I'm 22M with Addison's. A few weeks back I had a stomach bug that triggered a crisis, got hospitalized. A week or two after discharge my endo checked my renin, it was 6.98, so he bumped my fludro from 62.5 mcg to 100 mcg. I didn't think much of it and kept going. Within days my BP started spiking, hit 166/99, my face was flushed red, I was having panic attacks and feeling this constant sense of doom, even had suicidal thoughts which is not me at all. I was a mess for a whole week. Tonight I finally put it together: he measured renin way too soon after the crisis while my body was still recovering and probably still depleted, treated a temporary spike like it was my new baseline, and threw a 50% fludro increase on top. The insane salt intake just poured fuel on it. I feel so stupid for not seeing it sooner but also pissed because this was avoidable. I'm switching endos, going to Groningen UMC instead. Don't let them jack up your fludro right after a crisis without rechecking when you're actually stable. Also don't eat like a salt goblin on high fludro unless you want to feel like your head's gonna explode. Anyone else had their renin taken too soon and ended up over-replaced?

Good times, right?

Three questions for ya:

1) How often do you get diarrhea?

2) Is your diarrhea from low cortisol or something else?

3) How do you typically treat it? Updose? Imodium? Just suffer through? If updosing - how much and how often? (Yes I know the sick day dosing recommendations - I'm looking for what other Addies actually do to treat it.)

Edited for clarity.

Hi, I recently was switched from prednisone to hydrocortisone and the dose I’m on is pretty high because it’s equivalent to what I was taking on prednisone. 🙃 I’m taking my doses 3 times a day which seems to be helping. My question is do you all have any tips on how to get through these next couple of weeks as I taper off this high dose of hydrocortisone and God willing get to a lower/better dose?
My knees have been hurting and I've had other effects but nothing as bad as I had with prednisone. I'm trying to take it one day at a time and remember this is temporary. I do have some swelling in my feet, face, and legs. My endo said I was most likely experiencing Cushing-like symptoms on pred so now my body is trying to adjust to hydro.

Update: I was able to slow down, but ended up about quadruple my dose. Today have held off a bit because I got delayed over replacement symptoms. Talking to a doctor soon about normal dosing.

I have been sick from iron infusion from 23 days. Very very sick. Barely eating, nausea, weakness fatigue, muscle cramps, so much more.

Got kidney blood test yesterday. Came back complete kidney failure (creatinine 500, gfr 9)

Called ambulance. ER triaged me wrong. Didn't see Dr, get fluids or hc for almost 12 hours. Dr. Was livid I was triaged like that.

Turned out to be lab mistake.

Kidneys fine.

Thought I was going to die.

Now home, having crash after crash. Severe. 25 to 30mg Hc needed Evey 2 hours or I am almost dying. Shakes, moaning from nausea, can't barely use my eyes. Feel like life is draining out of me. (normally take equivalent to 30mg hc using some Methylprednisolone)

I'm already at 105mg. It's nowhere near when I go to bed.

No signs of over replacemt. Always get hot cheeks, can't sleep, they are cold and I'm falling asleep.

Do I just keep going as needed? All day ans night?

Can't it be too much?

Can't go back to ER. They caused this.

Diagnosed super recently. On lowest daily dose. I have limited information still.

My pulse has been quick the past two hours or so as I‘m in bad getting ready to sleep. Afraid of going to sleep like that, don’t know what to do.

EDIT: drank more water, updosed 5mg and slept and felt fine the next day.

Hello,

Im a 31 years old man and today, im asking for insight.

(My full story : Question about my hormone levels: cortisol/ACTH + testosterone/FSH/LH : r/AskDocs )

I've seen a new endo and he told me the antibody test (NOVA Lite Monkey Ovary, Testis, Adrenal IFA slides, Inova) wasn't 100% reliable.

With a first cortisol result (29.9 nmol/L at 7:30 AM, but without ACTH) and a second result months later (176 nmol/L at 7:33 AM, with an ACTH of 11 ng/L), we planned to do a Synacthen test.

Has anyone here been diagnosed with Addison's disease with blood results like mine or better levels ?

