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Testosterone Replacement Therapy Webinar

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User
Posted 31 Jul 2024 at 16:36

The International Society for Sexual Medicine (ISSM) ran an interesting Webinar on Monday on Testosterone Replacement Therapy, which is now available to watch on demand. It's aimed at clinicians, not patients, but the presentations might be useful for anyone considering this after prostate cancer treatments, to understand what the current evidence for safe use of this is.

https://www.issm.info/meetings/issm-webinars/on-demand-webinars/issm-slams-webinar-on-testosterone-sexual-medicine-and-prostate-cancer

User
Posted 02 Aug 2024 at 19:09

Was going to start a new thread but hope you don't mind if I piggy back on this one.  Are there any documented cases of testosterone never getting back to normal after HT? It's been 18 months since my last Zoladex implant.  I'll admit I'm getting desperate and rather obsessed as my T still hasn't come back 4.5 years after starting HT.  Of course I am extremely grateful that HT has contributed to saving my life.  I'd be a fool not to be.  But I can't ignore the fact that it has come at a cost both physically and mentally.  Now I am really desperate for any sign that my T might return. 

I am obese now but despite a huge amount of exercise (I would say a lot for a 38 year old never mind a 68 year old) and watching what I eat I simply can't shed body fat.  My blood pressure is through the roof despite being on two BP meds.  All my GP wants to do is refer me to some "Active Lifestyle" thing.  I've told them I do resistance training with weights six days a week, I walk my dog twice a day every day, and because he's getting older so the walks are slower and shorter I bought myself a treadmill earlier this year and do a cardio workout 4 or 5 days a week.  But I still can't lose fat.  My man boobs sicken me. 

I've found out three of the meds I am on are known to reduce testosterone.  Without consulting my GP I have stopped taking two of them, Simvastatin and Amlodipine, and have started cutting down on the third, Venlafaxine.  I know this could have major implications for my health but that's how desperate I am.  I'm fed up with feeling like half a man.  I need some light at the end of the tunnel.  Sorry to go on so long but this is getting me down so much.

User
Posted 03 Aug 2024 at 01:53

This study: testosterone recovery of men ranging from 47 to 97 suggests that >50% of the 750 men suitable for the study, didn't recover their testosterone. Being over 80 decreased the chances of recovery and having ADT for > 6 months did likewise, though if I read it correctly, there wasn't any measurable difference between medium and long term ADT.

The webinar does come with a fair list on unknowns, in terms of what TRT might do in the longer term but on balance [?] it would seem like a far better option (personal judgement) to have it rather than going without it. While these studies focus on figuring out the risk of having TRT, I never see any evaluation of the risk of not taking it. I say that in the sense that not having testosterone leads to all the effects we know and hate so much, weight gain, loss of muscle mass, reduction of bone density, loss of libido, higher cholesterol levels, possible cognitive decline and a few others. All of these things can contribute to a shorter lifespan, not just lower QoL. In the short term, say 2 or 3 years, we can recover but long term some of these side effects, like decline in bone density, are cumulative. Even if medicos tend not to factor that in, maybe we can.

No testosterone after 1.5-2.0 years? Fair chance it might never recover it seems, so perhaps TRT should be on the table.

Jules

Edited by member 03 Aug 2024 at 06:51  | Reason: Not specified

User
Posted 31 Jul 2024 at 16:36

The International Society for Sexual Medicine (ISSM) ran an interesting Webinar on Monday on Testosterone Replacement Therapy, which is now available to watch on demand. It's aimed at clinicians, not patients, but the presentations might be useful for anyone considering this after prostate cancer treatments, to understand what the current evidence for safe use of this is.

https://www.issm.info/meetings/issm-webinars/on-demand-webinars/issm-slams-webinar-on-testosterone-sexual-medicine-and-prostate-cancer

User
Posted 01 Aug 2024 at 21:45
Thanks Andy, I have listened to the first two talks but not yet had time to sit through the discussion. It may be something to ask my consultant about, since ADT/salvage RT I have (subjectively) not felt hormonally back to where I was before treatment. Certainly things haven't recovered as quickly as you reported (I valued your graph of PSA and Testosterone with time).
User
Posted 02 Aug 2024 at 20:24

Bean121,

So sorry to read this.  I hope you can find a solution that works for you.

Best wishes,

JedSee.

