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Testosterone Replacement Therapy Conundrum

User
Posted 18 Dec 2018 at 15:31

Not sure where to place this question and the answer to whether I technically even have prostate cancer now is one I can't get a straight answer to (see bio) but this is related...

I have been given some testogel to try to see if it helps with some symptoms I have been dealing with for a few months, testosterone level 10.6 (low for 33?), latest PSA 1.6.  The problem is all the conflicting information around the link between PCA and TRT and secondly whether I do/ever have/had PCA.  I'm torn between giving it a go short term (a few weeks max) to see if it helps me or leaving well alone but potentially missing the answer to the symptoms I'm having and continuing to live with them without improvement.  Anyone got any experience with TRT post/with PCA here? or further opinions or insights?

Thanks

Law

User
Posted 18 Dec 2018 at 18:50
Hello Law, what an incredibly complex gland the prostate is. I confess I haven’t heard of sclerosing adenosis until I read your profile. It appears it is a benign condition.

I found an article which included a short section on this. See below.

“Sclerosing adenosis of prostate is very similar to that of breast. It is a benign lesion with the hyperplasia of both small acini and fibrous stroma. The lesion presents as nodular with well-defined boundary, but without capsule (27). Its histological feature is that the variable sized or shaped glands disorderly embed into prominent sclerotic stroma (Figure 2G). There are both clear secretory cells and amphophilic basal cells in the hyperplastic glands. Besides, some glands are surrounded by a layer of thick and eosinophilic basement membrane-like matter. The cells may have prominent nucleoli and intraluminal acid mucin. Sclerosing adenosis should be distinguished from small acinar adenocarcinoma. In IHC staining, the basal cells are not only positive for HMWCK (e.g., 34βE12, Figure 2H), CK5/6 and p63, but also positive for smooth muscle actin (SMA) and S-100 protein, which suggests those cells have myoepithelial differentiation (28,29).”

The full article can be found here

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4779757/pdf/cjcr-28-01-072.pdf

Having also read about testosterone reference levels it states between 10 and 27 is normal and that this should be measured between 8 and 10 a.m. as this is when T levels are highest.

I have no experience of TRT, because I am on HT I will be at castrate level of T.

Hopefully others will come along and answer too.

All the best.

User
Posted 18 Dec 2018 at 19:24
I am fatigued and sleep is disturbed plus hot flushes too. Having said that I walk, play sports and am very active. I just get very tired.

It’s a blast!

Hope you get things sorted out.

User
Posted 18 Dec 2018 at 21:04
My case was very complex so it was all a bit of a mess. Long history of mental issues although holding a very good job. Pituitary issues which were affecting T and thyroid levels , shift work , young child etc etc. I’m not surprised no one could make their mind up. My T level was lower than normal but my stimulating hormones were low too. Massive sleep problems and borderline chronic fatigue syndrome. I eventually lost my job and was diagnosed Pca 6 months later. I’m not sure what to say , other than if you try it I would insist given your history on at least 3 monthly psa tests or have them done privately

If life gives you lemons , then make lemonade

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User
Posted 18 Dec 2018 at 18:50
Hello Law, what an incredibly complex gland the prostate is. I confess I haven’t heard of sclerosing adenosis until I read your profile. It appears it is a benign condition.

I found an article which included a short section on this. See below.

“Sclerosing adenosis of prostate is very similar to that of breast. It is a benign lesion with the hyperplasia of both small acini and fibrous stroma. The lesion presents as nodular with well-defined boundary, but without capsule (27). Its histological feature is that the variable sized or shaped glands disorderly embed into prominent sclerotic stroma (Figure 2G). There are both clear secretory cells and amphophilic basal cells in the hyperplastic glands. Besides, some glands are surrounded by a layer of thick and eosinophilic basement membrane-like matter. The cells may have prominent nucleoli and intraluminal acid mucin. Sclerosing adenosis should be distinguished from small acinar adenocarcinoma. In IHC staining, the basal cells are not only positive for HMWCK (e.g., 34βE12, Figure 2H), CK5/6 and p63, but also positive for smooth muscle actin (SMA) and S-100 protein, which suggests those cells have myoepithelial differentiation (28,29).”

The full article can be found here

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4779757/pdf/cjcr-28-01-072.pdf

Having also read about testosterone reference levels it states between 10 and 27 is normal and that this should be measured between 8 and 10 a.m. as this is when T levels are highest.

I have no experience of TRT, because I am on HT I will be at castrate level of T.

Hopefully others will come along and answer too.

All the best.

User
Posted 18 Dec 2018 at 19:20
Thanks for your reply, out of interest how do you feel on HT? The main problem I have is extreme fatigue to the point I can't even follow a conversation, completely out of it. Also disrupted sleep and what seems like very light sleep. I wonder if testosterone is a red herring given it is within the normal range and people such as yourself function ok (assuming here) with near to zero?
User
Posted 18 Dec 2018 at 19:24
I am fatigued and sleep is disturbed plus hot flushes too. Having said that I walk, play sports and am very active. I just get very tired.

It’s a blast!

Hope you get things sorted out.

