Who got their T level done before ADT? - Advanced Prostate...

Advanced Prostate Cancer

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Who got their T level done before ADT?

Lewellen profile image
34 Replies

I was a month into ADT before I realized that I had no baseline Testosterone number!I know the treatment is all about reducing T, but now that I'm considering vacation possibilities I think it would be helpful to know what my unadjusted level was.

I think it would be helpful, but honestly I'm not sure why yet.

The best I can come up with is that if my baseline was quite low to start with, I may be more inclined to say yes to the vacay.

If it was high, I might not want to allow that much T back into my system. No vacay?

So I'm wondering who got a baseline T test?

And did that knowledge affect your decisions? If so, how?

Plus a bonus question! 😄

If the T is slow to rise, we get a longer vacay, but don't feel like our old self for very long.

So, has anyone ever taken a boost of T early in the vacay to feel the old way sooner?

Llewellyn

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Lewellen profile image
Lewellen
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34 Replies
GP24 profile image
GP24

You do a vacation to live for some time with a normal T value. If your T value stays low, you will not gain an QOL improvement from the vacation.

I know a patient who takes Toremifene (Farestone) to increase his T value when he starts with an ADT vacation. His doctor is reluctant to prescribe it.

OldVTGuy profile image
OldVTGuy

My doc did one prior to ADT for the express purpose of having a target once I’m off. He told me that if someone has naturally low testosterone he wants to know it going in.

Lewellen profile image
Lewellen in reply toOldVTGuy

There ya go, that explains it better!If my T level were low to begin with, I wouldn't be looking for a "normal" level to return during my vacation.

treedown profile image
treedown

Yes I had a baseline. My decision to stop was to seen if treatment with curative intent worked. T was back within 3 months and didn't know by feeling, it took a new blood test. We are all different but my junk going back to normal size was nice, on the fence about the body hair.

Tall_Allen profile image
Tall_Allen

I agree with you--baseline T serves no purpose.

addicted2cycling profile image
addicted2cycling

T_A wrote - "I agree with you--baseline T serves no purpose."

Maybe a "baseline *T* serves no purpose" but I sure wish I had gotten one BEFORE MY ORCHIECTOMY.

Gl448 profile image
Gl448 in reply toaddicted2cycling

What would that knowledge serve you, you can't reverse it with a vacation after the orchiectomy?

Lewellen profile image
Lewellen in reply toGl448

Isn't TRT an option after orchiectomy? Wouldn't a baseline be useful in that case?

Gl448 profile image
Gl448 in reply toLewellen

Not really. When I was doing TRT prior to cancer diagnosis, I never had a baseline. Doctor will usually just shoot for something age appropriate or that addresses symptoms.

You don't need a baseline to receive effective treatment with TRT (at least outside of the PCa world.

Good luck.

addicted2cycling profile image
addicted2cycling in reply toGl448

Regretfully, I can ONLY imagine what my *B-PCa T* - Before - Prostate Cancer Testosterone numbers were since following my Cypionate injections the *T* tests at 1,600ng/dL and at that level there is very little physical difference then when at 450/600ng/dL before my next injection 2 weeks later.

Gl448 profile image
Gl448 in reply toaddicted2cycling

I'd need to know the lab ranges for your specific lab...on the scales my labs used, 1600 is way too high...

I never felt much difference in how I felt between the lower end of the scale and the higher on TRT, but I did notice results difference between those and ADT in weightlifting. BIG difference, as we all know.

addicted2cycling profile image
addicted2cycling in reply toGl448

Current as I type *T* < 2.5ng/dL which is the lowest my lab reports

p.s. to ^^^ - actually, my uneducated theory is that since I have no testicles making DNA Testosterone, could be my muscles and the GL10 PCa Cells circulating really do not react to the Cypionate since it is artificial. Maybe that's why nothing much has happened even having been on Cypionate since 2016.

