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getting back to normal after ADT

Posted by lacraig1 @lacraig1, 1 day ago

I had 3 shots of Lupron and one pill of abiraterone acetate (general Zytiga) to suppress my testosterone. I stopped this, because it was simply too disruptive. Last shot was early December 2025. I still have this disruption. I don't sleep well. I keep waking up, feeling like my hormones are racing around in my body Nap often. I feel lousy much of the day. I'm thinking it's affecting my heart. Want to see an endocrinologist. Anybody else having/had a hard time getting back to normal?

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lacraig1 | @lacraig1 | 19 hours ago
In reply to @pesquallie "@lacraig1 I was 82 when I started Lupron during 44 radiation treatments. It almost killed me..." + (show)
Profile picture for pesquallie @pesquallie

@lacraig1

I was 82 when I started Lupron during 44 radiation treatments. It almost killed me and I had to stop at 4 months. My testosterone only recovered to 122 and continued to fall to 111 over the next year. My horrible side effects continued night and day. Three weeks ago, my urologist put me on a low dose of testosterone and most of my side effects stopped within the first week. Six months earlier he had absolutely refused to give me TRT but after reading about the latest studies showing that increasing testosterone does not promote cancer, he was adamant that I raise my testosterone. I am giving myself shots but there are creams and patches that are also effective. It is beginning to look like testosterone does not support prostate cancer and I wonder if the shots of Lupron that I got may have been harmful.

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@pesquallie I was told that testosterone feeds the cancer. Suppressing it doesn't kill cancer.

I stopped the Lupron after 3 shots. but maybe the abiraterone acetate (Zytiga) was the culprit.

First two Lupron were harmless. Third time the shot and the pill and that was it. No more

thank you for writing

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lacraig1 | @lacraig1 | 19 hours ago
In reply to @n227rv "What are the studies that show that increasing testosterone doesn't promote cancer? Forgive me if this..." + (show)
Profile picture for N227 @n227rv

What are the studies that show that increasing testosterone doesn't promote cancer? Forgive me if this subject has been covered here before - I am a newbie.

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@n227rv news to me

ACT wouldn't be needed then. My doctor insists on it.

thank you

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Jeff Marchi | @jeffmarc | 19 hours ago
In reply to @lacraig1 "@jeffmarc thank you yes, testosterone wasn't even in my question. Is a lack of testosterone the..." + (show)
Profile picture for lacraig1 @lacraig1

@jeffmarc thank you yes, testosterone wasn't even in my question.

Is a lack of testosterone the cause of all this discomfort? I don't know, and I am starting to think that this is affecting my heart. And certainly not getting good sleep isn't good

I want to see an endocrinologist. It doesn't seem anyone else has

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@lacraig1
Low testosterone causes all these problems and more.

Nobody gets all of the side effects, but most people get a lot of them.

flashes
Fatigue
Muscle deterioration
Bone weakening
Brain fog
Depression
Weight gain
Joint pain
Difficulty in breathing

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1 reply
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Jeff Marchi | @jeffmarc | 18 hours ago
In reply to @lacraig1 "@jeffmarc thank you yes, testosterone wasn't even in my question. Is a lack of testosterone the..." + (show)
Profile picture for lacraig1 @lacraig1

@jeffmarc thank you yes, testosterone wasn't even in my question.

Is a lack of testosterone the cause of all this discomfort? I don't know, and I am starting to think that this is affecting my heart. And certainly not getting good sleep isn't good

I want to see an endocrinologist. It doesn't seem anyone else has

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@lacraig1
It definitely can affect your heart. I personally am getting a lot of Skipped beats. Low testosterone is not good for your heart.

Most prostate cancer patient don’t die of prostate cancer they die of heart disease.

Having very low or no testosterone is linked to a higher risk of heart disease, weight gain, and type 2 diabetes. While low testosterone does not directly damage heart tissue on its own, it is tied to poor blood vessel health, higher body fat, and increased inflammation.

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jim18 | @jim18 | 17 hours ago
In reply to @lacraig1 "@jeffmarc My testosterone was even in my question. it has creeped up to the mid-60s. I..." + (show)
Profile picture for lacraig1 @lacraig1

@jeffmarc
My testosterone was even in my question.
it has creeped up to the mid-60s. I am 77.
I was on ADT for 3 months and am approaching this 10 month marker.
My concern is these symptoms plus lack of good sleep are affecting my heart and overall health.
I want to see an endocrinologist.

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@lacraig1 You have effectively been on ADT for almost a year. Castrate levels are at 50 so despite being a little higher you are still well short of the 280-320 that is low normal. A lot of the symptoms of low testosterone are the same as menopause including hot flashes, night sweats, and bone loss. With an increase in testosterone either natural or by TRT (gels, patches, shots) will make them go away. You did not state how serious your cancer was. If it was metastatic than TRT has a high risk of making the cancer worse. If the ADT was part of a treatment plan where the prostate was removed or radiated than the time already spent with low testosterone may have provided 90%+ of what a longer course could achieve. If going for TRT discuss with your urologist and aim for low normal to eliminate the symptoms while minimizing the risk.

