The TRT Diaries – Introduction

I am starting a new series of blog posts called, “The TRT Diaries”. This is where I’ll post updates about my Testosterone Replacement Therapy (TRT), which I’ll be starting soon. I feel that this is a unique series because I am an Intersex person who will be undergoing Hormone Replacement Therapy (HRT), and I haven’t really seen any people document their HRT progress while also being intersex (regardless of their background). It would be pretty nice if more intersex folks who chose to undergo HRT (for whatever reason  – whether that is hypogonadism or personal preference) documented their progress (but I know why a lot of them don’t and completely understand). It would let all of us know how its like to undergo HRT while being intersex – which is something that most people don’t experience. Plus (and this is I think the most important part), this information would be of great value to any intersex people thinking about going on HRT/TRT, as there are a lot of intersex variations out there so the effects of HRT/TRT are going to vary by variation (and overall, the genes one has inherited).

So this is just me doing my part and trying to create more visibility for intersex folks…and this is also me trying to fill a niche. This should be pretty interesting, so I can’t wait to start this journey!

BTW, since I’m dealing with hypogonadism (low testosterone, in my case), I’m sure this will be helpful to “average” (i.e. non-intersex and non-trans) men out there who are also hypogonadal and are thinking about going on TRT.

P.S. My intersex variation is 17 beta-Hydroxysteroid Dehydrogenase Deficiency [Type 3] (or 17b-HSD, for short).

Sick and Restless

I’m going to be completely honest with you and tell you this right now: Trying to rest while you recover from illness or injury is hard, especially if you’re like me and are highly competitive, passionate, and driven. It isn’t very easy. If you’re into sports, then you’ve probably heard stories (from features, interviews, articles, etc.) about high performing (read: highly competitive, passionate, and driven) athletes struggling with this same issue. They’re injured or sick and want to get out there and play/race as soon as possible. They know that while their competitors are getting ahead, they’re getting left behind. Not only that, but they’re also very passionate about what they do. They’re also restless – they need to be doing something at all times or they’ll get bored (they have a very hard time shutting their brains off). There are even times where they’re also struggling with depression.

I’m this same way. I know how these athletes feel because this is the same thing I’m dealing with (only the professions are different). If you’ve been following this blog for some time, you’ll know that I’m dealing with a nasty case of Hypogonadism (or Low Testosterone/Low T). It is so bad that it is impairing my ability to work. I can barely get through a whole day. I’ve been dealing with this since I was 11 or 12. Reason being because I was born with a mutation in a gene that is responsible for making Testosterone (T). What this means is – not just that I was born intersex but, – that my body has an extremely hard time making optimal levels of T to keep me healthy, well, and fully functional (heck, I haven’t even finished puberty – and I’m 23!). My body has a very severe T deficit (and even worse, a severe Estrogen surplus – because of my body’s excess excretion of Androstenedione, which is how our bodies make T). What all this means is that I have to go on Testosterone Replacement Therapy (TRT). I will have to take it for the rest of my life, I can never go off it or else I’ll be back to where I am now – struggling in life, barely able to make it through a whole day and overall, just trying to survive and feeling crappy.

I’m supposed to be resting right now. I know this, but sometimes it seems like my brain hasn’t gotten the word. A lot of the time, I feel like working. A lot of the time, my brain tells me to do stuff even though my body is telling me to rest. While its true that my profession is in the arts (music and design), I need my brain to be clear. I need to be able to focus and think straight. What I do is very intellectually-demanding (just like computer programming, engineering, and other intellectually-demanding professions), so I have to have a sharp mind and of course, I have to be healthy. This is a highly competitive field (which is a reason why I’m so attracted to it – I thrive on these kinds of things), so I need to be in good shape and have lots of energy. And lets not forget about touring and playing live – it is physically demanding, so that’s another reason why I have to be healthy and well. In addition, I have lots of great ideas, but I can’t really work on them because my cognition is too dysfunctional and because I’m too fatigued.

Low T is not letting me do my best. It is hindering my success. This is something that I struggle with everyday. The more my medical condition goes untreated, the more restless I get, the more I hate downtime, and the more determined I get to recover from this thing (among other things). Its hard to not do anything. Its hard to wait. I want to feel well again and do the stuff I love to do. I no longer want to deal with this. Fortunately, its almost time for me to get on the road to recovery. I went to the doctor just this past Tuesday and got a new referral to see an Endocrinologist (with my new insurance). I should be receiving a notice about it in 5 business days. I hope everything goes well because, like I said, I no longer want to deal with this. I just want to feel better and get back to living life.

