Does Partial Testosterone Insensitivity mean Intersex?

[iceih]

Hello,

First of all excuse my English, I am from Argentina. 

I am a 41 years old man, who never felt comfortable with his body. I do not feel like a man nor woman I feel just different. Same happens with my body, these days it looks more man than woman but it used to be very androgynous and some parts still are (like my voice). In the last few years I discovered the intersex condition, when I read about it, I realized it describes my life a lot. I asked help to a therapist and started asking doctors and searching for old pictures trying to see my past beyond my memory. A doctor said I am partial androgen insensitive, but said nothing explicit about intersex. I would like to know your opinion if I truly am or not.

I made this summary with things I have found:

* I was born with no testicles in the scrotum.

* At 4 years old, I received testosterone to develop my testicles and pull them into scrotum, only one descended, the other failed, the doctor discovered it was atrophied.

* I had surgery at 2 years old because of an inguinal hernia.

* I was circumcised because of phimosis at 9 years old.

* In the pictures, my penis size looked normal at birth, but very small later, as if it did not grow with me. Example: just before circumcision it was 1 inch (measured with my own finger, so not sure the exact size).

* I was diagnosed with varicocele.

* Until 12 I looked androgynous, when puberty started I looked a bit more girly due to the way I was gaining fat and how it distributed. I also developed gynecomastia.

* Suddenly at 15 my face factions changed to masculine, and gynecomastia retreated into what the doctor names fibrous lipomasty. This is when I suspect I received testosterone again.

* At 17 my beard grown up and I started to loose hair.

* Sometime between 15-17 years, my penis developed "inside the normal range".

* At gym I could not do same exercises as the other kids. My strength and endurance was lower and flexibility higher. Trainer just said that I did not trained hard enough.

* A new doctor diagnosed me with muscular atrophy.

* According to this new doctor, he says my current testosterone level is low but inside normal ranges and my estradiol is high but not enough to need any treatment (39ng when maximum is 37ng), that's when he explained me that I have partial androgen insensitivity, and that's why I do not develop muscle, very few body hair, some curves and uncommon fat distribution, specially in my chest.

About the checklist in this thread:
https://www.susans.org/forums/index.php/topic,187988.0.html?PHPSESSID=tgup8e029lm3047q10l9gap926

Yes * long, slender arms and legs
Not now, but before 15 yes * feminine looking facial features
Yes * legs significantly longer than the height of your upper body
Yes * an armspan more than 3cm greater than your height
Yes * sparse or very fine body hair
Mostly * a female pubic hair pattern (like an upside down triangle and confined to the pubic area)
Yes * an inability to build upper body muscle
No * gynecomastica
Possible (big angle but I do not know how to measure it) * a female carrying angle
Yes * a female digit ratio

Thanks a lot for reading this, and I would feel very happy to know your opinion.

[JLT1]

Hi,

Depending on the severity, you could be classified as intersexed.  However, what does a label mean?  You have partial androgen insensitivity.  Its a legitimate condition regardless of the name for an arbitrary cutoff.

Now you know. 

Hugs

Jen

[iceih]

Hi,

Depending on the severity, you could be classified as intersexed.  However, what does a label mean?  You have partial androgen insensitivity.  Its a legitimate condition regardless of the name for an arbitrary cutoff.

Now you know. 

Hugs

Jen

Thanks for the answer, I agree the tag is not so important now to I understand my body in a better way. But I think the tag can be very helpful as a way to find more people like me. I usually feel like nobody understands me, and finding someone to talk may be good. My therapist is not optimistic in finding anybody because even finding someone with the same androgen insensitivity level does not mean s/he has received the same treat and treatment, which in her opinion was my real problem.

[HughE]

In light of your age and the symptoms you describe, I'd say it's highly likely that you were prenatally exposed to an artificial estrogen called DES. Up until about 1980, DES was widely used in pregnancies where the mother was thought to be at risk of miscarrying (not just in the US but most of the developed world). Some of the typical symptoms include undescended testicles, inguinal hernia, varicoceles, micropenis, congenital hypogonadism, eunuchoid habitus and gender dysphoria, so you tick all the boxes!

