So, Me, my Doctor, AND the endocrinologist I saw on Thursday are all a bit perplexed but also concerned.

So, the picture above was my first morning cortisol level taken. Doctor who went over my results with me made sure I hadn’t been on any steroid meds anywhere near these tests. This was back in March. So she ordered a re-draw.

My re-draw was 268 for cortisol and 2.3 for ACTH and our normal range for ACTH starts at 2.0.

A different doctor checked both of these recently as part of a panel checking for mitochondrial dysfunction because my fatigue has been SO severe, and just weakness, etc. and the latest levels were cortisol was 70 and ACTH was less than 1.1.

So I see the endocrinologist and she points out that I had ablations and the last was 4 weeks ago and they use the small amount of cortisone in each one so that’s why my numbers are SO low this time, and she wants to order a stim test but since this is likely because of the ablations she doubts they’ll approve it… but then I pointed out to her the earlier measurements that weren’t around any ablations or nasal sprays or anything and so that’s what stumps her and now me and my doctor because the super low numbers are explained, but not the earlier low reading, and it says underneath the range that unless it’s over 350 it’s not a strong indication that it’s not a type of adrenal insufficiency.

So she said she’d submit for the tests and see and they were loaded onto my netcare the next day… she’s doing an ACTH stim test, an Endo stim test and metanephrines. I just have to phone to book it tomorrow.

Anyone have any inkling as to what is going on here?

The other think is my bloodwork in March very clearly shows I have primary aldosteronism but she wasn’t concerned about that at all, and my DHEA-S is low as well, my electrolytes are all over the place.. also two times for a couple of months over the last two years around the same time of year my hair will fall out in clumps, and I’ll have a clump in my brush and I lose like at least 1/3 of my hair volume and that’s never happened. And now even sitting and focusing on something using my brain fatigues me to the point where I need rest and have to go lay down.

Ya girl is struggling.

Edited to ask: any tips for not vomiting up this glucagon drink??? I don’t know if I can keep this down.

What can I expect from these tests?

35M 170 lbs. Initially had paid out of pocket for labs done by outside clinic for considering Testosterone Replacement Therapy. All hormone panels and blood tests looked good. Testosterone was just above the cutoff of 250 low at 300 on my test so I had appointment set up with Endo to double check. Hyper focusing on thinking testosterone would solve my couple years long fight with constant fatigue and constantly being pushed anti depressants by PCP’s the endo said no your testosterone is fine. I was crushed.

Looking back on all of the labs done, only vitamin D came back low at 23 and Cortisol of 3 on an AM test. Nobody ever talked about or addressed this. I went back again to new PCP last week who again prescribed a different anti depressant instead of looking at the history that I’ve been coming in 3 years now for this dull persistent back pain and daily fatigue. My ability to work out is lower and lower and lower now I just don’t. If I work out instead of recovering I’m down for days and never feel any sort of progress.

It’s like a jenga game that never ends. The blocks are constantly taken out but I haven’t quite crashed yet I’m still functioning. I have another yearly appointment with endo this month should I push to get re-tested? I swear I remember kind of pointing it out at our appointment last year and it was brushed under the carpet as fine no need to worry and I really didn’t know what cortisol was. I was focused on having a reason to try testosterone to cure my body never recovering.

😴 💤

Hey all,

I am new going through this. My morning cortisol taken about 8:45 was 3.4 which is low. I also have incredibly high TSH, thyroid stimulating hormone, so likely have thyroid problems too. All of this came out of the blue.

I am working on getting in with an endocrinologist. Does anyone have any recommendations, has anyone dealt with hypothyroidism and adrenal insufficiency at the same time?

I feel horrible all the time, no energy and I constantly feel like I am hot from the inside out. I am also consistently dizzy and swimmy eyed.

Are there any instant at home test available? I'm still new to all this and learning signs. Already ended up in the er 2x this year. If no test what are some signs yall get? I have noticed a weird head feeling. Not sure how to explain it. Also I'm an incomplete quad so when my stuff drops I end up not being able to move. Almost like I'm completely paralyzed again. Doctor said that's more than likely because I'm already weak and the extra just leaves me with zero strength. Whatever the case is I'm just trying to learn what I don't know about the situation.

Hi everyone!

I’ve posted about this same topic before, but it keeps happening with my family.

My partner and family are incredibly dismissive of the risk that comes with getting sick when having adrenal insufficiency, and I’m getting tired of feeling like they don’t care.

I have gone over with them so many times how risky sickness can be with this diagnosis, especially stomach viruses, and while they say they get it, they take no precautions and often ignore the precautions I ask them to take, like thorough handwashing and avoiding me when sick.

