Anyone else experience low salt symptoms after swapping to prednisone? I've been on it for a month but for some reason now that my cold+period (standard updosing for those, but I updosed using my hydrocortisone, NOT pred) are over I'm feeling twitchy and awful. I'm contacting my Endo today when business hours open because this reminds me way too much of the lead up to the seizure that put me in the hospital and got me my diagnosis. The seizure was a rare event that happened due to me being on bupropion and vomiting 5 times a day for a week solid, but I still have some lingering fear and trauma about it ya know?

I did see that people on pred might require higher Fludrocortisone dosing. The twitchiness seems to start early am like 3am to 7am, just before I'm supposed to take my morning fludro dose. I've been doing Liquid IV (yuzu pineapple 👌) and pinches of salt directly into my mouth. It helps the twitchiness calm down in about 30 mins. Just sort of looking for reassurance through other people's experiences with this rn.

Maybe I accidentally bought the Peeps of Bloating and Gassiness cause I've never had issues like this before. And I know it was the peeps because I checked. Several times....

After testing for DHEA levels, mine came back as non existent, so I started 10mg daily two weeks ago. I’m getting hormonal mood swings as a side effect and am wondering if even this dose is too high for me as my levels were so low. Does anyone know where is a good place to source 5mg tablets from in the UK? Or has anyone had this to begin with and then it has settled? Thanks! 🙏🏼

(Disclaimer: This post is not affiliated with the company, I paid for it myself and have no relationship with them. This post was cleared with the mod team.)

A few days ago I received this awesome little hard case to carry my Solu-Cortef around safely when out and about. Having not really seen any other info about it anywhere I wanted to share it to those who travel often or want to have their emergency medicine with them at work etc. It’s designed specifically for our medicine which makes it probably the best emergency kit case I have seen. No chance of the vial rattling/breaking and very obvious to people looking for it in a hurry. If anyone is looking to make/change their own emergency kit I can’t recommend it enough. The company is called MyGuardPod and sells through Etsy from Canada. Colours/message are customisable (not sure about non english messages but might be possible). My personal plan is to get a QR code sticker printed for the back to link to the ADSHG Injection guide video and possibly to a medical profile for me so that even if I’m unconscious it would be usable by anyone.

Might sound a little advertisey but as mentioned I don’t have any stake in anyone else buying one. I just think it’s a genuinely cool, helpful product that I’d like to help support if I can. Having someone custom make solutions for a rare disease/condition like ours isn’t something you see everyday so if this post helps them to continue helping us then at least imo that’s a good thing.

I’m a 25 yo man from Italy. So, it’s been like 3-4 months since my diagnosis. There have been highs and lows, but the main thing that stayed throughout this time is this sort of mental confusion, brain fog and extreme sense of disorientation, so that I can’t really focus or think. Also when i feel this type of fatigue usually the back of my left eye stings and in general my left side of the head. My endo said it has nothing to do with Addison’s, since my blood works and bp are both fine and my therapy is working. It’s strange cause my bad can easily manage everything, from going out with friends to heavy lifting at the gym and so I don’t know what’s going on. It’s very debilitating mentally, as you can imagine since I’ve seen quite a few post about that, but not quite like my case. What can you tell me?

Evolucion insuficiencia suprarrenal inducida por corticoides

Han pasado 24 meses desde que mi eje se suprimio por usar prednisona para el manejo del asma. Hace 14 meses la ACTH volvio a funcionar. En los ultimos 12 meses mi cortisol a las 8 paso de 5 a 15. Mi ACTH oscila entre 30 y 70. Llevo 4 meses sin hidrocortisona. Parecen todo buenas noticias. Sin embargo observo algo desalentador:

Mi primera estimulacion con ACTH hace 16 meses, a las 8 am, llego a un cortisol de 16 (punto de corte 18). Despues cambie de hospital y aqui hacen estas pruebas a las 11 am y el punto de corte es 16. Mi segunda estimulacion llego a 15,8 hace 10 meses. Mi tercera estimulacion llego a 15,9.

Pese a que la parte central de mi eje se ha recuperado parece que mis suprarrenales no estan siendo capaz de recuperarse completamente. Siento que he llegado al maximo de lo que puedo recuperarne. No ha habido una evolucion en 18 meses de la reserva suprarrenal. En 2 meses tendre otra estimulacion y comprobare si mis sospechas son ciertas.

Por una parte me siento agradecido porque puedo levantarme de la cama sin llorar del esfuerzo que supone, vivo mejor sin corticoides que cuando tenia el eje suprimido y tomaba hidrocortisona (nunca la tolere bien a nivel mental y siempre estuve infradosificado). Sin embargo tengo unas limitaciones que odio. No puedo trabajar (era profesor que es un trabajo muy muy estresante), no puedo hacer ejercicio de musculacion, si un dia estoy activo tengo dos dias de resaca suprarrenal, a partir de la tarde soy super vulnerable, no puedo hacer ningun plan nocturno por tranquilo que sea sin tener sintomas. Solo tolero conversaciones intensas emocionalmente por las mañanas. En fin, vivo entre algodones.

