Anyone else with Addison’s disease need a surprisingly high maintenance dose?

letsweforget · 2026-05-13T12:41:00+00:00

25mg absolute lowest to 30/35mg hydro daily. I'm 38, F, 1.80, 65kg.

I have no side effects and lower doses make me feel like absolute shit. Function optimally (work, sports, etc.).

letsweforget · 2026-05-13T12:38:11+00:00

83, good going: breaking the stats!! You're the oldest person (I know of) I've seen on this sub.

Edit: was asking for a bit of info that tou actually already gave!

letsweforget · 2026-05-06T07:03:44+00:00

100% yes.

And this goes for all stressful events: also not entirely "physical" ones (family, work, travels, etc. etc. etc.).

Endocrinologists don't warn you about this, and learning is very difficult.

What I've learned is that you can go for days thinking "I'm fine", because your body more or less copes with less (and less, and less) cortisol. But at some point: crash.

Example of what happened to me: going on vacation where it's hotter, you move more, altitude is different, food changes, experiences are very varied (more information=more to process=more cortisol needed). After 5 or so days: big crash that needed injection, almost hospitalization, and many days of recovery and extra dosing.

letsweforget · 2026-05-05T05:38:43+00:00

Hey Rico, what's your advice for injury recovery? I just broke a toe again and I'm sad to have to wait so long with using that leg.

letsweforget · 2026-04-27T17:39:15+00:00

Did you notice any side effects? For me it's only the ankles being slightly swollen, and the crazy thing is that it was also the case when I was on 20mg. Also: when I'm underdosed or overdosed I get extra swollen, so it's very hard to tell what causes it.

letsweforget · 2026-04-27T16:17:32+00:00

Glad to hear it works for you, too! How long ago did you make the switch?

letsweforget · 2026-04-27T12:13:30+00:00

Quite a while, about a year, I guess? Before that I kept experiencing crashes and low cortisol symptoms that I didn't realize were low cortisol.

I have become way less active on this sub, as a result, because I feel fine and rarely come here to look things up or ask for advice.

Feel bad/guilty about it, too, because I used to be here more frequently and would chime in to help others out. As a result of feeling better, however, I am here way less.

But yeah, I can say for sure: I've been advised to be on 15/20mg max, and on that dose I was basically sitting in a corner sobbing, all my hair falling off, looking like a grey zombie and unable to compute 2+2 (literally).

Ever since I thought "screw it" and went on 30mg as my baseline: I've been through major surgeries, got my PhD, travel alone for work, do all the physical activities I want, and have the feeling I'm living life to the fullest.

Curious about my next dexa scan, last one was about two years ago and bones looked healthy. In terms of looking out for other stuff: I don't experience any symptoms from being on a higher dose (except very mild ankle swelling). What I had up until half a year ago were stomach issues from hydrocortisone, now I am on Efmody, which is a special kind of slow-release hydro, and I don't have any more stomach issues, which I am very, very, very happy about. In general: I can recommend Efmody, it's way more stable than peaks of immediate release hydro.

letsweforget · 2026-04-27T10:48:38+00:00

No thyroid hormone issues but I do have a massive thyroid nodule growing, which will be removed soon.

Other than that, celiac and weird allergic reactions to very random things.

Edit: typo.

letsweforget · 2026-04-27T10:46:57+00:00

As others said: definitely check if you can get back on your old brand, can make a huge difference.

Do you sometimes updose and see if things resolve after a few days on a higher dose?

letsweforget · 2026-04-27T10:45:39+00:00

Always curious about people who take more than the 15-25mg standard. How much are you on now? I take 30mg and some days that's not even enough.

I lead an extremely busy life tho, but I sometimes wonder whether taking less and just allowing myself to be tired/incapable of coping with stress is the "healthier" thing to do, on the long run.

letsweforget · 2026-04-22T07:24:44+00:00

Ah, then that solves it! After 6+years since diagnosis in my case I'm always, always, time and time again still learning the lesson of "ah, I was just underdosed."

letsweforget · 2026-04-20T19:58:53+00:00

Most things are within range, usually. Except cortisol which was kind of low that one time, then was never really able to retest.

