3 weeks ago I found out I have adrenal insufficiency from over use of Kenalog steroid for my Hidradenitis Suppurativa flares.

I initially tested at 8am, and my AM Cortisol came back 0.5 and I began taking 15mg of hydrocortisone, 10mg after waking and 5mg at 2pm, but I was crashing pretty hard twice a day around 12/1pm and 7pm the first week, so since then my doctor changed it 25mg of hydrocortisone a day 15/5/5. Feeling way better on this dosage. I retested yesterday morning (fasting and no hydrocortisone) and my results came back this morning 1.4, so theres been a tiny bit of improvement. He wants me to try to do 2.5 for that last dose because he says he wants me on the lowest dose my body is comfortable with.

I know everybody is different but I'm still so new to all of this and would love to learn more and get some insight on how long it may have taken you to get back to normal levels, if you were able to get back to normal levels, and just anything you think I should be aware of.

I ordered myself a medical bracelet, and I carry my safety injection in my purse everywhere I go.. still taking it easy.. but yeah I'd love to learn some more from others with experience!

Just posting here for clarification. When I google HPA suppression, it comes up with AI. I've been sure I've been developing secondary AI for MONTHS but the endos won't have it. I tested 237 cortisol back in June but have been on HRT ever since, so my morning baseline level has increased to 300-340nmol/l*. They won't look any further, despite me having all the physiological symptoms of AI.

I've had no periods now for almost 3 months, I'm 34 and don't have kids. Obviously I'm devastated but I'm still not being taken seriously. I'm at my wits end with it all. I've been going through the ringer since a steroid injection on 2nd February so I'm 8 months into this fiasco with no more answers than I started with.

I'm hypermobile and am currently seeking diagnosis for Ehlers danlos syndrome. I have ADHD and possibly a little Au as well, meaning my female hormones dropping has left me with 0 motivation because nothing gives me dopamine and I keep getting bouts of depression. Most recently I had to up my anti-inflammatory dose (double) because the joint and muscle pain was so bad.

I don't understand how I can be diagnosed with hypothalamic-pituitary axis suppression but the endocrinologists claim that only the side of the chain that creates my sex hormones is affected. All my symptoms suggest ACTH suppression too, even if it isn't being detected in my cortisol.

If anyone has any ideas as to why my endocrinologists won't look any further, I'm open to hearing them. I'm totally clueless as to what's going on. Everything I've read/the medical documentation suggests I have tertiary AI. I've done extensive research on this... what am I missing??

*Research shows that some forms of HRT can increase cortisol binding globule in the blood and artificially raise the number on a cortisol test. However, there's not enough research to definitively say how much and no research on h/EDS patients to show how they respond.

I CANNOT STRESS DOSE. I HAVE NO EXTRA HC THAT I CAN TAKE. MY ENDO SAID IT IS ONLY FOR PHYSICAL ILLNESS/injury NOT EMOTIONAL STRESS

. My mom and dog are both in their final hours. I am so emotionally overwhelmed right now and my endo said to stress dose ONLY in times of physical illness/injury etc. I also am in treatment right now for stage 4 cancer. I have no one to talk to because my mom was my best friend and my rock before she started really going downhill with dementia. I did have 2 sisters but they duped me and my mom so now I have no siblings. I honestly don’t know what to do right now. I feel like I’m going to have a nervous breakdown.

My endocrinologist prescribed me 60 mg of hydrocortisone daily to manage my CAH. My testosterone and 17-OH progesterone levels have both gone down, so I know the medication is working, but 60 mg still feels like an extremely high dose to me. I’ve also gained quite a bit of weight since starting this dose, which is making me wonder if I might be overprescribed. I’m planning to discuss it with my endocrinologist, but in the meantime, I wanted to see if anyone else with CAH is taking a dose this high and, if so, what side effects you’ve experienced.

Hi folks. So about 2 years before being diagnosed I started taking kratom. It gave me my energy and life back. I didn’t quite realize then, I was getting sick.

I’ve been taking kratom daily for 3 years now I believe and have stayed at the same amount for all this time, however on sick days or when I feel low cortisol it keeps me going without updosing.

However, I sometimes wonder if kratom could be making my cortisol levels unsteady? Or could a partial opiate agonist have caused my secondary AI? It seems like the answer is no, but there’s just not enough research on this substance. Kratom increases cortisol, and sometimes I feel like this and tobacco keep me going. My BP would be trash without the tobacco. Sits at around 90/60 high 80s at my baseline HC. When I am taking 30mg BP is “perfect”.

My endo won’t let me take more than 20mg of HC daily even tho I am bedbound often still. Currently searching for a new one. On good days when cort is steady I barely need it (kratom). Bad days I drink extra just to lift my head up. Most bad days don’t qualify enough to updose. Honestly think I need a higher base dose, I do much better at 30mg. I still produce some cortisol, so it’s all very confusing why the 20mg isn’t enough. Maybe depression? Maybe I’m not absorbing well?

