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Saturday, October 29, 2011

Not 90% the Man I Used To Be

No new appointments about which to report, but I have been getting used to myself with low
testosterone again. In retrospect, so many things make sense now. The low energy, the drained feeling when I climb stairs, the susceptibility to illness and infection. I don't have a lot in the tank when I need an extra burst. I know how to get from Point A to Point B—and I can do my job—but when I am down, I am D.O.W.N. As I type this I am covered head to toe with an electric blanket, shivering to the bone.

Since the shocking test results a week ago, I have been scouring the Internet for information. It turns out adding testosterone artificially (when your body produces none of it anymore) is not necessarily as easy as slathering on AndroGel every day. It worked for a while, but now it isn't and I will have to consider other options if my number is still low in December.

One thing I discovered: Testosterone replacement therapy is a hot topic on Internet message boards. Consider this post by "sexymom" (edited for length):

"AndroGel not working. :-(  My husband saw a urologist today about his (very) low T. The dr. said testosterone gels are not absorbed well (especially if the men are fairly hairy). The dr. said he wants my husband's levels to go up to 900-1100 using shots twice a week. The dr. said my husband should start feeling an increase in his energy levels. If your husband is struggling with low desire, PLEASE, PLEASE, PLEASE get it checked out. I have spent way too many nights in tears feeling like I am unattractive, unwanted, etc - when the problem is likely medical."

... And this reply by "hubbyforher":

"Sounds like you've got a GREAT doctor. Having a level of 900-1100 is wonderful and puts your husband in the sweet spot, IMO. Don't be impatient with the injections. 2X/week is exactly the right way to go, but it could take 4-6 weeks for hormone levels to stabilize in the bloodstream. Let me know how long he's been doing the injections. I suspect he's gonna be chasing you around the house pretty darn soon!"

... And sexymom replies:

"Have noticed a HUGE increase in my husband's drive. I'm the one being pursued now. It's nice. And different! While we're not tearing apart the bed(!), things are definitely much, much better and we've noticed a great change in his desire (as well as general mood, less fatigue, more mental clarity, etc..)."

hubbyforher: "You inject into the abs? Is this an IM injection or a sub-Q injection? Most people I know who do injections inject into the glutes with an IM injection. (e.g., 25g needle 1.5" long)."

sexymom: "It is a pretty big needle - not sure of the exact numbers . . . he injects into his belly fat area. Under the first layer of skin, but not into the ab muscles."

If I don't want to deal with injections twice a week, there is an alternative topical application called Testim. Read about it here, from "Volumnus":

"My doctor said if I didn't object he could start me on replacement therapy himself or refer me to an endocrinologist. I didn't want to wait so I said give me a prescription TODAY!

"He started me on one tube of Testim per day. It worked great, the best I'd felt in years, for about two weeks, but then things got worse. A month later, when he checked my levels again, I was at 214, lower than before. He jacked me up to two tubes per day.

"Now a year later my levels are consistently around 800. I feel great. I have improved in the gym and I'm far more cut. I'm about 5'10, 190. I can bench 225 13 times without a spotter. I think I could get at least one more.

"I'm not married, so accidentally exposing others to the gel isn't an issue for me. I also find that women love the way it smells. They always comment on my cologne. I sware [sic] to God there are girls who come down to my office each day to smell me. Personally, I can't smell anything but a slight alcohol scent, but women are attracted to it.

"Here is a weird side effect, though. I mainly apply the gel to my upper arms and shoulders as directed. When I get mad, the area that I lather with Testim gets hot and turns bright red. It has happened three or four times in the last few months.

"If I ever enter into a serious relationship (I'm having too much fun for now!), I'll almost certainly switch to injections. But I'm very satisfied with Testim!"

Ehh, I feel like I need to spend the rest of this blog apologizing for my gender, but thankfully the people reading this probably know me. The only thing I want is a normal level of all my hormones. Just normal for a 43-year-old male. I want to go to work and not be tired by the walk from my car to the stage. I want to stay up all night composing. I want energy. I have a little, enough to get around and look normal, but it's not enough and my numbers show that. Being covered in my electric blanket now, typing this and staving off the cold flashes, reminds me of nights when I would read comic books under the covers with a flashlight. It felt safe in there, but I was dreaming of what I would do when I would get out, dreaming of the adventures I would have as a scuba diver, an Australian football star, a race car driver, or a pirate.

