Its my first time using this site and I feel like this would be a good way to find some help/ answers with my medical situation. I apologize in advance for the ridiculously long post as I want to give as much detail possible so I can get some help, advice or even find someone who can relate to me so I don't feel like the only guy in the world who is going through this.
So when I was growing up, I failed to hit puberty. My family doctor ignored it because my parents were both 'late bloomers' and apparently so was I. He also noticed that my left testicle wouldn't stay descended and advised my to message my lower abdomen to bring it back down. Eventually it came down and stayed there. A few years went by, all my friends and classmates grew taller, stronger and hairier and then there was me, a short, weak, chubby, hairless kid with an abnormally high pitched voice.
Because I was visibly abnormal, I was always alienated out of everything, and by everything I mean EVERYTHING. I was always picked last on every sport that I attempted to play because I didn't have enough power to kick a soccer ball or I didn't have the height to shoot a basketball. I wouldn't even get chosen to do voluntary work at my church because I wasn't 'old enough' to be a Big Brother figure to the little kids at my church. And as for my social/ dating life, well I didn't really have one because my health issues got me seriously depressed and girls would automatically bro-zone me because I looked much younger than other guys my age. It would even affect my studies as I wouldn't be able to focus on any of my school work. My teachers thought I was stupid, a few of them even called me out in front of the entire class. But enough of my sad childhood, lets move on to the real problem.
I went to multiple doctors and they all said that I had nothing to worry about, that when its time I will hit puberty and catch up with the rest of my friends. But unfortunately that wasn't the case. It wasn't until my 15th birthday where I had enough and started going to Sick Kids Hospital in Toronto. They didn't really do any tests. They started injecting me with 50mg of Depo-Testosterone every 3 weeks for 6 weeks to see if my body would take over once they stopped. Once the injections stopped, my body did not take over and still wouldn't produce testosterone. I was 16 when my doctor decided that I will be on TRT for the rest of my life. I still remember her exact words, "I honestly do not know what the problem is. I can't tell whether it is a testicular problem or a problem with your pituitary gland. Either way we are starting you on TRT. Oh and one more thing, you have to accept the fact that you will never have kids." So after blindly trusting my endo at apparently one of the best hospitals in Canada, I started TRT. When I turned 18, my dose had increased to 200mg of depo testosterone every month. Yeah I know its really not that much. So its safe to say that I was basically a prepubescent male who is legally considered an adult. Pretty funny stuff.
Anyway so when I turned 18, I got transferred to another hospital where this other endocrinologist thought it would be a good idea to keep the dosage at 200mg a month. After realizing that my endo is a complete idiot, I took matters into my own hands, searched up a well known endocrinologist in Scarborough (Toronto) and started seeing him. He took one look at my bloodtests and told me that he is going to help me and everything is going to be okay (yay). He looked at my bloodtests and told me:
-My LH and FSH levels are undetectable
-My estradiol levels were 139 (< 157 pmol/L)
- My testosterone levels then were 6.7 (7.6 - 31.4 nmol/L).
Im no doctor but those levels sounded pretty low to me. So over the course of a year he increased my dosage to 400mg every week. Levels are coming up slowly but no progression in masculinization. Then he increased 600mg a week. My voice changed and I can now grow facial hair, sort of. I am now 19 (turning 20 in a few months) and I still am very far from looking like my age. I even get mistaken for a 10th grader which sucks. Here is some info that can put it into perspective:
Body Hair: Thin leg hair, little bit of hair under arms, tiny undetectable fibers on my chest. I haven't lost my adolescent hair, my hairline is very feminine and my arm hair is very thin as well.
Very little. Grows thin and very slowly. Moustache is basically not existent (looks like a little kids peach fuzz) I have hair all over my face, growing abnormally, asymmetrically, patchy I can go on. Doctors tell me my genes don't allow me to to grow much facial hair. Then I look at my dad and his brothers who are all hairy, fully bearded men. I look at my mothers family, who's brothers are all capable of growing full beards. and the fact that I am an indian male who's entire race is pretty hairy, I don't see how my genes can be completely different from my family let alone my race.
All the hair on my body other than on my head cannot be seen when standing two meters from me.
Fat: Distributed very femininely. Lots of chest fat, ass fat, my hips are wide, a lot of fat in the lower back area. My thighs are pretty massive too. I have tried to lose weight but I find it very hard to lose weight. It took my over 2.5 months to drop 15 pounds.
Surgeries: Breast reduction surgery, the boobs grew back though, pointier than ever.
Drugs: Delatestryl, Welbutrin
This has got my very depressed. So my doctor prescribed me some anti depressants. I can confidently say that they do not help at all. I frequently have suicidal thoughts, have given up on religion and am slowly withdrawing from society. I look at how far everyone my age has gotten in life, and then theres me. Single, lonely and depressed.
My most recent blood test is as follows inCanadian/ British values (don't know the conversion rates):
TSH: 2.15 0.35 - 5.00 mIU/L
LH: <1. 2-9 IU/L
FSH: <1. 2-12 IU/L
Testosterone: 26.8 M: 7.6 - 31.4 nmol/ L
Free Testosterone: 937 196 - 636 pmol/L
DHT 4323 860 - 3406 pmol/L
Since this bloodtest my doctor has increased my dosage of testosterone to 1000mg every 2 weeks because of incomplete masculinization. He says I apparently have hypergonadotropic hypogonadism. He is still unsure of the reason and does not know if it is due to testicular failure.
So basically my issue here is that my levels are more than ok, but is my body so feminine like? My fat distribution, hairline, my voice still isn't up to par with a male voice. Is my body not accepting the testosterone? Is it converting to estrogen? I am completely lost and am seeking answers that not doctor is able to give me.
I also get a rash all over my arms, neck and chest every time I exercise or I feel a change in temperature. I also get a prickly, itchy sensation all over my body. Is this due to the testosterone? The doctors also do not know why this happens.
I have attached a few pictures of my facial hair after a month without shaving (camera darkens the hairs but in person its much lighter), my forehead/ hairline and the rash I get over my arms every time i try to exercise or I'm feeling hot.
If anyone has any advice or has similar issues, I would really appreciate some sort of reply.
Thanks for taking the time to read this long post.