r/NCAH

Hee everyone I’m from Morocco and I have Classic CAH, I identify as a transman
I’ve never met anyone with the same condition so I’d really love to connect with others who understand what it’s like
One thing I’ve been struggling with is dating
I find it really difficult to find a girl who’s open to dating a transmen and sometimes it feels very lonely
Has anyone else had a similar experience? How did you deal with it?

I’ve been on 10mg hydrocortisone when I wake up and 5mg at night since October 2025 (8 months) for 3-beta NCAH. It’s improved my androgen levels but I haven’t noticed any other improvements. I’ve gained weight, retain water, have increased appetite, and I think it might be affecting my mood. I never had severe acne or hirsutism to begin with, so it’s not like it’s helping that. Is it safe to taper/is there risk of adrenal crisis or adrenal insufficiency with an 8-month physiologic dose of hydrocortisone? How many mg do I taper by each week?

TLDR; Is it safe to taper off of 15mg hydrocortisone/day after 8 months of taking it, and how do I do it? (My endocrinologist just left my dr office and barely understands this condition in the first place).

hello, i am not newly diagnosed but i did finally find an endo willing to treat me. last one refused to treat my low cortisol (like. out of range low. 3.2), only offering spiro.

i am audhd + eds, in the process of genetic testing but its cleds or heds most likely. my biggest struggles are fatigue, brainfog, chronic pain and weight gain. the only medication i take is vyvanse.

i would just like some perspectives on whether or not treatment made an incredibly big deal for you or not, if its worth trying steroids and if that greatly improved fatigue and libido and brainfog or if the tradeoffs werent worth it. im very worried about weight as well, but considering the EDS the muscle loss and joint/skin weakening is a terrifying concept for me.

im also quite honestly debating starting testosterone for gender reasons but im curious as to whether or not this might improve or worsen symptoms. ive seen some studies where its helped.

thank you in advance.

Buongiorno, scrivo per mia figlia, menarca a 12 anni, da allora cicli più o meno regolari, ma nell'ultimo anno (in concomitanza con assunzione di psicofarmaci) ha avuto pesanti irregolarità mestruali, flussi lunghissimi, oppure che mancavano per mesi. Portata da una dottoressa che lavora in un importante reparto di endocrinologia e ginecologia pediatrica a Pavia le ha fatto fare ecografia regolare, al che la ginecologa voleva darle la pillola, estroprogestrinica ma prima le ha fatto fare decine di analisi del sangue molto specifiche, ed è risultato che gli androgeni sono leggermente alti quindi vogliono farle l'acth test.

Io non sapevo NIENTE di questo test, non lo avevo mai sentito nominare (sebbene sua sorellina sia in cura in endocrinologia per deficit GH e abbia fato una marea di analisi), e anche ora non posso dire di aver capito cosa dovrebbe vedere questo test.

Mia figlia a parte le irregolarità mestruali sta bene. A volte è stanca ma prende anche degli psicofarmaci e qui in Italia attualmente fa un caldo da non credere. Non ha peluria in posti strani, anzi è bionda e ha pochissimi peli sulle gambe, nessuno in viso, tranne ciglia e sopracciglia (normali), ha capelli folti e bellissimi, non è sovrappeso, Soffre di acne ma questo è comune in molti adolescenti, io mi chiedo se questo test non sia un po' un eccesso....

In ogni caso durante il test si sta male? Si hanno dei disturbi? Cosa deve diagnosticare? Se avessere un problema al surrene cose succederebbe? Ho troppe domande.

I'm looking for a bit of advice and support regarding side effects and starting spirolactone.

After being gaslighted by doctors for the past 3 years I'm really struggling with health anxiety. I've now been diagnosed with reactive hypoglycaemia, nccah and heds. Being dismissed about my symptoms for so long means that if I feel dizzy, breathless or woozy/faint it often triggers a panic attack.

I tried to start my spirolactone medication for hirsutism and hair loss last week, I took only one tablet and felt awful the next day which was freaking me out big time. I was still recovering from a bad cold that might have been covid so I don't know if that exacerbated it but I didn't take anymore tablets after that. I felt dizzy and faint, and had really bad nausea. I barely ate for three days as my stomach wouldn't stop churning. I was also really sleepy. I spent the next 5 days feeling like my blood sugar kept dropping and have had random bouts of wooziness and nausea.

I feel alright now and I'm not sure if some of these symptoms were covid or just anxiety. I was also really stressed that week as work was mental and im in the last 2 weeks of my masters degree. I'm not on hydrocortisone for the nccah. My endo seems to think I only have cosmetic symptoms.

I really want to get a handle on this because my hair situation is really awful, but I need to mentally get through the side effects without having panic attacks all day.

Please can you let me know your side effects experiences? How bad was it? How quickly did it improve? Was it worth it?

Thank you!

Hello everyone, my wife and I are trying to understand what is happening.

But my wife is losing patience and doesn't want to see new doctors.

Complicated story but half of the endocrinologists we see they don't know this pathology or don't want to see her before genetics ...

She has a

17hop Time 0 at 27.5ng/ml (83,22 nmol) and T60 >30 ng/ml (>90.78 nmol)

Cortisol t0 439 nmol t60 679 nmol

No androgen (but a lot of acne and a tiny hirsutisme maybe backdoor or cryptid version)

No libido ( but we have 2 kids, no problem during pregnancy)

Very tired after 18h30

Totally dead if she does some activity's (physical or social)

(And other funny stuff)

A lot of symptoms became more intense after she gave birth.

The last doctor we see (a professor from paris), tell us to do more analysis (a scanner of the glands) and after that to came to is hospital (so he is ok to see her and make an advance on this case)

But he said to us, that the symptoms can't come from the NCAHNC (my wife told him she has ADHD and chronical dépression)

He tell us "with this level of cortisol, the fatigue can't be correlated"

My wife is very angry, she don't want more analysis and tell me to stop

"I am just an handicaped, nothing can't go better! Look they told us I'm not sick !"

It's hard for her (and the family with the kids) because she truly believe to be not sick and just "crazy, broken..." (Again 27.5 17hop without synactene...

So my question is :

Do NCAHNC can make you tired ?

Can you have good cortisol in the morning, but being tired in the evening ?

Can treatment help about that ?

Thank you.

Please be sure that I know it's her body and her choice, but I know her and she prefers to do nothing because she is very scared. And I can't continue to see her crying from exhaustion if a médecine exists and can help her !

Hello , im curious if any mothers here who have NCAH had any trouble breastfeeding?

Im 3 weeks postpartum , in the first week i was breastfeeding just fine and the milk supply was great then suddenly as the days pass by i noticed that my supply decreased and i have to make him formula despite having him on my breast for a long time.

Milk supply is affected by cortisol, could the production of milk decreased cause of the stress of motherhood?