User
Posted 03 Aug 2024 at 22:24

Yes, I would have thought you should not consider TRT until your Testosterone has stabilised (leveled out) after finishing HT. This means tracking Testosterone from the end of your HT, and checking to see how it recovers. It might take a year or more to start recovering, and then wait to see where it stabilises. Perhaps if you get to 18 months or more and it's still unchanged from from when you were on HT, you might consider it's not going to return at all.

I think that if you start taking TRT too early, there could be a good chance you will mess up the recovery and end up on TRT for life (although I haven't seen any research in that). The HPG-Axis feedback loop will not be detecting that you need more Testosterone.

Ideally, your Testosterone level should be compared with your pre-treatment level, because there's a very wide variation between men as to what's "their" normal. Unfortunately, Testosterone level is rarely measured before starting HT, so no one knows what your level should be after treatment.

(Ironically, I did a talk yesterday on how the HPG-Axis works, and how the hormone therapy drugs interact with it.)

User
Posted 04 Aug 2024 at 22:33

Decho,

I was going to ask my oncologist if I could have Testosterone tests when I was coming to the end of my HT, but before I got the chance, he already added it as he said it was necessary to make sense of the PSA test values, as your Testosterone returns. I also heard one of the oncologists at UCLH say they usually measure Testosterone with every PSA test, but that's not done anywhere else I know. She said it quickly picks up any problems with the HT.

I did ask for one Testosterone test before then from my GP. I was about to start RT, and got some unexpected erections, so I was worried the last HT injection might not have worked. As it happened, Testosterone was 0.2 which is as low as they measure at that lab, so there was nothing to worry about.

I have been very lucky with both my GP, oncologist, and urologists - they've done anything I've asked for, but everything I've asked for has been justified. A couple of the Testosterone tests were probably not clinically justified, but having turned up to my consultations with the graph, the clinicians were sufficiently curious so see how the curves were going to let me have them. I gave a presentation in April at the European Association of Urologists conference in Paris, and I used that graph in it, so I take the view that justified the tests too.

I did pay for one Testosterone test via Graham Fullford Charitable Trust (mypsatests.org.uk), together with a PSA test. They don't offer Testosterone tests so it's not handled by their computer system, so their office staff had to push it through by hand and let me know the result by hand afterwards. I don't suppose they'd want to do that in any volume.

User
Posted 06 Aug 2024 at 22:13
Andy, you have done very well establishing a relationship with your doctors that has encouraged them to do measurements that are not routine - and getting accepted as a research collaborator.

But I am sure they appreciate your contribution to local support groups (they may not see your posts here). Lecturing on hypothalamus-pituitary-endocrine feedback loops is not for the faint-hearted, even for those with a fair physiology background. Well done!

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User
Posted 01 Aug 2024 at 21:45
Thanks Andy, I have listened to the first two talks but not yet had time to sit through the discussion. It may be something to ask my consultant about, since ADT/salvage RT I have (subjectively) not felt hormonally back to where I was before treatment. Certainly things haven't recovered as quickly as you reported (I valued your graph of PSA and Testosterone with time).
User
Posted 02 Aug 2024 at 09:47

The talks are probably the more interesting part. It would have been good if the first speaker had more time.

Have you had your Testosterone checked? It typically takes longer to return the longer you were on the injections. It can take 18 months to return.

I was surprised to be offered TRT after just 6 months (albeit by urology - my oncologist probably would not have approved so soon), but I said no because it would likely have stopped my own Testosterone recovering, and I wasn't expecting it back by then.

I don't know how typical my recovery experience is. A couple of oncologists have seen my graph and said I'm very lucky, as Testosterone doesn't normally recover that well.

User
Posted 02 Aug 2024 at 19:09

Was going to start a new thread but hope you don't mind if I piggy back on this one.  Are there any documented cases of testosterone never getting back to normal after HT? It's been 18 months since my last Zoladex implant.  I'll admit I'm getting desperate and rather obsessed as my T still hasn't come back 4.5 years after starting HT.  Of course I am extremely grateful that HT has contributed to saving my life.  I'd be a fool not to be.  But I can't ignore the fact that it has come at a cost both physically and mentally.  Now I am really desperate for any sign that my T might return. 

