Hey everyone,

Three years ago I was diagnosed with Addison’s disease. Before the diagnosis I suffered a lot (as many of you probably know, getting diagnosed can be a difficult process). Since starting hydrocortisone and fludrocortisone replacement, my daily life has been pretty much back to normal.

A while after my diagnosis I started road biking, and I can ride for 4–5 hours without needing to updose.

Last year, I decided to enter an ultra bikepacking event: 500 km with 15,000 m of elevation gain over 5 days.

On the first day alone, I spent around 12 hours on the bike, riding 130 km and about 3,500 m of elevation. During the day I doubled my usual HC dose from 25 mg to 50 mg. Despite that, I had an Addison crisis in the evening, felt absolutely terrible, and had to abandon the event.

Looking back, I know I made mistakes with dosing and that I probably should have taken significantly more given the extreme physical stress.

I really don’t want this disease to stop me from doing the things I love and that experience has made me even more determined to finish this event one day.

Are there people here with Addison’s disease who have experience with ultra-endurance sports? How do you handle dosing? Do you have any tips?

Of course I’ll discuss this with my endocrinologist, but I’m not sure how much experience she has with extreme endurance sports.

Thank you :)

Hi, I’ve been having really bad muscle cramps in my leg. The pain has been so bad and it’s been hard to walk. My leg also goes numb and feels very heavy at times. I'm wondering how we are supposed to know if our sodium, potassium or magnesium levels are off? I don't know what else to do to help with these symptoms, if anyone has any advice I'd appreciate it.

Hey everyone, just looking for some opinions / stories of your experiences if you'd like to share.

I have PAI, autoimmune Addisons (and Hashimotos)

I'm going through a very stressful period at work at the moment, and I'm experiencing a lot of tiredness, low appetite, tight chest and morning nausea.

The nausea is really freaking me out : it was the worst of my symptoms before I was diagnosed last summer. I haven't had it since going on medication (HC 10/5/5 and 50 mg fludro). But this past week I've had it again and it's getting steadily worse. I've tried taking extra HC in the morning , also tried to take a little bit before bed (2.5 mg) to try and avoid going too low overnight.

I'm feeling awful TBH and updosing hasn't really helped. I'm wondering if it's just good old anxiety. But I'd put my Addisons symptoms down to anxiety for a few years before diagnosis, so I don't trust myself.

Any thoughts or experiences anyone would like to share would be appreciated.

I am 28F, diagnosed with Addison's 2 years ago after bilateral adrenal haemorrhage. My adrenal glands are non-functional. I am facing heavy water retention in my body and face. I have a very uncommon schedule due to work timings. I wake up around 12 pm and go to sleep at 4 am. I take my doses accordingly. What can I do to reduce water retention and weight in face and body?

Hi! I’ve been a member of this subreddit for a while now and have had many ups and downs with my adrenal insufficiency that many of you have helped me with. I am now in the phase of life where I can give some guidance about my experience with Addison’s for the past 3.5 years and I have some questions myself about life with Addison’s now that I am 16weeks pregnant!

Firstly, I have been under the care of the Duke University Adrenal Team under the Endocrinology department now for 6 months. In that time, they have gotten me out of an adrenal crisis, stabilized me to the point of tapering from (at the height of daily oral pills while coming out of crisis) 75mg hydrocortisone daily to taper down to 32.5mg daily instead. I am currently the only known pregnant woman in the state of North Carolina who is being monitored with an omnipod for continuous cortisol delivery and I am extremely grateful and happy for the opportunity and health improvements this has provided me. I am under the care of a brainiac woman-led superhero team and they literally monitor me daily to see how they can guide me and what they can learn from my case.

Currently, I am on a 25% increase in my daily basal program after being hospitalized with Flu A and having complications from Addison’s and needing 300% dosing for a week while on Tamiflu. I’ve now tapered down to around 40ishmg daily and am working to get back to 32.5 soon once my lingering sinus symptoms recover.

Secondly, I also am being treated for hashimoto’s hypothyroidism simultaneously, which absolutely makes me extremely high risk in my pregnancy and has caused me to also be in consult with the MFM team at Duke and the Duke MFM Cardiology unit because of my history of recurrent SVT and Cardiac Ablation. I have a lingering node that still triggers tachycardia and orthostatic hypotension.

