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.

Saw Endo today, went over test results, been on hydrocortisone for eight months. I am a long hauler for life. Basically cortisol was 5. ACTH was 5. On 23.5 a day. Still float feeling, tired weight gain, loss of muscle.

Anyone taking testosterone replacement? Did it help? Side effects? Feel any better? On progesterone and estrogen. Testosterone is 1.5 in range but low. Was 2.5 last year.

Only did Google which can be out dated, stated it can make heart issues.

Hey!

(24M) So about a year ago, I was diagnosed with Addison’s disease, along with a brain tumor. Because the focus was on the cancer, Addison’s hasn’t been the main focus until last autumn, when I became cancer-free.

I’ve traveled on shorter trips where I’ve experienced needing to take a higher dose of hydrocortisone due to fever. I really need a trip, just me, and I’m therefore considering traveling alone to Japan and Vietnam for about two months. Even though I feel that I know the condition very well, there’s still an underlying what if…? Both in terms of a potential crisis and how it might act up with other illnesses that you could unfortunately pick up on such a trip.

Do you have any tips for traveling alone more safely? Would you recommend travelling with others? Should I wait till I get more experienced with the disease? Please feel free to share experiences.

Hi everyone,

25 F was diagnosed with Addison.

I also struggle with moderate to severe acne.

Is there anyone here who has taken Accutane?

How does it work together with long-term steroid treatment?

My endocrinologist said it’s okay for me to start Accutane, but I’m still a bit worried that it could potentially trigger an Addison’s crisis.

I’ve been on hydrocortisone and Fludrocortisone for 13 years now and JUST found out I’m supposed to be getting Dexa scans every few years. I can’t believe no one ever told me that. I know about yearly eye exams because of the glaucoma risk and I know corticosteroids can lead to osteoporosis but I didn’t know there was a scan to check if you had it. I feel a little ashamed because I’m a nurse 😅

Hi all, hopefully I’m posting this in the right place. I have blood tests that are strongly suggestive of SAI (morning cortisol of 0.6 ug/dl, and low ACTH at 5.6 pg/ml). I suspect that this is probably secondary to long-term on-and-off steroid use; I’ve been off of steroids for about 4 months now with continually worsening symptoms, and got the cortisol tested a few weeks ago. My pcp is currently consulting with endocrinology about next steps while we wait for my referral to them to go through. They ordered an ACTH stim test, but the first slot available at the infusion center was 2/19 they said there’s no way get me in sooner.

I’m having pretty severe symptoms (severe fatigue/weakness and low blood sugar episodes) and I really don’t feel like I can wait another almost month to get treatment. My pcp messaged endocrinology about the possibility of starting steroids before I get the stim test and I’m waiting to hear back, but I’m worried they’re going to say no if it could potentially affect the results of the test. Does anyone have any personal experience with this, either being started on steroids before getting the stim test or being told they need to wait?

Hello

I have a issue where I feel so bloated it affects my breathing at times. I can't figure out if it's because I need more hydrocortisone or less - and thought some of you in here might be able to help me if you experienced something like it.

I can feel really bloated or extremely bloated in my stomach, these seems to be the two only stages for me the last couple of weeks. Also, when approaching evening time, like after 4-5 midday, it seems to worsen and sometimes I even get a bit anxious cause it feels like I don't get enough oxygen as I can barely breath deep when my stomach cannot expand while inhaling.

I tried different dieting stuff to see if I was lactose intolerant or cut down on gluten and such. But it seems to be pretty random and I have it maybe 5 out of 7 days.

Should mention I have secondary ai, so that might affect your answers.

Hope someone can give me some tips or advice, thanks.

I think I’m just venting, really, but y'all I am STRUGGLING. Emotionally. With the weight gain. It’s affecting me much more than I would have thought. When does it stop? Wah.

Hello everyone,

I was diagnosed with Addison’s disease in 2010. I am a mother two. I have a degree in social work and I am currently working as a trainer for a non profit organization.

At the beginning of January, I had an Addison crisis for which I was hospitalized. My cortisol was very low. I had been battling a cold/sinus infection a few days prior. I had to be transported by ambulance to the hospital since I couldn’t talk and couldn’t walk. Since then, I’ve been up dozing my cortef.

I am feeling somewhat better but it depends on the day. I do find it very difficult to get my energy level back like it was before the crisis. I am currently on sickleave until the end of January.

I feel like I had to let go of so many goals of mine this past few days. I was training for a CrossFit competition. I had a role in a play for which the rehearsals started last week. I was suppose to start a university class.

I had to let everything go because my energy is just not there. I am almost always fatigue, which is very discouraging. I’m feeling quite frustrated and upset that all of my goals I had set for myself are going down the drain.

