I guess I should start at the beginning; so, this may be a bit long. About 14 years ago I developed a very rare growth on my vocal chords that (after a few years) required incredibly frequent surgeries (every 3 weeks) just so I could breathe. After 3 years (and nearly 25 surgeries), the Doc I was seeing recommended I consider experimental treatments.
Shortly after treatment I began to notice issues with libido. Since this was an experimental treatment there were no known side effects. I saw my General Physician about the libido and he indicated my testosterone level was low…but not too low “live with it”. After several years of a continually decreasing libido I started seeing another GP.
Again, I received the same reaction. About 2 years later, I began having issues with joint pain, hair loss on my legs, lethargy, and a ton of other things…not to mention a rather upset wife. I begged my doctor to send me to an Endocrinologist. The Endo indicated I had the testosterone levels of a 90-year old man (at the age of 37) and began trying to find a way to boost it.
During the testing, he determined that the experimental treatment I had elected above ultimately affected part of my pituitary gland; specifically, Luteinizing Hormone levels are not anywhere where they should be.
Under the care of at least 2 GPs, 1 Endo, 4 Urologists, and an OBGYN I have been placed on a number of different treatments and a number of different doses. What appears to have worked the best is 100mg Testosterone Cyponate injections 2x weekly. I have been on this for over a year now and have had labs run 3 times now with testosterone levels between at 8.86, 23.44, and 13.97 ng/ml (8.86 was taken the morning before an injection, the 23.44 was taken the day of an injection, and the 13.97 was taken the day after an injection).
My throat issue that had been in remission for almost 8 years has started flaring up. The throat doctor believes it to be linked to an increase in estradiol in my system. Estradiol has been shown to increase the outbreaks. I have relayed this information to my urologist who has started to look at my estradiol levels. The first two results were 92 and 114.1 ng/ml.
After seeing these, the urologist put me on an Anastrozole (0.5 mg/day). My most recent labs showed my estradiol levels are now 0 (which I understand is too low). However, the urologist believes this is just fine and doesn’t want to change my Anastrozole.
Finally, through all of this, I honestly don’t notice a difference in my libido, my mood, my energy levels, nothing (well, I do notice a bit more daily pain). Over the last 2 years I have bounced from:
8.6 ng/ml testosterone and 92 ng/ml estradiol
23.44 ng/ml testosterone and 114.1 ng/ml estradiol
13.97 ng/ml testosterone and 0 ng/ml estradiol
I don’t notice ANY changes at all. Some friends have told me that this may be due to a decrease of GnRH and that I should talk to my urologist about hCG injections. My urologist has pointedly said he does not believe in them and that he will NOT prescribe them. That if I insist on this I should find another doctor. I have seen 7 different ones so far. How do I find one that will help? I feel like I am starting all over here. What do I look for???