New Year, Big Plans

2013 was a huge year for me. The majority of events that happened last year revolved around gender. 2013 was the year that I began my journey to get Hormone Replacement Therapy for my Hypogonadism (Low Testoserone, in my case). This was also the year that I continued my journey to legally transition from female to male.

2014 will be the year that I really (read: actually) begin my legal transition. Last year, California introduced and passed a new law – also known as the “Transgender Identity Law” – which allows Trans folks to have a more streamlined and inexpensive way to change their names. Part 1 (the first half) of the law went into effect on January 1st. Trans folks no longer have to go to court to change (more like “fix”) their gender marker on their birth certificates. All we have to do now is get a note from a doctor citing that we’ve undergone ‘appropriate’ treatment for a gender transition (it can be anything, and it doesn’t have to be specified). Then afterwards, we can go directly to the Office of Vital Records and change/fix the gender marker on our birth certificates that way. Part 2 (the second half) of the law will go into effect July 1st. This is when we will be able to change our names without having to put a notice up in the newspaper to do it (I heard you won’t even have to show up at the hearing).

I am very excited about the new changes. This is something that I’ve been wanting since I first started this journey in 2012. I actually never thought this day would come, and neither did I think it would come this soon. This provides us with an easier and more inexpensive way to fix our legal documents (name and gender, in this case). Not only that, but it also gives us more privacy, as we’re no longer going to be required to publish a notice up in a newspaper. That right there, is something that I’ve been intimidated of, as this is something that should be dealt in private. Not only that but I’ll be able to save a lot of money, as I’ll only have to file a fee waiver to have my filing/court fees waived, and I’ll only have to pay for a new birth certificate and ID (if I get the fee waiver granted, which I’m sure I will).

2014 will also be the year I overcome Low Testosterone (Hypogonadism). I really can’t wait to finally get this over with. It’s had such a negative impact in my life. I’m so sick and tired of feeling tired and fatigued all the time, as well as not being able to work out as often as I would like and not being able to put on muscle easily. Additionally, I’m so sick and tired of looking and sounding like a young boy (I’m 23, for goodness sake and shouldn’t have to go through this), and even worse, risking being mistaken for a masculine girl/woman. If you’ve ever suffered from, or are currently suffering from low t then you’ll know how this all feels (and how I’m feeling). I should be getting my prescription for T (and Arimidex or Tamixofen) during the first half of this year (anywhere from February through April, or during Winter or Spring) – at least I’m hoping so.

A Great Experience With The Healthcare System

I had my last doctor’s appointment on November 22nd. This appointment was different from all my other ones because I was going to see my new Primary Care Physician (PCP) for the first time. I was going to an unfamiliar place – a place I’ve never been to before. I was excited, and a little nervous as well. I wondered if I was going to receive great service like I did with my previous PCP. Additionally, I wondered how they were going to handle an Intersex person, who’s also in the process of legally transitioning from female to male, after having a gender misassignment at birth.

My new doctor’s office wasn’t far away from my place of residence. It was so close that I could walk there – which is what I did. My former doctor’s office was a little further away (but not very far). It was in the same city where I live, but I had to go there by car. It was cold, windy, and rainy that day, but it wasn’t raining when I left. Although, it started to rain once I got there (which tapered off when I went back home).

The first thing I noticed when I got in there, is that it was bigger than my old doctor’s place. There were also a few more receptionists than in my old doctor’s place (where there was only one, since it was smaller). Some of the receptionists/nurses seemed a little more aloof than at my old doctor’s place (where it felt a bit warmer), so things felt a little awkward, but I was able to overcome it as I got more familiar with the place. When I got there, there were also a lot of people, so I had a wait for quite a bit.

About 30-45 minutes later (not sure how long I had to wait since I didn’t have a watch with me – this is just my lucky guess), I was finally called in to see my doctor. The nurse did the usual stuff they do to you when you go visit the doctor – check weight, height, vital signs, etc. and then I was made to wait for my doctor to see me. About 20-30 mintues later, my doctor came into the room the nurse put me in. He introduced himself to me, asked me why I wanted to see him (I told him that I wanted to go on Testosterone Replacement Therapy), and then checked my heartbeat.