I'd say it's unlikely to be AIS, firstly, because AIS is relatively rare (a lot rarer than DES exposure). Also, you say you developed facial hair, so you must have a reasonable androgen response for that to happen. A total T that's below normal and E2 above normal is one of the things that seems to very commonly happen with DES, whereas with AIS, total T will typically be at normal or above normal male levels. You haven't said what your SHBG is, but my guess is that it's higher than normal too, and the combination of total T being lower than normal and SHBG and E2 being higher than normal, is probably what's causing you to develop the symptoms of hypogonadism, even though nothing looks wildly out of range as far as lab reference ranges are concerned. That's what's happened to me, and to a couple of other people I've chatted to about blood work who also have suspected DES exposure.

Due to the way DES was generally prescribed in doses that progressively increased as the pregnancy wore on, what appears to have happened with most of the biologically male people who were exposed to it, is that they had predominantly male development during the first trimester, but predominantly female development during the second and third trimesters. The first trimester is when your genitals and all your physical sexual characteristics develop, whereas the main thing going on during the second and third trimesters is brain development. The result is that it's tended to produce people who look male enough to have been assigned male at birth, but who have female brains. There does appear to be quite a lot of variation though, for instance some people have ended up with much worse physical effects than others (my genitals are relatively normal male, apart from a hydrocele and inguinal hernia). The effects on the brain can be quite variable too, in my case I seem to have some of my brain development occur as female and some as male, so, psychologically, I'm not really one gender or the other, but kind of a mixture of the two. Most of the people I've chatted to appear to have had a lot more female brain development than me though.

There's a thread about DES here:
https://www.susans.org/forums/index.php/topic,84224.0.html

[iceih]

In light of your age and the symptoms you describe, I'd say it's highly likely that you were prenatally exposed to an artificial estrogen called DES. Up until about 1980, DES was widely used in pregnancies where the mother was thought to be at risk of miscarrying (not just in the US but most of the developed world). Some of the typical symptoms include undescended testicles, inguinal hernia, varicoceles, micropenis, congenital hypogonadism, eunuchoid habitus and gender dysphoria, so you tick all the boxes!

Thanks for the information, I did not know about DES, it is possible, my mother had a very hard pregnancy, most of the time on bed and taking medicines.

I'd say it's unlikely to be AIS, firstly, because AIS is relatively rare (a lot rarer than DES exposure). Also, you say you developed facial hair, so you must have a reasonable androgen response for that to happen. A total T that's below normal and E2 above normal is one of the things that seems to very commonly happen with DES, whereas with AIS, total T will typically be at normal or above normal male levels. You haven't said what your SHBG is, but my guess is that it's higher than normal too, and the combination of total T being lower than normal and SHBG and E2 being higher than normal, is probably what's causing you to develop the symptoms of hypogonadism, even though nothing looks wildly out of range as far as lab reference ranges are concerned. That's what's happened to me, and to a couple of other people I've chatted to about blood work who also have suspected DES exposure.

Only Free Testosterone is low, Total Testosterone is normal same as SHBG, but the new doctor is not very trustfull with the old tests, he asked me a new one I do not have yet.

The result is that it's tended to produce people who look male enough to have been assigned male at birth, but who have female brains. There does appear to be quite a lot of variation though, for instance some people have ended up with much worse physical effects than others (my genitals are relatively normal male, apart from a hydrocele and inguinal hernia).

I m not sure about this part, I have been asigned male in the birth certificate but I think I was grown up as female until 3 years old, I think this due to a few pictures I found.

The effects on the brain can be quite variable too, in my case I seem to have some of my brain development occur as female and some as male, so, psychologically, I'm not really one gender or the other, but kind of a mixture of the two. Most of the people I've chatted to appear to have had a lot more female brain development than me though.

I feel very similar to you, a mix of genders.

There's a thread about DES here:
https://www.susans.org/forums/index.php/topic,84224.0.html

I will read it.

Thanks again for your help and time.

[Serenation]

Hi, pais in an intersex condition, there are tests you can have for it. Like taking anabolic steroids and seeing how the shgb reacts.

"Androgen insensitivity syndrome is the largest single entity that leads to 46,XY undermasculinization."