User
Posted 18 Dec 2018 at 19:27
I saw a consultant privately at age 45 due to unexplained ED and significant loss of ejaculate. He did test psa and it was 4 , so was high. They ignored the result. They also found I had pituitary gland problems. Their decision was to put me on TRT. At first Testogel which is a flipping mess , and then injections which helped a bit. They ignored a psa of 6 and then forgot to test again. When prompted by me for a test it came back at 15 and then I had surgery and am now incurable. I believe I already had prostate cancer and it was missed , and they actually fed the cancer tbh. I think ED and reduced ejaculate are way down on the symptoms list , because traditionally it is an older mans disease and these things happen naturally, but I think big alarm bells should be ringing in younger men with sudden onset

If life gives you lemons , then make lemonade

User
Posted 18 Dec 2018 at 20:06
Thanks for you reply Chris, I remember reading your profile when this all kicked off for me a couple of years ago. Experiences like yours push me towards not trying it, thanks for sharing this. That said I haven't had sudden onset ED or reduced ejaculate, and my PSA has reduced from a high of 12 to the lowest ever at 1.6 but the stakes are high, I'm thinking more and more it's not worth it! Can you remember your testosterone level? Did you have the fatigue and sleep problems I described above?
User
Posted 18 Dec 2018 at 21:04
My case was very complex so it was all a bit of a mess. Long history of mental issues although holding a very good job. Pituitary issues which were affecting T and thyroid levels , shift work , young child etc etc. I’m not surprised no one could make their mind up. My T level was lower than normal but my stimulating hormones were low too. Massive sleep problems and borderline chronic fatigue syndrome. I eventually lost my job and was diagnosed Pca 6 months later. I’m not sure what to say , other than if you try it I would insist given your history on at least 3 monthly psa tests or have them done privately

If life gives you lemons , then make lemonade

User
Posted 18 Dec 2018 at 21:27
Ok thank you, Chronic Fatigue Syndrome is what they have told me also, this is really a final shot before accepting that diagnosis as everything else was normal, thyroid, pituitary etc. CFS appears to be an open ended illness, don't know what causes it don't really know how to treat it etc. I'll give it some thought, I have my PSA every 4 months as it is next in February so I will definitely insist on that if I do try it, the uro suggested 4 weeks after I start (if I start) so at least I feel they are considering PSA and my history.

More importantly best of luck with your treatment, I hope you are holding up ok.

User
Posted 19 Dec 2018 at 16:37

Before my diagnosis I was on Testosterone ( gel ) for about 4 years, my level before the gel was 8 ( not sure of units).
I had fatigue, ED, and poor concentration etc. the Testosterone made a huge difference to my general well being. I had regular PSA tests and 12 months before diagnosis they started to rise, slowly at first but then a couple of rapid rises ( +1 TO 8.8 and then to 10.8) so then the usual tests and final diagnosis. I had brachytherapy about 2 months back and all is going fine, hopefully I will eventually be "cured".


Did the testosterone "feed" the PCa? My urologist thinks that it didn't but some information on the web says otherwise. My testosterone level using the gel was up to about 15, and as the urologist said, " that is only about normal" so maybe I was going to develop PCa anyway, who knows?


Strangely I now feel fine, I am no longer on testosterone gel of course,  I still have ED and some tiredness, my concentration and memory are OK but not perfect, but then I am 75 years old so maybe it's normal!


In hindsight I would not have started the hormone replacement, although the benefits were great there was the possibility of feeding a PCa and that risk was never mentioned ( if it existed).

I hope my experience might help you in making your choices, good luck.

John

 

Edited by member 19 Dec 2018 at 16:41  | Reason: clarification

Gleason 6 = 3+3 PSA 8.8 P. volume 48 cc Left Cores 3/3, Volume = 20% PSA 10.8 Feb '19 PSA 1.2 

User
Posted 19 Dec 2018 at 16:56
Thanks John, I'm thinking I'm going to leave it...

12.2 doesn't seem low enough for a start, it's probably the poor sleep etc causing it to be lower (was 14.4 a couple of years ago) rather than vice versa, also this all started in the weeks prior to having my first PSA test in a year after the previous one which prompted a biopsy etc was 12... I had no idea what to expect after such a long time...

How long did the testogel take to make a difference to you out of interest?

Good to hear the treatment is going ok!

User
Posted 19 Dec 2018 at 21:13
Latest thinking is that PC needs testosterone BUT increasing levels does not stimulate PC growth further.
User
Posted 20 Dec 2018 at 10:01
trt is mostly suitable for low risk pc,but what about us high risk locally advanced pc,i am suffering without testesterone,my testesterone is below reference limit,4.55nmol/l.
User
Posted 20 Dec 2018 at 14:51

Originally Posted by: Online Community Member

How long did the testogel take to make a difference to you out of interest?

 

It was not instant by any means, it took about 4 months to have an effect and get the dose sorted out, they ( the docs) tend to start at a low dose and build up.

The results, as I indicated, were very satisfactory and noticeable. 

 

John

Gleason 6 = 3+3 PSA 8.8 P. volume 48 cc Left Cores 3/3, Volume = 20% PSA 10.8 Feb '19 PSA 1.2 

 
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