Adrenal Insufficiency Puns

Has anyone recognized and treated Adrenal Insufficiency in the field? Would like to hear how they presented, treatment, and response.

I'm rather confused!

Essentially, I had a 9am cortisol blood test which showed incredibly low cortisol levels.

My symptoms were getting worse, so my GP ordered me to go to A&E and I ended up being admitted to hospital over Christmas :( luckily didn't actually have an adrenal crisis though.

I had a synacthen test which showed my cortisol response was abnormal, the final level was about half the normal level (so not dramatically bad, my adrenals did try bless them).

They therefore diagnosed me with adrenal insufficiency. They gave me a link to the NHS page for Addisons Disease treatments, but at no point during the discussion in the hospital did they mention Addisons or tell me that they had diagnosed me with it, so I'm confused about whether or not adrenal insufficiency is the same thing as Addisons?

Not sure if relevant, but the endo said that they thought my adrenals might be being suppressed by my steroidal asthma inhaler. I agree, as my symptoms got worse when the inhaler dose was increased. But I also had the symptoms before I started on the inhaler (1 year ago) so I'll discuss at my appointment next week. They also suspect that I have a pituitary adenoma due to findings on my MRI and other blood test results, I'm having a re-scan soon.

TLDR; I've been diagnosed with adrenal insufficiency following a synacthen test. They sent me a link to the NHS page for Addisons but didn't mention Addisons to me in person. Is it the same thing? I'm v confused!

Thank you :)

“In a patient who is otherwise healthy, an elevated cortisol after the administration of cosyntropin is a positive test, i.e. the patient has hypoadrenalism.”

Guys I’m really confused. Is this correct? It’s from Master the Boards 6th Edition. If cortisol rises with cosyntropin doesn’t that indicate normal adrenal function? So why would that indicate hypoadrenalism??

Has anyone else dealt with adrenal insufficiency from steroid use? Did you recover? Currently I feel sicker than I do when having a lupus flare, and the neurological symptoms are intense. Any help or shared experience would be appreciated 💜

Hi! I don’t know if this is the right subreddit to ask about this but… I’ve been taking prednisone for my pericarditis after covid. Took it for 6 weeks and two days ago I stopped taking it as my doctor told me to stop. Suddenly I had hypoglycaemia and started shivering, felt shortness of breath, super tired, foggy. Today I rushed to check my cortisol because my doctor told me prednisone may have induced this syndrome. Can you tell me your symptoms?

For clarification: I already suffered from hypoglycaemia and hypoglycaemic crisis after breakfast.

Not formally diagnosed yet but my cortisol level came back at 1.3 and my histamine levels are insanely high. Doctor is sending me to an endocrinologist for further testing but initial thought was that I could have Addison's disease.

For those who had high histamine, did starting treatment dampen that and get it back to normal? I also have rosacea and I'm hopeful that may solve some of my flushing issues as it mostly seems to be histamine-induced.

Well the good news is my colonoscopy came out clean, and my blood work and fecal samples are coming out pretty normal. But I haven't been able to taper off steroids. My doctors now think I'm having adrenal insufficiency, due to steroids, and should go see and endocrinologist. Has anyone else had this and how long will it take to fix? Thanks for any info!

I thought I had adrenal fatigue for years until I found out you can get an actual diagnosis for your adrenals. I'm seeing my endocrinologist on the 11th to see whether I have adrenal insufficiency or not.

To be honest, my biggest fear is they say no & I'm sitting here without a diagnosis, battling some mistery illness.

So a bit of a pet theory but somewhat scientifically supported (any good evidence for or against is great), but I believe that a subset of people with depression and a panic disorder/anxiety have a totally fucked HPA axis. The HPA axis is how much a (chemical) stress signal incurs a (chemical) stress response, specifically prior to treatment they can have adrenal dumps (acute stress response/fight or flight) from even the slightest stimulus. This minimal level of stimulus would occur often and might be as little as a phone ping. Given high enough levels for long enough it might even resemble psuedo Cushing's syndrome.

