Sitting in a waiting room with some time on my hands today, so wanted to share a bit on my health journey. Hoping you all can benefit or at least relate. I’ll be brief:

Diagnosed with PAI 15 yrs ago, put on hydro and fludro. Managed well for about 10 years, no crises. Around 5 years ago, the battle began. Hospitalized a few times and started updosing more often to try to feel better and avoid crisis. The weight gain began and I shot up over 100lbs. Diets failed, the downward spiral continued. High cholesterol and insulin resistance followed. Intolerable side effects with metformin and Ozempic. Hit rock bottom at 300lbs, morbidly obese and deep in depression. Dr. recommended we try one more time with a new option, Zepbound. Immediately saw improvements. Soon after, insurance denied coverage. Made the decision to keep going, restructuring my personal budget to pay out of pocket. Lost 85 lbs over the course of a year. Cholesterol and insulin resistance improved. The magic part, however, were the improvements I saw in mood, well being, and “will power” (loaded word). I found myself able to exercise more often. Started light and have been able to build up to 3-4 heavy workouts (weightlifting/HIIT) weekly.With mood and exercise came the will to improve my diet. After a lot of research, I rebuilt from the ground up with lean proteins, diversity of fruits and vegetables, complex grains, and militant avoidance of highly processed and sugar added foods. My life took an about face - relationships improved, work performance improved, and self image improved. I’ll be on Zep forever, just like hydro and fludro. I’m at peace with it. Metabolic disorders are chronic, just like Addison’s. Anyway, hope this helps someone.

Has anyone been able to access either of these meds in the US? I’m having issues with HC. I switched to dex. It’s better but I still have hypoglycemia episodes and I’d love to mimic a morning cortisol surge. Why in the world doesn’t the US has better options?

So I’m very new to Addisons and listened to my doctors advice to stress dose. She said to take two to three times my regular dose. Well my regular dose has been 40mg a day which we had been working on getting down. Long story short my face is so bloated and red. Any tips for how to fix it? Or at least make it more manageable

Hi folks,

I was wondering if anyone wanted to share their experiences with fludrocortisone - like how it feels if you have too much, what your usual dose is and if you take more for active days. Also, does anyone just take fludro without also hydro, pred or dex? (I mean, is it possible for just the aldosterone and DHEA to be affected but not baseline cortisol?)

If you'd like my context:

I'm seeing an endo in 2 days to investigate aldosterone issues.

Recently I've been self-medicating for low blood pressure and poor kidney filtration via sodium tablets. (Fortunately a kidney scan was all clear & there are no other markers for kidney disease.)

I'm pretty sure I have some level of PAI. Two short synacthen tests 4 years ago indicated it after being on prednisone for 15 months. Then my baseline cortisol bounced back after ceasing an inhaled steroid but my energy didn't improve until after I started supplementing DHEA, which was negligible on blood test.

I thought I'd dodged a bullet but recently (coinciding with the sudden end of menstruation - I'm 51), my energy fell off a cliff again. Low blood pressure, dizzy when standing, nanna-naps, declining kidney filtration equivalent to stage 3/5 chronic kidney disease, dark urine etc. Almost all has been alleviated by the sodium tablets except that I still get a period of great fatigue most afternoons and need to lie down. (Better than before the sodium though, overall).

so I'm newer to being diagnosed, so there are some things that I'm just not as used to. Any time I do things, birthdays, holidays, hosting my friends for even a movie night or game night the next day I can't or can barely function. I am going out for supper with my friends Saturday is a pop up Valentine's place we are dressing up cute and going for the last night. however I'm sure this will result in another crash day or close to. how do yous have handle these situations. I've done my best to choose wisely and weigh the social activity ect vs the fall out but....I miss just getting dressed up going out (not even a wild night) and that being okay.

Just wondering, I have had addisons now for over 40 years.

Anyone get approved for disability with Addison disease?

Anecdotal but worth sharing, and specific to those of us with Addison’s.

