r/AddisonsDisease

I've never had this response with low cortisol so I had to ask if anyone has this occur

The last few hours, if I stand up, my blood pressure and bpm drop (one reading was 84/47, 52 bpm) but if I lay down, it raises significantly (last reading was 192/142, 129bpm)

Is this an experience anyone has ever had?

Knew it would come. Been on famoditine since last year. On 18 mg of HC. Was recommended to take succlafate called the glass coating for gut. Can’t take a ppi had cdiff years ago.

Can’t get ahold of Endo, pcp in Europe and no one to cover. I have it, 2 yrs old. Does not ruin flora just take hour before your med. Probably end up on prednisone. Had a Cleveland clinic meeting for opinion. That was interesting.told totally different things.

Cortisol was 2.3 on Sunday, urine glucose has been 500 or higher, blood glucose always around 300, have lost 80 pounds since June 7, have eaten four times in this time so these numbers are fasting. I was admitted to the hospital, they discharged me and told me to have my gp decide any steroids to treat. I do not have any to take, they are still working out my diagnosis.

GP cannot do that. Endocrinologist said they could not see me until evaluation in the ER again. Cortisol was 1.6 yesterday but the ER sent me home and told me not to come back, that they were satisfied it's not a crisis because my sodium and glucose are normal, but I thought those glucose numbers were high? Especially for fasting but still taking my diabetes meds? Said call my endocrinologist. I'm worse today but they are closed for the holiday tomorrow. After-hours will not take the call, they said because I was discharged yesterday it doesn't count as an emergency.

Urgent care will not see me, they said it's not suitable. Virtual care said the same, to call after-hours, but again they are refusing to take the call.

I have no idea what to do at this point. That's all the treatment options I know of.

I started my meds a day ago
But today I’m starting to have panic attacks
I know it’s just slight increase on how I was feeling and then it dipped again because I’ve just had a massive panic attack
Should I be taking more?
Or should I wait and then take more?
I’m so confused

Any help is greatly appreciated

One i say i have freaky legs and freaky shoulders i do. My shoulders luckily are the least vascular of the top sites and unfortunately my quads look like a spider web.

Anyway i cant wrap my head around the quad shot for emergency kits i think maybe i could do the shoulder one but the needle seems way too long surely i could use a insulin syringe instead for my shredded delt. Anyone at a lower body fat dealt with this im just terrified of hitting a vein if come to.

Hey, friends! I’ve found a new endocrinologist that specializes in adrenal issues and they have confirmed my suspicions that for the first year since diagnosis I have been heavily over replaced. They dramatically reduced my dosage and I feel great. My legs are no longer swollen, my puffy face is gone, I’m no longer hot and itchy. BUT. I gained a lot of weight and can’t seem to shake it. Has this happened to anyone else? Did you ever lose any of the weight? If so, how long did it take? I don’t need to go back to the way I was when diagnosed, but I’d like to be in that healthy in-between.

Seems like i was fine with warm days right up until we broke that 90° mark yesterday and then I started getting what I think are low cortisol stomach ache etc episodes. Like a flip got switched. It's kinda scary! It's very hot and miserable but I wasn't doing anything even mildly strenuous, I wasnt outside in the sun, I was sweaty but it didn't feel very physically stressful. All I did was leave my air conditioned room a couple times to do barely any basic house stuff. Like, loading dishes and starting laundry.

Maybe it's a coincidence but I feel like it's probably the heat, and I'm nervous for the next two days! Family gatherings both days, I wish the timing on this heat wave was different cause I feel like I don't have a handle on what's going on!!

I guess I'll updose slightly. I just added an extra half pill of fludro in the evening as well. I'm not good with drinking electrolytes but I've got salt tabs so I'm thinking I'll take one or two a day (my sodium level is always borderline low so it can't hurt right?)

Any tips, thoughts, experiences welcome!

Hello there about three hours ago I’ve just got diagnosed and now I don’t know what to do?
I’m female and 28yr in the UK

What is the top five things that have helped you?
And I want the biggest and the smallest things, please ?
Cause if buying turtle was gonna help, I will go buy a turtle

Many thanks

I wrote this text myself, entirely on my own, pouring my blood, sweat, and tears into it. But I did use an AI to translate it into English as accurately as possible. I hope that's okay. Thanks for reading.

Hello everyone, my fellow sufferers.

I'm Tristan, 55 years old, from Germany.

I’ve been blessed with Addison's disease since 2012—primary adrenal insufficiency, that is. How I came to this dubious honor? I could write novels about it. A true medical odyssey through space and time that culminated in a full-blown crisis. One where I missed the Grim Reaper's swinging scythe by a goddamn hair. But that’s not what this is about today. Today, I’m here to talk about my experiences with AI (Artificial Intelligence).