Now let's put this person on an effective antidepressant (regardless of type); great they've been titrated to a dose effective for their anxiety. They feel great for a bit then get crushing exhaustion and are constantly but non specifically sick. Kinda like if you went cold turkey from a lifetime of high dose steroids, you are suddenly missing the expected amount of that steroid (cortisol) your body "needs" to function. (Kinda sorta half psuedo Addison's)

Prescriber sees the huge negative impact after a few months and switches meds, rinse and repeat, titrate, augmentation, etc. You might get lucky and find a stack of bottles that provides "enough" treatment with "manageable" side effects.

Here we are treating everything with reuptake inhibitors that paradoxically are seeming to making the depression worse. Rather I believe it can be treated more like an addiction to the very high levels of cortisol, epinephrine, norepinephrine, and dopamine.

Perhaps a slow, very slow, titration of an antidepressants or replacement therapy for the lack of cortisol(and other stuffs) could be an effective option rather than playing Jenga with the more permanent medications.

Anhedonia is a big issue even in treated depression, could it be as simple as a withdrawal from extremely high average level of dopamine? (And would there be a way to repair faster than a year+? Possibly a D2 (or multiple) receptor upregulation?

I say stick em on steroids before electric shock therapy lol.

Input from anyone especially with actual education knowledge and experience is greatly appreciated, I'm just Google incarnate.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2958866/#__sec3title https://sci-hubtw.hkvisa.net/https://doi.org/10.1002/1520-6394(2000)12:1%3C44::AID-DA6%3E3.0.CO;2-C

TLDR: I believe that a "high" from anxiety via acute (but really chronic recurring) str

Hi all, it's been suggested I cross post this info here. Hope you don't mind?!! https://www.reddit.com/r/Sjogrens/comments/qo8dfa/adrenal_disorder_in_primary_sjogrens/?utm_medium=android_app&utm_source=share

MOD APPROVED POST

One of my friends is a PhD candidate at Colorado State University. She also has Addison's Disease and has been on the cortisol pump for multiple years. She's one of my original cortisol pump buddies!

Like many of us, she's frustrated about the amount of research into our little rare disease community. Her way of changing that is by focusing her PhD dissertation on us, specifically during this COVID-19 pandemic.

She's currently recruiting for her study. Here's her description:

>Hello All! As many of you know, I am a PhD candidate at Colorado State University, working towards completing my dissertation research. My research project is going to be looking at how those of us with Adrenal Insufficiency have coped with the difficulties of obtaining and maintaining adequate health care during the covid 19 pandemic. This study will include photographs of aspects of your daily life and daily care that you use/have used during the pandemic, as well as a short interview done via zoom or telephone (whichever you prefer). If you would like to participate - please email me at lahomaj@rams.colostate.edu and I will send you the informed consent document and set up an interview time with you!
>
>The total time commitment for involvement in this study is anticipated to be no more than 4 to 4.5 hours. This of course depends on how much time you spend taking photographs, you are free to spend as much or as little time on the photos as you prefer. Interviews will take approximately 1- 1.5 hours.
>
>Thank you all for your help and encouragement and participation.

TL;DR: If you want to help further research in our community, e-mail lahomaj@rams.colostate.edu to sign up to participate in her PhD research. All it requires is a 1-1.5 hr interview, and some photos of your daily life. You don't have to live in the USA, but you do have to be able to speak English in order to participate.

My specialists have tried to taper me over and over.

I ALWAYS end up in adrenal crisis...stress dose...then dose goes back up to where it was.

I want off hydrocortisone so bad.

The imaging of my adrenal glands looks okay. So what's wrong?

I'm tired of my body failing me.

I'm secondary doesn't that mean we can get off? I've been going down by just 2.5mg hydro and then end up in crisis after a while. Like, I could die type of crisis.

My PCP is really pressuring me to get off the hydro saying how bad it is for me.

I feel so discouraged.

So EDS is rare, and so is AI (adrenal insufficiency) so I’m not expecting a lot of responses, but if there is anyone out there who has both, it would be interesting to hear about your experience with managing it because of the impact of cortisol on connective tissues.