After he did that, we discussed my inquiry about going on Hormone Replacement Therapy. During the discussion, he asked my why I wanted to go on H/TRT. I told him because I wanted to treat hypogonadism (or low testosterone). He then asked me how I found out I had hypogonadism. I told him that I took a blood test in early October, and then I showed him the copy of my results. As he was going over the results, I told him I was a genetic male and that I was born intersex. In addition, I told him that I go by the name Ryan on a daily basis and not my legal name (and that I’m in the process of changing my name).

He took all of this very well. He was really nice and cool about it. I even told him I wanted to change the gender marker on my ID and social security records but that I needed a doctor to fill out my form (for the DMV) and write me a note (for the SSA), and guess what? He filled out my form! (He’s going to give me the letter for the SSA later.) He even suggested that I see a psychologist on a daily basis so I can deal with all the bs that society throws at me! What’s more? He knows what intersex is, so I didn’t have to explain it to him! Overall, he seems to know about LGBTI issues and seems to be an advocate for us.

At the end of my visit, he told me he was going to refer me to an endocrinologist. My referral is still pending to this day – my guess is because of understaffing due to the fact that my current insurance will be ending on December 31st and Medi-Cal will be my new provider on January 1st, and we’re all getting transferred there. My guess is that I probably won’t be seeing the endo until January. Oh well, at least it’s almost January.

I was so happy when I left my doctor’s office and went back home. I love my new doctor! He’s very nice, laid-back, and understanding. I’m really looking forward to my next visit. Another positive part about my visit was that, no one asked me questions related to female health matters! So what that means is that nobody asked me, ‘when did I get my last pap smear’ or anything like that! This must be because I put down “male” on my application form rather than “female” on the space where it says “sex” – or “gender” (that’s right, I took the “risk” :) ).

And that’s how my last visit to the doctor went – it was a great experience.

Happy New Year everyone! See you all in 2014!

Reincarnation: The Transition 6

Plenty of stuff has happened since my last post, and I got some good news and some bad news.

First, the bad news:
1. I got the referral to the Urologist, but unfortunately, it didn’t work out. Apparently, the one I got assigned to doesn’t treat hypogonadism (my doctor actually put “Transsexualism” – which is problematic because I’m not Transsexual, I’m only Transgender and on top of that, I’m Intersex). On the bright side, I think I owe it to Obamacare for not getting discriminated against this time around :) . As a result of all this, I had to go through hell for several days. Fortunately, I’m back on my feet.

2. I had to switch doctors because my now-former doctor will no longer be covered under my insurance starting on the 25th. This is because my current insurance won’t be around after December 31. Since Medi-Cal is getting expanded, there is no need for the insurance program I’m on right now. As a result, I’ll be getting transferred to Medi-Cal and that will become my health insurance on January 1st. My former doctor will be under the Medi-Cal program but its going to take 6 months for it to be approved, so he won’t be able to serve me. I’m actually very excited about the switch to Medi-Cal – I’ll be able to get more benefits, which includes getting T covered.

Now, the good news:
I got a new doctor last Friday, so that means I’ll be able to start fresh and forget everything that’s happened these last several weeks. The last few visits to the doctor have been about trying to get a second opinion on my Intersex before going on hormones, and just getting a physical examination based on that (which included checking my hormone levels before initiating HRT). Well, I already did that, so I don’t need to do anything else. Everything’s good down there and a specialist (a gynecologist) agreed with me about my intersex. My previous PCP wanted me to get an ultrasound, but I don’t think its necessary. He wanted to be sure that there were no ovaries or other internal female reproductive organs – which I know there aren’t.

My testes are palpable (you can feel and see them) from my bifid scrotum (which look like labia), so I know I don’t have ovaries. Its impossible for humans to have both a fully working set of testes and ovaries, since they’re both derived from the same tissue. My guess is that my former PCP was just misinformed – and I don’t blame him for that since there still isn’t a lot of awareness about intersex…there are still a lot of misconceptions about it. I’m guessing that the specialist (a gynecologist) that saw me back in late September kept this in mind (he seemed to be a bit more informed about intersex), so he didn’t didn’t have me do an ultrasound. If the testes weren’t palpable in the labioscrotal folds (the bifid scrotum), then he would’ve had me do one.