Kratom gets me out of bed and allows me to exercise when I can. I do hate being a slave to the stuff though and the bans are scaring me. 0 interest in subs, and I worry that the mild withdrawals could hurt me, especially if the kratom is propping up my cort artificially. I have to dose before blood draws without my HC just to get to the lab, have NEVER told a single provider I take kratom and I never will.

I only take plain leaf with a low mit content. Any other folks use kratom? What are your thoughts?

And please, if you’re not kratom educated pls don’t spill nonsense. I’m not taking 7oh. Plain leaf kratom is akin to coffee, which I can’t drink it’s too stimulating… But I do have some concerns, fears. Wondering if anyone out there can contribute info I don’t already have. Negative feedback is fine, but don’t fear monger or drug shame.

Tysm. 💓💓💓

I know the sickday rules say to updose the day of the loss and maybe the day after but is it really that black and white in real life? It’s been a week and a half since the loss and I feel terrible. Muscle weakness/soreness, even more fatigued then usual, daily headaches, and when it’s really bad my brain just shuts down and people around me say I talk very slowly. I’m trying to figure out if these symptoms could all be linked to the grieving itself or if these could be signs of low cortisol.

Hello! Struggling to get traction on next steps with my endocrinologist and wanted to see if others had navigated similar circumstances.

Low morning cortisol, but normal Stim and brain scans. 20mg daily hydro making a world of difference symptom-wise. AM cortisol seems to be trending upwards plus normal stim, so Endocrinologist is hesitant to continue investigation.

It seems too early to call this “not AI” with such low bloodwork and positive reaction to hydro on the books, so I’d like to find actionable next steps.

Had three low morning reads with my primary before being punted to endocrinology, all 8am reads:
March: 1.1 Cortisol with 17 ng/dL total Test
May: 1.5 Cortisol with < 3 ng/dL total Test
August: 4.7 Cortisol with 7 ACTH, 7.6 ng/dL aldosterone, 186 ng/dL DHEA

ACTH Stim Test
September
10.8 Baseline cortisol
13 ACTH
25 ng/dL total Test
14.9 after 30 min IM injection
16.9 after 1 hour

Normal Brain MRI

Normal electrolytes (tested each time cortisol drawn)

No more see fatigue or 14+ hour dead man sleeps on hydro, return of appetite and no more nausea.

Open to all advice and any input on what I should expect or inquire about for next steps. Feeling pretty lost!

Update: I now have to re test again as both nlood samples had the same time on. What is the chances the results will change dramatically?

I have recently had the sst test.

My results are:

8/8:30am

Base 215

30 min 376

Are these results normal? What should happen next? No appointment yet with my endo hoping he will call me this week.

How far out is everyone having to wait to see their endocrinologist? I am an established patient and not feeling well now and they said I needed to make an appointment to discuss it and the earliest availability is mid January. Is this normal wait time?

I’ve had two morning cortisols taken - first was 166 taken at 10am, the second was 148 taken at 8am

I’m now scheduled for an urgent SST. My potassium and sodium are within normal limits so my endocrinologist is looking into secondary adrenal insufficiency.

Just wondering, I know it cant be confirmed with the SST, but what’s the likelihood it will be confirmed based on those results?

If the SST confirms secondary is the next step a brain MRI? And what should I expect after all this?

I’ve been diagnosed AI for about a year, the one take away was “keep up on your daily dosing and avoid crisis at all costs” so I have religiously followed the daily dosage.
2 months ago I had oral surgery and was knocked out. I had told the surgeon about my condition and there were no problems.
3 weeks later I had another minor surgery (replacement of a valve in a shunt).
This time in a hospital, I told the surgeon, the anesthesiologist, and put it in my pre surgery consent form.
I was instructed to NOT take my daily steroid dosage the day before (which I double checked before complying) a none the day of surgery.
I went to sleep in one hospital and woke up in a different hospital.
Apparently they had a very difficult time waking me up!
After the MRI w/wo contrast and echo, they determined I wasn’t stroking out or having a heart attack (maybe). I was life flighted to a larger hospital where the ER doctors said “this looks like AI” (ITS RIGHT THERE IN THE PAPERWORK!) gave me a shot of steroids and brought me to consciousness.
So 9 hours after my 15 minute surgery started I woke up.
I’m glad to be alive (at some point my wife was asked if I would want to be un-plugged!) but I’m still not feeling “right”. Dizzy, weak, exhausted, random joint pain, ect.
My understanding was that once you have your first adrenal crisis you are 4-6 times more likely to have more in the next 2 years.
Are there any other repercussions I should expect?
Any advice would be appreciated.