I am obese now but despite a huge amount of exercise (I would say a lot for a 38 year old never mind a 68 year old) and watching what I eat I simply can't shed body fat.  My blood pressure is through the roof despite being on two BP meds.  All my GP wants to do is refer me to some "Active Lifestyle" thing.  I've told them I do resistance training with weights six days a week, I walk my dog twice a day every day, and because he's getting older so the walks are slower and shorter I bought myself a treadmill earlier this year and do a cardio workout 4 or 5 days a week.  But I still can't lose fat.  My man boobs sicken me. 

I've found out three of the meds I am on are known to reduce testosterone.  Without consulting my GP I have stopped taking two of them, Simvastatin and Amlodipine, and have started cutting down on the third, Venlafaxine.  I know this could have major implications for my health but that's how desperate I am.  I'm fed up with feeling like half a man.  I need some light at the end of the tunnel.  Sorry to go on so long but this is getting me down so much.

User
Posted 02 Aug 2024 at 20:24

Bean121,

So sorry to read this.  I hope you can find a solution that works for you.

Best wishes,

JedSee.

User
Posted 02 Aug 2024 at 20:32
Thanks both.

I did ask to get my testosterone measured around last Christmas, and at that point it was around the bottom of the normal range (close to 10 nM or in Americanese 300 ng/dl. But subjectively I am not back to where I was before starting on ADT, with less libido and incomplete return of body hair. I asked my urologist at my last (phone) consultation and he said my subjective feelings may indicate "normal for me" is higher than that figure.

While it may just be wishful thinking I have the impression of very slow improvements over the last six months, but it will soon be 2 years since my last goserelin (Zoladex) "ran out".

Bean121's point about other drugs is interesting. Around the point I had salvage RT my GP ran some routine tests and prescribed amlodipine and atorvastatin - I am not sure whether that was prompted by the treatment or me turning 70. But a non-exhaustive search only showed up amlodipine having testosterone effects in rats (I am not a rat!) and a Cochrane review which concluded the extant studies didn't support an effect on testosterone of atorvastatin - though there is a logic in reduced cholesterol limiting the substrate for testosterone synthesis. I suppose I could try a month's "holiday" from one or the other to see if things improve.

The webinar talks didn't deal with the after effects of ADT, and I have still to see what came up in discussion. Like Andy I don't want a testosterone supplemention to adversely effect natural recovery from treatment.

User
Posted 03 Aug 2024 at 01:53

This study: testosterone recovery of men ranging from 47 to 97 suggests that >50% of the 750 men suitable for the study, didn't recover their testosterone. Being over 80 decreased the chances of recovery and having ADT for > 6 months did likewise, though if I read it correctly, there wasn't any measurable difference between medium and long term ADT.

The webinar does come with a fair list on unknowns, in terms of what TRT might do in the longer term but on balance [?] it would seem like a far better option (personal judgement) to have it rather than going without it. While these studies focus on figuring out the risk of having TRT, I never see any evaluation of the risk of not taking it. I say that in the sense that not having testosterone leads to all the effects we know and hate so much, weight gain, loss of muscle mass, reduction of bone density, loss of libido, higher cholesterol levels, possible cognitive decline and a few others. All of these things can contribute to a shorter lifespan, not just lower QoL. In the short term, say 2 or 3 years, we can recover but long term some of these side effects, like decline in bone density, are cumulative. Even if medicos tend not to factor that in, maybe we can.

No testosterone after 1.5-2.0 years? Fair chance it might never recover it seems, so perhaps TRT should be on the table.

Jules

Edited by member 03 Aug 2024 at 06:51  | Reason: Not specified

User
Posted 03 Aug 2024 at 21:14
Thanks Microcolei for that reference. As you suggest, I may raise the question of TRT once the full two years is up.

The main concern of the webinar was whether testosterone from therapy might increase the risk of cancer recurrence, my thinking was more about whether it would interfere with natural recovery of production (since there is a feedback loop to the pituitary).

User
Posted 03 Aug 2024 at 22:24

Yes, I would have thought you should not consider TRT until your Testosterone has stabilised (leveled out) after finishing HT. This means tracking Testosterone from the end of your HT, and checking to see how it recovers. It might take a year or more to start recovering, and then wait to see where it stabilises. Perhaps if you get to 18 months or more and it's still unchanged from from when you were on HT, you might consider it's not going to return at all.