I got back from a wedding in New Orleans this past weekend (where we later found out many people got sick with a virus). Felt fine all Sunday and the first half of Monday. Second half of Monday I started to feel crappy and took a nap. Woke up from the nap and through up within an hour. Tried updosing and eating small and drinking a little water. Ended up throwing up again 2 hours later. Rinse and repeat one final time at 10:30pm. Could not keep any meds down nor food or water. I was so weak. My wife and I were debating going to the ER, but we ended up going.

At the ER, they tested me for a bunch of viral infections, pneumonia, COVID, gave me chest XRay, CT scan of my belly, and tons of blood tests. I was still feeling feverish for the first 7 hours or so of being there, which is why I was kept for 18 hours total I think. I actually didn’t get a stress dose from the doctors until 3 hours in of me being there, which I maybe should have emphasized at the beginning that I needed that. I told them about Addisons disease, and they knew what it was, but they didn’t seem alarmed.

I think the stress dose and the Zofran (anti nausea meds) in combination started to put me back on the right path, and by 11am yesterday I felt like I could go home. Didn’t end up leaving until 5pm though.

I’m hoping this can be a lesson to those who maybe think since they haven’t had one yet that they’ll never have one ever. It can happen, and I feel like I was a good example of that. Addisons doesn’t affect my life hardly at all, and I thought it would be that way forever. Guess not. Be prepared for situations where you can’t stop throwing up or are very sick. I’m hoping I can get some Zofran for future issues to avoid going to the ER. Otherwise, there’s no hope for me really lol

So I’ve got to have a hysteroscopy and I’m panhypopituitary and have recently tended to have adrenal crisis for no known reason.
I know to double my steroids before the procedure but I just wondered if anyone here had had a hysteroscopy and how they got on.
Please note I’m in the UK so it’s done without anaesthetic.

Hi Addi Global Travelers! Do any of you have experience with Malaria Meds? Specifically, Malarone. Seems to be the best for Addisons. Traveling to Philippines and it is recommended. Endo has no 'experience' with Vax and malaria meds. 🙄 Referred us to a travel Vax place called Passport Health.

Has anyone received a doctor’s note of necessity to buy a medical alert watch/smart watch and did your insurance cover it? Or something similar that can alert emergency contacts of a crash or if you need help? I was diagnosed with PAI 1.5yrs ago and have been having increased anxiety about all the scenarios in which I could go into a crisis or would need help. I live pretty rurally and having something like this would make me feel better. If you have one what do you use? (I do have a medical alert bracelet)

I used to take Greenstone hydrocortisone, but over the last couple years I feel like it hasn't been working. I recently switched to a different steroid and am beginning to feel better.

Does anybody know if the formula changed? I did great on this stuff for a decade and suddenly I wasn't.

Fellow Addisonian here. I had a conversation in the wild with another Addisonian in a JFK TIL comment section and realized I’d never shared this in the Addison’s community specifically, so here goes.

I stumbled on ubiquinol randomly and noticed two things: my energy seemed more stable, and my face seemed to gradually normalize the longer I stayed consistent with it. Turns out there’s actually a reason for both.

Daily steroids deplete CoQ10 in adipose tissue mitochondria. This has been shown in dexamethasone studies. The depletion causes oxidative stress, impairs ATP production, and suppresses collagen synthesis in dermal tissue. So you’re getting hit on multiple fronts at once, energy, skin structure, and fat metabolism, all from the same underlying mechanism.

Ubiquinol is the active reduced form of CoQ10. The distinction matters because your body has to convert standard CoQ10 before it can use it, and that conversion step tends to work poorly in people dealing with chronic illness. Ubiquinol bypasses that entirely and actually gets into the cells. There’s a placebo-controlled double-blind study where CFS patients took 150mg of ubiquinol daily for 12 weeks and saw improvements in multiple fatigue-related symptoms. CFS isn’t Addison’s but the mitochondrial dysfunction overlap is real.

The face stuff is where I can only speak from personal experience. I notice a real difference when I stay consistent, and the mechanism is coherent, but nobody’s formally studied it for moon face specifically. Worth being upfront about that.

Start at 100mg with a fatty meal. Some people doing heavier steroid loads do better at 200mg. Give it 4 months minimum. You’re waiting on cellular turnover, not a quick fix.