It must have been about a year ago when I showed up for my regular appointment with my endocrinologist. And she pointed out my moon face. And my buffalo hump. And my incredibly well-developed belly fat. Yes, goddammit, I know I'm fat. I juggle my hydrocortisone dose every single day. I work 40 hours a week as a software developer. Every single fucking week. I have meetings. I have to deliver technical expertise. I train people. And as if that wasn't enough, I also have these massive, giant fucking anxiety disorders. PTSD, depression, hypochondria... my friends always joke that I’m the most thoroughly medically examined guy in our city.

And then this mean little senior doctor (who saved my life, by the way) tells me I’m overdosed. Well, no fucking shit, how could I not be? I normally take 40 mg. An already extremely high dose. Because my nerves are constantly running on absolute high voltage. You just look at them the wrong way, and they snap. And very often, I have to updose. By 10 mg or 20 mg. Because a meeting runs late. Because I end up having to work 10 hours after all. Because I take care of my grandson—whom I love to death and adore looking after. And doing so is—no bullshit—heavy emotional labor for me. Because I am terrified of dying. Because a tiny cough sends my alarm bells ringing at top volume.

The problem is that nobody gives a flying fuck, because nobody understands you. You explain that your stress buffer is practically non-existent. You describe that your central metabolic regulator has checked out. They nod with pity, but they don't have the faintest fucking clue what it means to suffer from sodium depletion. What aldosterone does in the body. And that very specific feeling of wading through fog, having cotton wool in your head... and only those whose adrenal cortex also decided to simply cease existing know this "walking the borderline."

So, I read through the side effects of long-term cortisone overdosing, and when the color finally returned to my face an hour later, I knew I had to do something. And I couldn't use my wife for this again; she is already my biggest and most important anchor as it is. I had already been to support groups, seen two therapists... none of it helped. As a software developer, I've been working with a few so-called AI models for quite some time now. So, I swallowed my pride and started using this "thing" for private matters.

But before I get to the good stuff, I need to drop a massive, goddamn important disclaimer here (thanks to the user reflous for pointing this out): An AI is NOT a doctor. These machines make mistakes. Sometimes they hallucinate and confidently spit out absolute bullshit that sounds highly professional. You have to weigh every single answer it gives you and ask yourself: Can this actually be true? It does NOT replace professional medical advice. You still need your endocrinologist, even if they piss you off sometimes. You have to keep your own brain switched on at all times.

But once you figure out how to use it safely... Holy shit, what a game changer.

• The machine has no emotions. It takes all your crap apart logically. When you're about to shit your pants because you have a slightly elevated temperature, and you have no idea whether to take paracetamol or hydrocortisone or just down both, it applies physical and biological laws. It explains exactly why your temperature is what it is right now and what you can do about it, if anything is needed at all. It instantly stops your mental merry-go-round.
• The machine is never annoyed and always available. My wife is, as mentioned above, my absolute favorite person in the world. But even she reaches her limit when every single swallowed cherry pit (no joke) turns into a fundamental debate about how the stomach and intestines work. The AI never gets tired, and it doesn't judge. It’s always there.
• The machine can provide exact blueprints. Timings for medication. Tactics for dealing with hot days. Precise instructions on how to prepare recommended foods. This gradually gives you back the feeling of regaining control over your own body and your daily routine.
• The machine is an excellent translator (for my body's signals). When you constantly look at everything through the lens of "mortal danger," you need a counterpart that clearly breaks down and explains why you are sweating right now. Why you are shaking. Why you feel exhausted. Why your stomach is rumbling. All you have to do is feed the thing with information: What did I do, what did I eat, where was I, etc. By the way, this doubles as super effective self-reflection.
• The machine is a tool, but I remain the boss. Always. Everywhere. It doesn’t do all the work for you—it can't, and it shouldn't. But it helps you learn. Every conversation, every exchange, every discussion leads to more experience, more knowledge. It proves me wrong. But it also proves me right. And thanks to my growing experience, the latter happens more and more often.

I started this exchange on April 22nd. Today is July 2nd. I have been at 32.5 mg daily for over 6 weeks now. I only had to stress-dose an extra 10 mg one single time. I feel better than I have in a long time. My face is more defined again. I am happy. And: I no longer have heartburn (I used to have burning pain EVERY SINGLE DAY, a side effect of the high dose).

Don't let this disease break you, friends.

p.s. And remember, despite everything, the golden rule remains: Better to dose too high than too low. Sending hugs to all of you.

