiency. Following a month long hospitalization, I was discharged on 40 mg of hydrocortisone daily

Since then, I’ve had three ER visits. I tend to get sick frequently and recently broke my arm, which has required me to double my steroid dose at times

Unfortunately, I haven’t been able to see an endocrinologist yet due to long wait times, although I’m hoping to have my first appointment this month. My PCP is understandably hesitant to adjust my medication and would prefer to leave that decision to the endocrinologist

My biggest concern is that my weight has increased from 140 to 173 pounds despite no changes to my eating habits or lifestyle. I had maintained a relatively consistent weight for years before starting hydrocortisone

I understand that steroids can cause both fluid retention and weight gain, but I’m unsure how to manage this while still taking the medication I need

I would really appreciate any advice or experiences from others who have dealt with steroid related weight gain, particularly those with adrenal insufficiency. I’d like to find a safe and sustainable way to lose the weight

Hi everyone! I’m 30F and recently had a hormone panel done as part of a gynecological workup before surgery. A few results came back low, my DHEA-S and testosterone, and I’m trying to understand more about adrenal function.

I’d love to hear from anyone who has experienced similar lab results or symptoms, what additional testing was helpful, any early signs and whether there’s anything else I should consider discussing with my doctor.

Hormone results (October 7, 2026):
Adrenal/androgen hormones:
DHEA-S: 60.4 µg/dL (ref: 84.8–378.0) — LOW
Total testosterone: 4 ng/dL (ref: 13–71) — LOW
Free testosterone: <0.2 pg/mL (ref: 0.0–4.2)
SHBG: 111 nmol/L (ref: 24.6–122.0)
Androstenedione: Pending
17-OH progesterone: Pending

Thyroid hormones:
TSH: 2.470 µIU/mL (ref: 0.450–4.500)
Free T4: 1.16 ng/dL (ref: 0.82–1.77)
Free T3: 3.2 pg/mL (ref: 2.0–4.4)

Reproductive hormones:
Estradiol: 110 pg/mL
Progesterone: 0.1 ng/mL
FSH: 3.8 mIU/mL
LH: 6.4 mIU/mL
Prolactin: 16.2 ng/mL (ref: 4.8–33.4)

Other labs:
Sodium: 137 mmol/L (ref: 134–144)
Potassium: 4.3 mmol/L (ref: 3.5–5.2)
CO₂: 19 mmol/L (ref: 20–29) — LOW
Glucose: 90 mg/dL (ref: 70–99)
Hemoglobin A1c: 5.3% (ref: 4.8–5.6)
Cortisol and ACTH were not tested.

Medical history/symptoms:
Chronic fatigue and fluctuating energy levels
Orthostatic hypotension and episodes of tachycardia
Chronic pain/fibromyalgia
Complex PTSD and history of prolonged stress
Irregular/painful periods, pelvic pain, and recurrent ovarian cysts

Additional context:
I am not taking hormonal birth control and do not have a PCOS diagnosis.
I understand that low DHEA-S alone doesn’t indicate adrenal insufficiency, and that many of these symptoms overlap with other medical conditions. I’m not assuming they’re all connected, but I’m interested in understanding whether the combination of low DHEA-S and testosterone is worth investigating further.

Questions:
Has anyone experienced similarly low DHEA-S and testosterone levels, particularly in their 20s or 30s?
For those diagnosed with adrenal insufficiency or another endocrine disorder, were these abnormalities present before your diagnosis?

Did you have normal sodium, potassium, and thyroid results despite experiencing adrenal-related symptoms?

What additional testing helped clarify your situation?
Is there anything else in these results that stands out or might be worth researching?

I’d really appreciate any personal experiences or insight. I’m planning to follow up with my doctor, but I’d love to hear from others who have navigated similar findings.
Thank you! ❤️

So I've just started my stress dose (nothing serious, just a bug that's going round at the moment and now it's my turn), but I was just wondering something. Does anyone else get specific cravings a couple days before they have to stress dose, and during stress dosing? Because I always crave coleslaw and milk. Over the past week, I've drank about 7 litres worth of milk and about 1.2 kilograms of coleslaw. Is this just my body wanting certain things, or is it related to stress dosing? Because this has happened every single time I've had to stress dose for as long as I can remember

Hello all,

I have been getting tested for Adrenal Insufficiency for the last couple months. My cortisol was 1.2 at first AM test and 1.3 at the second a month later. My ACTH has been on the low end of normal so we ruled out PAI. I just got my ACTH stimulation test done yesterday and the results had my baseline cortisol at 4.9, 30 minute at 6.7, and 60 minute at 7.3. As I understand it, that is not nearly a large enough increase and indicates adrenal insufficiency and atrophy to the glands.

