Back after a long time

[Sara Zeal]

Yes, I'm back. It's been what, something like five or six months since then?

A little reminder of who I am is in order I guess, though my newbie thread is still somewhere in here for those interested.

I'm still 24, as I was back then, and I finally got my karyotype result. I got it in early November 2006, after a 7 months and a week of waiting. So, according to this I'm 46,XY. I'm still female and identify as such, getting my result didn't change anything really, except narrow down possibilities.

I'm still on hormone replacement therapy and full-time as a girl, which is the only real way I can live anyway. I'll change my hormone regimen (as I'm currently on premarine and I'm told it's basically dangerous for no good reason, I'll probably get on 12 mg estrace from my current 7.5 mg premarine - note I do prefer pills to patches, creams or injections) and add a progesterone (since I have none now), but I've continuously had HRT for almost a year now.

From possibilities of XXY or similar variation, to maybe XX-male, it narrows down to either mild AIS or luck, which already were the two most likely options before too (as per my symptoms).

I thought I might be able to find a doctor or someone to direct me about it, on my own, but although I haven't done really extensive search, I still haven't found even the *kind* of doctor that could give me information. Or even really, what would I ask them for so they know what I'm talking about?

Any help on the topic would be welcome, and thank you in advance.

Sara

[Glenn]

Hi and welcome back,

I'd guess an endocrinologist might be a good starting point for you. A second guess would be an OB/GYN, but since you have XY chromosomes, they are probably going to be lost.

[Sara Zeal]

Hmm, well I do plan on seeing an endocrinologist...if I can ever get referred to one. Though I'm not sure an Ob/gyn would be able to help me as much as my genitals are male (with apparently nothing to set them apart from norm, I think).

Symptoms which pose me the premise of asking about the possibility of being intersex, which mild AIS is the most likely diagnosis, is that I have a very present and lifelong neoteny (being younger than I should), by symptoms. Basically, I looked mostly pre-pubertal before estrogen treatments, which began at 23 years and 9 months old.

I have records of height/weight that show me as rather normal as a baby (and I wasn't premature or overdue). I personally don't suspect surgery was performed, and if it was, then my mother was not informed (or is withholding the information), but I trust her on that. I don't remember my doctor visits with the pediatrician as a child, besides his name. He has since closed practice and died also...

Anyway, I've always thought on the premise of 'perfectly formed genitals' so it doesn't matter. I suspected it was wrong, even as a kid, but that I have no proof for.

By neoteny I mean that my development has slowed down over time, up to being very small/underweight compared to peers, in the very low percentiles of height/weight. I also looked to be about 25-30% younger than my actual age.

I had the beginning of a male puberty at 16, including a growth spurt and lots of acne. Nothing happened prior. I reached my final height maybe 2 years later, at 5'6", with a weight of 110 lbs. I still had what people call a 'baby face' afterwards, and was generally judged to be around 16-17 when my real age was 23.

I had none, and to this day, still have no development of armpit hair. I had relatively low (compared to males) body hair. I actually had no facial hair at all until about 20 years old, and even at 24 before starting estrogen therapy, had almost none (no shadow either).

Muscle development was zilch even with five years of manual labor jobs, that I felt compelled to do in order to survive (and provide some money for living expenses). I had no real qualifications to work elsewhere, but maybe I just didn't try enough to be hired elsewhere...I'd have wanted a job in an office, or in retail...but only warehouses would call me back...and some would fire me for inadequate strenght or speed for their standards. I wasn't a slacker, I just didn't have the body. Employers can tell you I did work hard, but it just wasn't enough it seems.

Weight gain didn't occur, waist didn't enlarge, I also remained small-framed, including a rather small chest and shoulders, hips in proportion to chest. Feet and hands are within female norm, fingers are slim. I always ate whatever I wanted and the work was demanding enough for it to produce muscle development, but it didn't (I didn't want the muscle development either), it also didn't produce fat development.

Voice dropped a tiny bit at around 16 or 17, and so I have a tiny (non apparent to the onlooker) Adam's apple. My voice is within androgeny, so it causes no issue when I use my 'normal voice'.

According to tests done before starting estrogen treatment, testosterone level was within normal values for a male (right in the middle of the range), and LH (luteinizing hormone) was also normal.

Gynecomastia did not occur to the best of my memory, though I certainly dislike the term. It implies growing breasts is a 'disease' or something. I prefer to say breast tissue growth. Anyway, prior to estrogen therapy it didn't occur, but within it, it did (so my response to estrogen is good I assume).

Infertility was never tried (practically) or tested (medically) and I saw no reason to test it (I'm virgin and certainly didn't see myself becoming a father for any reason whatsoever, even as a kid).

I'm not sure if those reasons are by luck alone (for a MtF transsexual) or an inherent biological condition. Luck seems unlikely, especially considering my three younger brothers are within the norm (they are 13, 15, 22) for their age. I have no sister to compare with. I just want to satisfy my desire to know just what it is.

Oh and for clarification, the karyotype done in March 2006, result in November 2006 of 46,XY, was done a small blood cell sample, so it might not be 100% accurate.

Sara

[Glenn]

Hmm, if your chromosomes are "male", have you had your testosterone level checked? Very low T level could cause a lot of your symptoms.

[Sara Zeal]

According to tests done before starting estrogen treatment, testosterone level was within normal values for a male (right in the middle of the range), and LH (luteinizing hormone) was also normal.

Quoting myself. Unless this was erroneous, my testosterone levels didn't point out to a problem with my gonads (which are no doubt testes if they produce such a level of testosterone), and the only possible explanation if either a resistance to said normal amounts of testosterone, or simply fluke...however fluke is sometimes discarded as such because it's easier to be lazy and dismiss it than to actually ascertain the flukeness (test to be more certain).

I mean by that, that doctors would simply 'find it normal' that what to all appearance was 'a normal boy' (chromosomes, genitals, gonads) had experienced no male puberty - some would simply try to enforce a virilizing treatment also...but I never identified as male.

Where can I go for answers if my hormone levels were normal, my karyotype 'normal male', and my gonads functional by virtue of the testosterone levels? Where do I go to test mild AIS outside of this? AR gene mutation is said to be verifiable in much less than 50% of MAIS cases...there must be another way?

[Glenn]

Sorry about missing the T line. End of term always trashes my three remaining grey cells. :rolleyes1
Not sure - it could be one of those things they can't prove directly, and can only infer that's the case.
Anyone else have better clue?

[ScarsUnseen]

Weird.. This sounds sooo much like me with only slight variances. I haven't had any tests though, but this thread is quite interesting. I pretty much could have typed this myself.