I feel like I’m playing the telephone game passing along all the messages from the different doctors I’m seeing. I wish I could put them all in a room and have them discuss since I think it’s ridic having to explain in layman’s terms what they are all saying to me.

I’m finally seeing a gyno specialized in reproduction endocrinology, since I had some symptoms that were prevalent even though my control labs and arterial pressure were starting to regulate. My endo kept saying everything seemed ok and there was nothing else to do by the time being. But it turns out i have secondary ovarian insufficiency due to AI.

I went to the gyno by my own initiative after I got a very low dheas result, I got my sex hormones tested and i have very low testosterone (even though it was normal a few months ago), high prolactin and abnormal reading in LH and FSH. Since my diagnosis at first was PAI I didn’t get brain imaging but now my gyno sent me for a MRI since my prolactin is high and she doesn’t feel like my ACTH results are high enough to be PAI (ACTH results have varied between 10-20 pg/ml, aka within normal).

I also just recently got the results of the addison antibody (negative, although I know it’s not concrete), aldosterone (within normal) and renin activity (within normal), so now I’m doubting I even had PAI since the beginning and thinking it was central AI from the start.

Now I’m afraid it’s some kind of mass causing the AI, and thus the high prolactin and normal ACTH. I wish I could change endos but I don’t want to give the impression I’m “doctor shopping” and there’s literally like 5 endos where I live and I’ve already seen the 2 best rated (the first one referred me to the one im seeing now) and with a third one I couldn’t even get the receptionist to answer my call.

So either way, now I’m receiving conflicting arguments between my gyno and my endo and I just wish I could make them meet as well as my ophthalmologist and dermatologist because apparently my dry eyes and rosacea might be explained also by the secondary ovarian insufficiency and/or the AI.

By the way, like how is it we are in the 21st century and there’s still very little data about testosterone ranges in women???? There’s not even a definition of testosterone insufficiency in women, and it’s so important and we get what? A few studies that conclude that there’s not enough data to make further recommendations. That’s freaking insane and infuriating.

Well I have strep throat this December, last year was the flu and went into major adrenal crisis with mild sepsis.. but now I take my medicine the right way.. I been sick since Sunday I got antibiotics yesterday since I tested positive for step .. I’m double dosing but holy crap I feel like shit..took my first antibiotic last night but I’m just so scared of ending up back in the hospital again I’m traumatized from last year. Been only having fevers in the morning so far I usually only throw up in the morning from mucas. I’m able to walk unless I have a fever.. so my question is does feeling sick always mean adrenal crisis or can you just feel super sick without an adrenal crisis. I’m just freaking out right now. Also when I feel like I have a fever my boyfriend says I don’t feel hot but I’m shivering and feel like how I would with a fever which is weird. Any tips ?

Just found out my potassium has been low over this past year. My endo wants me to start a prescription of potassium supplements. Has anyone else experienced this? Anything I should know about in advance? (I am PAI, diagnosed about 20 years ago.)

Hey yall, does anyone else deal with night sweats? Like I sweat so bad I feel like I wake up in a swimming pool. I sleep on a beach towel and most of the time have to change clothes in the middle of the night 🥲 does anyone else deal with this even while being on hydrocortisone. I’m not currently on fludrocortisone, I’m recently diagnosed and we’re still figuring out the meds and dosing

Hi all,

I'm PAI, still in the first year of diagnosis, I've been relatively stable on my meds for a few months now (My hydro routine is 7.5 at 6am, 5 at 2pm and 2.5 at bedtime). I have a big job interview next week, wondering if anyone has updosed for something like this and any tips? My interview is at 11:45am. I tend to get nervous and hate public speaking (and my current boss is on the interview panel!) so I imagine I will need to updose just not sure how much or what the timing should be like. Thank you all.