Recently speaking to my endocrinologist, I expressed concern about the long term effects of over-replacement in consideration of the fact that cortisone shots are a BIG no-no for EDS/HSD people. He acknowledged this and said to never get a cortisone shot, but replacement of cortisol with hydrocortisone was OK, provided it was in appropriate amounts, which he said can be verified by continually monitoring ACTH.

My ACTH has increased beyond the normal range, despite a previous increase in steroids, and this caused him to increase my dose again. I’m concerned about increasing instability in many of my joints, which was already progressing before I was diagnosed with Addisons.

If anyone else has adrenal insufficiency it would be great to hear how you manage dosage in the context of EDS/HSD.

My doc now suspects that I have tertiary adrenal insufficiency, what is the difference between that and sai ?

So many failed attempts leading to the hospital, trying to get off steroids.

This new endo thinks I may be able to get off steroids after many months.

I hope, hope, hope, hope ,hope, that I do not have to live with this forever.

I feel terrible for you all with true Addison's who have no choice.

And I'm sorry for complaining. :(

I was put on high doses of Prednisone for over 2 and a half years (Rheumatoid Arthritis, Rheumatologist kinda neglected to take me off Prednisone and switch to a safer med) and it destroyed my body, literally, in many ways.

I've been hospitalized for adrenal crisis a few times, once I almost died.

We tried tapering me off of Prednisone several times but each time I got very ill (even tapering 1mg per month) and ended up in the hospital.

I got switched to hydrocortisone when I saw the endocrinologist.

I do get sick every time I've tried on my own to lower to dosage.

I don't want to be on this stuff forever.

When it is secondary, is there a way it can be reversed?

I see my new highly-rated endo at the end of this month so I hope she can answer some of these questions.

Has anyone had success with reversing secondary adrenal insufficiency?

I had Cushing’s Syndrome about 7 years ago. 6 months in, I started to have pain in both my hips. I was cushingoid for 2 years, and then came the Secondary Adrenal Insufficiency. The hip pain has been chronic since the onset, and has continued to worsen with time.

Recently it has gotten much much worse, and I am unable to sit, stand, walk, lay down or do anything without being in unmanageable pain. I’m also having pain in my hands.

My pain is at the point where my femoral head meets my pelvis. The pain radiates down the sides of my legs to my knees, and also down the front of my legs.

My concern is that there may be some femoral head necrosis happening. I had a CT done, and while I had unrelated results come up on my SI joints there doesn’t seem to be anything showing on my hips not even inflammation. For me this indicates that I’m past the point of active necrosis and need an MRI as femoral head necrosis in late stages is generally not diagnosable by CT. Apparently to my doctors that tends to mean that there’s absolutely no problem there, or they are making up other diagnoses that would be visible on a CT but aren’t actually there.

I’m feeling very frustrated.

Has anyone else here suffered with hip pain? Femoral necrosis?

What were your experiences? Can you offer any advice?

TDLR: 7 years of worsening hip pain. Concerned about femoral necrosis. Please share your experiences if you have had hip pain related to AI. Thank you :)

39 to female, went into the ED for persistent headaches for months, found to have 2 cm pituitary macroadenoma, nonfunctional due to the fact that ALL hormones where not affected. Surgery was March 8th, post op biopsy of tumor identified as a silent corticotroph macroadenoma, acth secreting. Post op, I was placed on 30 mg hydrocortisone prophylacticly, 20mg in am and 10 mg in pm.

Blood work (all drawn at 8am after not taking hydrocortisone for 24 hrs) Prep op acth 62 (7.5-63), cortisol 16 (4.3-19). 3 weeks post op acth 9.5, cortisol 3.9 6 weeks post op acth 12, cortisol 6.1 3 months post last blood draw acth 8.5, cortisol 6.1.

I am currently taking 20 mg hydrocortisone, 10 mg in am and 10 mg in pm.

I just a little confused. I was hoping to see my levels increase, but my acth seems to have gotten worse. I see many people say that they have to be on hydrocortisone “for life” while others have “pituitary recovery” that may take months to years.

Can anyone give me any thoughts about this! Am I in too high of replacement dose that is suppressing the HPA axis? Am I taking the dosing at the right time to prevent suppression of the axis? Are these reading normal after having removal of this certain type of tumor? Will have have to be under replace in order to kick my pituitary to start working?