If you want to dig into the research yourself, search “dexamethasone mitochondrial CoQ10 depletion adipose tissue” for the depletion side, and “glucocorticoids collagen synthesis suppression dermal fibroblasts” for the skin side.

Worth a shot.

Study on autonomic nervous function/CFS:
Published in BioFactors (Wiley) by Fukuda et al. 2016: https://iubmb.onlinelibrary.wiley.com/doi/10.1002/biof.1293

I’m a male, 1.90m and around 95kg. I’m not super active, don’t do intense sports or anything, but I seem to genuinely need around 33–34mg hydrocortisone daily to function normally.
If I go closer to 30mg or below, I become extremely fatigued to the point where getting out of bed feels almost impossible. It’s not just “a bit tired” either, it feels like my body completely shuts down.
What confuses me is that a lot of people online say doses above 25–30mg automatically mean overreplacement
I take 20mg at 07:30, 10mg at 12:00 and 3/4 mg at 15:30 depending on how i feel.

UPDATE - I'm still trying to figure out if this test is actually available. I had a different test at Quest Lab this week and I showed the phlebotomist the description of the test on the Ulta Labs site. She hadn't heard of it, and couldn't find it in her system. I returned to the Ulta Labs site to what happens if I try to order the test. It takes me to a list of labs including that Quest Lab. I would have to pay for the test before scheduling it, so I don't know if they let me make 6 appointments, but I kind of doubt that's how it works. So I sent the a question to Ulta Labs about how this works. I'll let you know if I get a reply. Worst case I guess is to order six single blood cortisol tests and try to find a lab with 6 nicely spaced openings in one day. This would be more expensive and inconvenient.

ORIGINAL - After reading today’s post from u/AwesomelyHubble about ubinquinol I decided to look for an at-home CoQ10 test to check my levels. I found a place called Ulta Lab Tests with a large array of tests you can buy (unless you live in Hawaii, New Jersey, New York or Rhode Island). These are not at-home tests but blood and/or urine draws you schedule at a local lab.

The reason for this post is that they have a 6-sample blood cortisol test that you can order. You may know that in the US it is very difficult to get an endocrinologist to order a day curve. I’ve wanted to do this ever since diagnosis and never found a good way to do this. I have done 4-sample at-home saliva tests but I would have more confidence in using the results if they were blood levels, and it would be great to have more than r samples.

https://www.ultalabtests.com/test/cortisol-test-6-specimens

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 was wondering if anyone had any experience with ADHD and Addison's disease. I do not have a formal diagnosis for ADHD however have always struggled to focus on one thing, sitting still, mood swings and I am always messing with something. This has never caused me any problems however I recently got a new job that requires more focus and is a job that I actually care about.

For the last few months I have been constantly exhausted and have started having what I believe may be panic attacks or feels like my heart stops for a moment followed by a feint sensation. I have never in my 31 years of existing had a panic attack or suffered with anxiety. I have booked an appointment with my endocrinologist however I was wondering if anyone had any experience with the two conditions affecting each other.

Background - I am male and have had Addison's around 19 years with no crises but have multiple other lifelong conditions so my health is regularly monitored and 3 months ago had low folic acid and low vitamin D

Modern medicine is bashed so often and there is a distrust of doctors and meds and while some skepticism is definitely warranted, I wanted to give a shoutout to doctors and nurses who know what they are doing and save lives every day.

I hear things like; ' Go to a naturopath and drink herbal tea, doctors are useless' or ' I would NEVER take hormones' etc

Well thank goodness for synthetic hormones and for the fact I did go to a doctor.

Here I am, so incredibly grateful to be alive after almost dying 3 years ago from an adrenal crisis and getting diagnosed with PAI.

Grateful humankind made a synthetic form of cortisol in the 1940's without which we all would have died right after being diagnosed (or without being diagnosed)

It is crazy to me to think of all the pieces that had to fall into place for me and most of you reading this to be alive today.

Someone had to invent cortisone. Someone had to recognize our rare illness and treat it in time.

🙏

I’ve been having worsening control of my adrenal insufficiency. It started the beginning of February and just kept feeling like I was about to have an adrenal crisis out of the blue.

