Community Conversation => Intersex talk => Topic started by: V.as.in.Victor on September 20, 2025, 11:21:35 PM Return to Full Version
Title: Congenital adrenal hyperplasia impacts as an adult?
Post by: V.as.in.Victor on September 20, 2025, 11:21:35 PM
Post by: V.as.in.Victor on September 20, 2025, 11:21:35 PM
I have non-classical 21-hydroxylase deficiency, a type of congenital adrenal hyperplasia (CAH). So, I was intersex, hormonally at least, even before I started testosterone. I stopped treatment for CAH when I realized I was trans, because the only reason I'd ever known for getting treatment was to prevent masculinizing changes. I'm realizing now that I don't know what other impacts there may be on my body (and mind) from having untreated, non-classical CAH. Does anyone have any info on the subject, beyond that which can be found through internet searching? I'm mostly concerned that I may not be creating stress hormones correctly, and that might be responsible for other problems.
Title: Re: Congenital adrenal hyperplasia impacts as an adult?
Post by: Lori Dee on September 21, 2025, 09:36:02 AM
Post by: Lori Dee on September 21, 2025, 09:36:02 AM
Quote from: V.as.in.Victor on September 20, 2025, 11:21:35 PMI have non-classical 21-hydroxylase deficiency, a type of congenital adrenal hyperplasia (CAH). So, I was intersex, hormonally at least, even before I started testosterone. I stopped treatment for CAH when I realized I was trans, because the only reason I'd ever known for getting treatment was to prevent masculinizing changes. I'm realizing now that I don't know what other impacts there may be on my body (and mind) from having untreated, non-classical CAH. Does anyone have any info on the subject, beyond that which can be found through internet searching? I'm mostly concerned that I may not be creating stress hormones correctly, and that might be responsible for other problems.
I do not have any experience with CAH, but my suggestion would be to consult with an endocrinologist who is familiar with transgender/intersex medicine. They would be able to do some blood tests to check hormone levels, including cortisol (stress hormone), to see if your body is making or maintaining good levels. By being open with them about your symptoms, they may be able to pinpoint any causes and recommend treatment. By choosing an endo familiar with trans and intersex conditions, they will not jump immediately to treating the CAH directly, but can customize your treatment to prevent demasculinization.
Let us know how it goes. Good luck.
Title: Re: Congenital adrenal hyperplasia impacts as an adult?
Post by: Susan on September 21, 2025, 01:53:26 PM
Post by: Susan on September 21, 2025, 01:53:26 PM
Victor,
I'm really glad you raised this. Non-classical 21-hydroxylase deficiency (NC-CAH) can affect more than the androgenic changes you've welcomed in transition, and it's wise to think beyond "preventing masculinization." Lori's suggestion is exactly right: an endocrinologist who understands both CAH and trans/intersex care can sort out what genuinely needs attention without undermining your testosterone regimen. (Sharing peer experience here—not medical advice.)
In NC-CAH, resting cortisol is often adequate, but some people have a blunted stress response. In real life that can feel like fatigue that spikes during illness or intense emotional/physical stress, slower recovery after being sick, feeling wrung out by things you used to shrug off, or occasional lightheadedness. Salt cravings or mild electrolyte quirks can occur, though frank salt-wasting is much more a classical-CAH issue. Your concern about "creating stress hormones correctly" is therefore reasonable and testable.
A good work-up typically starts with early-morning cortisol and ACTH, plus 17-hydroxyprogesterone; if there's doubt about reserve, an ACTH stimulation test clarifies how your adrenals respond under stress. The goal isn't to suppress androgens you want—it's to confirm that your stress-hormone system can cover you when life gets rough. Many adults with NC-CAH don't need daily glucocorticoids. Some do well with an individualized "sick-day" plan: short, low-dose hydrocortisone only for significant illness, surgery, or major physiological stress. That approach can protect adrenal function without fighting your masculinization. If you ever use steroids for more than a few days, tapering under medical guidance matters; long-term daily dosing can affect bone and metabolism—another reason to keep treatment as light and targeted as possible. Your exogenous testosterone should continue to drive masculinization even if adrenal androgens are briefly suppressed during stress-dose windows.
Between now and your appointment, it helps to note patterns—times you were unusually wiped out under stress, difficulty bouncing back after infections, dizziness when ill, or symptoms that cluster around high-stress periods. That context makes the visit more productive and helps your endo tailor testing—and, if needed, a simple plan that supports your health while honoring your transition.
You're asking exactly the right questions. Please keep us posted on what you learn; your experience will help others navigating the same intersection of CAH and transition.
Here's wishing you clarity and good answers soon.
— Susan
I'm really glad you raised this. Non-classical 21-hydroxylase deficiency (NC-CAH) can affect more than the androgenic changes you've welcomed in transition, and it's wise to think beyond "preventing masculinization." Lori's suggestion is exactly right: an endocrinologist who understands both CAH and trans/intersex care can sort out what genuinely needs attention without undermining your testosterone regimen. (Sharing peer experience here—not medical advice.)
In NC-CAH, resting cortisol is often adequate, but some people have a blunted stress response. In real life that can feel like fatigue that spikes during illness or intense emotional/physical stress, slower recovery after being sick, feeling wrung out by things you used to shrug off, or occasional lightheadedness. Salt cravings or mild electrolyte quirks can occur, though frank salt-wasting is much more a classical-CAH issue. Your concern about "creating stress hormones correctly" is therefore reasonable and testable.
A good work-up typically starts with early-morning cortisol and ACTH, plus 17-hydroxyprogesterone; if there's doubt about reserve, an ACTH stimulation test clarifies how your adrenals respond under stress. The goal isn't to suppress androgens you want—it's to confirm that your stress-hormone system can cover you when life gets rough. Many adults with NC-CAH don't need daily glucocorticoids. Some do well with an individualized "sick-day" plan: short, low-dose hydrocortisone only for significant illness, surgery, or major physiological stress. That approach can protect adrenal function without fighting your masculinization. If you ever use steroids for more than a few days, tapering under medical guidance matters; long-term daily dosing can affect bone and metabolism—another reason to keep treatment as light and targeted as possible. Your exogenous testosterone should continue to drive masculinization even if adrenal androgens are briefly suppressed during stress-dose windows.
Between now and your appointment, it helps to note patterns—times you were unusually wiped out under stress, difficulty bouncing back after infections, dizziness when ill, or symptoms that cluster around high-stress periods. That context makes the visit more productive and helps your endo tailor testing—and, if needed, a simple plan that supports your health while honoring your transition.
You're asking exactly the right questions. Please keep us posted on what you learn; your experience will help others navigating the same intersection of CAH and transition.
Here's wishing you clarity and good answers soon.
— Susan