Would bring on long term prednisone effect results on an ACTH stimulation test if the prednisone use was stopped 3 days prior the test and was tapared off slowly beforehand.

Backstory:

In Janurary this year i got my ACTH and corotisol levels checked periodicallh because I presented with some servere symyoms. ACTH and cortisol levels had dropped even though they were still in the normal range.

ACTH went from 34.5pg/ml (report as of JAN) to 18.9pg/ml (report as of APRIL) in 3 months. (This is before steriods) Cortisol went from 17.51ug/dL (in JAN) to 8.73ug/dL (APRIL) (also before steriods)

I was prescribed prednisone 40mg daily on the 4th MAY due to my dropping levels of cortisol and ACTH as mentioned above. Until 6th JUNE I was taking the high dose but slowly after that started tappering off of it by reducing the dose periodically. By 17th JULY I managed to tapper off completely from the steriod and sceduled an ACTH stimulation test by the 20th JULY (3 days after i was compeletley tapered off the steroids). Also something to note is that ths doctor made me switch from prednisone to prednisolone while i end of tapereing off the steroids. Mentioned blow in detail.

The test showed adrenal insufficiency even after 2 hours of the injection. The doctor I visited didnt help with my symtoms and refused to help saying i need to be off of predinisone for a month before getting the test again when i have been suffering a lot badly.

I have low blood pressure ever since ive been off the steriods. Blood pressure is always in the range of 90/60 or below. Everytime i stand up, i get light headed and dizzy. My vision is blurry most of the times if not then its shaky. Ive lost all balance and i cant stand up for more than a couple of minutes. Im hvaing hadd tome breathing and eating any food.

I really need to know if i should trust the reports of the ACTH stimulation test and go to another doctor who can actually help with the adrenal inssuficiency or if i should stay off the medication for a month and get the test done again.

I am really worried about my health because its not only weakness. Most days i have all symtoms of an adrenal crisis and im worried.

My other question would be is it common for the cortisol to drop like that on its own if theres no steriod involment? (As i mentioned from the lab reports from january to april above) And in regards to the ACTH stimulation test, i would assume that the injection wouldve forced my body to produce some

Got this in my AARDA (American Autoimmune-Related Diseases Association) update. I'm hoping it looks like what I think it ought to be, a study that shows how miserable you can be because of adrenal dysregulation while within the normal ranges between Cushing's and Addison's. It seems a lot of Graves' patients talk about this, and it makes them ustterly miserable. I hope this study can shed some light.

https://www.nadf.us/adrenal-insufficiency-study-recruitment.html

I went in for an endoscopy with biopsies today. I took my prednisone and fludro at 7am as instructed and when I arrived all of the nurses were super kind. whenever anyone asked me if I had any questions I let them know that I wanted to speak to the anesthesiologist before the procedure as I have addison's disease and needed to discuss my steroid needs while I was under. the anesthesiologist didn't show up until just before the procedure was about to start, I told him I have addison's and needed steroids alongside the anesthesia. cue the most insufferable conversation I've ever had with a medical professional.

"oh I don't give steroids, they aren't good for you. they suppress your immune system and prevent your body from doing what it does best. I would only give you steroids if you had been shot or were going through a major surgery, you really don't need them for something like this. I wouldn't even give them for minor surgeries so there's no reason why you would need any today."

I had to explain to this doctor that no, steroids weren't bad, I need them to survive because my body doesn't make any cortisol, that I have an autoimmune condition that means I have to take steroids every day and updose when I don't feel well, to which he responded:

"yeah but you don't need extra cortisol. you already took your medicine today, why would I give you more steroids? how often are you taking additional steroids over your normal dose?" after I explained that I increase my dose as needed with emotional or physical stress he sort of scoffed and said "you really shouldn't take steroids that often, they're bad for you. I've never heard of such a thing."

I was so frustrated by this point that I literally started crying in front of him and every doctor in the room while trying to explain that if he didn't give me any steroids I could go into a crisis. the doctor literally responded "what kind of crisis?" as if he had no idea what adrenal insufficiency was. he continued to give me shit until I was basically begging for him to give me my life saving medication and he finally said fine and agreed to give me 50mg of IV hydrocortisone.