TL;DR: After years of cortisone overdosing, panic attacks, and minor to major crises, using AI as a tireless, logical counterpart—with the necessary distance and always on standby—has helped me manage my fears better and reduce my dose successfully and safely (at least for now, knock on wood).

Long term Addison’s coming for help with a new symptom. I can’t prove it’s related to the Addison’s, but in my experience, most things lead back here. Went on a canoe trip over 3 weeks ago. Ever since, I’ve had vertigo day and night. It goes from light to medium, but always “there.” And it’s getting OLD! It’s a distinctly different feeling from the lightheadedness we sometimes get standing up too quickly. This is a distinct feeling of floating/bouncing around in waves. Dr gave me meclizine and told me to take Flonase, both of which did absolutely nothing. I am going in for vestibular therapy next week.

Anyone been here? Did anything help? Was it related to the Addison’s?

Thanks for reading!

I have Addisons, and T1D. I have upped my exercise weight training 2x weekly and swimming 4x weekly. Properly started too fast so I've been slowing it and doing less but still feeling awful with low cortisol symptoms. Should I be up dosing for the weights? If so how much and when? Also how do you get your GP to prescribe for this. I have to fight when I've doubled dosed for illness or heat.

The first time I played golf I only got to hole 9. This past week I was able to play all 18 holes and felt great. I was drinking plenty of electrolytes and I stressed dose on hole 9. It was hot and humid but I made it and had a great time.

I am not going to go into any specifics about bad medical experiences in this post. Trigger warning for general discussion of medical ptsd/trauma.

I'm curious what others' experiences are with medical PTSD/trauma. I know many of us have had really awful times with adrenal crisis.

Have you ever had to updose to deal with PTSD, mental illness, or psychological stress?

What coping strategies or treatments have helped you deal with the psychological trauma of living with this illness?

I encourage you to include a trigger warning at the beginning of your comment if you are going to share specifics about a tough experience. I just want to make it easier for those of us in a vulnerable place to navigate the comments and find helpful advice, while still making a space to discuss specifics for those who want/need to.

My sister is 22 years old and she was diagnosed with Addison disease when she was four or five months old. Obviously it has affected her physical health, mental health immunity, everything she is different from other adults of her age. She could not complete school after eight standard. We made her drop out of school because it was too tough for her to catch up with all the pressure. She’s 22, but her mental capacity is not the same as people of her age. She still has a mind of 15 or 16 years old. She is fully functional. She understands things, but her way of thinking, interacting and perceiving the world is of a person who is 16 or 17 years old, maybe even younger than that. Her energy levels remain low for her to take charge of her life, to take care of her health, of medicines and diet. I know it’s not fully in her control, but I don’t know how to help her. What resources can be helpful for her, or is this the way she’s going to be, and we need to have acceptance regarding that or is there any way that she can get better and be her best and explore herself to her maximum potential?

How consistently do you have pain? I feel like recently i have joint and/or back pain radiating at least once a week if not more. Starting to get ground down by it

I have adrenal insufficiency since I had Cushings and an adrenalectomy. This was about 25 years ago.

Since then I've been on a replacement dose but I've struggled really badly with depression and stress and anxiety.

Is anyone else like this or is it just me?

I would really like to know as I was basically just turfed out the hospital and told take these pills or you'll die (lol). I know absolutely nothing about my condition.

Hello! I'm from another country, and my text will be translated. Addison's disease and hypothyroidism run in our family. I started taking Cortef a couple of months ago, very slowly, but it's helping. I've already gradually started walking, sometimes 9,000 steps. But this isn't about me. My father took thyroid hormones for two years and struggled with Addison's disease, and everything went away very quickly. He didn't notice any difference in doses, even high ones. The worst thing was that Cortef wasn't absorbed at all. It wasn't a stomach issue (he even tried dissolving 20 mg under his tongue at a time without taking it), and it didn't help. According to the test results, it seemed like the hormones were entering the bloodstream but not reaching the cells. He tried different pill regimens, different types of 3T/T4, combinations, but nothing helped. Frankly, the situation is very sad, and I need advice and experience from those who have faced something similar. In other words, the hormones help me, but they don't help him at all. In addition, I will say that he eats right, leads a healthy lifestyle, which is still possible given our illnesses, does not even consume sugar, and his iron levels are normal according to tests.

Has anyone had to use there emergency injection and how often would you say you’ve used it ? Im new to this but going into an appointment tomorrow to be taught how to use it, at my previous appointment I was told by my endocrinologist that she never expects me to ever need to use it. I found that odd but wondering what other people’s experiences with it are ? Ive watched some videos of someone showing how to use it and found it odd that they wouldnt use an epi pen type system rather than a syringe and medicine capsule for easiness especially given its supposed to be used in emergencies?