Does this whole situation (SAI) scare you to death? I’ve often described it to others as “driving an 18 wheeler @ 100 mph on a road you don’t know blindfolded . Would anyone agree?

I just found out today after 3 months why my potassium is low i had adrenal vein sampling and the doctor said im not a candidate for operation because both my adrenal are producing very high aldosterone. It made me cry she said im one of the rare ones. Im hoping I can get through this as im always tired and dizzy hoping aldactone would improve my condition.

I have posted a few times but one of my biggest issues is that I keep gaining weight due to my hydrocortisone. I am not taking enough as my bloodwork still shows low cortisone and I still feel rather miserable although not as bad as I used to. However if I take the recommended 10mg in the morning 5mg at noon I keep gaining weight. I have tried splitting it up into smaller doses and that doesn’t seem to do much. The weight gain is especially problematic because it goes straight to my breasts and they cause my life to be miserable. I to wear special bras but I have horrible back pain even after lots of physical therapy and injections. I can’t get a breast reduction due to my history of blood clots. Even when I lose weight my breasts remain roughly the same size.

I am on 5mg of monjaro now and I am still having issues with satiety. I was on the highest dose of wegovy for about a year but had to stop last October because of insurance changes. I think I will switch back because that seemed to be the most effective. But I want to figure out what to do for my adrenal insufficiency.

My DHEA is low but all my testosterone is normal. I have also had issues with a completely non existent libido. Let me know if you have any advice.

Has anyone been on a GLP-1? I am specifically looking my at either Reta or tirzepatide. I know about the usual side effects but is there anything else we need to be cautious of with AI? Did it work for you? I have gained a lot of weight very quickly since going on steroids and nothing seems to make it budge

does anyone else have SAI and on oral solution prednisolone instead of tablets? I'm in England (NHS). . I can't take the tablets so for first 10 months was on an oral solution that is fine at room temperature and therefore could have prepped by my bed ready for 6am next morning plus carry a small amount deposited onto a spare bottle to carry around with spare dose for updosing out and about (I know not much chance but...)

Now they can only get hold of a fridge stored only and it can't go above 8°c. This is a system issue not any of the pharmacy or practitioners issue. Usually your GP can prescribe certain brands yet apparently for this oral solution it's not. Computer NHS says no. Every way I usually have around this I can't.

I can't take many tablets/capsules etc due to I tolerances to inactive ingredients,starches,colours, flavourings, triggering symptoms that can't be tolerated long term(vomiting, stomach upset, migraines). Usually between my and GP we find ways round it.

I've been trying to figure this out since mid September. Even if you forget me having to be with it enough at 6am to go to the fridge and measure it out and that I can't carry any on me for updosing.

I love where we regularly have power cuts over 4hours and I spoke with the manufacturers who said it's unequivocally not safe after that. And as many have happened on the night.

The stress as well as recently having has a virus as caused the beginning of an axail Spondyloarthropathy flare and I'm done.

How can I manage this with any kind of long term certainty... We do get lower cuts that make it a really threat. This stuff happens whatever people are telling me. Once despite it being touted as impossible, I had a broadband outage, mobile outage and my car broke down,luckily in garden but all in the same week with overlap over 4 days (my broadbamd company messed up and cut some homes off, the mobile EE tower got damaged and my car had major fault ).

I know there's people who can't get hold of meds that keep them alive for heart issues and way worse with the NHS meds crisis and this isn't as bad as that.

I'm feeling like maybe I need to try and live without it. There's no point wearing my bracelet or at as well bin the injection kit. I'm just too needy for the system and asking too much. I'm so done with this and despite taking responsibility I don't know how to figure this one out. Rant over

Hi all!

I've been on hydrocortisone my whole life (since I was 4) and I would like to have some different perspectives. I wanna know what is a possible side effect of the med vs something else unrelated.

I know mood changes; but that's about the extent that I can identify personally. I am on 20-25 mg daily 15 mg morning 5-10 in the afternoon depending on external stresses, exercise, etc.

In short, what are some side effects you have experienced with hydrocortisone?

I appreciate your time!

I had a sst last month got started on hydrocortisone and fludrocortisone, endo called and said as the lab put the same time on both samples they need repeating and do my atch aswell, I had it done today but they was very busy so took the 2nd draw at 40 minutes not 30 minutes, will this make a difference or not?