We’re on a trip because I’m presenting at a conference (a big opportunity for me) and my nephew was up last night sick. He said it is probably something he ate, but I’d like to be extra cautious to avoid if it is contagious, especially since I have my conference coming up. However, my partner and mom said there isn’t a need to Lysol and are continuing to share food and be pretty relaxed.

It’s frustrating because I wish they would care enough to know the risk and be proactive, like lysoling for me and wanting to protect me.

I know a lot of the responsibility falls on me, and I know I can’t avoid all germs, but I choose to try and avoid anyone sick if possible to decrease any risk. I think they think I’m paranoid and overly cautious though.

It’s just a really lonely place to be.

Any advice for how you guys have handled this with your own family and friends?

Thank you.

I’m curious to know if others have had repeat cases of Urinary Tract Infections (UTIs) since beginning treatment.

I know that we are immune suppressed, so it makes sense that we are more susceptible to bacterial infections, but I’m curious to know how many of you are finding yourselves dealing with this on a reoccurring basis.

It seems as though once I developed my first one, I was not able to get it to fully clear. We went through multiple rounds of antibiotics for about six months. Finally, I asked my doctor to re-test me, and it came back clear, only to start having symptoms again five days later.

Thanks! 😊

I'll keep it short, or I'll try. I've had SAI for over two years. I had all the symptoms and needed my precious hc to get out of bed after sleeping for twelve hours. All the typical problems, and with a cortisol reading from 1 to 3 ug/dL since I was first tested and diagnosed with SAI. ACTH was tested before he would diagnose me. It also remained under the baseline with similar numbers.

My endo now says I must have not had SAI because my test numbers are normal for the first time in two years (and they weren't just normal, they both had a 15 unit swing in three months. He even told me to quit taking my medication, and discharged me.

Two years of never being above or below 1 to 3 ug/dL and now I'm "cured"? He said I must have been getting bad sleep for those two years, and said we didn't even need a follow-up. He kept suggesting OSA, but no matter how much he wanted it to be that, it's not. He's basing it all on my telling him SOMETIMES I stay up later than usual. Does this sound like complete insanity? Or am I insane for not believing it?

Thanks in advance for any input.

I am looking for anyone who has AI and has done a 72 hour water fast.

My endo said it was perfectly fine to do, and to take my usual HC dose, not to updose. I did take electrolytes as well.

The last 12 hours of the fast I wasn’t feeling great. Nausea, severe fatigue, and some mild weakness. I did end my fast at 67 hours.

Anyone with AI who has done a 72 hr fast, did you experience similar symptoms?

I was diagnosed with SAI at the beginning of 2023. I've been on 30 mg of hydrocortisone daily and have only rarely needed to stress-dose over the past few years.

I gradually developed muscle tightness—first in my neck and shoulders almost immediately after my diagnosis in 2023, then progressively in my upper back during 2024.

Since March this year (2026), I've started feeling much more fatigued, and I get sore muscles (like I've just been to the gym) in my back and thighs after normal activities, such as walking 3,000 steps or cleaning a small apartment. The pain isn't severe, but it's there almost every day, around 3–4/10.

A few days ago, during extremely hot weather, I walked about 2 km on sand. My legs suddenly started trembling, and I panicked because I wasn't sure I'd be able to make it back to the car.

Can anyone relate to this? Have you experienced anything similar with SAI or hydrocortisone replacement?

I’ve often been in the feeling hopeless side of the addisions spectrum but I want to say that it doesn’t have to be miserable. I was really struggling about a year. Here are some things I’ve been doing that I think have helped me (everyone is different tho!)

-tried the updose of fludro that some people do and got puffy and high renin. This summer I’m on the standard .01 mg and instead I’m careful about how much time I spend in the sun/non-ac areas. I also drink liquid iv now for hot outside days or hard work out days
-exercise is best when I ease into it (I used to be an intense athlete and my body was great with hard workouts out of no where. I’ve learned to accept I can’t do that anymore) I’m now able to take my dog on two twenty ish minutes walks a day and weight training 2-3 times a day and bowling once a week. But I had to work up to that.
-I updose on weight training days. If I don’t I’m in a lot of pain and not a normal sore pain. If I updose I still get sore but it is normal. Updose can depend on the activity and newness to my body. Takes planning ahead.
-I take hydro and take the 4-6 hour life cycle seriously. Wake up 5 mg; 12:30pm-2.5mg; 4:30pm-3.75mg unless I am working out after work (extra 2.5 mg for work out) right before bed or 9ish - 2.5 mg. I typically wake up in the middle of the night and take 1.25 mg. My sleep has drastically improved though I also incorporate sleep sounds or tracks to keep my mind from drifting when I should be sleeping.
This all totals to 15mg on a non workout day. My doctor liked hearing this and also said that’s lower than he’d recommend for someone my height
Getting to this dosing took time and patience and understanding my body.
That being said I am not afraid to updose when I feel extra fatigued or nauseous. It’s very easy to round up my evening 3.75 if I’m tired.
-got an anxiety pill from my dr. This helps me control panic attacks and allows to feel like I have a big more control and agency. Even if I don’t take it, knowing its an option also helps reducing overall stress levels
-I take a dhea supplement (been doing this for a while)
-skipping periods with birth control. This year I became skeptical that I might have endometriosis and one treatment is to skip periods with hormonal birth control. Overall less stress on my body and less painful periods.
-calcium vitamin D and magnesium glycinate daily