In addition to the testes, I also have a penis that looks like a clitoris but isn’t one (it is about 4cm long when its stretched). It is capable of erections and ejaculations, and in my case, the urethra attaches to it. I can even have sex (both partner and solo) like any other guy. My sex drive is like that of a regular (read: “standard-bodied”) guy. Additionally, I have something that looks like vagina but isn’t…what it really is is something called a urogenital sinus, and yeah, it doesn’t do anything – its just ‘there’ (and yeah, if you haven’t guessed already, I don’t have a vagina).

I’ve done enough research (lots of it) to know that I’m not genetically female, and I am indeed intersex and genetically male. I trust both my research and my instincts. I no longer need to undergo any physical examinations. The only thing I would love to do is get karyotyped and get my genes sequenced, so I can know what kind of mutation I really have. I know its 5 Alpha Reductase Deficiency (or even 17 beta hydroxysteroid dehydrogenase deficiency – I really think its the former, but you never know), but I really want to know what I really have. I really want to know if the type of mutation I have is novel (which I suspect it is), and if it has even been discovered yet. I’m just really curious to know. But I can wait, and I’ll need to. Getting one of these tests is going to cost me a lot of money (about $700 for each test – that is, to get tested for both 5ARD and 17BHSD).

So I’ll be seeing my doctor on Friday. When I go see him, I’m just going to tell him that I want to go on TRT (Testosterone Replacement Therapy) to treat hypogonadism (I also want to go on Arimidex, btw). Additionally, I’m going to tell him that I was born as a genetic male, who didn’t know he was one until just last year and that at the same time last year, he also came to the realization that it would be best for him to live the rest of his live as male since that’s how he’s always felt. Hopefully everything goes well, and I can finally start treatment and get back to my life. Hopefully he can also help me to fix the gender marker on my SSA records and ID. I think this time around, I’ll be able to try the Endocrinologist again (because of Obamacare prohibiting the time of discrimination I went through the other time around – which was before Obamacare went into effect), but I’m going to see what my doctor recommends this time around.

In addition, I’m also going to conduct a small experiment. When I fill out my application, I’m going to mark “Male” where it says “sex” or” gender”. In the past, I either marked “Female” (based on my ID and SSA records) or left it blank (I did this when I first went to see my previous PCP). I’m hoping that goes well. Hopefully, I won’t get asked anymore questions like “when when was your last pap smear?”, and hopefully I won’t need to answer “I don’t have a cervix, so I don’t need to get one” or “I don’t have cervix because I’m intersex, so I don’t need to get one”.

Hopefully, I’ll get my needs met.

Reincarnation: The Transition 5

I went to go see the Gynecologist on September 27. Everything went well and he ordered a blood test to check my hormone levels by the end of my visit. I went to get my blood test on October 4. On October 18, I went to see him again for the last time. My test results came back and I was shocked by the numbers. Those numbers caught me completely off-guard. In fact, here are the hormones I got checked and the results:

FSH: 5.3 mIU/mL
Estradiol: 192 pg/mL
Testosterone: 36 ng/dL

These numbers are very alarming (at least for someone who identifies as male). My hormone levels are totally out of whack – T should be 500+, E should be anywhere from 20 to 30, and FSH above 23 (I think, don’t know much about FSH but I know its somewhere around there). My FSH is very low, my Estrogen is very high, and my Testosterone is extremely low. I was expecting my FSH levels to be abnormal, which I was right about. I was expecting my Estrogen to be high, but not this high (but then again, I kept the possibility of a result like this in the back of my mind, since I have severe gynecomastia so I had my suspicions). I was expecting my Testosterone to be low, but not this low [complicating matters is the fact that I have been getting crappy sleep as of late (not really my fault - my little brother just won't go to sleep and its probably also a side-effect of low T), as well as the fact that I'm not yet fully Primal (when I was testing it out, I started to feel a bit better). I'm sure this had an effect on my T levels.]. Note that even though my FSH levels are very low, I don’t have secondary hypogonadism – at least not completely. I’m hypogonadal but I’m not primarily or secondarily hypogonadal, rather, I’m androgen resistant. But it seems to me that its a combination of androgen resistance and secondary hypogonadism.

