Experience going off testosterone

[TonyTx]

Hi,

I have posted previously about being diagnosed with prostate cancer (Gleason 3+4) and had chosen radiation for treatment. I just finished radiation 3 weeks ago and had done well - just a lot of bladder irritation and some bowel irritation but hopefully starting to improve.

I'm 53 and had been on testosterone replacement for about 10 years prior to my diagnosis. Once diagnosed, I was told to discontinue the testosterone and tapered it off over a month or so back in August-Sept. I had routine labs last week and my testosterone was within normal limits at 480 but my free testosterone (which is the biologically active form) was only 4.3 (normal is 7.2-24).

Since going off the testosterone and having radiation, my libido has dropped off to almost nothing and have had ED worsen, probably mores just from the lack of desire to have sex. I know that being on testosterone will supress one's ability to produce on their own so I'm not surprised it's low but wondering if others have had similar experience or how long it took for them to get back to normal levels, or had similar experience with lack of libido?

Thanks,

Tony

[LowT]

lots of similarity with me. I suggest you measure your LH, FSH, Prolactin, Estradiol. Would be curious what they are. How much TRT were you on and for how long.

[TonyTx in reply to LowT]

I had tapered down to a fairly low dose of 40 mg twice weekly and had been on that dose probably a year or two. What would be the utility of having the other hormones checked? I know that I need to stay away from testosterone due the stimulatory effects on prostate cancer but have you had experience supplementing others or found that's affected your libido?

[conbio]

Was on Lupron for 18 months. Libido in the toilet, no detectable T. It took about 4 months before my T was back in the normal range and within 7 months was just about where I started pre-treatment. More energy and hair back on my legs!

[Alexandr1]

With respect to your doctors, they represent an “older” viewpoint on testosterone fueling Prostate cancer. That view has been largely debunked through lots of recent research. Google peer reviewed research undertaken by Harvard Professor and Urologist Dr. Abraham Morgentaler who has written more than 170 articles on the broad subject of testosterone and Prostate cancer. I am a Prostate cancer survivor and was on T supplementation before and after PC, with the approval of three separate urologists who agree with Morgentaler (and others)…

[Adf2529]

I was treated with SBRT about five years ago. Have been on TRT for the past 4 years under supervision of docs who regularly test hormone levels along with PSA. So far so good. My libido is def lower, but that could be related to a variety of hormone factors, not just T (and age, I’m 69). It is important to have a full hormone panel and feedback from a qualified endocrinologist who is familiar with the urologic issues as well. Larger, teaching hospitals may have more qualified docs in this respect.

[janebob99]

Glad to hear your RT went well. Did you have SBRT, or something else?

I, too, have been on TRT for decades. I agree with Alexandr1 that you should look up the papers and videos by Abraham Morgentaler who showed that men taking TRT don't have any additional risk of PCa. He explains it by a "saturation model", which has two parts: (1) the initial linear response part where increasing amounts of testosterone causes increasing amounts of PCa, followed by (2) the saturation part of the curve at higher testosterone levels (e.g., > 250 ng/dL), where increasing amounts of testosterone does not increase the amount of PCa. The explanation is that the androgen receptors on the PCa cell become saturated at a certain level of testosterone and don't respond negatively to levels of T greater than that saturation level.

Another aspect to look into is transdermal estrogen patch/gel therapy. This is receiving lot of renewed interest, and there is a randomized, double-blind study (PATCH) comparing the effects of doing Lupron vs estrogen patch. The final results should be published this Spring. It should improve libido and reduce hot flashes and osteoporosis associated with Lupron ADT. If you send me an email, I'll send you 10 papers on this topic. [e-mail].

Bob

[TonyTx]

Thanks for the feedback! Will take all that into consideration. I would like/hope that my testosterone continues to improve from the long term suppression by exogenous administration but if not, I will look into seeking some other opinions on re-starting TRT and/or getting some more extensive hormone analysis.