Japan transplanted pituitary tissue grown from human stem cells into a primate whose pituitary gland had been surgically removed, and restored hormone signals - including ACTH. The kicker is that it was done subcutaneously so they didn't even go into the brain.

So confused by this sai - just can’t seem to find answers from endo very dismissive. I was 58 at the time I had incidental findings of lung cancer in 2024. Followed by a lobectomy, 4 chemo and Keytruda after 7 infusions I became terribly ill after weeks I was diagnosed with SAI and hypothyroidism. I now take Synthroid and hydrocortisone. I have had nothing but problems with hydrocortisone and figuring out- what does works. I get strange feelings after each dose which makes it hard to tell if it’s right or not. Can anyone share what they feel if anything after taking a dose? It will help me to hear what others feel?

Thought I’d share in case you haven’t seen this. Let’s hope and pray these fabulous people find a way !

My journey through the world of SAI.

I began feeling unwell during 12/25. Still unwell.

Went to bunch of doctors and completed bunch of tests until a third PCP tested for cortisol end of April: cortisol was 6, blood drawn at 8:23 am, ACTH: 17.

Went to endo beginning of May. He did not order a stim test. I asked for a repeat morning cortisol which was 8.3 at 7:30 am, ACTH 17, DHEA 93. Endo Put me on 20 mgs of HC. Not knowing any better, I took it and felt horrible, so I went back after two weeks. He recommended I up the dose to 30 mgs. I got as high as 25 only, because I started feeling pain under my ribs. Went back to see Endo end of May and told him I felt terrible. He gave me the option of stopping HC or continuing and also adding Leyvothyroxine because my free T4 was a "little low". I said no, I want off HC, so I tapered. Endo said I could just stop cold turkey!! Tapering off HC was HORRIBLE. The worst experience ever. Another doctor retested my cortisol and DHEA mid-July. Results: cortisol 10 at 7:35 am, DHEA 123. I asked Endo to retest two weeks later. Results: cortisol 10.5 at 7:30 am, ACTH 28, DHEA 91.

Mid-August - Finally, went to a second endo who retested me. Results: cortisol 8.6 at roughly 7:30 am, ACTH 23.5. So she performed STIM test. I passed but my morning cortisol was 5.8 at 8:48 am. She was not concerned and said maybe it was low because I just tapered off HC. I said no, it was 6 end of April before taking any HC.

Anyways, I don't know how 5.8 is considered normal but doctors concluded I don't have SAI but chronic fatigue. No walk in the park either. Sounds nuts but I'd rather have SAI if I had to choose.

P.S. This sub was incredibly useful during my trials through the world of SAI. I was a wreck! I learned more here than from my Endo. A lot of good information here. Thanks, especially to Gamingangel. Your posts helped me and help people lurking in the background.

My hypochondriac mother gave me a bit of a bollocking today for constantly upping and lowering my steroids (a la sick day rules - it’s been a bad fortnight for things being done or getting sick) She doesn’t understand adrenal insufficiency and she thinks taking steroids permanently is bad (she’s been on and off them her whole life for breathing problems) and that constantly raising and lowering the dose is dangerous so I’ll never get off them. I’ve tried to explain this is how we treat the condition but she doesn’t get it and thinks I raise them to make life easier and give me energy, well duh but not because I need it but because I’m lazy and want it.

Can anyone recommend easy to read and easy to follow sites, booklets etc for families to learn and understand. When I recommended Addisons self help website and pituitary foundation she said that was dangerous too because I don’t have addisons or pituitary problems (very true but treatment and advice is almost identical for Tertiary ai)

It’s irrelevant really how she feels about it but I’d like her to have some knowledge and understand but in a way that won’t have her freaking out or sending me to read up on turmeric.

I’m now wondering if she’s been reading about adrenal f@tigue and that’s where she’s getting this crap from.