I've never had such a shitty experience with a doctor, especially one that had time to view my chart and see that I had adrenal insufficiency. I contacted my endocrinologist afterwards who said that the 50mg should be sufficient but to updose if I felt I needed more. the doctor was in the same hospital system as my endocrinologist and thro

That’s my essential question but here’s my story and context below:

I am a Long Covid Longhauler (15 months) who has apparently developed a Secondary Adrenal Insufficiency from being on inhaled steroids. I have not been treated for it just being told to stay on the inhaled steroids. (As I did not respond well to a trial of Hydrocortisone)

Two 1/2 weeks ago I tried a hyperbaric oxygen chamber session and I had all the symptoms of an adrenal crash for the following two weeks (Intense migraine, nausea, profound weakness and fatigue, light sensitivity and brain fog, and zero appetite) Most of the symptoms were/are different than my regular long-haul symptoms (Shortness of breath, chest pain, GI, muscle twitching, fatigue etc)

It got so bad that my endocrinologist recommended 15 mg prednisone taper 5 days ago. I’m on my 5th day and not noticing a massive improvement but I’m not really declining now either.. They noted if it was a Adrenal Crash I should bounce back relatively quickly, It’s been complicated by the fact that my girlfriend is also been laid out the past few days, so maybe we caught a bug as well..

Nonetheless I’m still interested if anybody has this comorbidity.. And how you manage it.. My physical therapist, who works at the workwell foundation, thinks it’s definitely in the cards that I have it me/cfs, However my infectious disease who specializes in CFS at Kaiser does not think I have it since my sleep has been relatively OK and I have the Adrenal Insufficiency. Note during this crash my sleep has been hell.

Thanks so much for any feedback or guidance anyone has!

So I’m getting tested for adrenal insufficiency/NCCAH next week. I always had bouts of low blood sugar( I’ve been tested for diabetes since puberty since i have family history - all tests have been cleared for diabetes ) but i never experienced both low BP and low blood sugar at once.

Yesterday i woke up with a painful headache- thinking it was just a migraine- i had some aspirin,and ate like normal. My grandma advised me to check my blood sugar and pressure. My sugar was 99 and blood pressure was 109/50. I drank some strong Turkish coffee and drank plenty of water. I had an UTI the other week but no longer had symptoms of it so just figured i was just dehydrated and needed some water. Didn’t feel any better and the headache got worse. I ate but my blood sugar dipped to 70 after trying to clean around the house/being productive and my blood pressure also dipped to 85/55. So my grandma mixed some very salty water and some vitamin powder we carry that has electrolytes and salts in it- drank even more water

After a while everything went back to normal later that evening and the headache disappeared by bed time.

I never experienced an adrenal crisis and never really heard much about adrenal insufficiency/NCCAH until my doc suggested i had it. So i was wondering if this what it could be. I wanted to ask here because google gives quite a long list of general information about low BP/low Sugar and only listens Adrenal insufficiency as a possible cause but not much of the systems of it on its own in detail. Other suggestions were (diabetic- tested for that. Not that), stomach surgery, pregnancy etc the only one made sense was a form of endocrine disorder.

For the past 5-6 months I’ve had extreme fatigue, low blood pressure, and a slow heart beat. I have gone to multiple doctors and gotten my cortisol and thyroid checked, and none of them have been able to find out what’s wrong with me. The fatigue has been debilitating to the point where I haven’t been able to work out and it is extremely difficult to get any work done. My endocrinologist said my cortisol was perfect even though it sounded like it was on the low side especially for being taken early in the morning. What other testing should I have done?

Hi everyone, So a couple years back I (20f) got my first blood test done and I had VERY low cortisol levels. My doctor, who is a natural path doctor, said I had adrenal insufficiency and gave me cortisol capsules that I take 4x a day. I honestly haven’t even thought about since until I went to a new doctor and when I told that he wanted me to specify if I had adrenal insufficiency or Addison’s Disease. I honestly didn’t know. Google didn’t help me to find the answer so I figured this might be worth a shot. Any advice would be helpful.

