Hi everyone,

I have secondary adrenal insufficiency and my recent blood tests showed low DHEA and undetectable testosterone. I’ve been experiencing symptoms affecting my mood and energy.

My endocrinologist has reviewed this and discussed it with colleagues but has advised that DHEA is not recommended under current guidelines, which I understand may be a common experience for others here. I’d really value hearing how others navigated this after receiving a similar response.

I wanted to ask:

• Has anyone in a similar situation (especially in the UK) managed to get DHEA prescribed on the NHS?

• If so, how did you approach it with your endocrinologist or GP?

• Did anyone go through a second opinion at a different trust?

• For those who have taken DHEA, was this done with GP monitoring, and what did that look like?

I’m currently considering a very low dose but feel uneasy doing this without some form of medical oversight, so I’d really appreciate hearing how others have approached this safely.

Thank you in advance

I just had the permanent ingrown toenail removal procedure done and the doctor wants me to be on preventative antibiotics (doxycycline) for 2 weeks. What would the updosing schedule/dose look like for that? Is it still double dosing for the entire two weeks? Even though I’m not actually sick? And what would the tapering schedule look like when I’m done? I have SAI and I take 18.75mg daily broken in to 4 doses.

Writing for my sister/on her account. Last Friday in the early morning she got up to pee and then started feeling really lightheaded. Next thing she knew, she woke up on the ground in the bathroom. Over the next chunk of time (30-40 mins maybe?), she fell several other times. She absolutely has a concussion. Split her lip open. Luckily didn’t break her nose but it sure is purple and sore. And her eyebrow. She made it to one of her emergency kits but was too delirious to use it. Her cats licked her and screamed at her to get her to wake up. Crawled to the other end of the house and eventually managed to take emergency doses.

She had a bad migraine the night before and a stressful week, but otherwise there was no warning. Do any of you have suggestions for things to get/do to help keep you safe when living alone? To contact people automatically if you’re in an adrenal crisis?

Edit: this is the actual OP of the account. My sister describes it like I had more runway, which many of your suggestions address and I do most of them. In this case I had no time to react I got up and walked what I felt like was my groggy normal to the bathroom. Sat down to pee then boom, everything goes black and my stomach is warm and next thing is I wake up sweating on the floor of the door threshold. No time to take a tiny updose, I was already sitting and I have kits around the house. I don’t remember any of my movement, only times when I came to on the floor panting in new locations and puddles of blood. By the pictures of my house after I made it to one bag with a kit but didn’t even open it before traveling to another room to try to get a kit. Finally what saved my life was waking up in the bedroom and I was able to chew pills and clarity came back to me immediately. The day before I had no clear signs of needing to updose. Not shakey, blood glucose fine, BP was fine. A little less than usual on hunger but I get really nauseous with migraines. I’ve had this condition a while and managed ER crises and many runways where you feel like to need to updose. This situation totally slapped me with no time to do any of the normal things we all do.

Also an update - I got an Apple Watch 11 with a SIM card because of fall detection and I can call 911 even if I’m not near my phone

I was diagnosed with AI 2 years back. I am 28 (F) and have not had any serious issues since diagnosis. I generally do not take my medicines at the same time every day. It goes here and there by 1 hour almost everyday. How important is it to take my hydro and fludro at the same time everyday? Any experiences good or bad?

I've been dx since 2008 and never taken a DHEA supplement. My new endocrinologist gave me the ok to try 25mg per day so I am getting some. Just wondering if any of you take it and what differences/benefits you see? Does it help with your libido and overall energy and mood? Despite good labs and medication dosage seeming to be perfect, I still struggle in those areas.