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2 replies
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pesquallie | @pesquallie | 17 hours ago
In reply to @n227rv "What are the studies that show that increasing testosterone doesn't promote cancer? Forgive me if this..." + (show)
Profile picture for N227 @n227rv

What are the studies that show that increasing testosterone doesn't promote cancer? Forgive me if this subject has been covered here before - I am a newbie.

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@n227rv

Below in quotes are some recent studies. You will have to Google to read the articles.

"Testosterone replacement therapy following definitive treatment for prostate cancer: a scoping review of safety and efficacy | International Journal of Impotence Research"
Conclusion: TRT does not increase the advancement of prostate cancer and may actually decrease cancer growth. 11/26/25 summary of 12 studies.

"Testosterone and prostate cancer: What's the connection? - Mayo Clinic"
Conclusion: Studies have shown that testosterone replacement therapy doesn't seem to increase the risk of prostate cancer returning. 10/29/25

"youtube.com/watch?v=Pb3ENO3oSso&t=1381s – Kristen Geiger and Alex Scholtz, “TRT After Prostate Treatment”. Recommend TRT for treated patients."

"Testosterone Supplementation After Prostate Cancer Treatment
YouTube - ISSM International Society for Sexual Medicine - Dr. Mohit Khera (Baylor College of Medicine) and Dr. Gerald Brock (Western U. London) explain the evolving view on testosterone and prostate cancer, noting a shift from seeing testosterone as harmful to recognizing potential therapeutic or preventive roles. Low testosterone is linked to higher risk of high-grade cancer, recurrence, and poorer erectile recovery. 3/28/25"

"Testosterone Recovery Uncertain after Androgen Deprivation Therapy for Prostate Cancer | Memorial Sloan Kettering Cancer Center"
Study Solves Testosterone’s "Paradoxical Effects in Prostate Cancer | Duke Health"

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lacraig1 | @lacraig1 | 17 hours ago
In reply to @jeffmarc "@lacraig1 Low testosterone causes all these problems and more. Nobody gets all of the side effects,..." + (show)
Profile picture for Jeff Marchi @jeffmarc

@lacraig1
Low testosterone causes all these problems and more.

Nobody gets all of the side effects, but most people get a lot of them.

flashes
Fatigue
Muscle deterioration
Bone weakening
Brain fog
Depression
Weight gain
Joint pain
Difficulty in breathing

Jump to this post

@jeffmarc I am surprised that the lack of this one hormone causes all these problems. I am wondering now if these symptoms are affecting my heart.
Oh, you omitted really rotten sleep.
I want to see an endocrinologist.

REPLY
1 reply
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lacraig1 | @lacraig1 | 17 hours ago
In reply to @jim18 "@lacraig1 You have effectively been on ADT for almost a year. Castrate levels are at 50..." + (show)
Profile picture for jim18 @jim18

@lacraig1 You have effectively been on ADT for almost a year. Castrate levels are at 50 so despite being a little higher you are still well short of the 280-320 that is low normal. A lot of the symptoms of low testosterone are the same as menopause including hot flashes, night sweats, and bone loss. With an increase in testosterone either natural or by TRT (gels, patches, shots) will make them go away. You did not state how serious your cancer was. If it was metastatic than TRT has a high risk of making the cancer worse. If the ADT was part of a treatment plan where the prostate was removed or radiated than the time already spent with low testosterone may have provided 90%+ of what a longer course could achieve. If going for TRT discuss with your urologist and aim for low normal to eliminate the symptoms while minimizing the risk.

Jump to this post

@jim18 thank you
I had a molecular test which showed no evidence of disease.
My PSA is zero, but my testosterone is low, so that doesn't mean anything.

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lacraig1 | @lacraig1 | 17 hours ago
In reply to @jim18 "@lacraig1 You have effectively been on ADT for almost a year. Castrate levels are at 50..." + (show)
Profile picture for jim18 @jim18

@lacraig1 You have effectively been on ADT for almost a year. Castrate levels are at 50 so despite being a little higher you are still well short of the 280-320 that is low normal. A lot of the symptoms of low testosterone are the same as menopause including hot flashes, night sweats, and bone loss. With an increase in testosterone either natural or by TRT (gels, patches, shots) will make them go away. You did not state how serious your cancer was. If it was metastatic than TRT has a high risk of making the cancer worse. If the ADT was part of a treatment plan where the prostate was removed or radiated than the time already spent with low testosterone may have provided 90%+ of what a longer course could achieve. If going for TRT discuss with your urologist and aim for low normal to eliminate the symptoms while minimizing the risk.

Jump to this post

@jim18 thank you

REPLY
Profile picture for Jeff Marchi
Jeff Marchi | @jeffmarc | 16 hours ago
In reply to @lacraig1 "@jeffmarc I am surprised that the lack of this one hormone causes all these problems. I..." + (show)
Profile picture for lacraig1 @lacraig1

@jeffmarc I am surprised that the lack of this one hormone causes all these problems. I am wondering now if these symptoms are affecting my heart.
Oh, you omitted really rotten sleep.
I want to see an endocrinologist.

Jump to this post

@lacraig1
You’re right I did not mention sleep as a problem, but so many people on here Have complained about the fact that while they’re on ADT, they can’t get decent sleep. Very hard to get to sleep for some of those people.

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