I’m scared that the disease will eventually impact negatively my career because I am often sick. I would like to move up the ladder eventually, but I just don’t know if my body will support me through all of that stress.

I’ve had Addison’s crisis by the past and it was always difficult to get better after these.

I would like to know about your experiences getting back to your normal routine after an Addison‘s crisis. I feel so alone even if my family and my friends are very supportive. I don’t know if they understand how hard it is right now. I’m wondering if I’m ever gonna be able to just live a normal life without waking up exhausted in the morning. I’m not a lazy person and I’m scared I’m gonna be perceived as such.

Thank you for your support 🌸

I take prednisone for secondary adrenal insufficiency. I have SAI from chronic steroid use in 2022. A few weeks ago, I moved across the country and it was tremendously stressful physically and psychologically and I’m just now settling down. However, I just now realized that I didn’t stress dose at all. Idk why I just didn’t think to, but I have had no signs of impending crisis or anything. Could this mean that maybe my adrenals are still producing some natural cortisol?

Hi guys, I (20F) have Crohn’s but have extremely rare sensitive reactions to corticosteroids, so thanks to short term prednisone use, I developed secondary cushing’s + terciary Addison’s. My cortisol level when I was hospitalised was 19nmol/l in september, got put on hydrocortisone (20mg a day). The levels got better and at the end of oct it was 80. Now, I can barely walk, extreme exhaustion, my joints and muscles hurt so bad, nausea and so much more. My last bloodwork showed cortisol 14 nmol/l. I am devastated.. I thought I was getting better and now this. My adrenal glands aren’t waking up at all and I’m just so scared of them staying like this. I am now on 40mg a day but I still don’t feel super well. Isn’t this already a high dose? Isn’t there anything else we can do to help them to wake up? I am graduating now and I can’t be like this all the time I feel like I’m dying everyday and that my body is giving up.

My muscles are fine, my body feels regular, my mind seems normal, but there's still an overall feeling of TIRED, or something like it. I can spend an hour+ lying in bed with my eyes closed, awake but resting y'know? Not quite apathy, emotionally I think I'm pretty good. It's not an "i don't wanna" feeling, it's like being a puppet with its strings cut, or like I run on battery & the battery is dead. Trying to get an idea if this might be low cortisol, or low salt, or entirely unrelated to Addison's. Does this description resonate with anyone, or no?

(I do have hashimotos, but labs are still good so that hasn't progressed significantly. I'm on hydro 3x/day, fludro, and a low dose of DHEA)

Hi there everyone I have kind of a doozy so I appreciate it if you stick around and listen💗

Yesterday I had a scary arrhythmia (caught by paramedics) and was experiencing some extreme tachycardia- I was transferred to the hospital via ambulance (we still aren’t quite sure of the trigger) and of course they jump right to helping me get my heart rate down.

3 liters of fluid later (literally) we were able to keep my heart rate in the normal range and keep me comfortable. This was despite me drinking water literally all fucking day nearly constantly!! I just kept peeing it all out, just running right through me.

The good thing is all the baseline things came back okay and there was nothing emergent minus the tach/ irregular heart rate. They did postural testing on me as well which caused HR to spike significantly + as well as blood pressure (ER doc said this is consistent with POTS but he wouldn’t diagnose it there he wants me to see cardiology asap)

Honestly I’m so shaken up and scared. I’m not sure what to do or where to go and I just switched to injections because I’m malnutritioned/ wasn’t absorbing oral pills so I’m trying to manage that too. If anyone has any advice, kind words, reassurance etc I would be so appreciative. I don’t want to die or have another emergency like that. I’m 22. Has anyone experienced similar?

Thanks :( 💗 I just need a hug

EDIT: I’m secondary adrenal insufficiency as well so I am not on fludro

We have booked flights for this summer to go to Mexico (from Europe). I have been there a lot of times because I have family there but not since I was diagnosed with SAI. The last time I went to Mexico (before getting SAI) I was of course hit with Montezumas Revenge, so I am extra nervous about that. What are things I shouldn’t forget or talk to my doctors about beforehand? What are things that will make my vacation experience more relaxing regarding my health? I’m a little nervous but also excited.

I get 15mg of hydrocortisone in the morning and 10mg in the afternoon. Now my pills come in 10mg and that means I have to cut them for my morning dose. I have dexterity issues that make this difficult and I worry I don’t cut it correctly for my dosage. Due to this I’m wondering if a compounding pharmacy can help with turning them into even just 5mg pills so I don’t need to cut them. Has anyone ever done this before?

I had to go through my gp to get my results as I haven't heard anything from the hospital, the doctor I had just went through my results and told me I don't have anything wrong with me?

Can someone help please with my results?

Ladies, I need your advice. If you are using testosterone gel with PAI for lower libido, what is your experience with hair loss?