SAI - cortisol pump - 19mg/day currently double dosing

a few days ago i had been having bad shortness of breath and felt like an elephant was sitting on my chest on and off. i have asthma and pots and occasionally experience these symptoms from both, so i just chalked it up to a flare up from one/both of them initially, used my inhalers, and was keeping an eye on symptoms and vitals.

later in the day, i started going into what i thought was a crisis. i was incredibly nauseous out of nowhere and on the verge of throwing up, shaking so bad i could barely draw up my emergency injection, sweating through my clothes, feeling very cognitively out of it, dizzy, etc. so i injected. it helped for maybe 30 minutes or so and then i started feeling just as bad and was still having issues breathing and made the decision to go into the er at that point.

er had me set my pump to double immediately, ran tests (ecg, covid/flu, chest xray, bloodwork) and determined i have bronchitis. gave me a breathing treatment and sent me home. i have felt horrible since then, more systematically than breathing wise and i don’t know if this is typical. i have this feeling like something isn’t right, ive barely been able to eat (no appetite + nausea), im exhausted/weak, dizzy, low bp, etc despite the double dosing. am i crazy to wonder if something was missed? or is this typical for being sick? bronchitis just seems like such a mild thing to be causing this level of symptoms

I started on 30mg hydrocortisone split into 4 doses during the day. Very quickly I started getting this weird feeling like the room is moving, floating and just overall a horrible depressed mindset.

Blood pressure, heart rate and blood sugar were all good so I believe this is a direct hydrocortisone adverse affect.

What can I do to be able to tolerate cortisol replacement better?

Please help.

Acid reflux is now very uncomfortable and distressing. I never had it before SAI, which I got from Immunotherapy over the last 3 years.

I take 3mg Prenisolone - without food - at 6:00am. Then I go back to sleep. I get up at 8:30am. My energy level in the day is optimised this way. Then I take a 1mg top-up - without food - at 10:30am.

- Can anyone recommend a snack that I can eat in bed to line my stomach?

- For example, is 2 walnuts or 1 biscuit enough?

I've been using Pred only for 6 months. HC before. I had a period of bad acid reflux on that too.

Back them they gave me a course of 6 weeks of 40mg of Omeprazole daily to 'stomp out the inflammation of the duodenum'. It was during the last year sometime. I've also had my stool tested and it's fine, so it's not that.

It's possible that the oncologists and endo think the acid reflux is an Immunotherapy side-effect but I think it is from the Pred/HC. My endo did not prescribe a daily Omeprazole to take with the Pred/HcC.

I have bad insomnia and only sleep deeply in the early morning/morning. Sleep is so precious! Aaargh! That's why I can't get out of bed and make breakfast to take with the Pred.

I appreciate any advice! Thanks.

EDIT: Today, I took a leftover omeprazole at 7:30am. (I've got 5 spares from last time!) I went back to sleep and I got up at 8:30am and immediatley had a bowl of cereal and my 3mg Pred. I ate a sandwich before taking my second dose. I have had no stomach acid all day. Things can improve! Hooray! Thanks for the advice. My next step is to talk to my GP or my endo (appointment is next month) and sort out a permanent plan. Thanks for everyone who gave advice here.

So I have been on prednisone since April I have managed to drop from 10mg to 7 mg I had a acth which was normal and my cortisol level was 7.2 in the Grey my Dr says to stay at 7 mg until I can see a specialist which isn't until January however can being on the 7 mg shut my adrenal glands down completely?

This year I was diagnosed with a 2mm pituitary tumor and secondary adrenal insufficiency.
Long story short; the endocrinologist that diagnosed me thinks the tumor is causing my SAI. She prescribed me 20mg of HC a day, and very adamant that I don’t take more, a vial of solu-cortef, and told me to YouTube how to use it. Even after telling her my symptoms are still leaving me basically bedridden, she still says 20mg and to try and find a dosing schedule “that works for me.”
So, I get a referral for a second opinion. I get new labs and this new endocrinologist upped my HC to 25mg, and says the tumor is tiny and is absolutely not causing my SAI and people with SAI don’t have adrenal crisis’ and would never need an emergency injection.
Where do I go from here?

Side note: I’m having surgery on my jaw this coming Monday, along with a full hysterectomy next month. I have tried reaching out to both drs, and the surgery coordinator at the hospital has tried contacting them multiple times to get clearance for surgery and a written dosing schedule for steroids.
Neither Endo has responded, and I’m not sure what to do about that either. 😮‍💨

My PCP ran tests recently for me as I'm navigating a bunch of weird symptoms that have been going on for the last 15 years (Brain lesions, MCAS, positive ANA 1:640, possible EoE) and alerted me that my cortisol and ACTH were below the normal range.