On a Cypionate vacation right now and waiting for Blood Work next month to start injecting again

Gl448 profile image
Gl448 in reply toaddicted2cycling

With your wide spread across the T range from injection to next injection, you might try half dose weekly to keep a more stable range.

addicted2cycling profile image
addicted2cycling in reply toGl448

Thanks 👍, I have thought about doing so but since I have no recognizable side effects due the the variation in the numbers I'll stay with the routine.

lowT163 profile image
lowT163

didn’t know mine either. My dr assumed mine was low from the weight I was carrying. It only made a difference to me when I was waiting for it to return.

In the end as the testosterone went up the psa went with it so I’m not so interested.

If you still have a prostate that rise in both will happen. Mine took 3 years to get back to 300 so vacations won’t be happening for me. I have been prescribed T supplements by my MO but to big a coward to do it. Nothing in writing that I’ve seen that says it’s ok for someone with local spread prostate cancer. Best of luck getting information that works for you. There will be nothing you can be comfortable with. I believe the docs want you to have a good QOL so you will get the T supplement if you ask. Some will.

BanjoPicker profile image
BanjoPicker

Lewellen or Llywelyn? (my wife is Welsh) My RO ordered a Testosterone Test before my short course (4-month) Eligard and Bicalutamide. It established my baseline at 432 ng/dL. He ordered another test before I began radiation. It was 8 ng/dL. I took a T test (on my own order) 5 months after my 4-month shot because of my own curiosity and impatience, wanting an end to hot flashes. The results of that test was T undetectable. At 7 months after the 4-month Eligard shot my T test was 337 ng/dL. Urologist was mildly surprised at the rapid return of T. Side effects were gone. I see the only benefit of the T testing was to establish that the ADT short course was effective in testosterone reduction.

Lewellen profile image
Lewellen in reply toBanjoPicker

Haha 😄So sorry Mrs. Banjo Picker, my Welsh name is just a pseudonym 😕

I just love the name. I've been using it for fun in various forms for 45 years!

My favorite spelling is Llewellyn, but I would be delighted to hear what a proper spelling might be; or if they are all proper!😂

j-o-h-n profile image
j-o-h-n in reply toLewellen

To you It may be compelling but to us, no yelling or telling the spelling of LeeWelling....

(Beware the ides of March).

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 03/15/ 2023 11:27 PM DST

BanjoPicker profile image
BanjoPicker in reply toLewellen

Many spellings because when the English invaded Wales, the Welsh had their own 36 letter alphabet. The English forced their 26 letter alphabet on the Welsh so they doubled letters to sub for the removed phonetics. That’s why double L’s and double D’s etc. Many ways to spell the same word.

Llanfairpwllgwyngyllgogerychwyrndrobwllllantysiliogogogoch

London441 profile image
London441

I don’t quite agree that baseline T serves no purpose. I wanted to manage my expectations after I stopped ADT, if for nothing more than the psychological aspect. A slow or non existent return would have had a very different meaning for me depending on high or low baseline for instance.

True though that being more ‘more inclined to say yes to the vacay’ with a low baseline and no if it were high makes no important difference. Simply test frequently and watch it like a hawk. You can always get back on the ADT.

Over and again I say this: Maintaining fitness level and strength as much as possible is critical on ADT, and it also makes a far greater difference than T level for most older guys when you stop it. A typical average total T for men is steadily dropping with age and is commonly no higher than 300 or so and often lower than that.

I advise never to look to a vacation to ‘feel like my old self’. That ship has sailed anyway. Your daily strength and conditioning habits from this point now play a much bigger role.

lookout4 profile image
lookout4 in reply toLondon441

Well said, I have to agree. The "good ol' days'..... right! and we had our time.

NOW, the current lifestyle we live, IS the "new" Vacation :-) I found a workaround though,

Sensor Rings!

s

Sensor Rings
Lewellen profile image
Lewellen in reply tolookout4

Haha, wonderful 👍

Sounds like something my Men's Sexual Health Therapist might suggest 😂

cancerfox profile image
cancerfox in reply toLondon441

A testosterone level of 300 ng/dL or less in men is considered as low, including for our age.