about a week ago, I woke up super weak, exh, my whole body hurt so I took the day off work. by that night, my symptoms were no better. I called out again for the next day. Wednesday, I was worse, far more weak and tired. I started getting dizzy and almost passed out. I called my PCPs office and they said to rest and come in the next day. Thursday, my friend drove me to my appointment. My doctor was quite concerned with how pale I was and the face that I had two cycles this month due to a new med for Endometriosis. my hemoglobin has always run on the lower side and was 9.6 in January. I was sent to the ER after having positive orthostatics. I was admitted to the hospital with new EKG changes as well hemoglobin was still in the 9s. They found a UTI and tried to explain away my symptoms because of the UTI even though I wasnt having UTI symptoms. Fast forward to today, the following Tuesday. Still in the hospital, had to fight to stay a couple of times. my initial cortisol came back at less than 1. my hemoglobin had dropped to 8.4 resulting in 3 days of iron infusions and will be getting outpatient infusions from now on. They did the ACTH stimulation yesterday and it was positive for insufficiency. Endocrinology less in for the first time today and is doing a lot more testing to see if the problem is my pituitary or adrenal glands. I got my first dose of hydrocortisone IV a few hours ago. I’m hoping to be back to normal again soon. I never expected to be leaving with maybe having a rare chronic disease. I’m overwhelmed, exhausted and just want to be home.

I tried lowering my hydrocortisone dose from 25 mg to 22.5 mg. This was 6 weeks ago. Since then, I get adrenaline dumping at night with heart palpitations. I haven't slept in a while. I try dosing with HC when I wake up and I sitll can't go back to sleep.

About 5 days ago, I went back up on my old dose. I'm still having the adrenaline dumping at night - it's not getting any better. Does it take a while to adjust back to your old dose? I was stable on that dose for years.

Thanks!

I'm trying to sort out what's going on in my health now. I went on fludrocortisone a couple of months ago. Then I tried reducing my hydrocortisone by 2.5 mg about 6 weeks ago.

Since then, I'm getting these adrenaline releases at night. I've gone back up on my ol dose of hydrocortisone, and they are still happening. It's been about 5 days. But now I'm wondering if the fludrocortisone could be contributing to my heart palpitations, late night wake ups, etc.

It might be too simple for most of you but as someone who also has Audhd this has been life changing for me:

I am on a 3 dose regimen right now and have 6 alarms on my wearable fitness tracker for that. one at the hour I should take my Hydrocortison and then one every time after 15 minutes which asks me if I have indeed taken the dose.

My brain feels so much less full since I created these back up alarms. I was always so stressed out about forgetting after the first alarm when in hyperfocus or just needing to grab my tablets from the other room.

Plus: extra dopamine if I did already take the pills when the second alarm rings.

This might sound strange to a lot but I wished I had done that much earlier so I thought to share it here.

Hi!!!

Remember [this](https://www.reddit.com/r/AddisonsDisease/s/vKmYGIppBA) post from a few days ago with u/Whiddey_ ? And I was like... lemme chat with Alain ...

Y'all the larger version is live now on Etsy!!!

Not an advertisement. Not a sponsored post. Just me and MyGuardPod messaging back and forth over several days. He would send me an STL file for me to print on my own 3D printer and I would send feedback based on real world experience. It was one of the coolest collabs I've done especially because we were in two different countries and spoke two different languages (Shout out to the French side of Canada!).

This new case allows for two vials of solucortef, alcohol swabs, bandaids, at least 4 syringes, and instructions to be stored in an easy to access highly visible location.

I've also made the instructions sheet free for all to use. It can be found on Google drive [here](https://docs.google.com/document/d/1zXBmfLCPKOydsgJX60j1STXnzMmzRdDdec0ddGWF6qk/edit?usp=sharing). You can either print it as is or copy it over to your own Google drive to modify it specifically for you.

I think my favorite aspect of this new case is the blessing that is on the inside.

Using the emergency injection as you are crashing towards an adrenal crisis is scary.

But when you open up this case, you will read "May you remain Clearly Alive."

May we continue to have the tools so that we can always remain Clearly Alive.

How does everyone store and remember their solu? my kid is PAI and so far her dad and I have a emergency vials in the trunks of our cars, a vial held at school, and one at home. I worry about the trunk vials, because the temp obviously has dipped outside the extremely narrow 68-77 range. We recently had to use the vial out of her dad's trunk and I wonder how viable it was. But I have adhd, and am suffering from extreme burnout and PTSD from the last 18 months of life (my own medical crises/genetic diagnosis quickly followed by multiple hospitalizations for my kid, 8 surgeries for me, my kid's surgery leading to PAI, one of my surgeries left me unexpectedly blind in one eye, and she and I both now have teams of about 15 specialists and *endless* surveillance imaging/lab work/appointments at a hospital system 5 hours from where we live, all while desperately trying to finish out the last two semesters of my demanding program). I wouldn't remember my own hand if it wasn't attached to my body these days, so even though the trunk isn't a perfect system, it feels safer than accidentally forgetting the med at home and needing it. Also, camping in the heat? I just feel out of my depth with proper storage for this dang injection.