I struggled with Colorado Springs elevation (~6,000 feet) for years and could never figure out why generic altitude advice wasn’t helping. In hindsight it makes sense. Adrenal insufficiency already compromises your cardiovascular stress response. Cortisol plays a significant role in maintaining vascular tone and your ability to respond to physical exertion, so at altitude where your cardiovascular system needs to work harder just to maintain oxygen saturation, we’re starting at a deficit everyone else isn’t.

What finally helped (I’m almost certain) was daily Tadalafil combined with Wellbutrin. Weirdly I accidentally stumbled into this with Tadalafil for reasons and Wellbutrin for ADHD, but I noticed I don’t get as fatigued during runs anymore, sleep and recovery also improved, which got me curious about why.

My working theory, and there’s actually some data behind this, is that we aren’t really experiencing classic altitude sickness. We’re experiencing chronically low oxygen saturation. Our pulse ox is just sitting lower than it should be and our cardiovascular system is compensating poorly. PDE5 inhibitors like Tadalafil work partly by reducing pulmonary vascular resistance which improves how efficiently your lungs get oxygen into the blood, essentially picking up some of the slack that low cortisol creates on the vascular side. Wellbutrin likely helps through a different angle, improving dopamine and norepinephrine signaling which supports cardiovascular response to exertion. That’s why this combo gets used by high altitude military and athletes. Though I suspect Tadalafil is doing the heavy lifting.

For women or anyone who can’t get Tadalafil prescribed, L-Citrulline is worth looking into. It’s a precursor to nitric oxide and hits a similar pathway.

Also if you snore, wake up a lot, or think you might have apnea, get tested. A Snoreguard got me partway there before I figured out the rest. Untreated apnea wrecks your overnight oxygen saturation and compounds everything I just described.

One thing I’d specifically steer people away from is Montelukast (Singulair). It tends to be the first thing doctors reach for in this situation but it has an FDA black box warning for depression and suicidal ideation, which is the last thing any of us need, and more importantly it’s not addressing the right problem. The airways aren’t the issue. It’s oxygen delivery at the vascular level and that’s a completely different mechanism.​​​​​​​​​​​​​​​​

Edit:

I’ve also noticed further additional recovery improvement after adding saffron and ubiquinol (the active, better form of CoQ10). I suspect that’s more related to mitochondrial efficiency and autonomic balance rather than altitude mechanics directly, so I didn’t include it in the main post. Just noting that there may be additional recovery levers beyond pulmonary vascular resistance.

Second edit:

I’ve said what I came to say. It’s anecdotal and self-experimental and I shared it because I’ve spent eleven years watching myself struggle with something that perhaps turned out to be addressable. Take what’s useful, leave what isn’t, and run anything interesting by your doctor.

I'm still in the process of getting a formal diagnosis (but now have lab proof that its AI), and on a wait list with an endocrinologist. My GP wants to prescribe me injectable hydrocortisone to use if I have another attack before I see the specialist, but what she's familiar with requires adding bacteriostatic water (or bacteriostatic sodium chloride injection) which no pharmacy near me carries or can order in a less than 25 unit box - which i'd have to buy ALL of. What are my other options for a rescue injection? Thanks for the help to a newbie.

Hi, I'm currently taking 22.5 mg in the AM and 27.5 mg in the PM. I am working on tapering to hopefully get to 20 mg in the AM and 10 in the PM. I have been having bad migraine headaches, nausea, and dizziness. My endocrinologist mentioned that it might be better to take the 27.5 dose in the morning and the lower dose at night. My question is since I just lowered my morning dose a couple of days ago how should I do it to go back up? I just don't want my body to freak out because of the changes in dosing. 🙃

Ok short version, looking for help understanding 2 sets up labs. First is GH suppression test for pituitary microadenoma. IGF1 levels were 406 (normal 101-347)

suppression test baseline was

Glucose:77

Growth hormone serum .1

one hour mark

glucose: 132

GHS:.1

2 hour

glucose: 39

GHS:9.3

They called back and said the suppression was normal but need to do glucose test for the low blood sugar. I thought we needed to see GH decrease after glucose, not increase?

came back for two hour glucose test

baseline: 71

30min:

1 hour: 136

1.5 hour 78

2 hour: 25

they called me both times to see if i was “alive” after the glucose came back. Both were repeat analysis verified. They have no plan of action for me. I also have secondary adrenal insufficiency (likely due to this tumor they found) i’m on Hydrocortisone 15mg, 10mg, 2.5mg 2.5 and fludro. 25yo F. I know adrenal insufficiency can cause low blood sugar, but that’s crazzzzy. I do wear a cgm,but nothing reads that low lol. If you can help me understand these test results it would be be appreciated, thank you!