London441 profile image
London441 in reply tocancerfox

Yes sir. 300 is considered the general cutoff point. However, I suspect there are both many older men with 400-500 who look to increase T for a 'fountain of youth' experience when they would do better to improve their overall health, just as there are men with 'clinically' low T who make the most of it and feel great.

cancerfox profile image
cancerfox in reply toLondon441

I don't think that having a decent level of testosterone and doing things to improve your overall health are mutually exclusive. Testosterone complements physical activity to produce healthy bones, heart, muscles, weight control, cholesterol reduction, libido, mood, and energy. If exercise alone was sufficient for humans to thrive physically, hormones like testosterone probably wouldn't have evolved. I agree with you that exercise and weight training are beneficial, I'm a big believer, but they aren't a direct replacement for testosterone or a magic bullet for everything. This is demonstrated by the fact that exercise increases testosterone, it doesn't decrease it. 🦊

London441 profile image
London441 in reply tocancerfox

I don’t claim that exercise supplants the need for testosterone, only that it becomes ever more essential as we age whether we have normal levels of T, castrate level or anything in between.

Of course bearing exercise isn’t a direct replacement for testosterone, but it’s definitely more a magic bullet than testosterone or anything else.

Too many men talk of a ADT vacation as an opportunity to ‘start working out again’ or ‘regaining some of my lost muscle’ after becoming sedentary on ADT. This is backwards. The key to not experiencing dramatic muscle wasting on ADT is to work as hard as you can while on it. It’s definitely tough, and the results can seem negligible, but nothing is more important. Any vacation is then becomes a chance to build muscle rather than play a onerous game of catch up.

It is precisely because of those brilliant complimentary elements of testosterone that we need to work so hard when they’re removed. Even if we would rather nap of course.

Lewellen profile image
Lewellen in reply toLondon441

I'm on board with you almost 100% London 441.Doing a good job of grieving my losses as they happen has been tremendously important for me. And having hopes for my future is important as well.

But nothing beats living in the present and taking care of myself the best I can 👍

London441 profile image
London441 in reply toLewellen

We are on board with each other 100%. That makes 200% by my math.

VCinTx profile image
VCinTx

After 18 months on ADT (Lupron) I told my MO that I was stopping. I had been PSA undetectable for 16 months. We discussed QOL and my testosterone return. I opted for TRT and it has been great for these nine months.

Lewellen profile image
Lewellen in reply toVCinTx

It sounds like your Lupron side effects dropped away very fast! Is that what happened??

I thought Lupron kept holding the T down for something like 7-9 months!

VCinTx profile image
VCinTx in reply toLewellen

You are right in that Lupron will repress T level MANY months after stopping. That is why I got a prescription for Testosterone Cypionate two weeks after stopping ADT.

maggiedrum profile image
maggiedrum

Getting a baseline T level was never discussed yet alone recommended when I started ADT. In hindsight I wish I had that lab analysis. It would have been important to me to see how my T level changed after I stopped ADT because of my very long recovery period after on "3-month" injection of Lupron. The Lupron definitely had the desired effect of lowering my PSA to near zero and it remained there for longer than the 3-months. My side effects lasted 11 months and had a disastrous impact on my QOL. I requested and got a T level test after that and it was at a normal level.

compiler profile image
compiler

I think it is quite important. Suppose your pre-HT T score is 700, but you don't know that. Your first post HT T score (say at 1 month) is 350. Soooo... how do you even begin to interpret that? Ultimately it may not matter as the HT will get you at castrate levels, but over time, if it's going to have a chance to work. Still that first reading would cause me grief with no baseline T score

Mel

SteveTheJ profile image
SteveTheJ

400 before treatment, 9 most recently.

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