PSA Results good Testosterone results confusing

First testing in 6 months. Finished SRT November 2018. Last lupron shot was in November 2018, it was a 3 month shot, so end of my treatment was February, 8 months ago.

PSA came back at <.05. (MSKCC lowest level of detection is .05).

Testosterone came back at 97. My last T result was 149!!! A month ago. Always test in the morning. Last test was at a different lab, Northwell Health (big hospital system). But i dont think that would account for such a big difference. Here is history of results and location...
8/22/2018 - 322 MSKCC - Baseline before first adt shot
9/24/2018 - 5 - MSKCC
10/23/2018 - 6 - MSKCC
11/20/2018 - 4 - MSKCC )DATE OF LAST 3 MONTH SHOT)
04/05/2019 - 7 - MSKCC
5/29/2019 - 48 - NORTHWELL HEALTH
7/12/2019 - 62 - LABCORP
9/10/19 - 149.8 - NORTHWELL HEALTH
10/8/2019 - 97 - MSKCC TODAY

So i guess i would like to know, has anyone else experienced this kind of drop/setback on the way up? Its very frustrating, and i am concerned that i may never get back to the normal range, which i know happens to some guys. With only 6 months on ADT, i would have thought i would be in the 200's by now. My RO stated that it generally takes 6 months to a year to get back to baseline (332 in my case) but that he thinks i might get back much quicker(didnt ask what he based that last part on, but obviously he was wrong).

Its also frustrating because, i THINK, it renders my PSA pretty much useless as a tool to measure success of treatment.
Any thoughts?

My doctor tells me that measuring T levels is tricky and can give weird results. Just from a data standpoint I'd suggest that one of the two recent T reads is likely an anomaly - either the 149 or 97 isn't correct (ie lab/measurement error). You'll have to have another data point or two to know for sure.

a PSA of < .05 is a PSA of <.05. Still good and your T is not 0 or castrate level, so while it's not as wonderful as you hoped, it's still not bad.

All you can do is see what happens at the next test.

and yeah, it's frustrating. PC sucks.

Prato,
I'm wondering what you're unhappy about - if in fact you're unhappy. Maybe frustrated, which is understandable - but that's kinda par for the course with this disease/treatments. To me the very bright spot is that you're undectable with a T well above castration! 🙂

Patience is one of life's greatest virtues my friend.
Thanks mattam, that was very helpful. In fact, I'm not unhappy, but yes, frustrated. The hot flashes are really getting old as is the roundness of my belly which i did not have before ADT and cannot seem to get rid of.
But yes, i will be patient, and while my T seems to be on a slow trajectory, at least its going up.

I had not thought of the fact that my T is above castrate levels so that probably gives some weight to the undetectable. THnk you

Post Edited By Moderator (Pratoman) : 10/8/2019 10:46:52 AM (GMT-6)

my dr tested my T level one time only and that was well after my testosterone came roaring back. however I checked the testosterone box on a couple more blood tests until he got wise to it. every test was over 600.

The first time I came off of Lupron my T-level got up to the low 200s. But then my PSA started to rise and my T went back down to ~150.

But your PSA is good, so it's probably not a good comparison.

Ken, hoping you are well and all looks good. Different labs, different results. Stick with the same one for peace of mind. Best, Howard

So I had my follow up with the NP at my RO’s office today. Key points
—-97 is lower than they would hope at 8 months out but I’m still 4 months away from a full year from ADT ending so give it time
—-if there was cancer still present, it’s possible that even a T level of 97 could cause PSA to become detectable
—-not unheard of for T to fluctuate , even by 50 points from test to test, so she didn’t see a reason to retest
—-next visit 6 months. After 2 years from SRT, if I remain undetectable I’ll start seeing them annually rather than semi annually.

Nothing I didn’t know, other than T fluctuating that much. Not sure I buy that. I’ll probably retest in my own in a few weeks when I am down in Florida.

They are planning a trial using Clomid, which she is going to keep me in mind for if I am interested. She’s not sure yet what the parameters would be but she said that my RO, Zelefsky, is big on off label use of drugs so he might give it to me anyway if I’m interested if my testosterone doesn’t come up on its own. This drug is something that’s given to women, I think to promote menstruation when it’s not happening, not exactly sure but she explained to me that rather than being a testosterone supplement, it is a drug that provokes the pituitary gland to stimulate the body to produce testosterone on its own. Not sure if it’s something I’d want to do but hopefully my T keeps rising and I get back to my baseline and I don’t have to think about it

Thank you for sharing Prato. I find this interesting as I also had relatively low T before my SRT and I am wondering about its eventual post SRT trajectory (albeit it being out of my control). I asked my RO and he said the typical “everyone is different”.

Ken your undectable and got some testosterone go to Florida and enjoy life! 👍 And don't forget to eat a chocolate donut once and a while! 🍩🍩

Larry

Prato

I had my last 3 mo. Eligard shot in June of 2016. My T started up slowly and got up to 39. Since then each time I have it retested to keeps going down. My PSA is <.05. Yesterday the T score was 13. MO doesn't want to supplement because of the Gleason 8. Small hot flashes now and then, other than CRS I seem to be doing ok.
Go to Florida

Carl

In this video Dr. Mulhall, after talking about the effects of the lack of testosterone, presents his study about testosterone recovery after cessation of ADT (at minute 10.25) and gives the following example (at minute 18.05): there is a 60% chance to get back to normal testosterone levels within two years, there is a 10% chance to stay on castrate levels and there is a 5% chance to get back to baseline level.
https://grandroundsinurology.com/testosterone-recovery-profiles-after-cessation-of-androgen-deprivation-therapy/
So in general you have a good chance to achieve normal testosterone levels but a low chance to get back to baseline.

DAVE, I am retesting on my own next week. If it’s not up I might take you up on your offer. 😂 as far as your list goes.....see responses below


One bit of caution however, if you take these 100 units all at once the SE's could be:
Randomly cutting off drivers on your way to work, - I do that every day anyway
Having the urge to run up 30 flights of stairs, - not happening; ever
Engaging in passionate and heated political discussions, - dangerous
Pestering your wife all day on your days off,and, -with great pleasure
Possibly having dreams of young, tall, blond ladies in different stages of undress chasing you through the mountains while you sing,"The hills are alive".starting to happen even at T=97 😂

Pratoman,
What are the bad side effects you are experiencing with low testosterone level?

I am in a similar place.
Last 3 month Eligard Sept 2017. I was on it for 9 months.
April 2018 (7 months after ending Eligard) my testosterone was at 104 ng / DL.
Side effects: very little physical stamina and I gained 20 pounds. After walking 1 city block, I had to sit down and rest. Also serious ED.

My urologist suggested Clomid. testosterone peaked at 406 May 2019. My stamina had improved significantly. ED had gotten worse so I stopped Clomid. Oct 2019 testosterone had dropped to 299. Stamina had declined,

Very recently, I got a testosterone injection as a test to see what happens.
Within 3 days, I felt much better. Much less fatigue. ED was unchanged.
We are trying to figure out what to do next.
I am reluctant to continue to get testosterone injections. I would prefer something like Clomid which might encourage my body to produce its own testosterone and maybe restore my stamina and drop weight.
I have to get my PSA checked to make sure that the extra testosterone does not cause it to go up.