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Low Testosterone Diagnosis

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  • Low Testosterone Diagnosis

    Let me start by saying that this is the only spot I have been able to find that has anyone remotely going through what I am going through...and I am extremely grateful for that. This will be a long post, so I apologise in advance for that, but I really don't have anyone else to tell it to and I am so desperate for some kind of familiarity. The best way for me to tell it is by a timeline I think....

    It started last year in approximately April...I had an immediate symptom. My erections were almost immediately half strength...I had been having issues with my wife, and I thought that it was something emotional, but even in the past I have had issues and been able to have full erections all my life, so I didn't know what was going on. I didn't have any other symptom, so I didn't think a lot of it, but through the next month...same thing. Every single erection was about half strength. Not only that, but I was unable to keep this 50% erection for a decent duration. After a bit, I went to my doctor and he gave me a sample of helped me get better erections, but it wouldnt get better. After another month, he did some bloodwork and the results came back low testosterone. This was about July 1st. I get free/total confused, but the number was 240. He said that it should be around at least 280-1100 for my age (34)

    I was just recovering from a tonsilectomy...and got the lab paper that said to come in to discuss it. I was totally unaware of what it meant...and really didn't feel any symptoms at all other than the erection problems. When he told me that I needed testosterone therapy and the problems I would have, I was so confused. He prescribed me Testim gel and I got the prescription. I was told that I had hypogonadism and it was irreversable and I would need the therapy for life. It was a 5mg tube and I started the next morning. Within a few hours, I started shaking...trembling is more like it, and just started feeling like crap. Also, started getting what I guess are 'hot flashes' the back of my ears, behind my arms, back of my neck, and my testicles 'burned' with quick short bursts of heat. I was super depressed and also, my taste buds started going bad, everything I ate was tasteless...After 4 days, nothing had changed and I made an appointment. My doctor said that I was just depressed and gave me a Lexapro sample. That very night...I could not sleep at all...It is like my mind would not 'turn off' and I felt 'needles' all over. Anyways...I was so scared about what was happening, that I stopped taking anything. I didn't sleep but maybe an hour each night. The next 4 days, my wife had to take me to the ER because I was suicidal...The best way to describe it was like I was living in Hell and my mind was tortured constantly. In the evenings, it lessened but never got 'normal' I had never ever felt so depressed in all my life. I spent a day in the hospital and they let me go because that night I leveled out, and they felt the sleep deprivation was causing my mental issues. The morning I was out of my mind, the night I seemed to get better.

    The sleep never changed, and I had to start taking meds to sleep. I was also still depressed....mood was totally rock bottom...cried for no reasons, had no energy, started praying to die of any reason. I didnt keep taking the testosterone treatment, went to a counselor. She said that she had to address my sleep first. She prescribed me Seraquil and it helped me sleep, but without it, I couldn't sleep. I had my testosterone level checked later and it was about 275. They told me that it was just under normal, so I was ok.

    After about a month, I kinda leveled out to a point where I was taking meds to sleep....still do....but wasn't depressed enough to feel like I wanted to die. I was on a low dose of antidepressant (Celexa 20mg). She changed my sleeping pill to Remeron (15mg) It was supposedly an antidepressant with sleepy side effects. She thought it was best for me. This is about November '05. During all this time...I was between jobs and had to pay for everything. Luckily, I was on a sliding scale based on pay, and my wife could make all of our bills. Looking back, I could not have possibly held a job. Mid December, I was feeling about 70% normal. Never got the erection back to full and sex with us became short. I didn't really want sex like I used to, but still did it out of habit I think. My wife and I were going through some issues also. Life was great.... Back to feeling a little normal...I was so frustrated about the 'low testosterone' diagnosis, got to see an indocrinologist....tested again....he said my 'free?' test was about 310....and that I didn't need therapy. Still....I didn't feel normal and couldn't find answers....No energy, couldn't sleep without a pill, no motivation, memory fading, my mood was....neutral. Never really want to do anything, just sit around until time to go to bed. Going to be d was both welcome and a nightmare. But at that time, at least I could function. ***Flashback to when I saw the doctor about the testim*** he said that I should try Angrogel instead....was too scared to try to take it. But I kept the bottle***back to mid December*** I decided to see my doctor again and he suggested that maybe the dose of Testim was too strong and that I should try a squirt or two of Angrogel...he said that it was more accepted by the body he thought. Still not feeling normal and wondering if I ever would, I decided Dec 29th to start on one squirt a morning (1.25 mg I believe) Was anticipating those things that happened when I took Testim, but didn't really feel it....To keep you up to my mood....still felt terrible in the morn but by about 5PM I felt closer to normal than any other time. Still had constant "tremors" They never went away. So at this point, I had decided to ween myself off of the antidepressants because A. I never ever needed them in my history of depression with me, and honestly felt that there was something else wrong with me....still do. B. I couldn't remember a difference when taking them or not. So I am not on Celexa anymore....still on the Remeron for sleep...and begin a squirt a day of Androgel. Don't feel better....dont feel worse. My sister gives me her Ambien to help me sleep. It works good for me so I keep it. After a week of one squirt, I did like my doctor said and increased to 2 squirts....(2.5mg Androgel) No bad feelings...only a hint...ever so slightly of the 'hot flashes' start....actually, I think I had those even at one squirt but they are not nowhere near as intense as the 5mg Testim....and to be honest...even long after quitting the Testim, they persisted....If I recall correctly...up to 6 weeks before I didn't notice them anymore. ( Sorry to be jumping so much in the timeframe, but Im not a good writer ) After a total of 20 days...10 days 1 squirt, 10 days 2 squirts, I lose a nights sleep and get scared that it may be the Testosterone so I quit cold turkey. The next day, I go through some of that depression I had before...not as intense, but almost 2X as much as I was already in....feeling like I wish I was dead again...praying for a heart attack...praying to have an accident while driving...and crying for no reason. This goes on for about 2 weeks and I seem to level back out to 'normal' Puts me to Mid Feb...