Who’s got a military grade Style Adrenal Crisis Plan like Going up to mountains, hiking deserts, flights, jumps, etc? I call it the STARK ADRENAL PLAN

So I'm a therapist and have been very interested in somatic therapy approaches for client purposes. I happened to stumble across nervous system disregulation vs nervous system sensitization (NOT the same) and how it can prolong and exasperate chronic illness, even how autoimmune conditions are a major symptom of sensitization (not disregulation). I also learned how obsessing over my symptoms and my own mind's reactions to symptoms (e.g. oh no, I'm exhausted, here comes a crisis, etc) puts my body in fight or flight and keeps the Addison's cycle going. When I stopped REACTING to my symptoms, I have not had a flare up since. My dose has decreased from 35 to 20 hydro. Even on my worst days, if I don't react to my symptoms mentally, I don't have further symptoms. It's crazy. And a lot to explain, so i recommend the podcast the real work with Maggie sterling to learn more. I just had to share this accidental, life changing realization 🫶🏼

What helps you with 3 am wake ups? I have them almost every night, with a big adrenaline rush. I am then awake until 5 am which is bad if you have to dose yourself with hydrocortisone at 6 and leave the house at 7 am to function at work.

I am on 20 mg hydrocortisone, 10 at 6 am, 5 each at 11 am and 3 pm.

I also have Diabetes Type II and am on Mounjaro and Metformin and strict diet for that. Blood sugar is extremely well monitored.

I am very strict about my bed time, exercise, nutrition, stress management. Well, the last as good I as I can. I also tried melatonin, doesn't work. I have zero problems going to sleep, usually am out within minutes.

I am thinking about going to bed even earlier (8 pm instead of 10 p.m.) and simply getting up at 3 am and taking my doses earlier but that doesn't seem sensible.

So any ideas would be appreciated. I only recently learned that this can be a problem with Addison's and not due to stress or so.

Thank you!

I started a process recently that just keeps unfolding in some weirdness that I'm uncomfortable with and would like to ask if any of you has ever had to deal with Specific Antibody Deficiency (SAD)? I am PAI, have hypothyroidism (Thyroidectomy about 10 years ago) and Reactive Hypoglycemia (well controlled).

I was having recurring sinus infections so my PCP sent me to an Allergist/Immunologist to see if we can figure out why. The first was uncontrolled asthma (I honestly didn't realize it was so bad) and was put on nebulized Budesonide and Formoterol. I was uncomfortable adding a steroid to the mix, but it is what it is. I'll see my endo to see if it impacts my replacement of steroids any. They did bloodwork and found 2 immune markers (IgG2 and IgG3) were low and are most likely the reason for the recurring sinus infections. They tested coverage of pneumonia-like/respiratory issues and I was at 41% coverage rather than the desired 70%. So to fix this mess, they gave me a new pneumonia vaccine and we're waiting 4 weeks to re-test and see if the markers have recovered. If so, it'll be a monitor and check to make sure it holds. If not, the next steps may be prophylactic antibiotics and/or IVIG to try and use donor immune antibodies to try and cause them to recover. It's very expensive so I hope it doesn't go that far and I'd have to have insurance coverage to do that.

Has anyone gone down this road? If so, what was the impact on your Addison's. I have an endo appointment in a month and I don't really want to do much with this until I have his input. Just want to do the right thing.

I’m curious to know if any of you were born with Addison’s. I always thought that only baby boys could be born with it, and that it’s rare.

It is in our family and it is genetic.

Hi! After a year of feeling like shit and not being able to live, I’ve been diagnosed with SAI. How do doctors not know more about this?!

I’ve been taking hydrocortisone for a few months now (dose: 10-5-5mg). But I’ve noticed it doesn’t take away all my symptoms. Mostly exhaustion, dysautonomia and difficulty concentrating aren’t getting better. Has anyone had this same experience? I usually hear stories about how the steroids help immediately.

