r/AdrenalInsufficiency

Hi, so I've been taking prednisone and am tapering off of it for another medical condition. I mentioned to my endocrinologist that I've been having bad side effects but she said to continue tapering off prednisone for now. I just got labs done and my cortisol and ACTH are super low even with taking a high dose of prednisone. I'm not sure what to do in this case as my appointment with my doctor is a couple of days from now and I feel horrible. On top of all of this, I'm fighting an infection and taking an antibiotic. I don't know if it is okay to take hydrocortisone on top of prednisone to see if that helps the low cortisol symptoms.
It's no wonder I've been feeling so bad 😭

I posted a while back about my labs being gray -area low, but consistently over a 6 month span. My doctor skipped the ACTH stim because he thinks it's a central issue. The crh synthetic hormone is in a shortage, so that test is no longer the next step. He has a referral in at a big research hospital to see if they can do the crh test. In the mean time, he's running my aldosterone and renin levels. With my lab numbers he's giving me a partial central adrenal insufficiency diagnosis. Does this sound right? Here are my labs again for reference

Am cortisol 6, ACTH 5

AM cortisol 6, ACTH 11

AM cortisol 10, ACTH 5

Hi everyone.
I’ve recently been diagnosed with SAI after a year and on hydrocortisone since a few months.
Because I’m still extremely exhausted, still have abdominal pain, dizzyness and just overal feeling of malaise my endocrinologist said there’s probably something else going on.
According to her patients with SAI that take hydrocortisone feel at least 80% better in a matter of days.
All of my other hormones have been checked and everything looks good. They’re thinking about me/cfs.
I wanted to ask if it’s true that most of us with AI feel like normal again after steroids? Should I keep looking into other problems? Or is it possible to need a lot more time to heal even when taking steroids?

I have to get a brain MRI on the 22nd, and I’m really nervous because I’ve never had one before. I’ve heard the contrast they use is different from the contrast used for CT scans, so I’m not sure what to expect. I was told that if I’m claustrophobic, it might help to keep my eyes closed the whole time. What was everyone’s experience if you had one?

I’ve been in and out of adrenal crisis for almost 10 days due to grave mismanagement by my endo, and finally admitted myself under a different endo at the hospital. Current plan is stabilizing me for 3 days on around 200-150mg hydrocortisone/day.

My question is: how do people usually transition from ICU/hospital-level dosing back down to physiological dosing after a bad crisis?

What kind of dose were you discharged home on, and how fast did you taper back down? I can’t imagine tapering by tiny 2.5mg steps every few days starting from like 80–200mg HC… that would take forever.

Just trying to understand what a normal recovery taper looks like after severe instability/crisis.

PS: halfway through this process my regular endo told me “secondary AI patients can’t have adrenal crises” 🤡 and “if you want to stay on high dose steroids go ahead, you’ll just gain weight.” So… yeah. Looking for a new doctor now.

Hi! I'm a teen girl with high blood pressure, low potassium, early puberty, irregular "that stuff", short height and I have diagnosed CAH! My parents assume I have the nonclassic verson of 11β-hydroxylase deficiency but I have the classic one and have been too scared to tell them my stuff is different looking lol.

Sooo my only worry is that maybe I could have an adrenal crisis one day (if thats possible?) Or that i might need steroids?

Is it advisable to tell my mom i have the classic version? I reaaaaally dont want to tell her how I know. That is really scary 😭

I wanted to share something that happened to me as a warning for others. I discovered that my hydrocortisone pill bottle had two different pill strengths mixed together, 5mg and 10mg tablets in the same bottle. I only noticed when sorting my weekly pill organizer and something looked off. I sorted my meds, in two med holders, for two weeks at a time and got a new bottle when I sorted my meds two weeks ago.

I experienced significant fluid retention, edema, rapid unexplained weight fluctuations, and felt generally awful without being able to explain why. It was only when I looked closely at the pills themselves that I figured it out.

Always inspect your pills when you get a new bottle and when sorting your organizer. Pills from the same manufacturer can look very similar in different strengths, and a pharmacy dispensing error can easily go unnoticed.

I've corrected the error and reported it. Just wanted others to be aware, this is an easy mistake with real consequences for those of us who depend on precise dosing.

I was wondering if anyone would be willing to share their symptoms prior to diagnosis of hypopituitarism and what the diagnosostic process was like, what did the labs look like?