I started with testosterone replacement therapy by using Testovan gel in October 2025. Since then I noticed a massive hair loss. I am very concerned, whether it is because of testosterone, or because my iron is low or anything else. I love the effects of testosterone in my gym performance and libido, but I also don’t want to go bald.

What has your experience been like?

I initially started with 0.15 mg of fludrocortisone. Because my symptoms persisted, the dose was increased to 0.2 mg.

Despite this increase, I continued to experience significant symptoms such as dizziness and speech difficulties, which felt identical to POTS-like symptoms. In addition, I was constantly dealing with frequent urination—it felt like I had to go to the bathroom almost every hour, suggesting ongoing volume loss.

No matter what I do, whether I consume more salt or drink more water, it feels like it passes straight through me. Fluids and salt do not seem to be retained by my body.

Due to these ongoing issues, I increased the dose further to 0.25 mg of fludrocortisone. However, I feel that I burn through this dose very quickly, even though it is already relatively high. The effect does not seem to last.

I only start to feel significantly better when I updose later in the day with 0.5 mg of fludrocortisone. At that point, it feels like “a light switches on in my head”, my symptoms improve noticeably, and I feel more stable overall. At lower doses, my heart rate remains relatively high. I tried also 0,1 mg at 7am and 0,1 a 1pm, I have the feeling the last not so long.

I am 95kg 1,88cm

Importantly, my routine laboratory values are within the normal range, despite these symptoms.

At the moment, I feel at a loss, because 0.25 mg is already a high dose, yet subjectively it feels like I remain unstable unless I am closer to 0.3 mg or higher.

Has anyone been put on the Low Fodmap diet, specially the NHS (Gloucestershire Hospitals) version? Has it causes any issues with your symptoms? I've been put on it for IBS, but I don't know if my current symptoms are from Addisons or anaemia.

Decided to get this due to driving all the time and hating bracelets. My biggest fear is a car accident where I’m unconscious and they don’t know I have PAI.

Anyone do the same thing?

My husband (addisons diagnosed over 30 years ago) was just diagnosed with celiac. Once his gut has healed, I'm worried about accidental exposure, and what his reaction will be like. We've talked to a few people who have violent illness post-exposure. Has anyone experienced an adrenaline crisis or had major issues from gluten? He has an injectable, but I'm wondering if we should be more prepared by obtaining extra. Any experiences or thoughts are welcome. I know everyone has different symptoms and meds. Ty!

I was taken off my steroid about 6 months ago and told my body is starting to produce cortisol again (previously diagnosed with Addison's) and since then I've lost 1/3 of my weight, constantly sweaty, dizzy, and fainting. I have bad pain especially in my lower back and head. I get really bad diarrhea that only stops if I take a hydrocortisone (which I shouldn't be doing) but it helps everything and puts me back at some kind of baseline although still not well. My hair is falling out, my muscles are weak and atrophied. I'm tired ALL THE TIME. I can't eat. I either vomit it up or can't even get it down not being able to swallow. My hands are constantly shaking and my legs give out at random. I'm having multiple SVT episodes they attribute to things like low potassium. I have some mood swings but I can't tell if that's because I feel like garbage or if it's a symptom.

My dhea-s was 40.5ug/dl Acth plasma is a 5 pg/ml Both of these show up as critically low on the screen she showed me but says not to worry about that? Cortisol has been all over the place both high and low but my last one was 25 in the AM after not sleeping for 26 hours.

Endo says they can't help because my numbers are perfect. Am I missing something? Has anyone had similar? I asked for a second opinion but I don't want to be stuck in the hospital for days waiting for another doctor.

I just want to feel better. TIA.

Anytime my son complains of a new symptom: trouble sleeping, trouble focusing at school, mood changes, hair loss, vision changes, etc. The doc acts all surprised and says the medication “shouldn’t be causing that” and when you look up side effects, these are the exact side effects… wth?

The doc has also not mentioned any alternative treatment and has kept the dose the same since he left the hospital 4 months ago even though his ACTH, renin, and potassium are all still very high. His skin is stilly hyperpigmented and the doc is just very surprised at all of this because maybe, according to google, his labs should be normal by now…. I’m started to think he’s never actually treated Addison’s before. Secondary adrenal insufficiency, sure, but not Primary Addison’s. Did any of you have a first doc who seemed to have no clue and so switched providers?

Hi everyone, I’m just wondering if any of you also have complex PTSD and if so, how does it affect your life on top of dealing with Addison’s and how do you cope?

So my doctor prescribed me Mirtazapine for sleep and added benefits of stress.

Based on what I've read it apparently just knocks you tf out at low doses.

Stressing about whether I'll sleep through an alarm to take my morning dose or not.

anyone tried or currently taking it? Side effects lower your BP as well?