T Nation

Chromosomal Disorder - TRT

First off, let me tell you about what I used to be like before I started TRT in 2009.

-I was going to college and had 2 weeks and 2 more classes before I would have gotten a degree in business management.

-I was going through terrible body pains (turned out I had nerve damage and my main problem was that I wasn’t sleeping enough).

-A few months prior I went to my GP and through a series of tests found out that I had severe/reactive hypoglycemia. Long story short I put it in remission by going on a low/timed carb diet.

-I felt like a little kid, had a good amount of energy to do stuff, had a very high libido, got sick a lot, ate very healthy foods, got plenty of exercise in, and I had plans for my life.

In 2009, I was told to go to an endocrinologist by the name of Thomas Koroscil (he’s famous among doctors quite possibly because he was the doc for ex-president George Bush). My testosterone level at this point was 117ng/dl.

The initial visit was not good:
I understand they need to check out the size of your package but, asking you if it’s alright if a hot chick and a dude can take a feel, making you feel guilty when you try to say no, and then having the hot chick laugh when she sees them is uncalled for.

The second visit was worse:
I was diagnosed with mosaic Klinefelter’s Syndrome…this means some of my cells contain an extra X chromosome.

My TRT begins:
I started Androgel 1% with 2 pumps for the first week and it felt pretty good. The second week was meh. Third week was bad. I went up to 4 pumps a day, felt angry all the time, called doc, and he lowered me to 3 pumps! Even when I was on 4 pumps, my testosterone levels were lower than just before I began TRT. I had hot flashes, serious brain fog, body pain, chest enlargement/tenderness, and I felt even more submissive (like a child) than I have ever felt.
Some time later, I went on to Testim 5% (don’t remember exactly what it was called but I know the stuff resembled vaseline). Doc wondered why I wasn’t doing as well as his other 60+ year old patients that are taking this…parents thought I was trying to get something better and for a couple of years treated me even more like crap. Doc then tried to write me out a prescription for something he never prescribes, I go to Walgreens to try to get it filled, only to be told they stopped making it 5 years ago! After that, I tried Femara for a little less than a month to get rid of my gynocomastia (it got really bad after I started TRT). Briefly summed up: dry/extremely painful joint movement, no libido (hot women and tumblr didn’t faze me), immune system was a joke, no energy, and BAD depression. Doc tells me that my estrogen is basically zero and that’s a good thing…also tells me my blood pressure is high and to take very high doses of Advil (this would have increased my blood pressure greatly so, I didn’t do that).
I get put on patches (alright but it leaves welts that take a week to go away), after that I go back on Androgel 1% 6 pumps a day (does nothing but waste my insurance’s money), 200mg of testosterone cypionate every 2 weeks (the oil is gone in 7-10 days…madness begins), and finally I am on .6 CCs of testosterone cyp. every week.

The damage done:
-I’m scarred up by acne (arms, shoulders, back, chest)
-Gynocomastia that had to be surgically removed (got it done last July and we only had to pay about $500)
-According to the government (I have military insurance through my dad) I am permanently disabled
-I ended up getting severe narcolepsy in the process. Narcolepsy is an auto-immune disorder. I believe my super immune system greatly sped up the progression of my illness. Nowadays, it’s a miracle if I do much of anything. I’m on 400mg of Provigil and I still have to take extra substances if I want to do things like laundry, typing/writing anything, thinking, eating somewhat normally, knowing what’s going on, visiting friends, and all the stuff normal people take for granted. My medicine is slowly killing me i.e. I’ve had refeeding syndrome a couple of times; my GP doesn’t seem to take my lack of hunger/thirst very seriously and my sleep doc says that there’s lots of people that would envy me because I can eat anything and lose weight. I can’t control most of my mental functions, I feel weak, I have to eat disgusting/unhealthy foods because I can’t absorb/handle normal food, I do things and then a short time later can’t remember what I did (automatic behavior), I no longer feel happiness or pleasure from anything and I do mean EVERYTHING, I still hallucinate though not nearly as bad as I used to, I lose my sense of touch, smell, taste, and hearing when my brain is still trying to wake up, I lose muscle control when I get the feeling of being stressed out, muscles cramp sometimes when I’m not even moving, and most importantly I can’t even think thoughts in my head anymore.
-I can’t take care of myself anymore and have to rely on my parents to take care of and sometimes make decisions for me.