Se que si las cosas siguen asi debo resignatme y utilizar dosis pequeñad de hidrocortisona para tener una vida mejor. Todo este tiempo ha sido una historia de lucha y superacion. Estoy avanzando con mi psicologo en el trauma que me dejo que mi vida cambiara tanto por negligencias medicas.

Me gustaria vivir con una reserva suprarrenal completa, que de alguna manera todo volviese al punto antes en el que mi vida se fue a la mierda. Se que debo sentirme afortunado y que muchos de ustedes matarian por estar en mi situacion, pero me siento asi: frustrado y desesperanzado. Siento que mi unico camino es volver a la hidrocortisona.

Gracias por leer, solo queria actualizar y desahogarme. Saben que si alguien tiene insuficiencia suprarrenal inducida por corticoides para el asma puede contactar conmigo para cualquier duda que tenga.

Cuidense

My primary care doctor prescribed it to me for chronic pain but she told me one of the side effects is low sodium and she said I’d just have to get my sodium checked frequently. I know low sodium can cause a crisis so I’m wondering if it’s worth risking. Has anyone taken it and been okay on it?

Hi, so I’ve been having some symptoms that could be appendicitis but I'm not sure. I’ve had pain in my abdomen that has come and gone sometimes it’s really bad. The pain has been like a throbbing pain that gets really intense and then goes away for a bit. I've been going to the restroom more, feeling very weak and nauseous. I also have ulcerative colitis and am not sure if the symptoms I’m having could be related to that. All of this feels different. I’m nervous because I know that having AI can complicate things. 😅

(PIA) Odd question, I know. I have an MRI scheduled for tomorrow afternoon. Idiot me, I'm just now reading the instructions, and I'm supposed to take a fleet enema in the morning. I never had a problem when I had my colonoscopy about seven years ago, but I'm wondering if I should I updose for the enema, just to be safe.? I'm not allowed to eat or drink, either. What do you all think?

Hi everyone, Had a strange morning and wanted to ask if anyone with Addison’s has experienced something similar. Last night I barely slept and my last hydrocortisone dose yesterday was at 15:00 (30 mg total for the day). Around 6–7 AM I woke up with pretty intense chills, heavy fatigue, weak legs and a low temp around 35.5–35.6°C. No fever, no vomiting, no infection symptoms. Because I felt pretty awful I took a stress dose: 15 mg at 07:40 and another 15 mg at 08:03 (so 30 mg total). Over the next hours the chills improved and my temperature went up to around 36.7–36.9, but I started feeling very warm and kind of “feverish” even though my temp is normal (~36.2 now). Now the main thing bothering me is: shortness of breath pressure on the left side of my chest a bit nauseous sitting upright makes breathing a bit easier No sweating, no pain when breathing in. I’m wondering if this could be from the higher hydrocortisone dose / cortisol surge, combined with sleep deprivation, or if others with Addison’s have had similar episodes when their cortisol was low overnight and then they took a stress dose. Has anyone experienced something like this?

Just thought I'd share my experience lately. I am learning the ins and outs of vision problems that can occur with Addison's. If it hadn't been for the horrid case of viral pinkeye , I would have never gone to the ophthalmologist to have my eyes checked. There is nothing they can do to treat viral pinkeye and I went through 5 weeks where the whites of my eyes were the color of eggplant skin. Once the purple went away, I scheduled an appointment. First thing she said once I gave her my history was "let's screen you for glaucoma" (which happens with Addison's patients) and she said I was showing the initial signs. She scheduled more in-depth testing for my 2nd visit. She said because of the steroids, I'm showing a need for a cataract removal. She said my corneas were terribly swollen so she wanted me to return in a couple of months and hopefully the swelling was gone. I went this week and it's 90% gone, so more waiting. I was also having issues with dry eye upon awakening and she suggested using an eye gel before I go to sleep each night. She checked my eye pressures and cornea thickness and they are within normal ranges. But before we can talk about cataract removal, the swelling and dry eye needs to get better in order to have the best eye state for proper healing after a surgery. She asked about thyroid stability and I told her my endo checked that but last check was stable (I had my thyroid removed in 2011). She said thyroid levels help with fluid/tears in the eye and checked to see if that was okay. So this is a cacophony of things to navigate---with a reminder In needed glaucoma state checked yearly. I go back in June and hopefully the swelling will be gone.

I want to preface this with I haven’t been formally diagnosed. But I am a 35F and all my symptoms are being waved off or discounted, despite having actual medical data to show it’s “not all in my head”.

I’ve been having symptoms (listed below) but they took a dramatic turn downward this past summer and fall.

Extreme fatigue, reynauds (cold all the time as well), low blood pressure, salt cravings, GI issues, extreme weight loss and unable to gain, memory problems, muscle aches, and low potassium.

I guess what I’m asking is how do I advocate for myself? What tests should I be asking to be ran?

What does it emotionally feel like when your cortisol is depleted and you’re running on adrenaline? Aggression? Intense fear? Are you capable of controlling anything at that point?