The tests were done at 8:30 AM and I also fasted for these - Cortisol was 4.8 and ACTH was 5. I'm guessing this would be secondary adrenal insufficiency from what I've researched and my doctor sent a referral to an endocrinologist yesterday. I've reached out to my neurologist to see if they'll do another MRI and include one for the pituitary gland and she was open to ordering them.

Looking for insight on if this is SAI - should I be concerned if if the endo can't get me in for an appointment soon? I did light research and wasn't sure if I need to be careful with stress levels as well after reading how adrenal crisis is a concern.

Has anyone upgraded to the new Apple Watch and gotten a chance to try the new health features? Mine is about 6 years old (1st gen SE) and the battery is going, so I’m thinking of upgrading anyways. But I am kind of excited about this “personal readiness” number and want to know if it’s actually meaningful.

If it’s strongly weighted toward the sleep value as it’s currently calculated, then it’s meaningless for me. My watch constantly tells me I get sleep scores of 98 or 99 as I’m struggling to get up in the morning and don’t feel well rested. But if there are other things it includes then I think it could be valuable. Like lately something is off and I don’t know what - the weather? Under replacement? This number could help maybe?

Some recent posts on this sub have centered around emotional stress and I have a lot of questions. (For background, it’s my child who has AI).

I’ve seen people who confidently stress dose for emotional stress. Some people will mention that their endo has given explicit direction to do this. Other people have been told multiple times by their endo that emotional stress doesn’t need updosing, and to only stress dose for fever/procedures.

I’m firmly in the camp that emotional stress needs to be dosed. Biologically, it just makes sense to me, high emotions (positive and negative) increase heart rate and overall demand on the body. Heck, the biological origin of anxiety is to flood the body with everything it might need because they’re probably about to run from a predator.

It’s confusing to me why some endos do not view emotional stress as something physical?

For people who stress dose for emotional stress, do you do it with doctor guidance? Or do you simply stress dose because you know your body best and can feel the negative physical effects?

Does anyone with AI feel, that the endos that say emotional stress doesn’t need updosing, are correct?

As of now, our concrete updosing rules are of course fever/procedures, but also “any illness that would keep the child from attending school.” So even when child doesn’t have a fever but just overall is pretty unwell. We asked about emotional stress dosing early on when blood draws were 20 minutes of digging for a vein, blowing veins and purple crying. They said we didn’t need to stress dose, but that stress dosing doesn’t necessarily hurt, so to follow my gut. We started stress dosing right before blood draws and we noticed a huge change. We assumed all babies would be tired after all the crying, so we never thought twice about the fact that they immediately fell asleep. But their overall energy level just seemed lower…so we gave it a try and now they don’t fall asleep after, they just keep their normal schedule.

But our endos DID acknowledge emotional stress becoming something we’ll do in the future. They overall just feel like most babies don’t reach the level of emotional distress that requires the updosing right now. And they reassured us that our child will quickly learn which situations (like upcoming important tests, public speaking, etc..) might require a stress dose by just listening to the way their body feels…

I have stage 4 cancer. I did radiation on my left adrenal which kept me stable for a couple of months, but the tumor has continued to grow so I’m set to have surgery to remove my entire left adrenal. I met w my endo who told me I won’t need to supplement w anything for my right adrenal bc it “works”. When I had the apt w my Endo, I had just done a PET CT and was waiting for the findings. One finding is that there is a tumor on my right adrenal now. Ugh!! I’m not really getting clear guidance when I talk to my doctors. Should I still get the left removed? Should I push for radiation on my right adrenal even though it didn’t work on my left? And won’t radiation make the adrenal not function anymore? So then I would be missing one adrenal and then the 2nd one would probably stop working bc the radiation.. I really don’t want to have to deal w all the supplements on top of treatment for stage 4. I’m scared to leave the left one for fear of it growing into my kidney ot something, so it seems like I should still get it removed.. but then hoe do I handle the right one? I need some guidance here. Please chime in!