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Posted 11/21/2016 8:42 PM (GMT 0)
Since finishing my ADT in April of 2014 I’ve had some ups and downs with my testosterone and it’s never truly rebounded. It did reach 275 this March 2016, but unfortunately since then the trend has been downward: 162 in July and now 111 this November. Simultaneously, my FSH is high, which is a possible indication that my testicles aren’t working well.

My baseline T before starting HT was 364, so I didn’t go into this as a particularly high testosterone kind of guy. And frankly I’m okay with the idea of my T hanging around in the 200s. But I’m not crazy about 111—perhaps I’m imagining this, but I don’t feel like I have the same pep at 111 as I did when I was in the 200s.

My next PSA/testosterone test is in March and depending on the results then, I might consider supplementing my testosterone. Any thoughts on that? BTW, my PSA has been pretty steady in the 0.15 to 0.20 range.
Posted 11/22/2016 1:22 AM (GMT 0)
Gleason 9 means you are in a fight for your life...Your testosterone level is a secondary issue...So which is more important to you? I would have a long talk with your treatment team about this..Internet banter is one thing but this is a high-stakes game....
Posted 11/22/2016 3:21 AM (GMT 0)
Ouch, sorry to hear that MT. Prediagnosis I was only at 270 so I am concerned about what my rebound will be. I wish you luck on the next test. -JR
Posted 11/22/2016 5:04 AM (GMT 0)
Fairwind, As I understand it since I'm no longer at castrate level post ADT, my testosterone is "on." From a potential PCa recurrence, it doesn't matter if it's 111 or 400. Of course, I would want to make sure I fully understand that risk, but my MO is the one that has raised the possibility of supplementing my testosterone so it doesn't seem to be an area of concern to him.

That said, I would much rather have a natural recurrence of my testosterone, rather than supplementing it. I realize there are potential risks to testosterone replacement therapy from a stroke/blood clot perspective. (And I fully expect heart disease to eventually knock me off, not PCa.) At this point, I'm just looking to gather more info, but the possibility is on my radar screen, which it never was before.

CaliJR...my T ranged from 275-375 pre-treatment. And it was going up after finishing ADT, although certainly not in a steady line. But this last reading did give me pause. Maybe it will be a blip and my mojo will be back soon...
Posted 11/22/2016 1:32 PM (GMT 0)
Michael - I agree with your understanding of the Saturation Theory (see research papers by Morgentaler, et. al. - I don't have the citations handy. TA would.) The theory is that as long as T is above castrate levels, it may as well be as high as it wants. The prostate tissue and the prostate cancer tissues only need T to be above castrate levels to function and grow. More does not make them grow more. It does function a lot like an on-off switch. If T is above castrate level, it is sufficient. If it is below, it is not sufficient. End of theory. Research seems to prove it.

That said, I really do not know how I would feel if I had your pathology rather than mine. That is a really personal choice between conservative management and quality of life. I do know that with my pathology, I've chosen quality of life with the possible risks.

A lot of us here seem to have lived most of our lives with relatively low T levels, and we managed. It is only when levels get too low that QOL takes the big hit and we feel compelled to act. I really feel for the guys on life-long ADT, but given the position many of them find themselves in, it wouldn't be a difficult choice to make.
Posted 11/22/2016 3:47 PM (GMT 0)

Michael_T said...
Since finishing my ADT in April of 2014 I’ve had some ups and downs with my testosterone and it’s never truly rebounded. It did reach 275 this March 2016, but unfortunately since then the trend has been downward: 162 in July and now 111 this November. Simultaneously, my FSH is high, which is a possible indication that my testicles aren’t working well.

My baseline T before starting HT was 364, so I didn’t go into this as a particularly high testosterone kind of guy. And frankly I’m okay with the idea of my T hanging around in the 200s. But I’m not crazy about 111—perhaps I’m imagining this, but I don’t feel like I have the same pep at 111 as I did when I was in the 200s.

My next PSA/testosterone test is in March and depending on the results then, I might consider supplementing my testosterone. Any thoughts on that? BTW, my PSA has been pretty steady in the 0.15 to 0.20 range.

Hello my friend......I wish I could help, but I haven't checked my T levels in awhile and I've already expressed my own issues with firmness. I'm still getting the overnight erections and the sex hasn't been great by any means, but I'm content with that for now.
Posted 11/22/2016 7:25 PM (GMT 0)
There are a couple of medicines you can try to jumpstart natural production: human chorionic gonadotropin (HCG) and Clomid (Clomiphene). HCG is a subcutaneous injection, clomid is a pill. They are not expensive. The idea is to do a couple of injections and a few weeks of pills to see if T levels come back. If not, go to Plan B. Plan B would be transdermal testosterone. The nice thing about transdermal is you can start at a low dose, and raise it as desired, without the peaks one gets from injections.
Posted 11/22/2016 8:21 PM (GMT 0)
The other nice thing about the transdermal gels is that they mimic the body's natural cycle of T levels being higher in the morning (morning wood, anyone?) then tapering off toward night. The peaks are daily, and are nowhere near the magnitude of the peaks possible with longer-term injections.

TA - thanks for bringing up the HCG/clomid pair. How could I forget that? I used clomid 30 years ago. . . I can remember the dates, because our daughter is now 30 years old.
Posted 11/23/2016 12:52 AM (GMT 0)
I appreciate the further insights and support. Paxton: the way I'm feeling now is nothing like being on ADT and, like you, I feel for the guys that are on it for the duration. If I ever had a recurrence, I think what would bug me the most would not be the actual recurrence, but knowing I'd have to go back on ADT. I'm content to hang on for now and just see what happens with my next test. I think I'd want to know that I seem to be permanently stuck in the low 100s before I took any action.

TA: thanks for the additional tips. Jumpstarting natural production certainly seems like a smarter way to try and start.
Posted 11/23/2016 4:00 AM (GMT 0)
Any chance you've developed obstructive sleep apnea?

I didn't have a baseline T until after my first PSA test following my prostatectomy in 2011. During a recurrence of PCa, my T went down into the low 100s reaching a nadir of 104. That stretch lasted six months. about a year later, and following SRT, I dipped into the 100s for a while with a low of 174. I've bounced around since but currently am in the mid-300s.

I had hip surgery in 2014 and had two overnights in the hospital. During the night, while I was sleeping, I set off the breathing alarm a bunch of times due to less than five respirations per minute and sometimes stopping for longer stretches. I'd suspected apnea for a while, and my wife was convinced of it already, but it wasn't until this summer that I did a sleep study and got a confirmed diagnosis of OSA.

There is a link between OSA and low T. You end up tired because of the sleep interruptions and tired because of the low T. Double-whammy. I've been on a CPAP machine now for about a month and getting longer stretches of sleep. Haven't checked my T since I've been on that but will see how it does over time. HRT is not in my future as my Uro is avoiding it since I already had one recurrence. Hoping to see some improvement in the T as well as in the ED sometime down the road.

Not having gone through ADT, I realize my journey is way different than yours. Thought I'd just toss that in as something that contributes to low T but may or may not be applicable to you.

..
Posted 11/23/2016 5:43 PM (GMT 0)
Interesting about the link between OSA and T levels--I had no idea. As far as I know, I don't have sleep apnea as I presume my wife would be aware of it, but I can't say I know enough about it to how obvious it is. I would say I rarely sleep all the way through the night--I go to bed pretty early (about 9:30 pm) and generally wake up once or twice a night and sometimes read until I fall back asleep.
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