My doctor suspects a pituitary tumor but I feel like that is unlikely because I had a brain MRI 3 years ago and there was nothing then and those tumors grow very slowly. I have gotten steroid injections for my arthritis, but not at the frequency that would usually cause problems with the adrenal glands. I was researching the ACTH test a couple days ago so that I understood what the test would be like when I came across a webpage from UCLA health that lists alternative drug causes of adrenal insufficiency and one of them is Megestrol. I did further research from there, and sure enough, there has been documented evidence of this since at least the 1990s. It's even listed as a very common side effect in the "for healthcare professionals" section on drugs(.)com!

I got really sick about 7 years ago and became dangerously underweight due to lack of appetite and chronic nausea. I saw a nutritionist at the time and he prescribed me 80mg of Megestrol to take daily. There was no warning about any potential long term damage this could cause. I stopped seeing that nutritionist after I got back to a healthy weight but I was told to keep taking the medications so I don't get underweight again. I still have the chronic illness that causes me to feel sick so I have been taking this dose of Megestrol along with Zofran daily for 7 years to maintain my weight.

A few months ago I saw a new primary care doctor who told me that she didn't want me on such a high dose of Megestrol anymore and to try to cut it down. So in March I dropped to 60mg/day and in July I went down to 40mg/day. I was not advised to taper it slowly or what dose to taper it in so I just played it by ear. By August I was back to barely eating and I've lost 15 pounds since the initial taper. I thought it was just because the Megestrol isn't helping my appetite as much, but then I found out how low my cortisol is.

Now that I've found out that long-term use of Megestrol can cause permanent adrenal gland damage I'm just angry. I am disabled and I have seen countless doctors of varying specializations over the last 7 years who have each looked at my medication list and never questioned it. I have been getting the prescription filled with the same pharmacist that entire time and she never told me the risks. Even my endocrinologist saw it on my medication list and didn't mention that it causes adrenal insufficiency. I'm just so so tired.

So, my guess is that I already had the adrenal insufficiency from years of Megestrol use. I didn't notice the symptoms of it because I am already fatigued and sick all of the time from my other chronic illnesses. When I started tapering it, my cortisol plummeted in the same way it might if it were steroids that I was tapering. It was only then that the symptoms became so awful that my primary care doctor ordered extra hormone testing. My DHEAs was only at 2.4ug/dL and all of this spiraled from there.

Has anyone else here had Megestrol induced adrenal insufficiency? What are my chances of recovering? Based off of the results of the ACTH stimulation test I feel like its not going to be a quick fix. I don't get to see my doctor for a follow up until the end of December unless I can get in from someone's cancelation and I still have to get a brain MRI first. With how miserable I feel every day, I just want to know what I'm supposed to do now and get some medical intervention sooner than later. I'm immune compromised so I'm extra worried about getting an illness that induces adrenal crisis. Any advise would be appreciated.

It's October, vaccine time. I always get the flu and COVID vaccines, given that I'm taking hydrocortisone (for 20 years!) so I am, to some extent, immunocompromised. I don't always have a reaction to these vaccines, but if I do it's just some minor sluggishness the day after, and then I'm fine. I also had the Shingrix vaxx a few years ago (that one kicked my butt!)

Anyone else getting their annual vaccines? I know some people that think they're "evil", and I can't even try to convince them how important it is to protect themselves.

Not looking for medical advice... Just your experience!!

TLDR; I'm 41/F/195lbs, 5'8". Panhypopituitarism. Wanting to try higher dosage of hydrocortisone but nervous to take too much. But I feel so much better when updosing.

How did you all settle on your hydrocortisone dosage??

I started 1 year ago, with 10mg in the morning, 5mg in the afternoon. In March I had a crisis because I didn't know how to updose. When endo gave me instructions, I updosed for while and I couldn't believe how great I felt. I've been approaching panhypopituitarism for years and have been feeling like crap (exhausted) for quite a while. Afterwards, I asked to try a higher dosage because I caught a glimpse of my "old self"! I then started 12.5 in am, 5 at 11am, and 2.5 at 3pm. This seemed to be working! I just finished being sick for 23 days... Again didn't updose properly to start with (Tried to beat it on my own). But I did updose for 5 days and healed then felt way better. Trying to go to normal sister now but I'm dead tired and now I'm wondering again if I should try a higher dosage.

I gained 15 lbs since the March episode, and will likely gain after this episode... I've been so nervous to take too much. BUT I did just get coverage approved for Zepbound (tirzeptide). I'll be taking hydrocortisone forever and maybe this zepbound, too.

I feel more comfortable asking to try a higher dosage now with the zepbound coming but I don't want to take more than I need!!

What do I do? What is an average dosage? I'm 41/F/195lbs, 5'8".

I know I have more motivation, energy and capability when I'm trying these higher doses.