Low Testosterone - Looking for options alternative to the NHS

Hi Consett

Mate - i hear you - I've been in the same boat for 4 years --try can cut a  long story short - was 42 , 5 days commute (100km a week) + running + charity events - then lefty testical removed and it all changed - horrible feeling like living through a fog and treacle like body response to doing anything, no libido either!!!! - oncologist initially said it would be ok after 6 - 12 months , after 12 months the same, went to GP and had tests like yours, they were low "but within normal range" - i think mine hovered around 11 or 12. moved house so new oncologist in leeds he told me "to get a grip and i'm healthy and live with it" - i was so angry and upset - another GP and set of tests (first one was done at 1pm and registered a testosterone level of 5.4!!!! but was considered invalid because of the time) , second test was again low but within normal.

another year and another house move - 3rd oncologist who now said i was going through the male menopause, and thats that.

Started to look at Optimale and other "sources"  - but got quite scared about it all .... some of the side effects sounded unpleasant!

I had gone from 68kg to 80kgs, so went on a strict diet back to 72kg -  went to GP about some other issue and told him about my problems and starting breaking down in the room - he actually listened, did a battery of tests and insisted on a referral to my NHS endocrinologist - 4 months waiting list but last week finally spoke to her  - the tests showed low but normal testosterone levels but a SIGNIFICANTLY high SHBG hormone that removes testosterone from your body (test was called a detailed Free Testosterone hormone panel test i think)  and i have a profile of a 60 year old male

she said it was COMMON FACT this happens to a significant amount of people after a single testical removal and is usually seen later in life

another set of tests a few days ago and waiting to see about going on Testosterone replacement !!!

dont give up mate - if your GP doesn't do anything goto another GP and another and insist and a full battery of tests - tell them your not going to take no for an answer and want something done even if you end up going private - my GP actually said that he knows people who go private for him just to refer them, as even the Endocrinologists sometimes cannot do anything because of NHS guidelines , and find good results, just simply get a referral to a private consultant (even the same ones on the NHS) who can sort you outwith the guidelines....

the important thing is to go with something that involves a decent amount of monitoring and tailoring, rather than just selling you plans/drugs as side effects might be an issue.

really hope you get this sorted and get something sorted really soon !

OutoftheBlue

Thanks for the quick response, its a difficult one as I often look back at the point of TC diagnosis, I would have taken my current situation as a trade off. That said I feel like I am riding around on flat tyres, Thankfully its just the weight gain and id say a waking energy level of 20% with energy dropping to about 10% by lunchtime and bed by 8pm most weekday nights, Weekend is here and been to bed for 2 hours this afternoon, still sleep ok on a night usually 8.5 hours a night.

Exercise was my thing up until last year and now I cant think of anything worse had a resting heart rate of 46bpm which is now up to 62. An excellent Vo2max which now sits at fair (granted Vo2max is a measure of fitness, that said its frustrating to see the decline)

I have read a lot on various forums and this topic certainly seems to be a fight being fought by many TC survivors which unfortunately falls on deaf ears and a scaling range which isn't fit for purpose.

I have a telephone call with my oncologist on Monday and I am going to push for some intervention from them.

Hope you get sorted and get your zest back soon.