A little background as to why I am curious. My 10 year old daughter had a mild hypoxic brain injury at birth. At age 5 she started experiencing excercise induced "crashes" which included all over body weakness, BP drop, body temp drop (96), nausea, vomiting, and headache. Over the last 5 years these episodes have intensified in frequency and duration. She been to the ED countless times and they diagnosis her with "atypical migraine" even though she has documented low BP and body temp, as well as elevated ketones, elevated potassium, low calicum, and when they pull a POC VBG it suggests mild acidosis. Interestingly, her blood glucose is always normal or running slightly high so we dont know why her body makes ketones (not fasting or on keto diet).

Currently she has been in a "crash" for 6 weeks with daily postural headache, low blood pressure, low body temperature, muscle twitches, diarrhea, dizziness, shortness of breath, and horrible fatigue (sleeping 16-18 hours per day). Her orthostatic vital suggest POTS (46 bmp heart rate increase at the 10 minute standing mark) but she is also having a lot of instability in her BP which does quite fit the diagnostic criteria for POTS or Hyper-POTS.

I've pushed for endocrinology referrals and endo did a thorough investigation for T1D ( all labs normal), and checked morning cortisol, free t4, and TSH. She did these labs while experiencing all the symptoms above, horrible stabbing/throbbing headache, BP 85/55, Temp 96.6 Her cortisol was 6.3 which was just inside the 6.2 cut off, leaving me wondering why her body isnt mounting a decent stress response when feeling so poorly. Additionally, her free t4 was .68 and TSH was 1.86 so it seems there is also a failure in the body to trigger TSH to increase due to lowered free t4. The endo looked at these labs said "everything looks normal" and suggested to return to neuro and cardio for treatment of migraine and suspected POTS. I've pushed back wanting further eval on the low-normal labs and have essentially been told that because my daughter has maintained a appropriate growth rate and has not been vomiting (though she does have frequent diarrhea) no further investigation of central AI or central hypothyroidism is warrented. Does this sound correct? We're your cortisol and free t4 labs much lower? Does growth have to be impacted to be diagnosed? TIA!

Diagnosed with SAI a few months ago. I seem to feel terrible the day after indulging in a cookie or any kind of sugar snack, it doesn’t take much.

Is this normal? Can anyone help me understand why/what’s happening?

I’m really struggling right now. I’m newly diagnosed with SAI and have been taking Prednisone for a few months. At first, I felt like a whole new person. It seriously changed and saved my life.

3 weeks ago, I developed what seems to be a jaw infection overnight but all of my doctors are latching on to it just being the Prednisone despite testing positive for strep ( no sore throat though), having sudden nonstop daily headaches, increased tooth sensitivity, appetite loss, severe fatigue even when stress dosing, a massive tender roll under my chin that developed overnight (it looks like I gained 100lbs), labs that point towards infection (but they say it’s just the Prednisone), over 50 little bruise like marks on both my thighs (they blame it on hyperpigmentation even though it happened that same week), a confirmed eye infection and the back of my tongue swelling as if I’m having some kind of allergic reaction that just won’t stop.

So far, I’ve gone to 6 different doctors including the ER and urgent care in 3 weeks and everyone keeps claiming it’s the Prednisone and “chronic moon facies” but i feel like I’m being choked 24/7 and none of this happened subtly. My PCP told me to go back to the ER for a CT scan but the last time, they said it’s just the Prednisone and sent me home after running a CBC and testing me for STDs. Smh

I went from fine and functional one day to all of this overnight. My dosage didn’t change except for stress dosing after this all began. I’ve even shown them photos of a day before it happened to compare and it doesn’t help.

I’m just really lost and I’m hoping that someone else here might’ve experienced having another condition/illness being brushed off as steroid related since getting treated for an Adrenal Insufficiency.

so my pcp wanted me to go to an endo for suspected adrenal issues that are tearing my life apart (post covid). my blood work showed a lot of concerning results but the endo said it was mostly "normal". she said most of it was probably dysautonomia related or stress related and that it should go down when I treat my high testosterone levels with spirolactone. she didn't even give me proper labs the first time I saw her and just told me yeah you have hypoglycemia and that was that. my PCP was confused on why she didn't order me any blood work and was the one who even ordered then for me. she can't interpret them since she's just my pcp so she sent me back to the endo and I got absolutely nowhere. I'm feeling dismissed and horrible as usual. can't take the fatigue and racing heart and I believe I've already had an adrenal crisis that almost sent me to the er but thankfully I ""recovered"". is this normal or what should I do? I'm terrified of taking the spirolactone because honestly I don't think it would help me for my issues and I think it will make my pots worse. I can't handle another medication making me sick by negligent doctors. does anyone know what I should do here??