  • #2
    Part 2....( sorry too long )

    At that point, I am not taking Testosterone, only 15 mg of Remeron sometimes to sleep....Ambien others, but I still couldn't sleep on my own....Without any meds at all, my symptoms were this: No motivation, apathy, no energy, insomnia, memory probs, but at least "stable" Another testosterone test at this time reveals me to be about 315....never tested above that during all tests....but the other measure....Free or Total, was high...the smaller number I want to say 19. Nothing changes at this mood is always the same, not good in the morning, 4-5 PM it gets better...not great, but least I start doing very small things I enjoy like watch movies, play games with my kids (video games as I didnt really have any energy) Mid march....not on the Remeron at all...only AmbienCR for sleep. It works, but I only sleep 6 hours max. But still...I used to fight for 3-4 hours and the 6 is better than never sleeping. From that point I have to get a job, couldn't just rot away, and I was hoping the routine would help and honestly, we needed the money badly....I was a burden on my family and wife and Never in my life had been like that. I got work in sales ( my whole work history was in sales ) I had to put on a fake smile and 'act' happy at work to pass myself off, and even felt semi-happy at times, but mainly couldn't wait for the day to end so I could come home and wish things would change.

    I'm still employed there and do a decent job, but I am not half the man I used to be prior to April last year. I was always happy, uplifting, and positive mood continuously. I still only have 50% an erection, and can't sustain it for long at all. On rare occasions, I actually 'want' sex, but usually do it out of habit. My mood is good enough to pass off to everyone that I am just a dull guy. My memory is terrible...I have to write down things all day or I forget. I never had any of those issues before. And it was litterally overnight that they changed. I have no idea what my testosterone level was before April last year.....Thats horrible that males don't have that charted at least once per 5 years when growing up, if only for a reference point. I think that my vocal chords are thinner....I was in a band and used to sing, and cant' hit the lower keys I used to, and also my 'falsetto' voice is almost totally gone. If I don't take anything or change anything...I think I could function for the rest of my life, but I have no zest for life, I dont look forward to anything, I just exist. I want my old self back, to have spontaneous sex, and be able to perform in have a good memory/ be happy instead of 'blah' To participate in my family life again instead of go to work, come home, sit a bit, take a sleeping pill, repeat.

    Does anything sound familiar to any of you? Please give some advice. I am going to my doctor this week to get a refill on my Ambien and I am going to request another Testosterone test. If it is in the 300ish range, does anyone live normally at that level? I know that this is not normal for me though....I hate to think that I may never get back to normal. My theory is that when I took the Testim, it was like a catalyst for my testosterone imbalance, and when I stopped, my system crashed....maybe Testim was wrong for me. I just don't know. But honestly....prior to taking the Testim, my only symptom was the erection prob. After taking that, quitting it in 4 days, and until life has never been the same.



    • #3
      HI Chris,

      Your story is familiar yes.
      When you go to the doctor, as him to test for the following.
      Serum Testosterone, LH, FSH, Prolactin, SHBG and Thyroid panel.

      We can then be defiinite about the advice we give.