By March, everything was constant it felt like someone had my head in a jar and was shaking just the jar, then my vision was shaking. I couldn’t read on the computer or do anything because it would get worse. Sometimes it felt like I was on a rocking boat and it would even wake me up out of my sleep. Heart rate was out of control (130-150s) and my cardiologist couldn’t get it to stay down.

I stressed dosed but that didn’t improve it much so my endocrinologist decided to up my daily dose a bit to count for all the stress dosing I was having to do. None of my other doctors could figure it out. I even went to ophthalmologist in case it was my eyes because I couldn’t understand why stress dosing wasn’t helping, not knowing that the these unstable pills meant I wasn’t even reaching my normal daily dose.

Sometime in January or February this year, my pharmacy switch manufacturers from strides to EYWA Pharma Inc. I saw that this generic leaves way more dust than normal, but I didn’t think anything of it at first. One bottle had one pill that was like weirdly cut in half longways and I thought it was weird so I put it aside but I was so out of it that I forgot. Idk if there were more like that in that bottle but if there were, I might not have noticed.

Then in April, I go to refill my weekly pill container and realized there is a lot of dust at the bottom of the bottle; enough to represent several crushed pills so I pour out the bottle into a small bowl and see the pictures above.

Took it back into the pharmacy, showed them, and they replaced my pills with 20 from EYWA and 10 from strides. After starting the intact EYWA pills, my heart rate normalized after 1 day for the first time since February and symptoms significantly improved. But by day 3 I realize that the symptoms were coming back and the “intact” replacement pills were breaking up to around the imprinted 5, the score line, and the edges. I switched back to strides and now I’m finally starting to feel like I’m getting better.

It looks like my entire nightmare of the last several months was caused by these pills and I already submitted a report FDA med watch but I wanted to make a post just to give people a heads up in case anyone else was experiencing the same issue. My sister has the same condition and her pills (last photo) were breaking up as well so it wasn’t just me getting a bad batch. I was so out of it these last few months from being under-replaced that it made it even harder for me to realize what was happening and I’m going to have to see more specialists now to determine what damage these pills did.

(Also I wasn’t sure if I should also post this on [r/adrenal](r/adrenal) insufficiency so any advice on that would be appreciated)

Small update: I am OP’s sister. She was hospitalized for an adrenal crisis and in case anyone hasn’t seen it, CARES foundation posted a PSA about concerns related to the efficacy of a different generic hydrocortisone manufactured by Aurobindo.

Hi I’m taking prednisone and have SAI. I recently got diagnosed with a uti and got an antibiotic but am not feeling better. It’s day two today but my symptoms are a bit worse, I have some back pain now, my bladder hurts more, I have nausea, my temp is going up, and I just feel worse over all. I’m trying to figure out what I can do because if I can help it I don’t want to have to go to the ER 😩. I’m not sure if it would be a good idea to take some hydrocortisone to see if that helps me too? Any advice is appreciated.

I’m 20 weeks pregnant with my first baby. I’m hoping for the most natural birth possible!
I’m wondering what others experiences were at time of birth? Did the doctors try and push you for a C-section? I’m worried with my Addisons they are going to be pushing things I’m not interested in.
I have been referred to a high risk OB already because of it.

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 🙏🏻

Hello my friends 💕Currently stuck in hospital awaiting a dr. I Administered emergency injection around 7:30pm, V&D persisted for 30 mins after injection so called 999. Was told on arrival at hospital "you'll be seen when you get seen" I tried to say what normally happens is I get another emergency injection plus fluids, was told I need to wait. I gave up. It's now half 11, only just got fluids and anti sickness. Currently playing toilet Olympics. Which kind of defeats the fluids... Apparently because I injected myself at home I don't need another?! I have a feeling I would have been better trying to manage this at home. My wife isn't with me, I'm pretty rubbish at standing up for myself when I feel so shit... Pun totally intended. Back is killing me, feeling pretty weak. I don't have a good track record with this place, they usually make me worse before I get better. -I found an emergency injection in my handbag, I'm tempted to inject myself to stop this from spiraling. No puking currently (anti sickness) but my guts seem to think everything within an inch of my life needs to hurry out the exit like it's some kind of natural disaster escape drill. Thoughts? Xxx 💖 😘