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Very low testosterone after ADT not rebounding after 8 months post treatment

Chasu profile image
19 Replies

I had 6 months of luprolide ( 2 injections) in conjunction with 44 radiation treatments. I was gleason 3+4. My latest test showed my testosterone level is 5 with undetectable psa 8 months after completion of treatments. I have of course symptoms of low T ( abdominal fat, boobs,insomnia, muscle weakness/ depletion, depression, balance issues, etc. )

My urologist is happy with the extreme low T number and subscribes to the idea that testosterone causes Pc. At this stage of my treatment, I would like to get some help with my symptoms. Is it still accepted that testosterone should kept that low after what seems to be a successful outcome of my Pc? I have had lot T all of my life ( I think)due to undescended testicles at birth treated with surgery at 10 years old. So my Pc wasnt caused by highT. Anyway, my testosterone level is not rebounding at all and could I try some supplementation at this point in time?

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Chasu
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19 Replies
Tall_Allen profile image
Tall_Allen

Actually, there is a known correlation between PC and chronic LOW T levels in adult life.

In some men (including me!) radiation can cause T levels to be depressed for about a year. If it doesn't rebound, talk to your doctor about treatment with Clomid and/or hCG to stimulate your natural T production.

westof profile image
westof in reply toTall_Allen

Hi, tapered off Z&P in January and Lupron 1 year ago.On 5/26 T was 115 and yesterdays level dropped to 105.

Also, before ADT my T was 381 on 10/2018

Any cause for concern?

Thanks

Tall_Allen profile image
Tall_Allen in reply towestof

The date of the last Zytiga is the important one. Hopefully, your testicles will wake up eventually. If they don't come back to normal by next January, talk to your urologist about trying those.

westof profile image
westof in reply toTall_Allen

Thank you so much!!

jazzy53 profile image
jazzy53 in reply toTall_Allen

Given the connection between testosterone and the spread of prostate cancer, should we be cautious about taking medicine to boost our T after treatment? Is it possible that persistent low T is a blessing in disguise? I ask this as someone whose testosterone is slowly rebounding about 9 months after the end of ADT. Of course, I like the return of erections, but I wonder if this nice turn of events could position me for an early recurrence.

Tall_Allen profile image
Tall_Allen in reply tojazzy53

While completely depleting testosterone down to castrate levels (< 50 ng/dl) slows cancer progression, adding more testosterone when it is above about 100 ng/dl does nothing to increase progression in treated men. Studies suggest that TRT in curatively treated men does not increase progression.

nature.com/articles/s41391-...

auajournals.org/doi/10.1016...

jazzy53 profile image
jazzy53 in reply toTall_Allen

That's reassuring. Thanks! To be clear, I'm not considering taking medicine to stimulate T production, just wondering about the implications of T that rebounds naturally after surgery. But I gather the same point applies.

Tall_Allen profile image
Tall_Allen in reply tojazzy53

This is after surgery:

auajournals.org/article/S00...

Chasu profile image
Chasu in reply toTall_Allen

Hi, my T is 5 so no supplementation?

Tall_Allen profile image
Tall_Allen in reply toChasu

ng/dl or nmol/l?

Chasu profile image
Chasu in reply toTall_Allen

5ng/ dL thankyou!!

Tall_Allen profile image
Tall_Allen in reply toChasu

That's very low. Did you ask your doctor about prescribing clomid or hCG, as I suggested?

London441 profile image
London441

T doesn’t cause pca, it only exacerbates what’s there-but not always..

After ending treatment, my T started to rebound significantly (to over 500) at around 7-8 months. Below 50 those first several months. I added HCG on the recommendation of my urologist at about 6 months.

The HCG is probably helping, although I suspect time and a firm commitment to lose fat and an increase in workout volume and intensity are also factors.

How is your weight now and what are your exercise habits? If you are not sedentary and/or substantially overweight you have a much better chance to recover.

You had high baseline T which helps.

If I were you I would get as fit and lean as possible, along with HCG, before resorting to T supplementation. Fat impedes T recovery.

Chasu profile image
Chasu in reply toLondon441

I weigh 185 at 5'11". Havent gained weight surprisingly. I am active by daily bicycling and daily walks. I am lifting weights occasionally. You said I had a high baseline T which is incorrect. My T has been chronically low my whole life due to undecsended testicles at birth. One surgically atrophied early on so only one has been working all these 75 years. Thanks for your response here. Much appreciated! I would like to find a urolologic onconlogist but I'm in remote ares in Wisconsin

cesces profile image
cesces

The relationship between testosterone and prostate cancer is complicated, no intuitive, and basically not well understood.

