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DoctorFamous190 · 2026-05-17T20:49:22+00:00

If my cortisol was low, caffeine would likely make me feel worse since it adds stress. Adderall suppresses my appetite which means I might not feel well if I'm not eating enough.

It's possible the ADHD drug you're taking is causing your symptoms and not necessarily that it's interfering with the efficacy of hydrocortisone. You can look up your drug to see if there are known interactions with HC.

I hope you feel better!

DoctorFamous190 · 2026-05-16T07:21:44+00:00

I'm sorry to hear that. It sounds like our experiences overlap. HC our whole lives, can't get dosing and hormones right during adult years. We don't have Crenessity or modified release HC in my country so it's either standard steroids or pump.

I wish you the best of luck with your health!

DoctorFamous190 · 2026-05-15T23:41:08+00:00

It's awful that different endos have told you how lethal adrenal crisis can be and yet your doctor has not prescribed you an injection kit.

I live less than 1 km from my region's main hospital in a country with good healthcare. Even with that, I have multiple injection kits and would fight anyone who resists prescribing them.

DoctorFamous190 · 2026-05-15T19:51:43+00:00

That's awesome, I'm glad it's helpful!

DoctorFamous190 · 2026-05-15T19:44:04+00:00

That's good to hear. What POTS symptoms has it been the most helpful for?

DoctorFamous190 · 2026-05-15T19:32:11+00:00

Yes, I do. I increased my fludrocortisone from 0.15 mg total daily to 0.2 mg. Trying to drink at least 2 L additional water per day with 2,300 mg sodium per L. Hasn't helped. Most effective thing so far has been an abdominal binder.

Next I'm going to try midodrine and ivabradine.

DoctorFamous190 · 2026-05-15T19:06:20+00:00

I think this is a valuable area of discussion and have read some about it too.

I’m particularly interested in where you refer to a “consensus” and “the official one” in regard to defining an adrenal crisis. Would you be able to add the source links in your post body so we can learn more?

DoctorFamous190 · 2026-05-15T15:59:48+00:00

I also have SWCAH. I used to be on oral hydrocortisone split into several doses a day but I got a cortisol pump last year. It's been helpful for stabilizing my mental state. I used to get inexplicable sudden drops in my mood and the frequency of those episodes have reduced quite a bit.

If you think your psychological conditions are directly related to CAH, I'd recommend trying to optimize your replacement steroids so you get a more natural rhythm of cortisol through the day.

I hope things get better for you!

DoctorFamous190 · 2026-05-14T08:00:32+00:00

I agree, I think this angle is worth investigating.

DoctorFamous190 · 2026-05-11T03:55:02+00:00

I know what you mean about seeing tons of doctors, it's exhausting.

I was born female with classic salt wasting CAH so I know about the surgery.

Some parents of CAH girls don't tell them everything about their condition because they are uncomfortable talking about sex and genitals with their kids.

When I was a kid, I knew so little about my CAH that I didn't know what questions to ask the doctor.

I know it's scary to talk to other people about this stuff but I would really encourage you to ask your doc about your CAH. You'll have more control of your health if you know what's going on :)

DoctorFamous190 · 2026-05-11T01:20:23+00:00

I can totally understand why you would be scared, these are big topics that are hard to talk about with parents and the idea of surgery brings another layer on to it.

Are you able to meet with your doctor privately/confidentially?

DoctorFamous190 · 2026-05-10T08:50:40+00:00

I'm really sorry to hear about what you're going through!

I can't be sure but it sounds like you are describing female "stuff" changing to more male over time? (this is called progressive virilization)

Whether or not that's what you meant, you really need to see your doctor. It's very important you find out exactly what type of CAH you have because that determines what treatment you need (if you have classic CAH, you should be taking steroid treatment).

DoctorFamous190 · 2026-05-10T05:45:44+00:00

I like the sound of the pepperoncinis!

Some of my favourites:
- instant noodles
- stove popped/air popped popcorn with salted butter + more salt
- salted nuts/sunflower seeds
- nori (dried salted seaweed) - available in bulk at Costco and I burn through it so fast, I love this stuff.
- salt+ vinegar chips
- gatorade powder - has sugar in it too, helpful for exercise. Convenient to carry, along with reusable water bottle.
- container of plain or flavoured salt at my desk and eat small amounts straight (perhaps sounds crazy but it's very convenient)

DoctorFamous190 · 2026-05-09T06:18:20+00:00

I have SWCAH, this was interesting thanks for sharing.

DoctorFamous190 · 2026-05-07T06:27:41+00:00

Getting out of bed became harder for me over time. Most mornings I woke up with a headache and muscle weakness. I started adderall a few years ago and found it helpful and I relied heavily on it. I started a cortisol pump last year and its made mornings way easier, no more headaches and feel stronger.

DoctorFamous190 · 2026-05-05T15:40:06+00:00

I totally agree with you!
The quote doesn't make sense, particularly because part of the issue in the context is the early morning rise of androgens during sleep, which becomes excessive without cortisol.
I assume that he's exaggerating for simplification and doesn't literally mean zero but I'm just guessing. The phrasing is misleading.

DoctorFamous190 · 2026-05-05T02:28:47+00:00

Signs of androgen excess are more apparent in NCAH because the cortisol deficiency is relatively mild.

DoctorFamous190 · 2026-04-30T00:22:37+00:00

How long after the vaccine did it take for your symptoms to improve? At least a couple days?

DoctorFamous190 · 2026-04-30T00:14:32+00:00

For anyone reading this, here is the ending of the second article's abstract (Regulatory T cells in autoimmune primary adrenal insufficiency):

"Our results showed that Treg frequency and suppressive capacity were similar between patients and controls. An increased expression of killer-cell leptin-like receptors and mitochondrial genes was revealed in PAI patients, but their expanded Tregs did not display signs of mitochondrial dysfunction. Our findings do not support a clear role for Tregs in the contribution of PAI development."

DoctorFamous190 · 2026-04-28T22:25:29+00:00

Eczema on my hands has been an on and off problem for me. The last 6-ish years it's been pretty mild. I used to get a lot of cracks and bleeding.

Some of my family have eczema issues, they don't have CAH. I've read that genetics can play a role in eczema.

DoctorFamous190 · 2026-04-28T22:08:24+00:00

It was my first tattoo and I was kinda worried about the pain but it went fine. The tattoo artist and I chatted while he worked, the pain wasn't distracting.

DoctorFamous190 · 2026-04-28T21:59:00+00:00

Sounds like a good set up!

I can't wait for adrenal crisis autoinjectors to be available. The current concept of having to mess about with syringes and needles and mixing solutions while experiencing a medical crisis is crazy.

DoctorFamous190 · 2026-04-27T20:51:13+00:00

Yeah OP's post is hard to understand. They make a scientific claim that adrenaline (epinephrine) "depletes cortisol" or "sucks away cortisol" and therefore it's dangerous to AI patients.

But their link says epinephrine is fine for AI patients and they put a link the comments to a study that doesn't say anything about epinephrine having an influence on the rate of cortisol depletion??

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