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Raging Animal – Testosterone Update

You wouldn't like me when I'm angryNot getting into too much detail, I’ve been a raging animal for several months. Months. I’ve flipped out on a dime, popped blood vessels out of my forehead, and pissed off some clients a time or two (you know you’re raging when it comes across via e-mail). This is why I had my blood drawn for levels Friday at clinic.

The results are in.

A little background first

I began shots when I was barely over 100lbs and pre-diabetic, on the verge of going on diabetic pills. After doing that for a while, I gained weight and we changed our diet and I had been vitamin compliant for a few months. I started getting angrier and angrier. They reduced my dosage and switched me to doing it every 2 weeks to reduce the ups and downs. Eventually that concentration of testosterone cypionate wasn’t available, so when that got cut in half, we doubled the frequency to get the same amount.

Here’s my history:

Date Free Total
April 2010 74 402
August 2010 104 376
November 2010 167 516
September 2011 255 966


April 2010: post-compliant, pre-diet change, no change in dose: 300mg bi-weekly
August 2010: post-compliant, pre-diet change, gained weight, changed frequency, not amount: 150mg weekly
November 2010: post-compliant, post-diet change, maintained weight, same frequency: down to 100mg weekly
September 2011: post-compliant, post-diet change, maintained weight, changed frequency and dose: down to 50mg bi-weekly

I’m being cut back by 75% because my levels are anywhere between 2 and 4 times what they should be, depending on which number and who you believe about what levels are normal. I guess now would be a good time to apologize to anyone who’s had a “bad Jesse experience” in the last few months. Maybe you deserved it, but I probably still overreacted beyond my normal, even demeanor.

So… it would appear that the boys are working doing their job making juice. This is starting to explain a little bit why I was so small as a teen considering how underweight I was. I know CF probably had some to do with it, along with my parent’s height, but I was also darn thin and small-boned. I’ve just started to fill out like a man in the last year. We’ve been eating a lot of fresh veggies and fresh meats since Beautiful was diagnosed with several allergies, so I have relatively few processed foods compared to our first 3 years of marriage.

The more we watch shows on food-related health issues, the more we’re able to weed out the crap and get good stuff. I’m eating a ton of eggs, more salmon, taking fish oil caps, and actually taking my ADEK + zinc, all of which are supposed to increase natural levels anyway.

It’s starting to look like I won’t need any next time we do levels, which I’d be fine with, because it’s a pain in the butt.

Post-Clinic Update

What a day! What a night!

We got to clinic to another empty waiting room and got back for PFTs before too long at all, as usual. You’ve probably guessed by now that I have very little tolerance for being scheduled when I have to sit around and wait for other people, so the first appointment is the way to go. It meant getting up at 4:30, but it’s worth it.

I got my first look at my FEV1 after my first blow: 38% (last clinic was 35%)! I went again with even more force and got a 35%. Remembering our long PFT in the Spring when we determined that I was collapsing my airways by blowing too hard, I backed off for my 3rd attempt: 39%! Boo, yeah! That sent me to rockstar status, as it was my highest number on the computer’s history visible on the printout. My lowest was 27% when I was on a placebo for a drug trial that required stopping my AZLI study drug. Bad move!

Since last clinic, I’ve gained over 200mL of volume, but I still feel like crap. Our only guesses are that I was coming off fighting off a cold last weekend when I had a fever or else I’m getting so much gunk loose, it’s making me feel worse than my numbers show. Sue thinks I’m pretty funny to feel bad and then post numbers like that. It seems like when I put weight on how I feel, they’re interested in the numbers and when I concentrate on how my numbers are, they’re interested in how I feel. Whatever, my IV streak continues (see the sidebar counter).