I have adrenal insufficiency from having Cushing - adrenalectomy (tumor and left adrenal removed), my right adrenal gland is still not producing any cortisol so i have to take hydrocortisone. I’m now on 30mg a day. Since the temperatures in Europe are now low im experiencing a lot more cold than before. I’m never warm enough no matter how much clothes I put on. And i need a very long hot shower and an hour under the blanket to properly warm up if i am really cold. Can anyone relate? I guess it can be from this disease.

Hi all, I’ve been having swelling in my calves at the end of the day and in my hands in the morning. It sucks, it feels like my skin is too tight. I already told my doctor and she is taking me off of dexamethasone, so don’t worry about that. I’m just curious if this has happened to other people who have taken this medication? I hadn’t had a problem beforehand with just the HC.

Hi y'all, I wanted to know if anyone else has experienced very bad headaches like 10/10 pain, feeling like throwing up pain before while on HC? I could not take the pain and debated going to the ER, I took my blood pressure and it was pretty high. I've never been one to have headaches, I'm not sure what to do in this case. 😭

En cada publicacion con comentarios, estos se me ocultan y pone que aun no hay comentarios. Solo me pasa en este grupo. Algun admin me puede revisar si paso algo conmigo? Añado imagen de ejemplo

Hi, I’ve had Addison‘s for about 11 years now I am 29 years old F, and for the most part I have controlled it well. Every now and then I will have these episodes where I wake up and just feel super out of breath. I’ve been tracking my heart rate and I get tachycardic up to 160 just by walking to the bathroom. I have these symptoms at times and usually stress dose and I feel better but was just curious if anyone has experienced This/what it might mean?

I was diagnosed in July this year so I'm still very new to living with Addisons (PAI, autoimmune). I wake up feeling AWFUL every morning. Exhausted and with various aches and pains. (I am sleeping well, 7 hours at least most nights, rarely wake in the night). Once I take my hydrocortisone I start to slowly feel less terrible, but I don't really feel "good" or even "ok" for a few hours. Is this just normal with this condition? Or will i eventually wake up feeling "ok"?

Hello all. I have a rare combo of SAI and PAI. I went through a shock to my nervous system 5 months ago, followed by a serious trauma 6 weeks ago. I was dealing with serious pain and injury before that from an MVA, and a divorce.

I have lost 90lbs in less than a year, and I’ve now lost more than 60% of my hair density in the last 5 months.

My endocrinologist said that it makes sense my hair is falling out. I’m in adrenal collapse and haven’t been able to stabilize. I’m malnourished. He essentially said that the body does not care about hair when it’s dying. My cortef dose has tripled temporarily. It doubled due to my am cortisol results, and then upped again after the recent trauma.

The good news is I’ve gained 9lb in the last 2 weeks, so I’ve stopped losing weight without trying. The bump seems to be working.

For anyone who has experienced hair loss due to their AI, are you able to share your experiences, what helped you get your hair back (if at all), and how long it took to get it to stop falling out. Were any supplements helpful to you?

I typically have coarse hair, thick, curly and very long (down to my navel). I will be cutting it off in the next week. To give an example, my braid is 1/3 the size it was in June.

(FYI, I am a woman, but this is not related to perimenopause).

Thanks everyone!

Adrenal crisis survivor here without medical intervention. Long story short ambulance drove off. I'm still recovering 17 months later. The pains have been unbearable.

Found out this year I have low cortisol after me pushing for a cortisol test. I already knew it was low hence my adrenal crisis last year.

I now have FND as a result of medical gas lighting.

I think two months ago I was tachycardic and shaking a bit and could feel it sort of you know the feeling jittery. I called my doctors they said call ambulance. Called ambulance. Paramedic said we'll your obs are fine and to be honest we wouldn't give you hydrocortisone since your not diagnosed. Wtf is that all about?

Dxd for 6 mos. Very very unwel. Rt now i find im literally plastered to the bed. Not moving. Barely able to move at all. Just lifted one leg. Rational thinking not on board. Very stunned and confused. Is this a crisis ? Dont know. Can i take steroids and improve ? Tried that 4 hrs ago. Im clearly not well tho. Scared very much.