These numbers are more consistent with normal female hormone levels, and that’s also what has me so shocked. Just thinking about this also makes me pretty dysphoric – and that just sucks. Keep in mind that I don’t have ovaries, I have testes (adult-sized for that matter). I actually have at least one piece of female reproductive tissue, but that’s about all. The rest is male reproductive tissue/organs. I have no female reproductive organs. It seems to me like that ‘female’ tissue is confusing my brain. Don’t believe this can happen? Then check this out: 2821full. (Yep, that’s one of the many wonders of being Intersex: anything can happen.)

This explains why I’ve been feeling like crap, since practically puberty – and why its gotten progressively worse over the years. It also explains why I’m so underweight, why I have severe gynecomastia, why I feel so fatigued, why I have such a hard time concentrating, why I feel so anxious, why I have a reduced sense of well-being, why my productivity is down, and everything else that comes with low T. What I was also worried about was the nasty long-term side-effects of low T – which can be deadly – which include stuff like heart disease and Alzheimers. Think low T isn’t a big deal, check out this list of symptoms (I have most of these symptoms – except obesity, osteoporosis, night sweats, and depression. My libido is inconsistent – at times its high and at times its low.):

Symptoms of low testosterone include:

Reduced sex drive (libido), difficulty achieving an erection (erectile dysfunction)
Increased fatigue and lethargy; diminished energy, sense of vitality, or sense of well-being
Depression, anxiety, irritability
Difficulty achieving orgasm
Decreased muscle mass and strength, reduced exercise stamina
Obesity
Excessive sweating and night sweats
Loss of body, facial and pubic hair
Increased breast tissue (gynaecomastia)
Poor concentration and/or memory
Insulin resistance
Loss of bone mass (osteoporosis)

As you can see, low T isn’t a walk in the park. Its not fun and it can severely impair your quality of life. So if you’re a self-identified male and are experiencing any of these symptoms, just go get your hormone levels checked. T is very important for us males, since it strongly affects the male brain. In fact, here are two great resources that talk about the importance of T, just click here and here.

Next, I have to go to my PCP to get a referral to see a Urologist. Hopefully, everything goes well (I’ll keep everyone updated). I really hope I’m on T before Christmas – It would be really nice to be around family and friends with higher energy levels and a better sense of well being for once in my life. I’m only 23, but I feel like an old man. All I know is that I’m really looking forward to TRT and the future. I’m looking forward to leading a more “normal” life. This is all I can do right now since I’m sure when I’ll be on T.

See you all next time!

P.S. My phenotypic characteristics fit the 5-Alpha Reducase Deficiency (5-ARD) description (which is also sometimes known as Psuedovaginal Perinoscrotal Hypospadias). However, my biochemical description is pretty unconventional (its not like the typical 5-ARD biochemical description). This is actually possible (of course, I’m proof of this), just take a look at the article I linked to above. If you check out the publication, you’ll see that the female-identified 5-ARD folks don’t fit the ‘typical’ 5-ARD biochemical description (they seem to have a ‘novel’ mutation). There have also been folks who have normal T/DHT levels. There have even been folks who have gynecomastia (which can happen to any male, but is not considered a “hallmark” of 5-ARD). This just shows you that genetic testing (karyotyping) is much more reliable at diagnosing Intersex (or a particular Intersex variation).

I guess this just shows you just how complex Intersex and hormone levels/testing are. I think when looking at the characteristics of Intersex variations, its important to keep an open mind. This is because there are many mutations of specific genes. Some are more common, some are less so. Some have been discovered and some haven’t been discovered yet. There are some that are well-known, while at the same time, there are others that aren’t well-known. In addition, a lot of Intersex variations haven’t been studied enough, since they’re considered ‘rare’ – and when somethings rare, nobody really puts any attention to it until there’s increased awareness. At the same time, there are probably some variations (“conditions”) that haven’t been discovered yet.