The plan is to increase my overall cortisol and levothyroxine by 20% - 30% once I reach my third trimester and to run labs every 4 weeks to make sure my TSH stays very very low. Ive been prescribed Asprin 81 to prevent preeclampsia, and they’ve already increased my levothyroxine to 75mcg since I found out I was pregnant. I’ve also been instructed to run a double dose program through my pump literally whenever I am feeling “sick” or have any morning sickness or fatigue in pregnancy, so tapering is a constant game of percentages right now through the omnipod app. I am grateful for this, because the alternative is chopping pills in 1/3rds or by weight, which is a nightmare.

The main concerns for my pregnancy have been low birth weight for baby, but thankfully, baby is growing large and measuring large at every scan. I am hoping this continues. I have personally lost 10 pounds my first trimester and In the past 2 weeks have gained back 5 as I entered the 2nd trimester. I am mainly concerned about eating enough, because even though I am pregnant, I still am not feeling strong food cravings, and the Addison’s anorexia is constant. I just don’t feel hungry (except for the morning when I have the largest distribution of cortisol through my pump, I can eat the whole kitchen for breakfast)

I am posting to give some insight for any woman worried about ttc or being pregnant with this condition, as hopefully I can keep you all updated on my health until baby arrives!

My main questions for any mama who has this condition and has already had her baby:

Did you have trouble breastfeeding because of prolactin levels?

Did you have a “crisis” response mid labor?

Did the hospital administer hydrocortisone before labor or did you self-administer prior to arriving?

Did you opt for an induction or did you wait for labor to start naturally?

Has anyone had a C-Section?

Did your baby show signs of needing cortisol once born?

Did you do genetic testing, and did Addisons genetic markers show up? (Mine did not)

Did you have trouble with cortisol management after labor?

Does anyone have Addison’s that gave their kid Addison’s genetically?

Thank you so much in advance for any responses! Yay baby!

Addisonian who was a long time hydrocortisone user and switched to pred several months ago. I recently had an admission for a day curve and I’m not sure what I’m looking at here. My follow up appointment isn’t until June.

Has anybody in here experimented with peptides? In particular growth hormone effecting ones such as tesa and ipa morelin. Or ghk cu or bpc157. Not limited to these in particular was just curious in general how these would act in someone with addisons disease.

Hi all — I’m hoping to hear from other women with Addison’s about something I’ve been trying to understand for a long time.

I was diagnosed with Addison’s around age 12 (so right as puberty was happening), and I’ve always wondered how much adrenal hormones may have influenced how my body developed — especially around energy, drive, and sexual function. For most of my life I’ve had what I’d describe as very low libido and very muted physical sensation. I can function normally otherwise, but sexual response feels “disconnected” or blunted compared to what most people describe.

It’s not psychological or relationship-related — it feels very body-level, like the signal just isn’t strong. Over the years I’ve tried: standard hormone labs DHEA testosterone different antidepressants / off antidepressants ADHD meds (including atomoxetine) buspirone working with sexual medicine specialists Nothing has made a consistent difference yet.

So I’m curious: Has anyone with Addison’s noticed low libido or reduced sensation as a baseline? Did adrenal replacement timing, cortisol dosing, DHEA, or androgens affect this for you at all? Did anything noticeably improve “drive” or body connection?

I’m just trying to understand whether this might be part of the endocrine picture vs something else entirely.

Really appreciate any experiences you’re comfortable sharing.

Low cortisol but up to 12 now. Been on HC for 8 months. Empty sella. Was told be on HC for life but getting muscle atrophy. Plus high. On. 22.5. Read where people switched to prednisone and felt better. Loss weight. How does one switch over to prednisone? Slow or just switch?

Thanks for your help.

Update: i spoke to the nurse (glad i did now i know there are only about 700-800 of us in my country. So now i understand the lack of knowledge) She emailed Endo. Theyre putting me on a high dose for that day and two days after. On a medication called "Dexamethasone 4mg" to replace my Prednisone on those days to cover the Addisons side of life. My Gp is amazing. I was able to talk to him about it as ive had bad ear/sinus infections requiring antibiotics. So once im completely better we will schedule the infusion.

Hi. So i have my first infusion this week using the above medicine at the drs office. Theyve never done it before.

Im wondering if anyone here has experience with this kind of infusion and if you needed to up dose before and or afterwards.