[HughE]

Here's a list of problems commonly associated with DES exposure, taken from a document written by Dr Scott Kerlin, the scientist who carried out the 2005 DES sons study.



As you can see, from what you say you appear to have several of the symptoms mentioned there (and hypogonadism, the "eunuchoid" body structure and gender dysphoria are also symptoms, mentioned later on in the document).

With T levels, you need to watch out, because what counts as "normal" testosterone as far as lab reference ranges are concerned, could be well below normal for someone your age. Lab reference ranges are based on a random sample of blood tests taken at that laboratory, but people who have blood tests aren't usually normal, healthy people. They tend to be mostly sick or elderly, and have lower than normal T levels as a result.

As part of the Framingham Heart Study, they measured the T levels of 456 normal, healthy men aged 20 to 40, using the most accurate techniques available. These are the results:


The average (mean) total T was 723.8 ng/dl. You haven't stated the units, but assuming your total T measurements are in ng/ml, that would mean you had measurements of 328 and 474 ng/dl, which is significantly lower than average (the first one would have placed you in the bottom 2.5 percent of the group in that study, the ones with "slow walking speed, difficulty climbing stairs, frailty or diabetes"). That, alongside higher than normal SHBG and E2, would fully explain why you have symptoms of hypogonadism without any need to invoke AIS.

Assuming it's in the same units as that table (pg/ml), your free T readings of 54.6, 42.4 and 52.4 are extremely low, in the bottom 1 percent (and free T is the important thing as far as biological effects are concerned). Presumably that's due to you having a relatively high SHBG level (which I don't think is shown in the chart you provided). In other words, unless I've completely misinterpreted your lab results, you don't have PAIS, it's just low testosterone.

[iceih]

Hi, pais in an intersex condition, there are tests you can have for it. Like taking anabolic steroids and seeing how the shgb reacts.

"Androgen insensitivity syndrome is the largest single entity that leads to 46,XY undermasculinization."

Thanks for the response. The new Doctor saied something about testing how I react to testostore supplment or injection, not sure which.

Here's a list of problems commonly associated with DES exposure, taken from a document written by Dr Scott Kerlin, the scientist who carried out the 2005 DES sons study.



As you can see, from what you say you appear to have several of the symptoms mentioned there (and hypogonadism, the "eunuchoid" body structure and gender dysphoria are also symptoms, mentioned later on in the document).

Yes, I got most of them.

With T levels, you need to watch out, because what counts as "normal" testosterone as far as lab reference ranges are concerned, could be well below normal for someone your age. Lab reference ranges are based on a random sample of blood tests taken at that laboratory, but people who have blood tests aren't usually normal, healthy people. They tend to be mostly sick or elderly, and have lower than normal T levels as a result.

As part of the Framingham Heart Study, they measured the T levels of 456 normal, healthy men aged 20 to 40, using the most accurate techniques available. These are the results:


The average (mean) total T was 723.8 ng/dl. You haven't stated the units, but assuming your total T measurements are in ng/ml, that would mean you had measurements of 328 and 474 ng/dl, which is significantly lower than average (the first one would have placed you in the bottom 2.5 percent of the group in that study, the ones with "slow walking speed, difficulty climbing stairs, frailty or diabetes"). That, alongside higher than normal SHBG and E2, would fully explain why you have symptoms of hypogonadism without any need to invoke AIS.

Assuming it's in the same units as that table (pg/ml), your free T readings of 54.6, 42.4 and 52.4 are extremely low, in the bottom 1 percent (and free T is the important thing as far as biological effects are concerned). Presumably that's due to you having a relatively high SHBG level (which I don't think is shown in the chart you provided). In other words, unless I've completely misinterpreted your lab results, you don't have PAIS, it's just low testosterone.

Sorry for the missing units, they are pg/mL and pg/dL, the SHBG is missing because I do not have it, I only have T0+SHBG.
I do not think you misinterpreted the lab, maybe you just found the missing key the doctors did not, they just look into me and not into my mothers pregnancy. This started somehow by a doctor checking my hormones seeing them not good and sending me to an endocrinologist who could not understand what she saw and sent me to this andrologist. This andrologist did not trust the results, suggested the PAIS and asked me for a new test, I ll have in 15 days.

Thanks again for you time and info, I really apreciate it.