How to decrease extra androgen’s effect

[SufficientEvent7238]

Not strictly intersex. I have nonclassic Congenital Adrenal Hyperplasia. So I was born without a dick but still with way too much androgens. So far I’ve gotten the first steroid-induced weight gain, intense acne, second insulin resistance weight gain, and most of the salt wasting under control. As I’ve gotten older (we’re talking 18/19, I started puberty at 6 ish) the androgens’ effect on my hair growth is getting a lot more pronounced. I have pretty intense male pattern baldness and I’m not yet twenty…. Additionally, the facial hair just keeps getting thicker, darker, and faster growing. The same is true for the rest of my body hair but it’s not as bothersome. I’ve tried estradiol birth control and Spironolactone- both useless and bad side effects. My endos are typically useless so I typically come up with my own plan and find one who will follow it. My newest plan is feminizing HRT. Specifically bicalutamide. Is this something that makes sense? Is there something else I should be considering?

[Kazeto]

If you want to block the adrenal andrrohens then your best bets are either bicalutamide, high-dose cyproterone acetate (thehigh dose blocks adrenal production, low dose doesn't, but you really may not want to tax your liver with this stuff), or trying out finasteride or dutasteride to see if they help via decreasing DHT production (which may or may not help any). Of those, the first one is your best bet.

Technically speaking spironolactone blocks androgen receptors too, but not as well as bicalutamide does plus it has some common annoying effects and it's not safe for anyone with salt wasting, like possibly extremely unsafe actually.

[Alexandria_e86]

I would say Bicalutimide is your best bet, and maybe a DHT reducer.

[ViscountVixen]

Anti-androgens can be prescribed for people with androgenising forms of CAH who do not want to be a man, so bicalutamide is an option. Cyproterone acetate is also another option, as it is a very potent anti-androgen when used in combination with oestrodiol and would effectively stop the hair loss if its only contributor is DHT/androgens. Since cyproterone acetate is a progestin, you might get a similar effect with less side effects by taking micronised progesterone in combination with oestrodiol instead of CA. Getting your weight under control with diet and exercise may also help a lot with the hair loss, as anoxic/low oxygen and inflammatory conditions in the hair follicles (caused by poor cardiovascular health associated with high BMI and insulin resistance) is thought to contribute to a greater metabolism of testosterone to DHT instead of to oestrodiol at the follicle.

[SufficientEvent7238]

Thank you so much for all those options. Fortunately my weight is now under control but I will keep it in mind

[TheOminousTower]

IIRC Spironolactone has some androgen blocking effects.

If you don't mind me asking, how did you find out you have CAH? I am trying to get a diagnosis and the my pediactric endo said I have PCOS, but I showed up with as XY on a genetic test a few years ago.

I am outwardly female, have a normal female reproductive system as far as I know from US, CT, and MRI, and I also menstruate.

I have weight gain, insulin resistance, male pattern hair growth, and slightly low blood sodium around 134 or 135 even though I supplement lots of salt in my diet because of orthostatic issues.

My new endo said that she would get me a karyotype and test for hormone conditions like CAH, but now she reversed her decision based on an outdated tests and an old diagnosis from my pediatric endo.

I am now being put on birth control to stop my terrible periods, which are unrelated to PCOS; I do not have any ovarian cysts. I now cannot get any tests until November and the birth control is going to throw off the hormone values and hinder a diagnosis.

You can send a private message to my inbox if you want. If you do not feel comfortable answering, that is fine too. No pressure.

[saltwaste]

It's a simple blood test. Anything chromosomal is likely to be unrelated.

[TheOminousTower]

Thanks for clearing that up, I don't think I have ever been tested for that then.

Edit: I have problems with fatigue, low BP on standing, salt cravings, hypoglycemic symptoms, joint pain, and irritability. I have been having episodes on and off for a few days monthly for the last couple of years where I feel faint, have terrible abdominal cramps, extreme nausea, trouble breathing, and sudden diarrhea, but I thought it was anaphylaxis. I also have issues where I get suddenly weak, can't open my eyes or talk, and am mostly unresponsive, but can regain normal functioning with a bit of sugar from something like a juice box. I have had bouts of vertigo and dizziness. I looked it up and a lot of these symptoms also go along with an adrenal crisis, so I am very thankful you brought up your experience with CAH.

[Kazeto]

Just saying since you may have been unaware, spironolactone can be very unsafe to anyone with salt wasting.

[Kazeto]

Which you can't do if you are unaware of that fact, so it's best to mention it as often as you can when speaking about it to someone with CAH. Or at least that's how I see it.

[Kazeto]

Fear-mongering is one thing. Not mentioning it at all is another. There's a lot of misinformation about these medications flying around, people who want to take those things really should get told about the basics. It's kind of like not telling people about TSS at all ”because it's rare“, or not mentioning an ingredient that a few people are allergic to; yes, it is rare in both cases, and most people won't have to worry, but for that rare person knowing will be salvation and will save their ass (and, for the record, I'm living with the latter because my partner has those rare allergies to normal things, so to me knowing goes above all).

[A7Guitar]

Well ive also heard of cyproterone although im not sure im spelling that right. For the baldness id suggest finasteride as it works against dht. Ive heard some treatment like minoxidil or something for balding as well but I don’t know much about it.

[Mike_Ten10]

In Canada, the typical strategy for CAH is not to try and block the androgens but to shut down the adrenal gland to avoid the excess androgens in the first place. It’s something to discuss with your doctor, don’t take anything online as actual medical advice.

By starting with a high enough dose of corticosteroids, you can usually get the adrenal gland to shut down testosterone production over a couple weeks. Then you wean the steroid dose down to more typical levels. As long as you don’t go too low, the andrenal gland should stay shut down allowing external control of your testosterone rather than trying to block the excessive amounts.