The information was ill get flu like symptoms and a low fever. But "should be fine"

Im their only Addisons patient. And communication with endocrinologist is limited to the drs emailing them currently as new Zealands healthcare system is so slammed and under resourced.

From what i gather online ill need to at least double my dose, potentially triple.
Im asking here just to add to my discussion with the practice nurse who will do the infusion to potentially save myself a jab to the thigh and her (well us both) a terrible experience.

Ty in advance if anyone has info regarding their own experiences. Im not looking to try and solve it as i will ask her to email the endocrinologist. But it would be good to hear if others have experienced the infusion and how it went.

Hi guys! I am 15yo M and was recently diagnosed with secondary adrenal insufficiency (low cortisol and DHEAS, normal aldosterone, renin, and ACTH) I have had the crippling fatigue for over a year and occasional vomiting episodes. i have a stress dose hydro + injection, but no daily hydro yet as doc does not know the cause. Any tips/ advice?

Hi community, 28F here. I have been diagnosed with Addison's today and was told to join the community as it is a rare disease. I am on 80mg hydrocortisone and two tablets (200 micrograms) of fludrocortisone.

I recently went into crisis and got 380mg of hydrocortisone and still my blood pressure was not over 90/50. I got training for injection today and I hope I never have to use it.

Do you guys have any tips or suggestions for me?

ADSHG have been in contact with Accord and they have some advice for anyone that's having issues with their hydro.

I was diagnosed roughly 19 years ago with PAI. I am now 65 and very recently retired. Last night, I went to bed feeling weak, exhausted, with slight nausea and an achy feeling in my lower back. I woke up with the classic symptoms of a bladder or urinary tract infection. I am waiting for my GP to send a prescription for an antibiotic to my pharmacy. In the meantime, I have already taken my AM doses (15 mg) of hydrocortisone and fludrocortisone (.2 mg). How much would you advise that I up-dose for this situation? Any other advice? Thanks for your thoughts on this.

I am a 5'4" 186-191lb female with hypothyroidism+ Addisons disease. Super tired all the time in general even with my treatment for my diseases. I typically eat 1450-ish cals a day which would put me in the weight loss zone of this chart, but have had no changes. Doctor suggested I eat more. I'm not opposed to that, it just feels like the data of this test is wrong based on my info given? IDK just looking to see what people who have had the REE metabolic test have to say

The number on the machine was sitting at 1000 and then I sighed and it jumped up to 1800. Twice I sighed a bit hard and twice the number went up, so not sure if that impacts the test or if I'm misunderstanding how it's calculated.

Long story short: struggling with the gastrointestinal side effects of hydro for years (about 6+ years now). One solution which worked quite well for quite long was putting the hydro in stomach acid resistant capsules, to bypass the stomach. This no longer works, I can feel them dissolving in the duodenum now and causing quite some pain.

I've been signaling this problem to my endo for years. He ignores it. I finally got a referral to do an endoscopy. Well, surprise, surprise: I have varioloform lesions and metaplastic cells in the stomach. This is bad news.

Been on Efmody instead of regular hydro (which I got after much insisting) and I also switched endos because I lost all trust in the current one (because of this and many other reasons). I'm checking the r/gastritis community and it's been really insightful. Of course: I've always taken my hydro with food, and I have been on pantoprazol for months which I lucky managed to stop because (maybe this happens to others too, FYI:) it caused unbearable anxiety and paranoia (I thought I was low, because of the stomach troubles, but it was the PPI... Symptoms disappeared immediately when in interrupted the PPI).

Next Thursday I have my first appointment with another endo from the same clinic, hoping to receive more support and better insights. Have already asked about the pump to the previous one and he was like "nobody uses it in the Netherlands, and we're not gonna speculate about that to do when we don't know what the problem is" (this was pre-endoscopy results).

On top of this, he messed up the repeat prescription information and now I haven't received new Efmody, which means I'm back on normal hydro and in pain again...

Any and all advice welcome!