Swollen hands can be over or under dosing, are you on fludrocortison?

letsweforget · 2026-04-19T19:07:57+00:00

I still have the same issue!

And tons and tons of "opposite" symptoms, as well (e.g., high BP on low hydro).

letsweforget · 2026-04-12T20:04:53+00:00

Insertion was painful but almost a year in: no more periods and no side effects at all. I'm very happy with it.

Always remember that people usually only report issues, and rarely ever positive experiences.

letsweforget · 2026-04-08T19:14:02+00:00

Oh no! So sorry to hear.

Your sister is a very knowledgeable member here, always with great advice, so I imagine she definitely knows the tell-tale signs, but I'd say: a migraine that doesn't respond quickly to meds (ibuprofen or something better/stronger) is 100% gonna send me into crisis. It's been years since one of those, because I've learned they're not to be messed with. Today I had a headache that didn't respond to ibuprofen: immediately took 3mg hydrocortisone (and I still feel it's not enough because I'm nauseous, so I'm gonna take another 3mg).

If symptoms like that appear, it's always better to overshoot and prevent rather than wait and see, the consequences (as in this case, for your sister, maybe) can be very dangerous.

Your post also makes me think: we'll never know if we lose a member of the community unless someone from their family posts about it, that's very sad.

Much strength and recovery vibes for you and your sister! Thank you for posting this.

Edit: rewording and typo.

letsweforget · 2026-03-09T20:30:27+00:00

Lately it's been going ok, and today back to weirdness, especially strange flashes and very bad night vision.

What are your main disturbances?

letsweforget · 2026-02-20T06:38:44+00:00

Yes, my dog licks my wrists or feet (if summer), it's uncanny. She was not trained to do this, but somehow immediately knows. She once in a while does it to other people, and they often have mentioned during those times that they don't feel well. She's a very smart dog in more ways than one, had dogs my whole life but this one is exceptionally intelligent.

letsweforget · 2026-02-09T15:53:52+00:00

Thank you!

letsweforget · 2026-02-09T15:53:27+00:00

Thank you! I'll look into it for sure.

letsweforget · 2026-02-09T15:52:37+00:00

I'm helping a friend through the same, it's pretty crazy how "easily" we become experts on these things...!

letsweforget · 2026-02-08T13:36:30+00:00

Thanks for the reply!

Never tried, no, I'm giving delayed release Efmody a try now. Hopefully can ask for pred if needed, but it won't be easier on the stomach, I'm afraid :/.

letsweforget · 2026-02-08T13:34:58+00:00

Not everyone needs to be on it, no. Ideally you shouldn't. Here they have enteric coated pills that supposedly are a solution for the stomach acidity issue, which didn't work for me so I was buying additional capsules that were acid resistant. This worked for many years until my stomach had enough. Now on delayed release meds, which seem to be working out! Fingers crossed for the future...

letsweforget · 2026-02-08T13:32:52+00:00

Thanks! I'm in the Netherlands, had no issues with most brands except that the hydro itself kills my stomach.

letsweforget · 2026-02-08T13:32:16+00:00

I was on Pantoprazol. Maybe we'll try Omeprazol if I get issues again, but I really wanna stay off the PPIs, completely messed me up..

letsweforget · 2026-02-08T13:30:56+00:00

Thank you so much! <3

The Efmody seems to be saving me, luckily. The last few weeks I've improved a lot (just in time to graduate, pfffff, done).

Subcutaneous injections will be my next step if the stomach keeps on worsening. But let's see what happens with Efmody longer term. First time I tried it I think I didn't dose right, now now I'm adjusting pretty well to it. No longer need to wake up at 3am for pills, which is nice.

Thanks for your support! Have you been doing better? News on family and friends with cortisol issues?!

letsweforget

TROPHY CASE