#addison's isn't intersex tho

[intersex-support]

hi! im sure you get sick of getting this but i need some help as im questioning intersex after many years and lots of research. specifically im question if i have swcah. ive had pots symptoms for as long as i can accurately recall and am close to constantly in some level of adrenal fatigue, im always craving salt and having electrolyte imbalances as well as feeling dehydrayed easily and having awful circulation.

physically, i had a lot of early growth spurts and was one of my tallest classmates, but now as an adult im barely average, about as tall as my dad who is kind of short for his circumstances. ive been growing facial hair since middle school, and now that i identify as some? flavor of trans masc? almost everyone ive met in recent years asks me how long ive been on T, based on my voice and amount of face and body hair. ive never in my life had access to T, i havent started it, and people are genuinely shocked by it.

[possibly tmi trying to be medical]

i also absolutely have clitoromegaly, thats another reason partners as well have asked before if i have been on T, as well even growing up and before i had any concept of what intersex conditions were, i knew there was something off there and i would awkwardly (like a very small child) tell people i *actually* had, um, "both" when i was gendered as a kid, until i got told by my parents to stop because i was wrong.

final thing probably: i had to get a full physical at 11, including genital physical, and there was a point that my mother was pulled aside and whispered something that she never told me no matter how much i asked. ive been growing increasingly worried lately that it was related to an intersex condition in someway, even if not using those terms, but since im no contact i cant ask now. sorry, i know that one is anecdotal, so feel free to ignore it.

i just want to know why i am the way i am

hi! again! i forgot to mention that i started puberty around 10-11 and ive never had a very normal cycle, sometimes it would be almost normal for a few months then i would go months without anything again, and eventually a really short but really intense, painful, heavy cycle after so long of nothing, its always been like this for me. 2/2

Hey anon!

So, I've done some research to answer this question but I am not an expert on salt wasting CAH and def would reccomend checking things with a doctor if possible. It defintely sounds like you have a lot of symptoms of CAH. Having clitoromegaly, growth spurts but now mostly average, having body hair, the irregular periods--all of those things really stand out to me as symptoms of CAH, and also especially the doctor keeping something secret from you, cause that happens to so many intersex kids.

What I'm less certain about is if you could have gone this far into life without being diagnosed with salt wasting CAH. I know that newborn screening for salt wasting CAH started in the 1980s, but I entirely believe it's possible that it could have been missed, or wherever you were born didn't screen you, or something like that. My understanding, however, is that salt wasting CAH is life threatening if not treated and I'm wondering if it is possible that you could have gotten into adulthood without ever going into adrenal crisis. From everything I've read, it seems like salt wasting CAH is usually diagnosed in childhood because people with salt wasting CAH will go into adrenal crisis without treatment. Honestly, the only way I really think that you could have salt wasting CAH is if you had gone into a salt wasting crisis while you were a newborn but it was treated, and it was hidden from you. It sounds like there's a complicated relationship with your mother and already a pattern of hiding some medical info from you, so I suppose it could be possible that it happened but the info is not in your medical records. Have you ever been on hydrocortisone, prednisone, or dexamethasone long term, as well fludrocortisone? I'd say only if you have been on those medicines long term and had salt wasting crises, that you could possible have salt wasting CAH.

However, what I think is more likely is that you have a variation of CAH that is not salt wasing and also not NCAH. My first guess would be that you have simple virilizing CAH, which is still considered "classical CAH" but is without salt wasting crises. With SV CAH, people usually have a less severe aldosterone deficiency. This means that you might still have symptoms like hyponatremia (low sodium), hyperkalemia (high potassium), hypoglycemia, dehydration, and could also maybe even cause your poor circulation. Usually, this doesn't progress to the point of salt wasting crisis and is more mild than swCAH, but is generally more severe than NCAH. Besides sv classical CAH, there are also rare forms of CAH caused by defienciencies in other enzymes, which have a wide variety in presentations of symptoms.

Another thing that I just learned about is CAH X, which is a variation of CAH that's comorbid with EDS. If you also have Ehlers-Danlos syndrome, it might be worth looking into. With CAH X, there's a specific genetic cause that causes EDS, CAH, and most people are also comorbid with POTS.

Also, there is a chance that you could just have more severe symptoms of NCAH. I just read a study that says 1/3 of people with NCAH have a cortisol insufficency. Cortisol insufficency can also cause weakness, fatigue, dizziness, electrolyte imbalance, low sodium--so there may be a chance that you have NCAH and a more severe cortisol insufficency. Anecdotally, a lot of people with NCAH have POTS comorbid (I do as well!) and there really hasn't been a lot of research on NCAH and POTS. It looks like there might be more of a connection between NCAH and adrenal insufficency then previously thought, but there isn't a lot of research done on NCAH. I read another study talking about how a lot of research papers do not specify whether they include NCAH in their numbers of people with CAH.

Basically, I think that it is unlikely that you've made it to adulthood without getting diagnosed with salt wasting CAH, because salt wasting CAH is basically life threatening if untreated. It is more likely that you have classical simple virilization CAH, a rarer subtype of CAH, or NCAH with severe symptoms.

Please feel free to ask if you have any other questions, and good luck!

-Mod E

#asks #actuallyintersex #cah #ncah #cah x #also: if you haven't ruled out Addison's disease you def want to look at that #bc that's the other main adrenal insuffiency thing #addison's isn't intersex tho #but still adrenal