UPDATE (2-1-2014): I found out recently that my FSH levels are actually normal. The normal levels of FSH are between 1 and 10 – and mine’s right in the middle. So what this means is that my testes are actually (structurally) fine :) (which is actually what I suspected this whole time) and also, I don’t have secondary hypogonadism (or primary hypogonadism, for that matter) coupled with androgen resistance. This is great news! Unfortunately, the doctor who order the blood test didn’t check for LH, so I don’t know whether that’s normal, above normal (elevated), or below normal (deficient). But my suspicion is that its elevated – which is common in both 5-ARD and 17B-HSD (normal and elevated FSH are also common in these two intersex variations). Normal LH levels are between 2 and 12, and I suspect that its above 12. I’ll have to ask to get that checked shortly after beginning T, as I don’t think my LH will change (and also, I’m pretty worn out from going back and forth between doctor visits, etc. – its the low t).

The doctor who ordered the blood test told me that my FSH has to be above 10 in order for it to be ‘normal’. This is true only for transsexual males, but not for a genetic, intersex male like myself. I’m guessing that either he didn’t believe me when I told him I was intersex (which is/would be pretty upsetting), or he was just ignorant about normal FSH levels in males and females, as well as the differences between intersex, transgender, and transsexuality (which I’m hoping is true – but we’ll never know).

An Update…

I went to visit my doctor on September 4th. There, we discussed the fact that my insurance had denied my referral to see an endocrinologist. I told him that I suspect that I was denied the request just because of my Intersex (and possibly Trans) status. During the discussion, he mentioned that he could refer me to see another specialist instead – that way, I would get this done quicker (not to mention that he said I would have better luck getting the care I need that way). Not only that, but he said that he would put another reason for the referral just so it could be approved (related to the reproductive organs but not mentioning anything about being Intersex or Trans).

Guess what? It worked! A few days later (two days later, to be exact). I got a call from my doctor’s office saying that I got the referral approved. Afterwards, the receptionist gave me the doctor’s name, address, and phone number. I was planning on making an appointment with the specialist on Monday, but a few hours later I got a call from them (their staff, to be exact). This was really to confirm that my doctor had reffered me to them, but afterwards, they asked me if I wanted to make an appointment with them and I said yes. So instead of making the appointment with the specialist on Monday, I got to make it on the same day I got the referral approved!

I will be seeing the specialist on the 27th. The specialist? A (gasp!) gynecologist. That’s right, the Intersex guy (who has no female reproductive orgrans whatsoever) will be seeing a gynecologist! I’m getting chills just thinking about that (lol)! (Believe me, this made me pretty uncomfortable when I found out more about gynecologists.) I mean, a guy seeing a gynecologist? Isn’t that for women? Don’t gynecologists specialize in the female reproductive system? Cause last time I checked, I have no female reproductive organs!

(Okay, lets get serious now), Since I’m still legally female, my doctor said I have no other choice but to see a gynecologist right now. With this, I’ll be able to get the care/services I need. They may specialize in the female reproductive system, but overall their focus is on the reproductive system so it makes sense (which is why I agreed with him and asked him to make the referral). The good news is, after I see the gynecologist (and get all my diagnostic tests done), I’ll be able to work towards getting the gender marker on my ID and Social Security Records fixed (my doctor told me to do this first before he could help me with that). Not only that, but my Intersex status and true sex will be (formally) confirmed!

I have been getting my anxieties about seeing the gynecologist under control by simply thinking about getting these tests done and getting my Intersex status and true sex (formally) confirmed. Just been staying positive and thinking about getting this over with, as well as how ecxited I am about finally getting the care I need. Seeing the gynecologist just seems so gendered and feminine (actually, it is), so I get pretty uneasy about it. Its going to feel a bit awkward for sure (in fact, it already is).

I could’ve filed a complaint with my insurance (and if that didn’t work, with the state’s Independent Medical Review board afterwards), but that would’ve taken too long. These hypogonadism symptoms and (at times) gender dysphoria are killing me. I seriously cannot go another day like this. It is affecting my productivity at work and quality of life. Not to mention, the anxiety I have over finally comfirming my Intersex status and true sex of male. This, along with passing and finally getting the services and treatment that I need, are all I can really think about at times. I can barely think about my work or anything else at times. It also exaggerates the major shyness I’ve always been struggling with (I grew up with Selective Mutism), since I’m very self-conscious about my voice (I should mention that I’m a Highly Sensitive Person). I have come a long way from this but this just seems to squash all the hard work I’ve done. All these reasons are why I decided to skip filing the complaint and instead take the offer to see the gynecologist when it was presented to me.

So that’s all for now. I’ll be posting another update after my appointment on the 27.