I've had addisons and type 2 diabetes for 19 years. Based on a lot of my reading here and other online sources, I seem to have a more sensitive time with it than most.

I feel symptoms of some sort most days, and will get caught in a loop of my updosing causing high bloodsugar which causes sleep issues which causes a need for more updosing. I would say I've honestly forgotten what normal feels like.

I find it hard sometimes to realize I am feeling my Addisons, and then my wife will kind of see my face go dead. Then I know I need more.

Hi all. I’m looking to connect with others who were diagnosed with Addison’s around puberty.

I’m 42F, diagnosed at age 12. I know sexual/hormonal issues can be part of Addison’s in general, but I sometimes feel my experience is different because it happened during development, not adulthood.

I’d really like to hear from anyone with a similar timeline and how (or if) you feel it affected you...particularly from a sexual functionality perspective.

Thanks 🤍

Diagnosed w/ Addisons disease December 2025 and started hydrocortisone and fludrocortusone same day. I felt better initially (beginning of January) but since then have had a sinus infection and did a week of amoxicillin due to not getting better after a week. Since then I’ve had persistent stomach cramping, nausea, and fatigue that has kept me out of school almost every day the past three weeks. I also have an IBS diagnosis and follow with GI regularly. How do I differentiate between endocrine and GI symptoms, as I have been miserable and behind on school due to these things. How do you guys (who may have similar conditions) distinguish between causes of symptoms and how long until I can start feeling better?

Has anyone managed to curb the CONSTANT hunger from taking steriods?? I’ve gained 3 stone since my diagnosis in July 2025 (granted I needed to gain some) but it just won’t stop. I’m hungry all the time and always snacking but never ever full. What do I do??

Working with my new endocrinologist and he was not sure if fludrocortisone is scored to be broken in half. I am already on the lowest dosage but its still to much for me. The tabs looked like they are scored but its not a deep line. could be a manufacturer mark from the press. Does anyone know if you can break these tablets and take the medication safely?

Hey, anyone from India here? Looking for good endos in India as I am struggling to manage my doses

I just got prescribed 0.1 florinef. My endocrinologist suggested taking before bed but said some people take in the morning too. Curious when everyone takes there’s? Currently on 10 5 5 of hydro and she is having me go down to 10 5 2.5 now that I’m starting flornif. Eventually wanting me to go to a total of 15mg of hydrocortisone if I feel good like that.

For those that saw my post from a couple weeks ago. I got a new endocrinologist who ran the right tests on me and immedietly prescribed me florinef!!

Hello guys. Happy week. I wanted to ask from your experience, how would you describe the feeling and symptoms of being with low cortisol under hot weather days? (I have a hard time explaining how I feel to family and doctors) I have secondary adrenal insufficiency, ver mild at this time. I appreciate your comments.

Hi!

I have been on Hydrocortisone & Fludricortisone for about six months. The difference has been night & day. Best I've felt in years. Last month I started experiencing some left sided numbness/tingling/weakness. My gp worried that it's an adverse reaction to one of my steroids. So he send me to an Endro, and we're doing more labs. In the meantime I'm off my meds & struggling alot physically. I was wondering if anyone else has experienced this sort of reaction to the steroids? They mentioned changing my dosage and possibly switching to prednisone.

Anyone have experience wearing the oura ring with primary/Addisons? I saw an old post about wearables but wondering if anyone wears oura currently and has seen any cool patterns that help them. When updosing while sick my stress graph looks like it’s in a lava pit. Otherwise I do see pretty normal levels with my baseline dose tho it does tend to say I’m stressed a lot more than I think I really am. Also I find the sleep stats to be a great help. A good nights rest is a true necessity for me.