You should not be messing with it on your own.

There is a treatment called bipolar androgen therapy, where the testosterone is spiked and then suppressed. Only a few docs have experience with this and it is still experimental.

It's used only after adt has failed.

London441 profile image
London441

Ah sorry, your original post read, ‘I’ve had lot T all of my life’ (sic) so I now see you typed lot instead of low, which I read as ‘I’ve had a lot of T all my life’. So…

If you had low T historically you may be in for a very slow recovery and quite possibly not enough of one to make a perceptible difference. This is one of the brutish characteristics of ADT.

On the other hand, your weight isn’t bad and were only on the Lupron for 6 months (longer time on it means slower and less recovery generally).

Still, with your pre-existing low T, I would not expect too much. So what to do?

Unfortunately, maybe nothing for now but get in the best shape you can and wait a while. Your location is admittedly not favorable, but if you can find a urologist on telemed who would agreeably prescribe supplemental T it would likely be only after you’ve maintained undetectable PSA for a longer time.

But ultimately it’s your decision of course. If you try hard enough you can always get what you want-but know it’s riskier to do it early, and 8 months is just that.

People tend to pay too much attention to the scale, so your 5’ 11”/185 doesn’t tell the whole truth.

If you’ve gained fat but not weight it’s because it’s the composition that’s changed-you’ve lost in muscle what you’ve gained in fat, thus no net difference. This is common on ADT, and is the source of your surprise.

I would increase the lifting weights substantially from ‘occasionally’. The biking and walks are great, but you’re dealing with ADT induced sarcopenia, and you don’t want that.

Especially if you hope to up that testosterone. Simple if not easy! Great luck to you!

Horse12888 profile image
Horse12888

T most definitely doesn't CAUSE PCa. The cancer itself can be caused by a huge number of different things, and there's no may to know what caused yours or any individual's. PCa "feeds" on T, which is the reason we do ADT, i.e., to "starve" it. I would be deeply suspicious of any oncologist who doesn't understand this.

T doesn't recover naturally after ADT in a significant number of cases, and needs to be replaced unless the SEs are so mild that they don't present a problem. Eight months later, you're clearly one of them.

Most (but not all) oncs today agree that this is perfectly safe. God only knows what yours thinks.

Tall_Allen is correct in that there are measures to take that will "jumpstart" your body's T recovery. How effective they are and how quickly they work is anybody's guess. And once you start on exogenous (replacement) T, you're on it for the rest of your life, as your testicles will figure out that they're no longer required for this purpose.

I was miserable beyond words on ADT, and, speaking for myself, I would have had exogenous T immediately if mine hadn't recovered, which is identifiable at about the 4 -5 month mark. I quit midway through my 24-month sentence, because I simply couldn't stand it any longer.

Best of luck to you.

addicted2cycling profile image
addicted2cycling in reply toHorse12888

Horse12888 wrote 9 days ago >>> "T most definitely doesn't CAUSE PCa. The cancer itself can be caused by a huge number of different things, and there's no may to know what caused yours or any individual's. PCa "feeds" on T, which is the reason we do ADT, i.e., to "starve" it. I would be deeply suspicious of any oncologist who doesn't understand this..."

Because I am a "total number of functioning brain cells deficient individual" --- 😀

If PCa does indeed "feeds on T" then I would imagine I should have a body ravaged with PCa having begun my biweekly Testosterone injections(of which I will get another after posting) back in January 2016 following treatment for my GL10. BTW, my "T" by this time tomorrow will be in the 1,600ng/dL range as per tests done following previous injections.

Could it possibly be that my surgical castration that eliminated 95% of my DNA "T" along with Avodart for adrenal production allows the ---

"Chemistry. Testosterone cypionate, or testosterone 17β-cyclopentylpropionate, is a synthetic androstane steroid and a derivative of testosterone. It is an androgen ester; specifically, it is the C17β cyclopentylpropionate (cypionate) ester of testosterone" ---

not to be recognized by remaining GL10 cells in my body and up to now hasn't flourished ????

Will60 profile image
Will60

Chasu I only had 7 months of ADT but it has took nearly 3 years for my T to come back to normal, and for the first 12 months post ADT my T didn't register at all. Hope you recovery continues

Regards,

Will

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