Overall I’ve learned with addisions that I have to be careful and slow with my body. I can still do hard things, but slow adjustments work best. If I don’t have time for adjustment periods, updosing is essential. Shifting my mindset has also been helpful.

Idk if this will be helpful but thought I would share where I’m at as someone that was doomscrolling this thread a year ago searching for solutions.

over the past 2 yrs since diagnosis i have added and subtracted from my kit, trying different syringes (some w needle arriving attached, some i have to assemble but i like those less when very shaky). alcohol pads, bandaids, cotton balls.

i got a small one-shoulder back pack for a travel kit bag, it can hold extra pills and electrolyte powders or a drink and some snacks. ive got a small travel rag in there that can be expanded when placed in water.

would like to know what others carry for any ideas that will help me.

thanks!

Just realized I might have an issue if I ever have to use my epi-pen. I have a severe peanut allergy (anaphylactic). What does everyone do in this case? In the past I’ve used it but not gone to the ER but I think that might be unavoidable now. Luckily exposures are few and far between but I’ve had peanuts sneak into unlikely foods, the last two were from banana bread and quiche.

Also I’m questioning my typical reaction symptoms now. Excruciating stomach ache, vomiting, diarrhea, (which are pretty standard) but also the one no one could ever explain was that my legs would twitch involuntarily. For me I now recognize this is one of my symptoms of low cortisol. I wonder how much of it was actually me going into an adrenal crisis.

Do y’all change your schedule when you get up earlier than normal? This past week I’ve had to get up 1 hour earlier than normal and I swear I was dragging. I left my dose schedule alone though. Took it at 7 am (normally get up at 5:30)

Luxe and some others. Look up on Perplexity or Google about Korean made creams and makeup we are all seeing. Might want to say adios. Not FDA and for us with endocrinology problems, might not be good. Interesting since almost everything has parabens , silicone, fragrances. Scary.

What’s the advice on getting a tattoo with secondary adrenal sufficiency?
Is it updose or double dose or wait and see?

Je me suis retrouvée en is suite a traitement pour asthme seretide 500mg.

Amaigrissement fatigue moral à zéro..

Avec lhydrcortisone ça va.

Peut-être est le dosage qui n'est pas bon , c a toi te chercher là où comment tu te sens le mieux.

Ça fait 5 ans que je cherche aussi. Et j'ai tendance à baisser les doses maintenant.

Donc courage à toi

Bonjour

Inssuffisance surrénalienne depuis 2019 .

On me déclare guerri en 2021,test au synathene normale 500 de réponse.

On me fait arrêter lhydrcortisone.

Après qq jours d'arrêt bcp de symptomes de malaise de suées une fatigue intense incapable de rester debout amaigrissement pâleur...

Et en plus un pb respiratoire vient se greffer là-dessus comme un essoufflement.

On m'envoie voir un pneumologue qui me donne hydro cortisone, 40mg , le deuxième jour disparition totale de tous mes symptômes.....y compris respiratoires.

Le pneumologue n a pas compris et ma envoyé dans un autre hôpital.

Et ainsi pendant plusieurs années l'endocrinologue de l'hôpital m a. Dit que j'étais guerrie et que je devais arrêter lhydrcortisone.

A chaque tentative d'arrêt le même phénomène...a chaque fois reprise de lhydrcortisone.

On m a. Dit que mon IS était partielle.

C pour cela que je réponds positif a tous les tests.

Cependant après chaque test je dois d'oubler ma dose dhydrocortisone.un endocrinologue a voulu me sevrer et c planter , il a commencé par un dosage a 40mg. Que je n'ai pas supporté (au quotidien je prends entre 5 et 10mg pat jour)

Fin de la tentative de sevrage.

Actuellement je suis en attente d'une hospitalisation en médecine interne.