Edit: Thank you everyone for your kind and educated responses! They were very helpful and I will look into seeing an endocrinologist as soon as I can.

Regrets. I have them.

I was recently diagnosed with secondary adrenal insufficiency from long term corticosteroids (110/21 mcg Advair 2 puffs 2x daily, 50 mcg Flonase 2x daily). It took months of feeling like garbage and insisting on blood work before I finally saw the endocrinologist. And he isn't sure how to move forward. He gave me a prescription for Hydrocortisone but it seems counterproductive.

Has anyone else dealt with this? How long did it take for your HPA axis to start functioning properly again? What treatment plan did your doctor give you?

That’s the direct question but my story is a little complicated.

Essentially I’m a (31 m) 15 month covid long hauler - Who has been dealing with chronic shortness of breath and fatigue among other issues (dysautonomia, etc). In January I was diagnosed with secondary adrenal insufficiency you as my cortisol levels were basically zero. Everyone on my team has been saying it’s likely due to my steroid inhaler’s which Ive been maxed out on for 6-8 months. I’m reading that shortness of breath could be a symptom of adrenal insufficiency, so I’m curious if I had it before they put me on the inhalers.

Is it plausible that it’s likely from the Steroid inhalers or would that be pretty rare?

Why YSK:

If you know you can get secondary adrenal insufficiency (SAI) from inhaled corticosteroid asthma medications, it's possible to prevent this, or at least catch it early by knowing what to look for. If you have concerns, advocate for yourself and get your morning cortisol and/or ACTH levels tested regularly to make sure they aren't getting lower or are already low.

SAI is very uncommon from inhaled corticosteroids but it does happen, especially with Fluticasone propionate as it's more potent ^(1 2). Corticosteroids cause suppression of corticotropin-releasing hormone (CRH). CRH tells your body to produce ACTH, which tell your body to produce cortisol. Cortisol is involved in regulating metabolism, your immune system, and stress response.

SAI is hard to diagnose because the symptoms are nonspecific (fatigue, nausea, lightheadedness, brain fog, joint pain) and often build up over a long period of time before they become a significant problem or cause an adrenal crisis which is potentially life-threatening. It also takes up to a year for your HPA axis to heal once long term corticosteroids have been stopped^(3).

I know this isn't applicable to most people but it happened to me. I really wish I would have known this was a risk and what to watch out for. If this post helps one person, I would consider that a huge win. So, if you feel inclined, please signal boost this.

Sources:

^(1) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2111185/

^(2) https://erj.ersjournals.com/content/42/1/79

^(3) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4319207/#R48

More about cortisol: https://www.ncbi.nlm.nih.gov/books/NBK538239/

Day 10 of my quit here, after 4 years of moderate to heavy use. Feeling... functional, but still chilled, fatigued, and some stomach issues. Orders of magnitude better though.

I've been seeing doctors for months over serious heart rhythm issues, gut issues, panic attacks, and dizzyness. After 20,000 tests or so, and an endoscopy, they've narrowed it down to orthostatic hypotension (falling blood pressure when I stand or move), and serious adrenal and hormone problems -- my cortisol levels are off the charts.

I had noticed recently, when I get up in the night, sometimes my pupils are dilated to a psychedelic level. My doctor actually remarked on them being huge -- indicative of gland issues.

It would explain, to me why recovery takes so long for some people. And it makes sense, since K is both a stimulant, and hitting like all of your opioid receptors, that it would come with consequences to your natural production of critical hormones.

Thoughts?

I recently learned that I have been suffering from Adrenal insufficiency. My migraines started 30 years ago, but got worse about 8 years ago. The migraine attacks went from a few per week for a couple of weeks, then nothing for six month, then another few per week. With the decreased hormone production from adrenal insufficiency the migraines increased to one per day all year long.

It took a while but I noticed that whenever I was prescribed steroids for other conditions the migraines ceased. I've now been on daily hydrocortisone (15 mg total) and the migraines are once again under control. Not eliminated but I can live life again.

Hopefully sharing this experience can help someone.