Wednesday, October 19, 2011

Low Numbers Again

"Good morning, Siri," I croaked.
"Good morning, Alexander. By the way, it's already 5:57am," Siri said.
"I'm not ready for sarcasm yet."
"I do not know what you mean by that. Would you like me to search the web for 'sarcasm'?"
"No thank you. Can you remind me to go to my endocrinologist this morning at 8:15am?"
"Your reminder is confirmed for 8:15am."
"Thank you, Siri," I said.
"I live to serve," she replied.

At 8:15am, Siri made a honking sound and the screen read, "Endocrinologist reminder."

I got in my car and drove silently, my new companion resting atop some spare coins in the cup holder. I thought about turning on the radio, but I wasn't sure what Siri would think of my listening choices. So I kept it switched off until we knew one another better. I arrived at the medical complex about a mile away from my house. I slipped Siri in my pocket and went inside.

I've been groggy lately, but I chalked it up to the after-effects of a big week that included the premiere of my new clarinet concerto and a lot of good press. I had been riding on a high, but in the days after those concerts I ran out of steam. This happened one other time, right after the two weeks at Cabrillo. Then it felt like my whole body went into shut-down mode for many days. This wasn't as bad as that, but the feeling was similar.

"How have you been feeling?" the human doctor asked me.
I replied at length, going into detail about the energy dip, also the scary dance with the detached retina issue several months back.
The endocrinologist said, "Your thyroid level is still below the normal range, but your total testosterone is way too low again. 129."

This number, untreated, has been as low as single-digit 7 with me (when normal is 300 to 800). When it is that low I am incapacitated, shriveled up on the coach, alternating between freezing and boiling flashes. It's horrible. It has also been as high as 1,100. Hormone man! This confuses me because I have been diligent about applying exactly one packet of AndroGel every single day, exactly as prescribed. I don't know how this number was 1,100 over a year ago, 680 six months ago, and 129 last week. My body produces none of it anymore, so it seems strange that my number is dropping steadily when I am artificially applying a constant amount every day. It doesn't make sense.

This kind of thing used to worry me, but the retinal specialist overseeing my central serous chorioretinopathy has coached me on how to let go of anxiety. I can't control the numbers from my blood tests, and I don't know as much as endocrinologists do about how to treat panhypopituitarism and diabetes insipidus as they relate to craniopharyngioma resections. So I just let the doctors do their thing and I take solace that I am in good hands.

But we do discuss the finer points, just to be sure we're not missing anything.

"You apply the AndroGel every single day?" he asked.
"Yes. After my shower. Every day."
"After is good," he said. "Believe it or not, I've had patients who apply AndroGel and THEN they take a shower."
I burst out laughing. "Why not save a step and pour it straight down the drain?"
"I know, I know," he replied, turning up his palms and rolling his eyes.
This is why doctors and medical assistants have to ask so many obvious questions. Adults will do the darndest things.

So, there is no answer for now. I am increasing my thyroid dosage again with a re-test in two months. After a long discussion that satisfied me, we are keeping the AndroGel dosage the same, despite the drop. At this dosage my level has been as high as 1,100, so it is prudent to keep it the same and see where my numbers are in two months. Going too high could be dangerous because of my high blood pressure and coughing asthma. Everything in endocrinology is a balancing act. Tinker and wait two months. Tinker and wait two months again.

"Siri, can you remind me to get more blood tests on December 15?"
My calendar chimed with a new entry on December 15: "Get more blood tests."
"Siri, why do you think my testosterone level is dropping?" I asked.
"I'm on it."
I waited a few seconds, thinking for a second that she might have an answer.
Siri said, "How about a web search for 'Why do you think my testosterone level is dropping?'"
"No, thanks."
"Siri, what's the meaning of life?"
"I can't answer that now, but give me some time to write a very long play in which nothing happens."
"You're really funny, Siri! You just made my day."
"You're certainly entitled to that opinion, Alexander."