I think that if you start taking TRT too early, there could be a good chance you will mess up the recovery and end up on TRT for life (although I haven't seen any research in that). The HPG-Axis feedback loop will not be detecting that you need more Testosterone.

Ideally, your Testosterone level should be compared with your pre-treatment level, because there's a very wide variation between men as to what's "their" normal. Unfortunately, Testosterone level is rarely measured before starting HT, so no one knows what your level should be after treatment.

(Ironically, I did a talk yesterday on how the HPG-Axis works, and how the hormone therapy drugs interact with it.)

User
Posted 04 Aug 2024 at 11:04

Bean121 if that is a statin you’ve stopped taken, you should really consult your dr. I read something about stopping them is not a good idea as the liver goes into overdrive and produces way more cholesterol to compensate. So please look after yourself and get your cholesterol checked. 

User
Posted 04 Aug 2024 at 19:31

Originally Posted by: Online Community Member
Are there any documented cases of testosterone never getting back to normal after HT? It's been 18 months since my last Zoladex implant. I'll admit I'm getting desperate and rather obsessed as my T still hasn't come back 4.5 years after starting HT. Of course I am extremely grateful that HT has contributed to saving my life. I'd be a fool not to be. But I can't ignore the fact that it has come at a cost both physically and mentally. Now I am really desperate for any sign that my T might return.

Hello Bean,

I can't tell when you finished HT from your bio. When would the next injection have been if you hadn't finished, and how long were you on HT? I'm trying to work out if you would have expected your Testosterone back by now?

Do you know what your Testosterone level is now, and what it was before treatment.

Statin and blood pressure medication are in part at least counteracting the effect of no Testosterone, which pushes up cholesterol level (and both HDL and LDL are bad cholesterols) and pushes up blood pressure.

User
Posted 04 Aug 2024 at 20:42
Thanks Andy, seems you agree with me about the risk of TRT following HT. Unfortunately I didn't have doctors like yours who routinely tracked testosterone levels, the only measurement I have was at my request. In particular, once salvage RT was decided there was no measurement.

I think what I will do is request a repeat testosterone this autumn, about a year after the last one and two years after stopping HT. If things haven't changed in a year I will ask about TRT, if there is evidence of further rise I will wait till it stabilises.

User
Posted 04 Aug 2024 at 21:33

I’m just wondering how many of you have managed to persuade your GP to give you a testosterone test at the same time as your PSA? I had to blag my way into getting a test when I had my very last Prostap 3 jab. It would be really good to track it as well as my PSA every 3 months now that I’m finished HT.

Or…any recommendations for Private Tests?

Derek

User
Posted 04 Aug 2024 at 22:33

Decho,

I was going to ask my oncologist if I could have Testosterone tests when I was coming to the end of my HT, but before I got the chance, he already added it as he said it was necessary to make sense of the PSA test values, as your Testosterone returns. I also heard one of the oncologists at UCLH say they usually measure Testosterone with every PSA test, but that's not done anywhere else I know. She said it quickly picks up any problems with the HT.

I did ask for one Testosterone test before then from my GP. I was about to start RT, and got some unexpected erections, so I was worried the last HT injection might not have worked. As it happened, Testosterone was 0.2 which is as low as they measure at that lab, so there was nothing to worry about.

I have been very lucky with both my GP, oncologist, and urologists - they've done anything I've asked for, but everything I've asked for has been justified. A couple of the Testosterone tests were probably not clinically justified, but having turned up to my consultations with the graph, the clinicians were sufficiently curious so see how the curves were going to let me have them. I gave a presentation in April at the European Association of Urologists conference in Paris, and I used that graph in it, so I take the view that justified the tests too.

I did pay for one Testosterone test via Graham Fullford Charitable Trust (mypsatests.org.uk), together with a PSA test. They don't offer Testosterone tests so it's not handled by their computer system, so their office staff had to push it through by hand and let me know the result by hand afterwards. I don't suppose they'd want to do that in any volume.

User
Posted 06 Aug 2024 at 22:13
Andy, you have done very well establishing a relationship with your doctors that has encouraged them to do measurements that are not routine - and getting accepted as a research collaborator.

But I am sure they appreciate your contribution to local support groups (they may not see your posts here). Lecturing on hypothalamus-pituitary-endocrine feedback loops is not for the faint-hearted, even for those with a fair physiology background. Well done!

 
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