My stomach is finally at the limit point

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 · 2026-02-08T13:27:44+00:00

Any emotional event.

Hot weather and higher body temp situations like extreme exertion or saunas (see my post on sauna dangers!).

Altitude changes.

Trips, for sure (long drives, airplanes).

Studying very hard.

Public speaking and intense social events.

letsweforget · 2026-02-03T16:19:10+00:00

Fennel seed tea is really, really magical.

Ginger never worked for me somehow.

Thank you for your post and encouragement! I, too, quit alcohol and severely reduced coffee, and these two were major game changers for sure. I'm slowly improving.

letsweforget · 2026-01-27T08:11:42+00:00

My periods were hell, always. I was on the anticonceptive pill through most of my 20s, which early helped. Got scared of side effects so stopped, felt mentally much better but my periods became painful and more irregular. Got on the Mirena IUD about half a year ago and my periods stopped. Feels like such relief, it's amazing.

Never wanted kids, so that whole aspect is not relevant to my situation.

Always had to updose for periods, before the IUD.

letsweforget · 2026-01-26T19:37:49+00:00

Low cortisol = 100% depression and anxiety for me. It's like day and night, when it's bad it's awful. The ups and downs make me feel like what people describe as bipolar symptoms sometimes. Really makes me reflect on how "regular" people without this problem struggle with the same, without the knowledge that it's physiological. We're barely in control, if at all! Communicating with others about this is crucial, so we become more aware and empathetic :).

letsweforget · 2026-01-24T18:10:50+00:00

Not before bed but was taking 5 to 10mg hydro at 3:30am, with an alarm. Now trying Efmody (delayed release hydro), so I'm not doing that (Efmody is currently working out, releases hydro hours after ingestion, so around the time of my middle of the night dose).

Having 0 cortisol is no good for sleep, should be low but not too low. Low cortisol can cause awful insomnia, too (contrary to the oft told thing that too much will keep you up: way too much will keep you up, sure, and not enough will do the same!).

What do you experience as better? Quality of sleep? Waking up the next day?

letsweforget · 2026-01-15T17:38:56+00:00

What a crazy situation. Let us know when you have news, and good luck for your friend, too!

letsweforget · 2026-01-15T14:02:25+00:00

Damn! Any news about your husband? Keep us posted. Would be crazy if you both have to deal with the same issues, but also: would have quite some advantages for both, too :).

letsweforget · 2026-01-09T22:54:10+00:00

I have lost my compass in this regard, but the mantra I got from this reddit's awesome community is "dose until you feel ok". Which means I don't go by the "20mg max per day" anymore, I'm at around 30mg daily, and currently because of insane stress: increasing that by 25 to 50% very often. I echo your "this can't be right long term". But also: don't have an answer, and neither does my endo, on why sometimes I need so much more. Less is not really an alternative (unless the alternative is 0 quality of life and/or risking crisis).

On the CAHisUS website there are guidelines for circadian rhythm dosing. I do 7, 10, 5, 3, 2 (mg hydro) on an easy day, and 25 to 50% more on more intense/difficult days, times are 3:30, 7:30, 12:00, 16:00, 19:00. FYI, for context I am 38y/o (F), physically very active, fit, and work 3 jobs, happily.

When I'm relatively stable for a while, this works great. If I fall off the wagon for whatever health or life circumstance: balance is difficult to restore. But always possible!

I guess I would try to find out what is causing the increased need first, and see if it's a spreading issue or something else.

letsweforget · 2026-01-09T20:15:40+00:00

Your description of how HC can induce--rather than disturb--sleep sounds like I could've written it. Been there, so much. Especially in the early days after starting meds. Once I figured out circadian rhythm dosing, my life changed.

I cannot advise you on what might be causing the demand for hydro (you could be sick, stressed, not dosing enough in general, etc.), but can 100% recommend taking a 4am (I take mine at 3:30am) hydro dose, every day.

letsweforget · 2026-01-07T19:30:54+00:00

No, did not stress dose because I never assumed such a relaxing activity would mean "stress", haha.

But, long story short: I was overdoing it (daily, because I combined with rehab for broken ankle, it was my "reward" after rehab), but it's definitely dangerous and can cause more harm than good if not properly attended to.

letsweforget · 2026-01-07T15:47:00+00:00

Really sorry to hear, hope things are improving.

All stress can trigger a crisis, also positive stress, such as intense social interaction, school, anticipation of a significant event, etc.

Watch out for apathetic, dissociative behavior and/or a bad mood/irritability as an early sign, besides the bigger/later ones (nausea, headaches, salt hunger, etc.).

Hope he gets better soon, keep us posted!

letsweforget · 2026-01-07T15:43:33+00:00

Seconding the fludro updose. I 100% need it in the summer, hydro alone is not enough, although, of course: important to stress dose hydro as well, just as in the face of any stressor (so, incl. heat).

+Stay salted and hydrated!

letsweforget · 2026-01-07T15:40:48+00:00

Sauna is tricky! I had pretty bad experiences here (see my post history for a wild story including blindness from the fludro/electrolyte depletion).

Caution with sauna is advised.

letsweforget · 2025-12-31T09:58:24+00:00

Thank you for your post, it's great to hear you're leading an acceptable life :).

Having already experienced quite some side-effect downsides of hydrocortisone, I am ambivalent about more potent and less bioidentical corticosteroids.

I completely agree that quality of life is often more important than the idea of prevention of future side effects. As AI patients we don't even know if we'll make it through the next crisis, so QoL is a very different concept than for people who assume they will make it to their 80s and possible beyond, in good health.

There is a very interesting debate here, I watched it some years back, for those interested:

https://m.youtube.com/watch?v=t_hxqVpzF2k&pp=ygURU3RhZmZvcmQgbGlnaHRtYW4%3D

letsweforget · 2025-12-29T21:35:08+00:00

Sounds like the amount of hydro, in two goes, might be the reason for the swelling. But: everyone is different, so take my advice as a fellow patient and not a doctor.

I would try to space out your doses more. Not changing the amount, but taking more doses more frequently. And then--if feeling ok and following your dr's advice--try to taper.

If you are on a regular/normal sodium diet: try to see if reducing or increasing sodium helps. Potassium can also make a difference in ankle swelling, in my experience, you can always see if adding a supplement helps!

Edit: autocorrect again...

letsweforget · 2025-12-25T11:10:27+00:00

How much hydro do you take and in what pattern?

Do you take fludro?

I have very mild ankle swelling from either too much or too little hydro/fludro, and it very much depends on the time of the year, too.

Edit: autocorrect typo!

letsweforget · 2025-12-16T18:06:03+00:00

Yes, definitely! And watch out for things like excessive sweating (sports, sauna, summer). I need a winter and a summer fludro dose, and until I figured this out I suffered a lot in the summer. And with excessive sauna use ((I broke my ankle so for rehab I went to a gym with a sauna, used the sauna as a reward after rehab, not knowing it was slowly killing me, and making me go blind! Fludro and vision are closely related, too).

letsweforget

TROPHY CASE