Announcement Module
No announcement yet.

Low Normal symptoms

Page Title Module
Move Remove Collapse
Conversation Detail Module
  • Filter
  • Time
  • Show
Clear All
new posts

  • Low Normal symptoms

    Hello all

    First post here, but have been reading the forums regularly since I had my diagnosis in Feb 11 (at the age of 38). I had the orchidectomy on 10th Feb 2011 - stage 1 (but some vascular spread) seminoma and single adjuvant Carboplatin afterwards, with no real complications. Treatment and surveillance at Chelsea and Westminster Hospital in London - everyone has been excellent throughout.

    Since then, my testosterone levels have been variable, and whilst I am still within the normal range, I am 'low normal' and I seem to have some of the classic symptoms of low testosterone even over one year since the operation, and the chemotherapy.

    Luckily (in a way) I was having my testosterone levels checked for a good while prior to the diagnosis as I had initially presented to my family doctor with ED and been prescribed Levitra which improved things a good deal. Since my first test in July 09, my T levels had been dropping, some 18 months or so prior to diagnosis, presumably due to the developing tumour:

    July 09 18.6
    Oct 09 16.2
    Nov 10 15.6
    March 11 (post op, pre chemo) 9.6
    June 11 (post op, post chemo) 14.2
    Jan 12 11.5
    April 12 12.1

    The main symptoms I feel are fatigue and grogginess some days (I find it very hard to catch up if I sleep less time one night), sweating a bit during the night, tiredness after meals - especially lunch, finding it hard to lose the weight I gained, and I feel erections could be stronger too. I felt pretty much like this for the first 4 months after chemo, then I felt much better - normal even - now I seem to be feeling sluggish again.

    The doctor who's monitoring the testosterone is a sexual health specialist rather than an endocrinologist and seems satisfied that as I'm not outwith the normal range (and my SHBG is good at 19) I don't need testosterone. Maybe he's right of course, but I certainly recognise many of the symptoms other guys have described in this forum.

    Should I just wait and see what another 6-12 months brings - I realise TRT is not to be entered into lightly - or should I push for referral to an endocrinologist and / or TRT?

    Grateful for any advice and opinions - and thanks a lot for reading.

  • #2
    Had the same general experience as you:

    1) had definite symptoms of low T before the diagnosis
    2) Fatigue after meals, night sweats
    3) Initial positive "surge" after the I/O followed by a decline

    Not sure I'd be functioning at a high level if not for TRT. No regrets whatsoever from my standpoint. I will say that it has been a challenge to get the medication "just right" -- in fact, this is still a quest after about 16 months on TRT.

    I waited about 4 months before doing anything about the low T...very bad time for me.

    7/2010: stage 1B mixed NSGCT. Left I/O + 1X BEP. TRT (pellets). All clear as of 8/2012


    • #3

      thanks for your reply and it is interesting to read your experiences.

      Looking back I too feel that I had similar symptoms due to declining T prior to my diagnosis too - I had been feeling increasingly lethargic but was attributing it to just being tired - in fact I had booked some leave from work and was going to book a trip somewhere sunny to recharge the batteries. Subsequent events overtook this however!

      I am sure the doctor will judge me to be not low enough for the time being to give me TRT, and he'll probably retest in about 3-4 months' time. Meanwhile I shall also see my GP to see if there's anything else going on.

      thanks again.