I also asked for a t-shot blood level, flu shot, and my quarterly Boniva shot. Anyone else getting the Boniva shot? [Read more…]

More Testosterone Production With More BMI

Do Not Make Me AngryTestosterone is a powerful drug! I wrote a while back that I had a painful side effect that started up sometime around June, if I recall correctly: very tender… uh, boobs. I mentioned parts of this last week in my clinic post, but here is the official article on the topic after the test results are in. I’d read that can happen from too much testosterone when on therapy, but the doctors said “no” to the medicine I found on the Internet as a solution to the symptom until they saw me at clinic to see what was up.

It wasn’t so much of a surface tenderness, but a semi-dense mass underneath the skin that is quite painful to any pressure at all. Sue told the doctor that he had to give a breast exam as she left the room to do more paperwork. Unfortunately, this was the first time in about 3 years that Beautiful joined me at clinic and he was startled and shot back with a quick, “what!?” as Sue quickly said, “on Jesse!”


His software and my latest blood draw made him suspicious that I was getting too much testosterone because, to quote the good doctor as best I can a week later, “you’ve gained weight and now your gonads are making their own testosterone now.” Beautiful and I recalled that anorexic women go barren when their BMI is that low because the body is just in survival mode. That is what had been happening to me for… my entire adult life since I was never really at a healthy BMI.

I just so happened to not do my shot yet that day, just in the event that they needed to do a trough blood test to get to the bottom of my symptoms, which they did want and did take. The results came in today: high. Beautiful’s response was darn near, “I told you so because you’ve been quick to be mean,” which has been her plight for weeks, saying I was short-tempered and my first reaction was to be defensive and harsh. So, dudes on hormone therapy, listen to your womenfolk when they say you’re a meanie and go get your blood drawn for a trough measurement. I was over the limit at my trough, so I wonder how high I was at my peak on Saturdays or Sundays.

Now, if you’ll excuse me, I’m going to go watch some HGTV and cry during the reveals while I consider new color choices for our table settings.

Pharmaceutical Specialties Pharmacy Rocks My Socks

Pharmaceutical Specialties, Inc.You can’t get any better than Pharmaceutical Specialties, Inc. (PSI). Period. We have had nothing but good to absolutely outstanding service and support from them since I started using them in mid-2009 in order to get a replacement eFlow unit. They have a special program for CFers and are top-notch in every way. My only bone to pick is that they don’t compound (pre-mix) my colistin, which the other, crappy pharmacy did a one month supply at a time. I’ll be discussing that with them to see if that will be a possibility since their competition does it /nudge /nudge.

The previous specialty pharmacy I had been using for 3 years refused to get me a new base even though I was convinced that it was the base ruining my heads, not my cleaning. After a year of struggling with a new head every month that was sputtering for 30 minutes per dose by the end of the month, I threw in the towel and asked for a referral to another pharmacy that leases out eFlows. That’s how I got the Trio, because I’d had the eFlow since 2006 when it even went by a different name!

From the very beginning, the process has been as smooth as butter. My awesome coordinator called in the script for colistin and I had my new Trio later that week. They also send me my ADEK for free. Things just get better, though, because they are also my supplier for Zenpep and Cayston! These are all of my favorite drugs, with the possible exception of Xanax and Vicodin because of the immediate physical relief they bring.

When I started on Zenpep, there was a rebate program that we got wind of, but they require an original receipt. The receipt we got for the Zenpep simply stated something like: “Pharmacy – Rx: 24532563.” That wasn’t going to work, so I called and asked if they could put a line-item call-out on the receipt to indicate what the med was so I could get reimbursed. Two days later, we got a new receipt in the mail done up just right. They have automatically done this for 4 straight months without so much of a peep out of me.

Amazing customer service #2 just happened this week. Now that Aetna isn’t supplying my testosterone, I have to send in a reimbursement form that needs to be partially filled out by the pharmacist with the date and pharmacy license and signed by them. When my testosterone showed up this week, what was in the box? A pre-filled reimbursement form for that month’s shipment for me to sign and send to Aetna!

I really can’t recommend them enough.