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26 Year old male with Androgen Receptor Insensitivty

Started by uninSTAAL, August 23, 2016, 03:46:05 PM

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uninSTAAL

Hello everyone - first post here.

My name is Kyle, I am 26 and I live in Massachusetts.

Let me start off by saying I'm not transgender - I was born male and was raised male. I simply cannot find another community with a focus primarily on AIS. Therefore, I'm sorry if this post is not 100% relevant to you all.

I have mild androgen receptor insensitivity - my body produces testosterone but the receptors are not very sensitive to it. My body tries to self-correct by producing 2-3x the normal amount of Testosterone but this only does so much and a lot gets converted into estrogen. As a result I was born with a small penis with hypospadius (urethra on underside instead of head) had this surgically corrected as a baby. At the onset of puberty I began developing female breast tissue and had it surgically removed (gynecomastia surgery). Both my cousin and uncle have my same condition (small variation in severity).

Ever since I knew about the disorder, I've been obsessed with "fixing" it. Why? Well, simply because I didn't feel confident and I was not happy with myself and the way I felt. Whether its societally driven, hormone driven, or mental, I'm not sure.

Regardless, I began scouring over medical journals and the internet to find a way of improving my situation. I found one study on the drug Tamoxifen (estrogen blocker for breast cancer patients) out of the Netherlands. I pitched my way into Mass General Hospital endocrine unit under one of the top endocrine doctors in the world. He had never really heard of the disorder or the treatment but was kind enough to try it with me.

Very little improvement under tamoxifen unfortunately. I was told testosterone replacement therapy would simply not be worth it since my body already had 3x the normal amount and the receptors were already overloaded. I theorized about using HCG which is known to stimulate Leydig Cell production the testes.

During this time, my wife and I were trying to conceive and ironically both had fertility issues. I had about 1 million sperm total and zero motility she has endometriosis.

HCG did not improve my sperm paramaters however we did IVF with ICSI and conceived!

She is due in February :)

Most recently I have been taking Arimidex (more common estrogen blocker for breast cancer patients).

Essentially, my low muscle growth, low sex drive, undeveloped male genitalia, low facial hair can mostly be attributed to my exccess estrogen in my body (Estradiol: 90+). Therefore, by blocking the estrogen from being received my body is more likely to receive the testosterone and take the traits from that signal.

As of 6 months in, im trying to nail the dosage but it seems to be doing something positive. I have more facial hair, more muscle definition, etc.

This is exciting news in the sense that Arimidex has the potential to be a game changer for many with my disorder and possibly Transgender people in general - I basically have a less severe form of it and thats why I'm not transgender.

sorry for giant wall of text - look forward to speaking with you all.
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Sno

Welcome to Susan's,

I'm sure a mod will be along soon with a welcome pack.

I'm sure you'll find support here, as many of the challenges that you have are faced. Its probably worthwhile having a look at the FtM and Intersex boards too.

Warmest

Sno
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Dena

Welcome to Susan's Place. We hear about Androgen insensitivity on the site with women who are XY chromosome and we also hear about the conversion of testosterone to estrogen in FTMs who have dosage issues. In addition it appears you may fall to the intersex category with the surgery you received at birth so I think you may belong on this site. MTFs often use a number of androgen blockers depending on the country they live in. In the United States, the most common one is spironolactone/aldctone which could be given in a reduced dosage to regulate your testosterone levels to a desirable level. Spiro has a number of side effects so it may not be the best option if the medication you have is working for you but it's something to keep in mind. The HRT section has a number of discussions about blockers should you be interested.  If there is anything we can help you with, let us know.

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Just Me Here

With AIS your options are partly limited (are you sure it's Mild AIS and not Partial AIS?).
Now first off, I'm not a qualified doctor so don't take my word on this, CONSULT YOUR ENDOCRINOLOGIST.
You could try looking for aromatase inhibitors (anastrozole, letrozole or exemestane) as well to reduce conversion of Testosterone into Estrogen.

I'm speculating here below, ask your endocrinologist:
Small amounts of Growth Hormone might give you a small amount of facial coarsening in terms of brow ridges and jaw, it might give you slightly more masculine facial structure if that is what you want but comes with a huge number of potential risks. (there's a condition called acromegaly - it might also raise androgen levels, but as your receptors are overloaded it might not do much)
Antigonadotropins might also do something, it would lower both your testosterone and your estrogen, but if your receptors really are overloaded to their maximum capacity then lowering your estrogen would be the only real effect.
A topical treatment of Minoxidil in some causes can cause localized hypertrichosis, maybe bring it up with your endo.


For body hair, every little helps... Selling the snake oil this time, maybe try castor oil and rosemary oil. There tends to be a lot of bold claims about this stuff that might not be true... but if it works for you then do it. I doubt it increases thickness (but maybe something to do with density of the hair)
Consider dyeing your body hair as well, henna for example is a great natural dye (brown variety, not the black variety which might give you contact dermatitis because of the PPD in it) - a darker appearance will make it more noticeable.
Carefully consider tattooing - some people tattoo their hairlines, you could get tattoos to look like stubble - be sure about this though as it's very hard to remove once it's in your skin
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uninSTAAL

Thanks :)

My most recent medication is Arimidex and I think it is working so far.

HCG caused a bit of prostate issues in terms of enlarged prostate so I am kind of waiting to ask my endocrinologist on the next steps.

He said he wants to maybe feature me in a study or something too.
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