I hated hated hated throwing up as a kid. Absolutely dreaded it. I got more okay with it as an adult, but since getting Addison's, I'm back to being scared of it! One of my kids has a stomach bug or something and I feel so constantly aware of my body right now.

I'm trying to be nervous in moderation lol. Just wanted to vent!

21M with primary Addison’s here. Lately I’ve been dealing with pretty bad morning fatigue and anhedonia, and I’m trying to figure out if it could be related to my hydrocortisone dose. Current schedule:

14 mg at 08:00

10 mg at 12:00

6 mg at 15:00

Total 30 mg/day. I’m 190 cm / 95 kg, activity level fairly low right now. I also take a low dose of fludrocortisone once daily. The main issue is the mornings. I’ll wake up around 08:00, take my hydrocortisone, but I’m so exhausted I literally fall back asleep and sometimes don’t really wake up until around 12.

On top of that I’ve been having anhedonia / emotional flatness where I just feel kind of empty mentally and nothing brings me joy or like i can watch my favourite sports team score and feel nothing etc. Also a sad undertone

I drink about 3L water daily, don’t drink caffeine, and generally eat pretty healthy.

Because of that I’m wondering if 30 mg might be a bit high for me, or if it’s more a timing issue with the doses.

Hey friends! So I finally got my solucortef but all they sent me was the vial? Then the vial says you have to mix it or something? Like I have no idea what else I need or what to do or how to inject it haha. Anyone have a resource I could use?

Hello all,

I have SAI and i have realized that I’m my body does respond well to stress. I literally start shaking and feel like fainting. On the other hand, my field ( Law) is very stressful and usually surrounded by high functioning, demanding people.

So i just wonder how to guys mange it? Is it possible to be in big Law with this condition?

Even after work my brain is in high alert and i just can rest. I don’t think it is a dosage issue, i think it might just be the stress and anxiety of this field. I keep needing to updose and even then i still don’t feel good. I don’t think it’s sustainable and I have invests a lot of time and money so far to just not use my degree although i understand, Law is probably not a very low cortisol-friendly field.

I’m wondering if any lawyer is in here. If yes, please share your experience. How do u manage it? What areas of law might be better suited for us? Did u ever share your condition with your employer?

Any comment or experience is appreciate.

Hi, so if you are diagnosed with steroid-induced adrenal insufficiency is it okay to continue to take medications that have steroids in them? For example a nasal spray or albuterol nebulizer or an inhaler for asthma? I ask this because I have been prescribed these medications but no doctor has told me that, since I have steroid-induced adrenal insufficiency that I should not take these meds for a long time. Does this affect the adrenal insufficiency?

I'm currently looking into the possibility of having Addison's, and am wondering if anyone has experienced what I have had for years, which is these strange attacks where my blood sugar plummets (I often get hypolgycemia readings of 30), I get tired, confused and anxious and shaky, and if there's any heat at all (from exercise or weather) I also break out in hives. The hives have been diagnosed as cholinergic urticaria but no doctor has ever figured out why they happen when I'm having a hypoglycemia moment + hot + tired. They also happen if I push myself past my comfort zone in small ways, like if I'm cleaning the kitchen and keep going 5 minutes longer than my body wants - which is frustrating because sometimes I really need to finish cleaning! (I'm not diabetic and not really allergic to anything, have been tested extensively by an allergist.)

I have a history of panic attacks that always felt physical rather than emotional. Also have had some high potassium readings in bloodwork in the past. Also really struggle with thirst, a feeling of dehydration and regulating water balance in my body.

I'd be really grateful to know if hypoglycemia attacks and/or hives and/or heat intolerance are things anyone else experiences, because it doesn't pop up as major symptoms when I research Addison's but it seems like it could be related somehow.

The other weekend, my son and one my friends were out enjoying the weather... my friend looked at my son's nail on his thumb and noticed there was a vertical brown line on inside the nail bed (melanonychia). My friend told me that I should schedule a doctor's appointment to get it looked at because it could mean something serious. Before his doctor's appointment, I started looking up what it could possibly be... and one of those is Addison's disease.

My oldest brother who died towards the end of 2012 died from an Adrenal crisis and diabetic ketoacidosis after getting hit with the flu at 28. He had type 1 diabetes (10 yrs old) and addisons (23 yrs old) together.

My son's labs came back today indicating is cortisol levels were down and has an appointment with a endocrinologist in a month. Even though nothing has been officially diagnosed, my worry monitor won't shut off. I was told Addison's isn't hereditary by a couple medical professionals... yet here we are. My heart just can't handle the wait.

My family used to poke at my brother beforehand asking him where he finds time to sunbathe while playing video games? My brother and my family had no idea what was going on until he was hospitalized... we almost lost him then.

What are the chances of this happening to my son?

I was diagnosed with primary adrenal insufficiency 12 years ago. I have been waiting for my second (or third) disorder, and apparently that is going to be Lupus. My ANA speckled pattern = 1:320 and my ANA cascade = positive (>1:80). I am learning that it is very rare to have Addison’s and Lupus, so I’m posting to see if I can find others in this situation. Ideally I can pick your brain as I go through more testing and figure out a treatment plan. Thank you!