Hello my fellow adrenal insufficiency friends

I’m in a bad mood because I hurt my neck a while ago and had to spend the entire national holiday here in pain. Had to cancel a lot of plans too. It was the worst stiff neck of my life and for a few days one of my arms was weak, it was pretty scary.

I have autonomic nervous system disorder and long covid too, so HIIT and heavy weights are a no go. (For me)

This was a wake up call for me tho. I used to be fit and into workouts before I got sick. Now I’m a steroid injected sack of potat and have bad posture and joint pain. I went from pilates princess to couch potato. I don’t like it, but I feel lost and don’t know where to begin with.

Do you have any YouTube workout recs for people like us? Thank you. 🙏

What helps the full body hotness/malaise feeling? Its like your whole body has a fever/ you are on the brink of breaking into a sweat but you don't actually have a fever.

I had about 90 days of chronic fatigue until I was diagnosed with secondary AI, and I am currently 10 days since I started hydrocortisone 20mg in morning and 10mg in evening.

Curious if others have had this hotness feeling/what helps. Thankyou!!!

I’m a 50yr old in perimenopause and was diagnosed with PAI 8 months ago. After the first 2months of tapering HC, I felt amazing! Strength increased, I started HIIT again, my brain functioned again. I put on 10kgs so was keen to reduce my dose.
I reduced my HC dose to 22mgs in Jan and was great for a few months . I then developed low cortisol symptoms., brain fog, exhaustion etc. I upped my dose to 24mgs a day but I’m just not feeling great.
I’ve had to stop HIIT. I’m. still managing strength x 2 a week but tbh it just feels really hard. I find the weekends the worst, I’m just stuffed after working all week and often spend a Sunday on the sofa.

This week I have introduced a 4th dose. So currently my regime is 12mgs @06.30am, 4mgs @ 09.30am, 4mgs @ 1pm and 4mgs @ 4.30pm. This has helped the really obvious dips during the day but I’m still just not getting on top of it. I take 50mcgs fludrocortisone and my blood pressure is always good, no dizziness, just exhaustion.

Have any of you found perimenopause has influenced your disease a lot?
Anyone a high metaboliser and needs a higher dose?
Anything else that has really helped you manage?

Would love to hear your experiences as this still feels all very new and difficult 😳
TIA 🙏🏻

Im pretty sure this is just because ive been on steroids for so long, but im having weird weight distribution. I keep putting on a lot of weight, and dont get me wrong I dont have anything against being fat, but its all going to my stomach and my face and literally *nowhere* else and I cant fit into clothes I fit into months ago ive replaced my wardrobe probably twice in the past year. Is this an insulin resistance thing? Ive heard insulin resistance is common after long term cortef use but my doctor hasnt mentioned anything about it. I am struggling with fatigue more than I have in a while. Especially after Ive eaten. I have pituitary insufficiency and hypothyroidism. My thyroid levels are in normal range (but we are working on getting them a tad bit higher)

I also havent been tested for adult growth hormone deficiency, and im a little unsure how to bring it up.

I’ve never posted before so please be patient with me 😬
I recently had an unrelated ER visit where they discovered a tumor on my left adrenal gland, when I went down the rabbit hole I assumed I had high cortisol based on symptoms, body type, weight gain, etc. I’m currently in the process of getting VSG because I’ve gained 60lbs in the last 5 years and 20lbs of that was gained within two months.

So the part that is confusing me is that I had a follow up with my PCP and got an AM cortisol test and it’s low! 5.4 ug/dL . Has anyone else experienced this? Is it possible to experience both? MRI is in a month and the results came in on Friday and haven’t been reviewed yet but Google is so unhelpful and I’d love to hear from people who actually have gotten useful information.

Edit to add: I have an MRI coming up 05/28, endocrinologist referral appt on 07/01, haven’t heard back about cortisol results yet since I checked mychart on my own.

I’m hoping to get more info on what others did to receive either a proper diagnoses or managed their symptoms on their own!

Currently tapering down from 17,25mg to 15mg. (Seconds AI after long term cortisone treatment for ulcerative colitis. It’s been now almost a year under hydrocortisone)

I don’t want to stress dose because I want to be steady and stable in the progress of lowering the doses.

My endocrinologist gave me a prescription for progressive muscle reconditioning with a physiotherapist and even though I feel tired and my muscles are weaker and shakier than ever, I can’t wait! I also want to start going to the swimming pool regularly and maybe one day run again… 🤞🏻

What sports do you practice ?

How do you deal with physical activity ?

Are you getting better and improving your physical fitness even though you’re still feeling tired and under treatment ??

Do you stress dose automatically?

Thank you very much!