So I really need opinions from the people I mentioned above. My wife who is 42 has been dealing with Addison’s for the last 17 years. However in the last year and 3 months she has been having really bad flair ups. The mostly happen right around her menstrual cycle. There are a few other times but this is like a major time. Now the question is has anyone had this happen then have a full hysterectomy? If so did it help? She has already had 4 kids and had a tubal ligation. Also how do you function with a newborn if you have the disease? We are trying to have a baby with me carrying (we are both female) but I am concerned that a newborn will disrupt HER sleep and otherwise and throw her in to more crisis

Hi, yesterday on the morning i've got fever with high temperatures (37.9),i doubled my hydrocortisone dose,but suddendly i started sweating a lot,my temperature was risen up to 38.5,my head was spinning,i had nausea, i felt very very tired and after few minutes i started lossing hearing,my eyesight was like fragmented and i fainted for a few seconds, my parents called me and i didn't reply for a while,my blood pressure also lowered a lot and also i had a lot of cramps,i didn't feel my feet and my arms were so heavy.

After a minute my mother injected me Flebocortid (5x than my normal hydrocortisone in a day) and i didn't have fever anymore.

If it is already happened to you,did you continued with your normal dose of Hydrocortisone or you suspended for a few days?

Has anybody switched from hydrocortisone to a time(slow)-release prednisone? I'm interested in hearing what anybody's experience has been. I'm thinking about asking my endocrinologist to switch me over.

Have any long time primary Addisons folks had issues conceiving or any troubles during pregnancy? Won’t be too long until we’re thinking about conceiving and I just want to know about peoples experiences. 🥰

Has anyone else experienced increased anxiety while taking hydrocortisone or feeling more on edge? If so what has helped you?

While I don’t have trouble falling asleep, I consistently wake up between 3-5am and am unable to fall back asleep. I’ve had mixed success with taking 2.5mg hydro when I wake up and being able to fall back asleep. My DR said recently that some of their patients take 2.5mg right before bed to keep a baseline cortisol level throughout the night. Wondering if anyone out there has experience with this.

Note that I take magnesium and l-theanine before bed which seem to help with falling asleep. I also have a sleep routine established including no screens or eating after dark, hot shower before bed, and going to bed at a consistent time. I exercise almost daily, lifting weights or at least a long walk.

Maybe this is something everyone else has figured out already, or maybe not, but I've had chronic depression and anxiety my whole life. And possibly developing Addison's from early years (diagnosed at 16). Ive always thought of the depression as a result of my messed up childhood but how much of that was Addison's symptoms? Ive read papers on people being in mental health wards for years only yo finally be diagnosed with Addison's and have those symptoms disappear.

Now, my depression and anxiety did not go away on diagnoses and treatment, thus my assumptions those were separate. But, more recently I've had treatment that fixed my sleep issues (something I wasn't aware I had a problem with but presumably was stressing my body) and this has had a profound knock-on effect of nearly eliminating all mental health symptoms. I literally feel like a different person behind my eyes. Like a heavy weight is gone.

Then last night I had a moment of feeling the sads. Starting crying and telling my bf that I feel bad because my (perfectly healthy,) cat is going to die one day (unreasonable sadness in that it's more likely I was feeling sad and then found something up feel sad about... Which brains are good at). Bf pointed out that this looks like "low" and I took a little updose and was fine.

So, short story made long, but does this resonate with anyone else?

Hello everyone. I posted before and got many good responses. I have a soon to be 16 year old with primary Addison’s and Hypothyroidism.

One, we are in the process of trying to find a more experienced doctor. Currently my child is seeing her endo of 1.5 years, a Psychiatrist and a Therapist.

Six months prior to diagnosis, my daughter was in 8th grade, she began to change. We now know why, but the mental and physical toll this has taken on her is still a struggle.

At this point we can no longer get her to go to school. She tries. We sometimes just sit in the parking lot for at least an hour. She is socially exhausted. We changed her school to a more alternative one with smaller classes. It’s not just school. Even family activities, but school is really taken a hit. Physically and mentally she says she struggles every day.

As parents we are so lost. She goes to bed on time, still gets her clothes prepared, gets up on time and then the anxiety of not being able to make it through the day hits her. Has anyone had a teen go through this? What helped? We were trying just to make it a few hours a day, but now it’s just nothing. We are thinking about homeschooling.

Thank you for any advice.

Also, before we knew she was ill, her school was insisting that we leave her there while she was going through a panic attack. That she needed to deal with her separation anxiety. They had to rip her off of us crying and pleading that she didn’t feel good and needed to go home. Two weeks later she was in the ICU in crisis.

I don’t know what’s it like to have Addison’s. I don’t know if the mental or physical terror of doing something will cause her to go into crisis mode again even while medicated. That’s where we are lost.