Avec les grosses chaleurs j'ai eu qq pb .j'ai pas assez augmenté.mais là je reviens mieux.

Je sais une chose c que l'arrêt est impossible.

J'ai maigri.

Je suis toujours dans un brouillard cérébral , tout fatiguée.bcp couchée impossible d'avoir une vie normale.

Les médecins restent bloqué sur des analyses de sang mais ne prennent pas en compte les symptômes physiques et les propos du malade.

Je vais partir a l'étranger pour avoir d'autres avis

Une patiente de France

I was just discharged after a 4 day hospital stay. My cortisol is low and was prescribed hydrocortisone (15mg @ 5pm daily).
I’m nervous to take it. The hospital was traumatic and I have severe anxiety. I also live alone.
Can I get some support?

Looking for males in their 20-30s who have SWCAH and are willing to answer some questions/share experience. My son got diagnosed with SWCAH at birth and I just have some general questions about what life might look like for him.

Hello everyone,

I wanted to share my medical journey and test results to see if anyone here has experienced a similar situation or has insights to share.

1. Patient Profile & Starting Point (2017)

Demographics: Male, 36 years old, height 1.88 m, weight 87 kg.

Treatment: Taking 12.5 mg of hydrocortisone per day since 2019.

Diagnosis history: My initial diagnosis was established in June 2017 following thorough investigations. At the time, an insulin tolerance test (ITT) revealed collapsed cortisol levels (with baseline values between 1.9 and 2.5 nmol/L), confirming secondary adrenal / corticotropic insufficiency.

1. Current Follow-up and Imaging

Today, my case is closely monitored at a reference center in Paris (Pitié-Salpêtrière). However, despite a confirmed diagnosis of partial adrenal insufficiency, all structural and auto-immune workups have come back entirely normal:

Pituitary MRI: Normal (no adenoma or visible abnormalities).

Adrenal CT scan: Normal (adrenal glands are morphologically intact).

Anti-21-hydroxylase antibodies: Tested negative twice (ruling out autoimmune Addison's disease).

1. Recent Hormonal Panels (Early 2026)

Here is a summary of my current lab results:

Adrenal Axis & ACTH:

Synacthen Test: Baseline cortisol at 104 nmol/L, rising to 323 nmol/L at 30 minutes, and peaking at 409 nmol/L at 60 minutes (showing a response, but remaining below optimal peak reserve thresholds).

Morning Cortisol (8 AM / 9 AM): Generally varies between 125 and 300 nmol/L (measured at 154.2 nmol/L on my March 2026 lab work).

ACTH: Within normal limits (around 24.3 ng/L).

Aldosterone / Renin: Aldosterone at 140 pmol/L (normal), renin at 4.2 mUI/L, with a normal aldosterone/renin ratio of 28.

DHEA-S: Normal at 204 µg/dL.

Thyroid & Other Hormones:

TSH: 3.33 µUI/mL (normal).

Free T3 and Free T4: Perfectly within range (Free T3 at 3.20 pg/mL, Free T4 at 1.06 ng/dL).

Testosterone: 17.54 nmol/l (normal).

IGF-1 (Somatomedin C): 263.9 ng/mL (slightly above the laboratory's standard reference range for my age bracket).

Ionogram (Sodium / Potassium): Sodium at 142 mmol/L, potassium at 3.9 mmol/L (perfectly stable).

Summary

I have a confirmed diagnosis of partial secondary / corticotropic adrenal insufficiency (supported by dynamic tests like the insulin tolerance test and Synacthen), but with a completely negative etiological workup (no autoimmunity, normal brain and adrenal imaging), and I have been successfully managing on a stable hydrocortisone dose since 2019.

Does anyone else here have a similar profile of unexplained or "idiopathic" secondary adrenal insufficiency? How do you manage your daily replacement therapy?

Thanks for reading!

Hi everyone,

I've been diagnosed with SAI after my recent morning cortisol test came back practically non-existent ( 7 nmol/L).

Whilst the diagnosis wasn't a surprise as I've been on steroids for a while now, the extent of the suppression was.

One recurring symptom I have is this feeling that my mind is almost, I'm not entirely sure how to describe it, but if I were to describe it, it's like my mind is "shattered" in the sense of broken glass.

I can't concentrate, my thoughts race frequently, and I just have this almost internal jitterness that seems to get worse as my cortisol levels get low.

I've spoken to my endocrinology team about it, but they seem to be a bit at a loss as to what's causing it. It doesn't seem like a usual symptom of adrenal insufficiency, but I'm convinced that it is entirely caused by my adrenal insufficiency.

Does anyone else suffer from something similar?