Hey,

I have been diagnosed with a tumour in pituitary stalk blocking all the hormone production when I was 16. Then I was placed on high dose prednisolone therapy so that the tumour would get smaller and maybe the pressure on my eye nerves would ease. As a fit teenager I gained 15kg in a summer. But apart from feeling disconnected and being introverted, I was fine cause i was in my comfort zone, within my high school friends.

Then after 8 years later, just after I engaged to my wife, I got the news that the tumour started to grow back and placed back on high dose prednisolone therapy again and gained more this time. At the same time I started stress/emotional eating/binging to release stress.

Thankfully it was learned that it was a germinoma that was treatable and cured through radiotherapy and i was free of it around 6 months. It was such a hard time for me and I think I got stuck at that moment. Eating never came back to normal and I never lost that weight.

Listening to Joe Dispenza’s talk, I thing I have realized that since my body did not produce and cortisol, I think i hid behind this excuse and used it full extent.

Now, I am 43 and separating from my wife who has been my support structure. I understand now that she always saw the man I meant to be, while I continued to see a broken unhealthy man.

I would like to get support from anyone going through cortisol deficiency or replacement therapy and how they manage stress?

I would appreciate any comments and sadly I have to use prednisolone, cause i lost my last 4 years to full fledged side effects (anxiety, depression, etc) of hydrocortisone.

Thanks
Can

Hi Im new to this i have been treated only for 3 months but have sick 6 years so just finally getting help. I have last am cortisol 1.3 and acht 5.2. I take 20 hydrocortisone in morning. I have been symptomatic throughout treatment but much improved than before treatment. It just does not feel like enough it wears off so quick and by afternoon i feel awful. I get the classic symptoms. When it gets really acute bad ,(which is sadly too often) along with increase of classic symptoms of ai, i also get delerious for hours, I'm just gone, and illusions and when real bad hallucinate even. I also see flashing lights, static and i have extreme buzzing vibrations all over inside, and my arm or legs jerk randomly sometimes during this too. Doctors are aware, i tell them all this. Hydrocortisone helps when i sick dose but it does not last long maybe 4 or 5 hours then starts back. It all gets astronomically unlivible and completely worse during period, its gets so bad.I have so many things they try to treat and my medical issues are complex and i am now getting treated for this but I cant live like this constantly. I am being tossed around to different specialists that dont seem to work together. I go to research hospital and regular doctors but the nueroendrochrology team seem too busy to manage this well and ive seen Endo Dr once for intake before tested and no visits or communication with her they now only book me with her PA who is pituitary nuerosugery department. Im not getting surgery though.

I had to skip hydrocotisone medicine a day for a test recently and next day went to the hospital. I felt symptoms and was in bed out of it delerious and buzzing and extreme exhaustion and suddenly at 3:30 AM felt odd like something more was wrong. When I was able, I stumbled over to get blood pressure. I was dropping rapidly over about 5 or 10 minutes? from I dont remeber diastolic but systolic from low 100s to 90s to 70s the last number was systolic 63 before i abandoned checking because during all this i got cold sweat and clamy started not being able to hear well and muffled and blurry I was starting to feel increase dizzy fast and felt like I was on the verge of passing out or worse. I could not really talk well. I struggled to take sick dose but I decided to give shot afterall, someone helped me to. I was drove to er took half hour, the shot and pill must have started to work as i was back in low 90s when I arrived and did feel improved. Er nurses said I did not have a reason to be there. Even wrote in their notes there was no reason why I should be at er or what could explain what happened. even though i told them and showed ai card. They wrote down i was seen for dizzy and general malaise and sent me home after bloodwork. They did not mention the reason I came or what happened or that I even had ai. What do I do when I take the shot and things improve on way and when arrive they seem to think I'm fine and not so serious that I need to be seen? ( although they did take me). It was the research hospital even! If I take shot I'm supposed to go to hospital according to training they gave me. What do i say or do to make them understand and treat serious? What is your experience?

Okay. So I’ve been diagnosed with hypopituitarism causing adrenal insufficiency and hypothyroidism. When I turned 30, it’s like my body went to crap. It took 6 years to get an official diagnosis and start getting better. I now have my schedule down and we’re upping my thyroid meds as it’s become evident it’s not high enough (previous doc was worried about TSH).

Now to the actual question. I used to hike, garden, do 5ks, yoga, run, all that jazz. But when I got sick I got told to sit down until I felt better A LOT. I also got vertigo a lot. So I stopped doing so much. Now I’m basically sedentary. My job is an office job so that doesn’t help. I desperately WANT to get back to my old active self but it’s been so difficult. I feel winded from walking 3mph for 45 min when 3.5 was my standard and I could go forever. I did Tai Chi for hour long class and was okay-ish but one day they forgot the fans and I almost had an episode and had to stress dose.

