I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

Turned down for testosterone replacement therapy

User
Posted 13 Apr 2015 at 20:06
Following an abysmal winter of continuous coughs, colds and fatigue, my GP found that my testosterone level was very low. He referred me to the local NHS specialist for consideration for testosterone replacement therapy. Without seeing me, I was turned down because of the risk of reigniting my prostate cancer, despite my no longer having a prostate and having unmeasurable PSA levels for the past four years. Five minutes on Google has yielded reference after reference citing studies showing that the risk of PCa recurrence through TR therapy after prostatectomy is negligible to not existing. Before I start creating a fuss and daring to question the experts, has anybody else had experience of this sort of decision?
Tony
TURP then LRP in 2009/2010. Lots of leakage but PSA < 0.1 AMS-800 Artificial Sphincter activated 2015.
User
Posted 19 Jul 2017 at 20:39
Hi Tony

My OH has been growing a very substantial moob....though never had low T symptoms other than what I always called a "quality not quantity" attitude....in other words we have never had anything like enough sex in our 25 year marriage until ironically last year... the year we knew it was about to change irrevocably with RT at age 53. We tried to make up for lost time....!!!
Anyway turns out his testosterone levels were through the floor last year despite having a very hairy body and good muscle tone with ED never once having been an issue the 6 to 12 times a year we had sex. This low level has continued after RT and the endo wanted to treat him with T therapy. The urologist has said not advisable as was only 6 months after surgery. I think he has recommended waiting a few years. In the meantime nothing works and his moob is getting bigger. This bothers him even more than no sex life!

Just wondering did you ever get Therapy and have things improved any? Surprised there is so little on here about low testosterone!
User
Posted 20 Jul 2017 at 17:38

Misty, there's probably little on here about low testosterone because so many of us have it! A natural consequence of hormone therapy, of course. But that doesn't mean we have to grow moobs (surely two?). I haven't and I have had HT for ten years. Raise this with your OH's consultant. The problem can be treated and obviously in your case should be.

Good Luck!

AC

User
Posted 20 Jul 2017 at 18:31
Hi A.C..
One much more significant one...the other one is fairly normal! His testosterone has been low for about 5 years he thinks but this didn't affect his hair growth, strength or ability to achieve and maintain an erection on demand. (Not as often as I'd have liked but we had young kids and a very busy life) He went to doctor last Jan 12 months with a list from me of things to get checked. Testosterone came back through the floor...but GP only alerted us to that later...first off there was the minor problem of a PSA of 4 which rose to 4.8 in six weeks. I was convinced cancer was in his lymph nodes then because of the moob and a very anxious 5 months ensued for me until we had a definitive diagnosis. He, on the other hand, took it all in his stride fair play to him. He HASN'T had Hormone Therapy!!! Luckily the cancer was contained within the prostate. BUT he has had no ED consultations, not much happening below and while his Endocrinologist recommends Testosterone treatment, his Urologist is afraid that if the cancer came back he wouldn't know if it was from the T Treatment or if it would have come back anyway...so we wait.
User
Posted 21 Jul 2017 at 08:37

While I was going through the preliminaries for my AUS insert, my urologist (whose knowledge and expertise I trust) agreed to confirm that there was no risk that he could see of a recurrence of my prostate cancer from TRT. With some reluctance, the local health authority accepted the second opinion and TRT was started. Getting the level of dose was a bit rocky at first with testosterone levels going up and down like a yo-yo. However, about a year ago, my haemocrit and haemoglobin levels went up and, as a result, the TRT dose has had to be reduced to the point where it is almost useless, pointing to the possibility of another lousy winter; a pretty depressing prospect to put it mildly.

Before agreeing to the TRT prescription, Endocrinology wanted to do an inspection of the state of my prostate. Much as I might have enjoyed that, I had to point out that my prostate, if it still existed, was in Birmingham and I wasn't.

One upside though. With or without TRT, no sign of one or more mboobs but (and I can hardly believe I am confessing this) very sensitive nipples.

Tony
TURP then LRP in 2009/2010. Lots of leakage but PSA < 0.1 AMS-800 Artificial Sphincter activated 2015.
User
Posted 21 Jul 2017 at 18:02

Misty, Tony has illustrated well the problems of mucking about with testosterone levels when you have had PCa. As I tried to make clear, moobs are not normal, even with zilch testosterone in one's system, and there are lots of ways, preferably non-surgical, of dealing with them or it, in your OH's case. I would make myself a nuisance to get this unhappy situation sorted out. It may just be a question of exercise and diet.

Go for it!

AC

User
Posted 22 Jul 2017 at 23:29
Thanks Tony and A.C. The indignity of it all....you dodge one bullet only for another to get you!! My poor man had to take Nurofen today for his sore boob. Nothing worse than sore boobs except sore boobs when youre a guy!! (He can still laugh!!)
I 've a friend who had brachytherapyv and HT. I suspect his T levels are through the floor too because he has a full head of hair, doesn't know if he can have sex (Though he's a bit religious so many that's the reason!!) And has the most spectacular pair of moobs despite having lost about 4 Stone! Therefore not so sure about diet and exercise being a solution in itself though have stomach fat does encourage oestrogen production. My OH could do with losing about 14 to 20 lbs. He does resistance and conditioning exercises every morning but now the soreness bothering him for some of them. He also cycles around town. Has been checked by a breast cancer specialist also....not that at least! Will be interesting so see what pans out. Has ED to deal with too but not much interest in taking little blue pills when as bothered as he is. Mind you it's not making him go around all depressed... it's a low grade being bothered... he's a stoic to say the least! Will keep ye posted!!
 
Forum Jump  
©2018 Prostate Cancer UK