Hi all, just an update with some bad news.
Sorry I didn't update this thread for a while, it was smooth sailing and I thought it was the end of this story.
However, on 9-11-2013 I had new bloodwork done, and my testosterone has dropped down to low levels again. Not as low as it was in 2010, but still, below average for sure. These are my latest numbers:
Total T: 423 ng/dL (range 250-1100)
Free T: 51.4 pg/mL (range 35 - 155)
FSH: 1.5 mIU/mL (range 1.5 - 12.4)
LH: 3.2 mIU/mL (range 1.7 - 8.6)
These numbers are almost exactly the same as what I got on 1/16/2013, in fact slightly worse:
Total T: 469 ng/dL (range 250-1100)
Free T: 57.2 pg/mL (range 35 - 155)
FSH: 2.2 mIU/mL (range 1.5 - 12.4)
LH: 4.4 mIU/mL (range 1.7 - 8.6)
So it would appear that the triptorelin had the desired effect for a while, but after a few months, my levels returned to what they were BEFORE the triptorelin, and stabilized there.
However, I do think it is strange that on 1/11/2013 when I had a quick total T test done, it only came back 275 ng/dL! Why would it fluctuate so much in 5 days? Is this normal?
So, it appears there is still a problem somewhere. I am pursuing diagnosis with my endocrinologist to try and figure out what is going on. Maybe triptorelin is only a permanent solution for people who had normal T numbers at one point, and were only shut down because of steroid use. That was not the case with me, my T numbers were always low due to some health problem we have not found yet.
Do my numbers look more like primary or secondary hypo? I have been assuming secondary because the total and free T numbers improve really well as LH goes up, plus, look how low my FSH numbers are, why would that be the case? However, my endocrinologist is assuming primary, because my latest LH reading was within the "normal" range. Well duh, so was my testosterone level, but closer to the low end of normal, whereas the LH level was closer to the middle of the range.
Anyway, I'm going to be re-tested in 4 weeks and if the levels are trending down or if LH is low then he is going to order an MRI of my head to look at the pituitary. I wish I could have gotten that done a long time ago to rule out pituitary problems. I guess we'll see what happens.
I also don't get the best quality sleep, lately around 5 or 6 hours a night, and my blood pressure is a little high, about 140/81. I wonder if either of those could make that big of a difference on testosterone levels.
I still tend to think I am secondary rather than primary, because I've found in the past that taking tamoxifen daily results in my testosterone levels being at the high end of normal, and when I took a shot of triptorelin my testosterone levels were high enough that my doctor was actually concerned saying they were "too high".