Virilization causing issues

Hi everyone. I'm a 22 year old woman and my unusual body chemistry has caused me a lot of trouble. I suffer from congenital hypothyroidism (detected at the age of 10) and virilization, but due to unkown cause. Most men from my father's family line display symtoms of way high testosterone levels and male brainess to the point of autistic and also aggressive behaviours. My virilization seems to be prenatal, because there is no any detectable condition that would cause it.

I was a very thin child, very high (but my final height is average), I already got my period at the age of around eight and then another symptoms started: my hirsutism and serious acne. My acne was so severe that even doctor was shocked and I was battling it for around seven years until I finally decided to start the longest Accutane treatment there was possible with the highest dosage. It covered 65% of my body, so for many years I had to hide my body parts. The treatment was awful and full of side effects, especially to my brain, as it slows down it's metabolism (I was very aggressive, rebellious, even more anxious). Now, after few years, my skin is still not clear but not as awful as it used to. My hirsutism is not the worst, but not so mild either (like 19-20 points on a scale), but I'm used to shaving (however, I was made fun of in the past for having dark black hair on my lower back and legs in primary and middle school).

At the age of 10 I was already prescribed contraception pills and by the age of 13 I turned extremely fat, had a goiter (my thyroid treatment wasn't succesfull back then) and my results weren't so good at that time so I was then prescribed dexamethasone and many other drugs. My weight was around 80 kg (171 cm height) but happily I'm now thin again with better thyroid treatment. I weight 53 kg now.

But these are not the only symptoms. I have a very deep voice, slight clitoromegaly, male body odor, my breasts are small and rather shrinked. I put on a lot of professional makeup on my face to look feminine, because my looks are very sharp: heavy jaw, large nose, small lips. My shoulders are wide, but my hips are small and my butt is flat and looks 100% male.

My psyche also seems different from that of other women, but it's not surprising if there were high androgen levels during my development. I'm very likely infertile, as doctors say, or at least unable to carry pregnancy, but I'm not interested in having children (but it still makes me frustrated to have heavy, long periods). They also say "it's just the way you are and there is nothing that can be done".

I do not have PCOS (even though was misdiagnosed with it), Cushing's, etc.

I have only part of my results, but they were like this:

THS is okay at the moment due to treatment, even though conversion could be better.

Free Testosterone: 1,53 pg/ml (0,04 - 4,18)
Total testosterone within a range, but on the high end.
Estradiol – 124, 7 pg/ml (12,4 – 233)
FSH – 5, 68 U/l (3,5 – 12,5)
Androstendione – 3,2 ng/ml (0,3 – 3,5)

DHEAS was within a range too, in the middle of it.

13/02/2016

Cortisol – 481,1 nmol/l (171 – 536)
ACTH – 17, 8 pg/ml (7,9 – 66,1)

In 2010 my results were bad, but this was probably due to bad thyroid results and stopping contraception pills (or still taking them, I don't remember). My prolactin was high (always is when TSH is high), androstendione was too high (5,37), as well as testosterone and 17OH hydroprogesterone.

The only solution is high androgen receptor sensitivity. Maybe congenital adrenal hyperplasia, but I don't know how to check it.

I was back then sent off to endocrinology clinic but they refused to take me because of my young age. Ultrasounds were fine. My doctor refused me to give me adrenals MRI referral because "there is no need for it". But he also didn't believe my hirsutism until I stopped shaving for a few weeks and showed him. Generally, it's difficult to find a good endo in my country because their knowledge stopped at 30 yrs ago. Even for thyroid, they don't know what Armour is and still perform treatment based only on levothyroxine.

I have never been in relationship, never had sex with a man, even though I consider myself heterosexual, but don't feel like I can meet what's expected of a female. I only feel feminine after doing my makeup but it's still more of a drag queen's type of feminity. I had a phase in life I was with a woman and considered myself a lesbian, but didn't enjoy it and it didn't feel right at the end. I see myslf as some kind of pseudohermaphrodite.

Hello dwr3: Thanks for sharing your struggle. Not being able to find competent, up-to-date medical treatment must make everything just all that much more difficult. My best wishes to you...

You've really had a lot on your plate.

What particularly frustrates me is when I hear about doctors not taking things seriously or seriously enough. Unless they've truly exhausted all possibilities and tests, if they don't understand why something is happening, and especially when it's affecting your physical and mental health to this extent, that's reason for more investigation, not "I dunno, nothing we can do about it".

Have you had a genetic analysis done?