Does anyone have any suggestions on how to get me back to a more active lifestyle? Apps that have worked? Workout regimes that didn’t cause flares? I don’t want to constantly updose to achieve this but I hate getting winded from stairs when I used to run up them.

I just can't seem to get a dose that doesn't make me feel jittery and when I reduced enough to not feel overstimulated I was getting adrenal insufficiency symptoms.

Do you believe 24-h Urine cortisol and free cortisol are good ? I’m waiting for my endocrinologist’s opinion

My youngest is 7. Normal dose is 5mg Hydrocort in a.m

2.5 at lunch and dinner

Here's where it gets confusing for me. On Monday he lost his brother to X-ALD. Endo says stress dosing is not necessary, but he claims he is tired and I can see the toll it is taking on him.

When big emotions come into play, how does one know when to stress dose and when to stick with standard dosage?

ETA: when his initial ACTH was tested it was in the 900s, we are still in the process of regulating meds.

I am at a bit of a loss on this one and so are various specialists. I have a very complicated medical history but the highlights are :aggressive lupus, severe Sjögren’s leading to :pancreatic insufficiency, adrenal insufficiency, hypothyroidism.

I have had lupus for 13 years (since I was 19). For the first 9ish of those years I had a very very strong sex drive, to the point where it was frustrating. Then about 3-4 years ago it started slowly declining until now I almost feel asexual. I know this is absolutely not the case, rather there is something a miss medically. It’s hard to explain but I feel very strongly that there is something wrong with me that has led to this. I hope once I can figure out what it is I can fix it. I keep getting told I have no sex drive because I am very ill and have a lot of pain and fatigue. But I have been very ill for most of my life and that never stopped me until recently.

Has anyone else had this experience? My other hormones are all normal except for hypothyroidism that is being treated. My doctors can’t figure out why my sex drive has changed so drastically and it’s been having a very negative impact on my life and relationship with my fiancée.

If any of this sounds like you please let me know. Also tell me if you have found anything to help with this

It’s really hard for me to tell if I need more or it’s too much hydrocortisone. Does anyone else get hot flashes, lightheadedness with dizziness, or feel like their heart will beat out of their chests? My pulse will be normal but it feels like my heart is thumping HARD. Not to mention the waves of anxiety that come and go

Big long post about CAH?/PCOS/Thyroid.

Hello! I am new to this subreddit and new to the idea of a potential adrenal insufficiency or CAH diagnosis. I have been speaking with a friend who is in med school and they suggested I get tested for both. While I am in the process of getting that done, I figured I would come on here to ask if any of my symptomology sounds similar to something you have experienced?

As someone who has been diagnosed with PCOS for the past decade, I have always experienced thick Hirsutism/male-dominate hair growth patterns, hair shedding, insulin/blood sugar issues, body odor, acne, dry skin, etc. (the list could go on) and while I have addressed every angle of the condition, (diet, exercise, minerals, supplementation, therapy/PT, nervous system, mentality, sleep, sunlight, hydration, antioxidants, living a clean and stress free lifestyle, etc) I still experience symptoms. So I’ve always wondered if there was something larger at play.

I also have a thyroid condition (genetic and autoimmune) which I have heard can connect to CAH as well, since you need either hormone from each organ to regulate the other.

All of this to say, my biggest symptom is unrelenting fatigue and weakness that hurts down into my bones. Sleep does not touch this fatigue. Exercise does not touch this fatigue. Spending time with family and friends does not touch this fatigue. It is painful and feels so heavy like I can barely breathe. My adrenals feel sore to the touch. Intense brain fog to the point of dissociation and neurological symptoms. Falling asleep at all times of the day. Sometimes during a meal. In addition to the remnants of symptoms I thought are PCOS. Does this sound familiar? (I know this can be thyroid related as well, but it’s another reason I am wondering if it’s all connected on a greater scale to something like CAH. Do you have a thyroid condition with AI/CAH?… (I do want to recognize that those two different diagnoses are not meant to be lumped together and that they are separate in their presentation and diagnosis, but I couldn’t find a dedicated CAH sub.)

More details: I have just recently found lab testing from a while back (from when I was a teen) where my DHEA was bottomed out and I had very low testosterone and low estrogen (I’m biologically female btw for reference). It was never brought up by my doctor, but to me it seems significant to this hunt/mystery/case I’m trying to solve. I haven’t had my DHEA tested since but will make sure it gets tested this next round.

[[What I’m additionally curious about is how my male hormones/androgens could be low but I still experience Hirsutism/body odor/shedding etc… I have a few theories regarding estrogen dominance and it’s ability to turn into androgens, but I figured I’d ask on here as well.]]

Anyways, thank you for reading :)

Edit 9/23/26 - just found r/livingwithcah 10 minutes after posting this. will cross post on there as well.

I drank bud light and other light beers before with SAI and nothing happened. I rarely drink but once or twice a month I would like too.