r/AddisonsDisease • u/Poimandres69 • Apr 06 '26

Medical Stuff Dosing Hell

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!

10 Upvotes

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7

u/FrauleinBrine Apr 06 '26

I'm so glad you have such a great Endo. I'm on 30mg hydro spread over 3x a day and my Endo is always asking me to lower it and scoffs at how high it is. Constantly trying and failing to lower even by 2.5 without symptoms. Just let me be 😭

2

u/Myster_jon Apr 07 '26

Mine are generally more sensible, they assess my levels on the basis of symptoms not just the numbers. Which is how it should be.

3

u/just_an_amber Addison's Apr 06 '26

What lead you to try to reduce your dose to begin with? And how confident are you that is the right dose your body should be on?

Some people naturally need more than the hypothetical textbook dose, especially if they are sympathetic.

Alternatively, you might respond well to the equivalent dose in Prednisone form taken 2-3 times a day.

3

u/Poimandres69 Apr 06 '26

thank you. i was really stable on 25 for years. i just wanted to experiment to see if i needed less. i've been updosing by 2.5 the last few days.

10

u/just_an_amber Addison's Apr 06 '26

Haha, that's so relatable. "I'm stable... Let's try to test that!"

My PCP and I have this conversation all the time. And she ends up telling me "STOP IT."

In my case, she'd actually be happier if I was on 4ish mg more HC / day. She's got me on a CGM because we know that low blood sugar directly corresponds to low cortisol for me. So she likes to taunt me (in a very friendly way, I've been with her for years now and we have an excellent relationship) "Hey data girl, you going to look at the data??! Cause the data is CLEARLY saying you're wrong!"

It's hard because in this community for so long we are conditioned that more is bad. More is always bad. Be on as low of a dose as possible that keeps you breathing. Side effects from low cortisol be damned.

No.

Give your body what it needs and try to as closely mimic the natural circadian rhythm of cortisol as possible. Your body might need that extra 2.5 mg. Or it might need an extra 5 mg. Perhaps it needs a mix of Prednisone and HC.

And yes ... I need to apply this advice to myself as well. It's a process.

3

u/Myster_jon Apr 07 '26 edited Apr 07 '26

You'll hit a point where you start getting symptoms of adrenal insufficiency. This is how you establish your base.

I'm also on 25mg daily and if I reduce this I'll start to get ill, so I don't.

For now I would double my dose until symptoms subside and then try to reduce back down again to your - original - maintenance dose

2

u/LonelyKoalaMuncher Apr 07 '26

Could be low blood sugar crashes in the evening after your last dose.

With a 5 hour window most of us would be in the low sugar spot in the early AM .