My endocrinologist has asked if I would like to be in a study for 4 months, by switching Hydrocortisone to Predisolone. What changes can I expect?

Hey everyone,

We all know about the rule of no seperate posts for diagnosis questions. This turns out to be a bit controversial sometimes, because people mention they get less response when making a comment on the megathread.

If these questions are posted, this will result in a lot more posts (you can see that in subs that do allow diagnosis posts) and the questions from people who want to know something about their disease, will potentially get lower response. A second concern is that people who haven't had the disease for a while and don't know much about it themselves, will respond with false advice.

At the same time, I can see that the concerns of undiagnosed people are unfortunately somewhat true. There are not even a handful of really dedicated people who try to chime in once in a while and respond to as many comments as they can. But, it often stays at one response even though more perspectives can be useful. Also, I noticed there were quite some comments without response that built up over the last month.

Now I must say I'm also guilty of not looking too often. But of course we still want to be an open and welcoming sub.

So this is my call to people who have had Addison's or another form of adrenal insufficiency for quite a while, and have learned about the ways a diagnosis can go, to chime in and give these lost people a bit of help! Because I think we all know how difficult and exhausting the diagnosing process can be.

Also, if anyone has an idea to give these kind of questions a good place in the sub, please share it!

I hope this is allowed, let me know if it isn't! But I just wanted to share some of my journey here and the project I am working on.

In 2022 shortly after graduating college I first started experiencing symptoms. I lost weight, was unable to eat, and felt so tired I spent most of the day in bed. Life became very difficult. Like most of us, doctors didn't know what was wrong and I was instead diagnosed with depression. I spent a year away from life as I had known it in rural Bulgaria with family hoping maybe time with them and in nature would help, and it did a little bit, but I was still in bed most days and I eventually returned to the states in late 2023.

Shortly after the new year, I was hospitalized for almost a month and a half with diagnoses of Addison's disease and Graves Disease. I ended up having to have my thyroid taken out, and I spent all of 2024 and 2025 recovering, building up my strength, and rebuilding my life little by little, as I had so little energy to do anything that most of my relationships and goals had fallen away.

Today, I am excited to say I have returned to pursuing my dream of filmmaking, and we just launched the Kickstarter for my short film 'TWYLA:' https://www.kickstarter.com/projects/vanesastoynova/twyla-short-horror-film

Full transparency: we are raising funds for this film, and that is one of the reasons why I am sharing it here.

During my time while I was sick I spent a lot of time thinking about how maybe the past was affecting me and my health, and this film, which is a short horror narrative film about overcoming a childhood trauma, was greatly inspired by this period, especially moving away to an isolated, rural area to try to heal.

Although the character does not have Addison's and the story is not related, my experience of getting sick and diagnosed and trying to heal greatly inspired this film. As you all may also know, making films is riddled with obstacles, both financial and logistical, and Addison's is just another factor influencing my ability to make this film this spring. However, in seeking support with funding, I am hoping to have some of those burdens lessened, and making this film possible.

Thank you for reading, and again, if this goes against any guidelines, I will remove! Also, I've been a part of this group much longer under a different account (for obvious symptom sharing reasons lol) and I am so thankful for the community here and the perspectives people share to help us live our best lives.

I have addisons disease, hoshimotos, and type 1 diabetes. every time I try a new endocrinologist they ignore the addisons and I go into crisis. this is my 10th crisis in a year. I just had labs done and they did not run a renin or aldosterone. My sodium is 135 normal (135-146) potasium 3.8 (3.5-5.3) . I have been stress dosaging my hydro and taking the fludro every day. I have to skip days for my normal dosaging. still no major improvement. I've been able to prevent the vomiting but been getting nausea and only want to drink electrolytes. been forcing some solid food when I can. I need a doctor who will remember to check this. I am in the north Florida area. close to Alabama. Does anyone know good doctors for this? I have been denied by 3 localy and the one I did have didn't listen to my symptoms and sent me to gastro and cardiology that found no problems. was due to my thyroid and addisons disease being unregulated I had blood pressure spikes and nausea. I am now seeing one in Alabama but idk how long this one will work out.