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Congenital adrenal hyperplasia impacts as an adult?

Started by V.as.in.Victor, September 20, 2025, 11:21:35 PM

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V.as.in.Victor

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.
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Lori Dee

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.
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Susan

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
Susan Larson
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Susan's Place Transgender Resources

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V.as.in.Victor

I'm both thrilled and pretty upset that you have given me more information on this disease that I have than any doctor I've ever seen.  Thrilled to know and have you as a resource, upset because it feels like something I should have learned before this.

I'll see if I can find an endocrinologist who understands both CAH in adults and trans care.  I suspect there aren't many about, and I don't know what to do if it turns out there are three and they're all in northern Europe.

Lori Dee

Quote from: V.as.in.Victor on September 25, 2025, 10:39:57 AMendocrinologist who understands both CAH in adults and trans care

Check out UCLA.

Endocrinologists
If you are seeking care for complex hormone management due to existing conditions such as cancer, clotting disorders, and autoimmune diseases, or you would like to see a specialist in addition to your primary care physician, the UCLA Gender Health Program has a team of expert endocrinologists for your care.
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Susan

Quote from: V.as.in.Victor on September 25, 2025, 10:39:57 AMI'm both thrilled and pretty upset that you have given me more information on this disease that I have than any doctor I've ever seen.  Thrilled to know and have you as a resource, upset because it feels like something I should have learned before this.

I'll see if I can find an endocrinologist who understands both CAH in adults and trans care.  I suspect there aren't many about, and I don't know what to do if it turns out there are three and they're all in northern Europe.

Victor,
Your frustration is completely valid—and unfortunately all too common. The system often treats intersex conditions and trans care as separate silos, leaving people to stitch together information that should have been provided upfront. You deserved better guidance years ago.

There is some good news: access is slowly improving. Lori's UCLA suggestion is solid; their Gender Health Program includes endocrinology within a multidisciplinary team that routinely manages complex, gender-affirming care: UCLA Gender Health Program 🔗 [Link: uclahealth.org/medical-​services/gender-​health/our-​expert-​team/]. UCSF's program is another strong option with deep experience in adult trans care and endocrine management: UCSF Gender Affirming Health Program 🔗 [Link: transcare.ucsf.edu]. Clinic overview: UCSF Health – Gender Affirming Health Program 🔗 [Link: ucsfhealth.org/clinics/gender-​affirming-​health-​program/]. Mount Sinai integrates endocrinology within coordinated trans care in New York: Mount Sinai Center for Transgender Medicine and Surgery 🔗 [Link: mountsinai.org/locations/center-​transgender-​medicine-​surgery/] and Mount Sinai – Transgender Medicine (Endocrinology) 🔗 [Link: mountsinai.org/care/endocrinology/services/transgender-​medicine/].

For CAH-specific expertise and help navigating into adult care, Boston Children's runs a formal pediatric-to-adult transition service that consults with care teams and can guide referrals to adult specialists: BRIDGES Adult Transition Program 🔗 [Link: childrenshospital.org/programs/bridges-​adult-​transition-​program/]. More details: BRIDGES Programs & Services 🔗 [Link: childrenshospital.org/programs/bridges-​adult-​transition-​program/programs-​services/] and BRIDGES Resources 🔗 [Link: childrenshospital.org/programs/bridges-​adult-​transition-​program/resources/]. While pediatric-based, they regularly support transitions and can point your clinicians toward adult endocrinology partners.

If geography becomes a hurdle, many programs support telemedicine for parts of care—UCSF offers video visits for hormone management and related consults, which can reduce travel while you establish a plan: UCSF Hormone Therapy – Telehealth Info 🔗 [Link: transcare.ucsf.edu/hormone-​therapy/].

In the meantime, document patterns: how you handle illnesses, recovery time after infections, episodes of lightheadedness during stress, or stretches when you felt unusually wrung out. Those concrete examples make a consult more productive and help a specialist tailor testing and, if needed, a light-touch plan that supports your health without undermining masculinization.

You're advocating powerfully for yourself, and that will serve you well!
— Susan

Note: Please keep us posted on what you find—your experience will help the next person navigating this same intersection.
Susan Larson
Founder
Susan's Place Transgender Resources

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BlueJaye

Unfortunately, I don't have any additional information to provide, but I want to give you my best wishes. Intersex conditions can be maddeningly frustrating to figure. Most doctors do not have specific training in them, and a lot of us end up having to become amateur medical sleuths to find useful information. Hang in there.
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