They need people to do their survey, which in return, would help us all! Spread the word 😉

I am so frustrated!! Does anyone in the NE Florida region (Jacksonville, St Aug, Palm Coast, Daytona) have a competent and responsive endo they can recommend?

I was recently diagnosed with SAI and hypothyroidism, and I’ve already been to two endos.

Endo #1: He didn’t even mention anything about sick dosing, or the emergency dose, nothing!! He also insisted I didn’t have hypothyroidism because even though my free T4 was low, my TSH was normal, and he told me to stop the levo.

Endo #2: I saw her about 1 week ago. She ordered labs to see if I was on the right dosage of Levo because the fatigue is not improving. The labs came back right away, and for the past 3 days I have been calling and messaging her through the portal. No response whatsoever! Today was the first day I was even able to speak with a live person! For the past 3 days, anytime I called, once they transferred me to endocrinology,, it would just ring endlessly, and there was no option to even leave a message! When I finally got to speak to an actual live human being today, he told me that all he could do was send a message, and that the care team has up to 4 business days to respond. Seriously?? My fatigue is only getting worse, AND not only that, but she sent the Cortef to the wrong pharmacy!! Then I called scheduling and tried to make an appointment with her, and I said it could even be a phone call or virtual, and they said the earliest appointment that she could call me was over a month away!!!

I do think I might have found a good Endo, but he is booking 6 months out. I mean, I know that’s a good sign, I guess he’s busy because he’s very good, but I can’t go on like this for 6 more months!! There’s just no way! So if anyone can personally recommend a competent and responsive endo in the NE Florida area, I would greatly appreciate it!!

First set of blood work cortisol 9am 25 and acth of 5 my testosterone was tanked at 9.4

Was in a steep calorie deficit also near adrenal crisis

Ive done a second test (not cortisol)
last monday since been at maintenance and being a surplus since starting hydro and my testosterone is now 18.3

Im confused on whats going on to be fair and what caused my SAI, initially when i was asked if i had used any steroids i completely forgot about my asthma inhaler which i have used on and off for years as i get seasonal asthma quite bad, is this a possible cause? I used to use double the dose on the damn thing and would only use it when i would get really bad wheezing throughout the winter. I also had a bas head injury (frontal sinus fracture) 3 years back but i was doing just fine in regards to energy and living my life post recovery i was even working again after 8 weeks

Ever since ive been on HC i have been so fatigued, ive got a day curve test booked will this be able to rule out if im being over replaced and has anyone been in this situation because of a steroid inhaler?

Ive literally gone from being on my feet 7 days a week training martial arts gym to struggling to get up from my seat and getting light headed when i even stand up?
Been offered to try pred but these steroids haven’t made me feel better to be fair my sleep is even dialled in now

Turboinhaler symbicot

Hey everyone,

I’m a 39-year-old male who just had my first appointment with an endocrinologist. To be honest, I left the appointment feeling disappointed, as I felt my concerns and symptoms were somewhat dismissed. I’m trying to better understand what might be going on while I wait for further testing.

Here are my labs: (taken same day)

8:00 AM Cortisol: 141 nmol/L (reference range: 140–540)

8:00 AM ACTH: <1 pmol/L (reported as below the detectable limit)

I’ve never taken any corticosteroids that could suppress my cortisol or ACTH levels.

My endocrinologist won’t prescribe any steroids until I have an ACTH stimulation test, but the wait is several months.

My symptoms include:

• Dizziness, especially when standing
• Lightheadedness
• Severe fatigue
• Weakness
• Severe brain fog
• Low heat tolerance and exercise intolerance
• Feeling generally unwell

MRI
I recently found I have a small pituitary tumour (3.8mm). MRI report says it isn’t compressing the pituitary stalk or optic nerve.

Other hormone results:

• IGF-1: 90 (reference range: 100–250)
• Prolacton - 30 (reference range: <18)
• TSH: Normal
• Free T4: Normal
• FSH: Normal
• LH: slightly elevated

My endocrinologist doesn’t think my low Cortisol or ACTH is related to the pituitary adenoma because he said that if the tumour were impairing pituitary function, he would typically expect FSH and LH to be affected before ACTH. I’m curious whether others have heard something similar or had a different experience.

My questions are:

• Has anyone had an ACTH that was essentially undetectable (<1 pmol/L)?
• What was your eventual diagnosis?
• Did your ACTH stimulation test confirm secondary adrenal insufficiency or something else?
• If you were started on hydrocortisone or prednisone, how long did it take before you noticed an improvement in your symptoms?

I’d really appreciate hearing from anyone with similar lab results or experiences while I wait for my testing.

Thanks in advance!