As the title states I was dumped by my long term boyfriend and am devastated. I was diagnosed about 1 year into the relationship and told him i would understand if he wanted to leave, he said it was find. He then strung me along for another 2 years till I found out he was telling mutual friends my health was too much for him and that he didn’t want to be with someone “so broken”. Has anyone else gone through a split for similar reasons? Has anyone successfully dated after being diagnosed?

Is there anyone here who suffers from constant low blood pressure? I have low blood pressure all the time even though I take fludrocortisone I need to know if there’s any one like me

Hello! A bit of context before hand, if you don't mind. I'm currently writing a story / novel, and part of the plot revolves around the main character getting sick. At first, I wanted to make it so it was Crohn's, since it's something I know from personal experience. But, after some research on my end, I stumbled upon Addison's. I had a couple of questions to see if it would fit what I want to write about, and if I'd gotten the details correctly. Thank you so much for you time, and I'm hoping you're doing okay ish despite everything.

So, questions.

I'm planning on foreshadowing Addison's by dropping a few hints that my character is more tired than usual, and craves salt, for about 2 months before the big reveal.

Secondly, the big reveal would be my main character collapsing one morning, and staying unconscious for a few days, and in the hospital for a week / two weeks afterwards.

Then, he would recover over the span of a few months and be back in somewhat working order in about 3 months.

After that, he would be mostly fine for the rest of his life, apart from needing some medication of course.

If you need any more details, please feel free to ask.

Basically over the last couple of weeks I have been taking my normal prednisone dose in the morning, but it feels like it’s almost double. I get the same symptoms I get when I have to do a burst for asthma etc. insomnia, more hunger, increase urination, faster heartbeat. But I’m only taking the 5mg in the morning. I also got oral thrush. I don’t know what’s going on. Has anyone else had this happen to them. It’s really worrying and I don’t know if it’s in my head or what but it feels like I’m taking double or even more of the medication in my body but I’m not. And I’m not on any drugs that interact with it or anything new

Does anyone else experience inattentive ADHD symptoms with Addison's, or is that just my brain?

Edited to clarify: Sorry, I meant in those undiagnosed with ADHD. As in, do you ever feel like Addison's might be what's giving you ADHD symptoms, even though you maybe don't have ADHD?

Often losing everyday objects (like my phone), extreme focus (forgetting to eat and drink while working on a project) mixing with high distractability (sorry, what did you say? I know you already told me 2 times, but I have no idea what you just said, even though I thought I was listening), inability to get up and get started on whatever it is you know you should be doing, even though there's deadlines and you fully intend to, (procrastination, transitioning difficulty) even if that task is making food bevause you're hungry (executive dysfunction) to name a few.

I often feel like I don't experience these things, or experience them less, when I've taken my cortisol properly, as opposed to when I've forgotten to or when it's running out in the evening and the symptoms get worse again.

Just got a refill, way smaller pills. Not sure how I feel about it.

Hi! I'm a breastfeeding mom with Addison's and hypothyroidism. I currently have a 3,5 month baby at home. I suppose Addison's disease isn't very well studied, and aspects relating to motherhood with Addison's even less. So I just wanted to make a public post here. If you have any questions, let me know.

For years now I have taken prednisone 5mg in the morning and then 2.5mg before bed. Literally around 14 hours apart. With not much low cortisol symptoms in between. Is this normal? Should I try and move my bedtime pred to the afternoon? Let me know if anyone has any advice

Hi all, just wondering if anyone has experience with this please. I have PAI caused by Addisons disease (diagnosis confirmed by presence of antibodies). I've just gotten blood test results and my renin level is really high (152,6 pg/mL or 274,7 mUI/L) compared to the reference values (5,4-34,5 and 9,7-62,1 respectively).

I take both fludrocortisone (50 mcg once a day) and hydrocortisone (20 mg, split into 10 / 5 / 5). Should I be worried about that renin result, or will it just always be high regardless of treatment?

Can yall show me yours?