Benefits gained:
-I no longer workout and still look strong and kinda lean. Most of the time my resting heart rate is 110-120bpm so I actually CAN’T workout without burning tremendous amounts of fuel (tried doing so last year when I was on dexedrine and I could have sworn I felt my heart go 3-4 beats a second).

Nowadays, I have no future. I’m just trying to gather information because my idiot doctors tell me things like, “It’s not a death sentence”, “Your levels of testosterone are looking good” (when it was in the low 400s), … (my sleep doc when my parents asked what can I do with my life and basically if things would get better), and so on. I’d give out my lab papers but they don’t give me those, if I ask for them they tell me, “they’re in the acceptable ranges”, and if I ask for any more information they tell me the numbers without explaining what they mean or why they even did the test. My next step this year will be to find out what’s going on at the University of Michigan to see what they can do for me.

I will answer questions to the best of my ability and I may not be here for a few days to weeks or months at a time. The above is the cliffnotes of my experiences with TRT and all the junk that goes with it. I’ve tried other bodybuilding forums but nobody seems to have much on the concept of ‘what to do when the dr has failed you’ or ‘being young on TRT’.

My first thought is that the gel sucks. Switch to bi-weekly injections if you can: They are stable if done twice a week, and dosed correctly (go by symptoms first, labs second). Is it .6cc of 200mg/ml? If so you can do .3 on say Monday and Thursday, and you will avoid the huge swings in levels. If it’s .6cc of the 100mg/mg, I have a feeling you aren’t taking enough. There are several tests you should run: Read through the sticky “Lab Work” on the main page. Finding out exactly what’s going on inside you will help a lot. Post the numbers here so we don’t have to guess. The gyno and hot flashes indicate high E2. Find out your score, you may need an E2 blocker.

Your T levels dropped when you started the gel because when you take exogenous (supplemental) T, your body shuts down almost all production, and you’re left with whatever is being absorbed through your skin with the gel. Absorption rates can be screwed up by a ton of stuff leaving injections the way to go. Going twice a week will help keep you sane.

“my GP doesn’t seem to take my lack of hunger/thirst very seriously” Really? Your doc doesn’t get why? You’re taking a stimulant! I take adderall (still trying to figure out sleep issues as well, tired and unmotivated all the time) and I LITERALLY have to make a check list to make sure I eat. Without that I could go all day and when evening hits I have a headache, realizing “Oh shit! I haven’t had food in 19 hours!” Protein shakes and nuts and fruits are helpful because they are calorie dense, you can drink the protein, and it will help you maintain a healthier diet while the rest of your stuff is figured out.

“my resting heart rate is 110-120bpm” I’d chalk that up to provigil. I am like that on adderall, and it was the same when I briefly took nuvigil (basically the same think as provigil).

Get your lab results in your hand…every single time. They’re yours, to do with what you want. Tell some lackey nurse to print them for you. For us to give specific input we need specific numbers. Never trust that “acceptable ranges” bullshit. At 285ng/dL I was in the “normal range”, but adjusted for age, that made me 85ish. I was 28.

Read through the stickies on the main page for a lot of good info and ideas on what should get tested. I have a feeling that you’re probably going to need a new doctor, but who knows? Getting the diagnoses are the first battle in a huge war to start living life again. I have been spending the last few months trying to figure out sleep crap, and I can sympathize with you: There can be a million causes for sleep problems so finding out what is causing it is a pain that you will have to go through appointment by appointment.

BTW, have you had a sleep study done? To see if you have Apnea?

Get your cortisol levels checked. You may have adrenal fatigue