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Not right after 9 months

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  • Not right after 9 months

    I had my IO last December. Nine months out and I am still not back to normal, and have many of the typical signs of low T discussed in other threads - low energy, reduced muscle, reduced drive, fatigue, emotional... Just as examples, if I don't get 7 hours of sleep I will doze off in my office or sitting at a traffic light. I used to do P90x in the gym 5 days a week, now I barely motivate to go once a week and when I do, I struggle to finish even a partial workout. I just don't have the strength or endurance that I did a year ago.

    My wife was looking after me as usual and made me call my doctor to get a testosterone test. My baseline T before surgery was 563 - probably about average maybe slightly below (I'm 42). Total testosterone is now 370. My primary care who ordered the test says this is not an abnormal result and recommended to do nothing. I assume I should speak with my urologist and get his perspective? I don't want to get treatment if I don't need it, but also would like to get certain aspects of my life back to 'normal'. Should I expect to improve with more time since surgery? I guess I am not sure what will help.

    I struggle with this whole experience. My pathology showed benign leydig cell lesions (and a host of other non-cancerous abnormalities) so I am very fortunate to be in-the-clear from any cancer, and didn't have to endure any chemo or other treatments. But my urologist and my primary care physician can't offer a lot of insight as they hadn't seen a similar case before. The best they could offer was bi-annual ultrasounds to keep an eye on the remaining testicle for any issues.

    Appreciate your advice.

  • #2
    Any doc that thinks a 34% drop from baseline is normal is clueless about T levels and should probably be fired.
    Some reading:
    http://www.artofmanliness.com/2013/0...terone-levels/
    http://www.menshormonalhealth.com/no...ne-levels.html
    http://www.mayomedicallaboratories.c...rpretive/83686

    Your current levels are "normal" for an 80+ year old man. Your baseline was low normal for your current age. Low numbers with no symptoms may be fine, but low numbers, combined with your low T symptoms, indicate a need for TRT that any good doc should recognize. Sadly most do not & it can be very difficult for anyone with a testicle to get TRT prescribed.I blame the d@mn "athletes" who abuse testosterone to enhance performance. They have caused T to be a controlled substance that docs are afraid to prescribe.

    Adequate testosterone is vital to men's health all their life. Lean muscle mass,circulatory system, bone density all suffer without it. It's not all abpit sex or body building. Find a doc willing to help.

    Dave
    Jan, 1975: Right I/O, followed by RPLND
    Dec, 2009: Left I/O, followed by 3xBEP

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    • #3
      My T doc stresses to me that as long as i'm between the minimum and maximum, he treats my symptoms, not a number. He asks me about each of the low T symptoms you describe when I visit to make sure I am being treated properly, not just to a number. You may have to look around for someone who is more comfortable treating by symptoms rather than number.
      6/5/15: bHCG 27,AFP 8.66, LDH 361, 5.6cm lymph node - Stage IIC
      6/16/15: Left I/O 85% EC, 10% chorio, 5% yolk sac opinion 2 (mayo) 90% EC, 10% yolk sac
      7/7/15: bHCG 56, AFP 42, LDH 322
      7/13/15 - 9/18/15: 4xEP
      10/1/15: bloodwork normal, ct scan shows 2 lymph nodes 1.0cm
      10/26/15: 2nd opinion on CT results - lymph nodes normal. Surveillance!
      4/6/16: 1.7cm X 1.5cm lymph node found with markers normal.
      4/20/16: RPLND @ IU - teratoma only!
      9/18/2017 all clears up to this date!

      Comment


      • #4
        Originally posted by biwi View Post
        My T doc stresses to me that as long as i'm between the minimum and maximum, he treats my symptoms, not a number. He asks me about each of the low T symptoms you describe when I visit to make sure I am being treated properly, not just to a number. You may have to look around for someone who is more comfortable treating by symptoms rather than number.
        You are extraordinarily lucky Biwi. It is normally very difficult to find a doc like yours, I have yet to find one.I doubt many will be able to.

        Dave
        Jan, 1975: Right I/O, followed by RPLND
        Dec, 2009: Left I/O, followed by 3xBEP

        Comment


        • #5
          After seeing the incompetence of so many doctors with testosterone supplementation, I plan to be well-versed in this and offer treatment for low testosterone.
          Diagnosed at age 31. Treated in NYC. Now living in Ottawa, ON, Canada.

          7/1/2015: felt tiny lump on side of R testicle
          7/30/2015: Ultrasound shows 2 intra-testicular masses.
          7/31/2015: tumor markers normal, CXR clear
          8/5/2015: R orchiectomy
          8/11/2015: Pathology: 1.2 x 1.0 x 1.0 cm, embryonal 80%, seminoma 20%, with LVI and rete testis invasion
          8/14/2015: CT abdomen/pelvis clear, Stage 1b
          8/24/2015: started 1 x BEP

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          • #6
            That is good to hear, RKJD. Would it be too much to ask for you to also consider becoming an advocate/educator for those needing trt ? We could really use a Doc E equivalent for those of us needing TRT for the rest of our lives.It's a tall request, I know. Please just give it some thought.

            Dave
            Jan, 1975: Right I/O, followed by RPLND
            Dec, 2009: Left I/O, followed by 3xBEP

            Comment


            • #7
              Thanks for the input and for the articles. My urologist is much more experienced here than my GP and considering my situation he thought it was worth trying trt, although he is not sure if insurance will cover since my levels are within the normal ranges for men over age 19.

              Here is another journal article I found useful. You have to do some conversions but this Journal of Endocrinology paper has data from several studies that are useful to indicate what is 'normal' within various age ranges.



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              • #8
                One more useful article that addresses everything from symptoms, diagnosis, treatment, risks, etc. Hope others find this useful, and sorry if I am posting things that someone has already shared...

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