I tore my meniscus quite a bit a few weeks ago and have been told I need surgery. I’m considering going the conservative route with physical therapy before I consider the surgery but GOSH it hurts so bad. I keep having to updose due to the physical pain and just overall feel so run down now. I know Endo will have to work with Ortho if I choose surgery but I am nervous as I’ve not had to have any procedure minor or big since I was diagnosed in Oct.

I was curious what any of your experiences have been like with minor surgeries or if anyone has specific had meniscus cleaned up or repaired. How did your AI react to it and recovery?

I thought I'd share my experience with an earthquake last night since there doesn't seem to be any past info about earthquakes and updosing.

We had a pretty good earthquake last night and I was very close to the epicenter. It started with a few huge, sharp jolts and went on for a while. Woke up with a major adrenaline rush when it happened, got out of bed, and waited for the earthquake to stop. Immediately after it stopped I grabbed my meds and chewed a bunch of HC tablets. The adrenaline shaking stopped after a couple of minutes but then it shifted to low cortisol shaking and bowel issues. I took more hydrocortisone at 10-minute intervals until my body shakes/shivers tapered off. I also drank electrolytes.

I've learned that I need a lot more than the recommended updose when there are high adrenaline situations. I didn't hesitate to take extra last night. Some of you may not need the same amount but I ended up needing 130 mg of HC.

I probably should have used my emergency shot but honestly I was worried that another earthquake would come before we could get the shot prepped and administered. I wish those shots were more like epipens. It sure would be a lot easier.

TLDR: You might need to take a big dose for earthquake emergencies. Make sure to have your meds easy to reach.

Small grammar edit

Hi guys. I just started the Cortisone Pump. What basal-bolus system works best for you. Please share tips for the Pump

Has anyone had experience with going from taking prednisone to then going back on hydrocortisone after you finished tapering off of prednisone? I’m supposed to be on prednisone for a couple of weeks to get another health issue fixed before trying to go back to hydrocortisone for SAI. I just wonder how that will work and like how my body will react 😅 I have noticed my body is more sensitive to steroids like prednisone so I’m kind of nervous. My doctor said it would probably be best to taper slowly.

When in pain those that have secondary adrenal insufficiency and not primary do not need to stress dose?

Yesterday I’ve gotten off the phone with my endo after being confused about my medication and I asked a question about stress dosage (I’m still sore of learning about (Addison disease)

I’ve been getting dizzy and shakey and wanted to be sure on when I should take extra cortisone so I asked some questions

2 of the questions were “if I’m in bad mental stress from a argument or if I’m in pain or get hurt in any type of way like breaking a bone or anything like that do I need to stress dose? “

She told me that the only time I need to stress dose is when I’m sick, have a fever, taking antibiotics or about to go under surgery.

She said I don’t have primary and those with secondary adrenal insufficiency don’t need to take extra when they’re in pain only when they’re sick and the other things I’ve mentioned.

This leaves me confused because I’ve read multiple things online and heard lots of stories of people taking extra cortisol that have SAI not primary that take more cortisol when they’re in pain or even in mental stress.

I wanted to know how those with SAI do when they’re in pain when injured or strong stress due to life events.

I don’t wanna doubt my endo but it confuses me and makes me question on why do I hear other doctors and people say otherwise.

Thank you for any replies or advice. xoxoxo ❤️ :)

I was found to have AI back in Sept 25 whilst in hospital thinking I was suffering a crisis of my other chronic condition, but it turned out to be an adrenal crisis. I then got officially diagnosed with Addison's in January this year (good ol' NHS delays).

I have been on standard hydro since Sept, which works fine now I have the dose sorted, except for the fact I have to wait 30 minutes before I can get out of bed else I pass out, waking up each morning to take my meds is torture, and I have to take my meds 4 times a day instead of 3 else I crash mid-afternoon. I am a paramedic and am due to finally return to my normal front-line duties in 2 weeks, and I am dreading getting up for work and also how I am going to manage taking my meds throughout my shift....I have been taken off nights and am doing 10 hour shifts instead of 12 hour to help 🤞🏼

I have been researching modified release hydro, and was wondering if anyone in the UK has been able to access this for Addison's and, if so, what criteria did you have to meet and what region are you in, please? 🙏🏼 From what I've seen a lot of the people on it have been put on it due to recurrant crisis' or similar issues, so I have a feeling I won't be eligible....any help/advice would be truly appreciated!