      For now, I think the dose of Androgel was very low. The dose of Testim will not have shut down your natural supply permanently. Four days may suppress the system a little, but it should rebound on cessation.
      So something else is going on perhaps. Having said that, the cocktail of drugs you have been taking makes analysis very difficult.

      Sleep disturbance is a known potential side-effect of Testosterone therapy.
      This may sometimes be overcome by adjusting the time of application.

      The dose you have been given is not enough in my opinion to restore a decent Testosterone level. 300 is not a good level for an aging man, much less one of 34, when levels should be close to their peak.

      Let us know the test results and we can help from there.

      You are on the right track, but it will take time to get it right.

      Feel free to email me from my Testosterone Deficiency website, which is linked below.

      best wishes,

      The Testosterone Deficiency Centre

      Associate Editor
      The Testicular Cancer Resource Center

      Director and writer
      A Ball Dropped


      • #4
        I think my last Total testosterone test was 222 or 232.Im 36 years old.I Had TC Stage 1 diagnosed back in July of 2000.I have only had that 1 Testosterone test done last year.I do notice since my 30's my Anxiety has been going up big time but I had Anxiety bad before the Cancer.I think part of it might be getting into the mid 30's and just noticing how hard it is now to keep in shape.Probably has to do with my metabolism slowing.Can't be sure its lack of Testosterone


        • #5
          low testosterone will slow down the metabolic rate. mine seemed to come to a halt but since HRT it doesn't seem to be as slow!! may want to check it out!
          diagnosed 01/15/2005 bi-lateral seminoma stage IIa,4cm lymph node, right I/O & partial left I/O mar/2005, 18 days of radiation, remaining left I/O- aug/2005, surveillance, Wife did IVF oct/2005, DAD OF BABY GIRL born 08-02-2006!!! testosterone implants May 2008


          • #6
            Congratulations on the new Baby.Its hard to say if my metabolic rate has changed because for the ordinary person to go from age 30 to 36 most of them without TC see a big change.I guess its impossible to tell unless I get alot of tests done on all my testosterone level's.I have not seemed to lose much strength which would be 1 sign that my Testosterone is not real real low I lift weights alot and just don't see much difference in Muscle Mass.Anxiety has gone up and weight is hard to control.


            • #7
              sounds familiar!!!!! i would at least look into it!!
              diagnosed 01/15/2005 bi-lateral seminoma stage IIa,4cm lymph node, right I/O & partial left I/O mar/2005, 18 days of radiation, remaining left I/O- aug/2005, surveillance, Wife did IVF oct/2005, DAD OF BABY GIRL born 08-02-2006!!! testosterone implants May 2008


              • #8
                Yeah,but I have a $1500 deductible with my insurance.Its either age,stress,or just low testosterone.I think its a combination of all 3


                • #9

                  My symptoms seemed to happen overnight for me. Like I mentioned, the first obvious was the lack of a full erection and inability to keep it....was this the first symptom for most low testosterone diagnosees?


                  • #10
                    there is no one particular sign that starts the process of needing HRT. there are many symptoms. yes, at our age things are going to change but if you will research, there are many out there that believe that low tetsosterone is one of the most missed diagnosed problems. as you age, your body produces less testosterone. so as having less to begin with because of TC and one less testical or two, that process would be initiated sooner than a normal male of the same age.
                    diagnosed 01/15/2005 bi-lateral seminoma stage IIa,4cm lymph node, right I/O & partial left I/O mar/2005, 18 days of radiation, remaining left I/O- aug/2005, surveillance, Wife did IVF oct/2005, DAD OF BABY GIRL born 08-02-2006!!! testosterone implants May 2008


                    • #11
                      I think it is misdiagnosed too.I heard that the Free testosterone Test was the more accurate Test that could be done.I didn't get that one.I have not had problems with erections except when i get out of shape and a large waist line.But,thats a fact with the average non TC patients.I do think exercise without a doubt keeps me from most of the problem's some of us guy's have encountered after TC.I just started Lexapro (7 Days) which is basically similar to Celexa.This has sexual side affect's but since I have no girlfriend right now it doesn't matter.The TC I had 6 year's ago is not why I am taking Lexapro.I think turning age 35 and My mom unexpectably passing recently got me thinking that life was passing me by and I missed out on alot of social oppurtunities.I think getting caught up in dwelling on TC was a problem for me the past 5 years but nothing compared to losing my Mom from a back operation that was not suppose to be life threatening.It just goes to show you don't have to be sick and since my mom has passed I no longer believe that the TC will be coming back.I do have joint pain's but I had a bad case of Lymes Disease when I was 20 and Im sure that is what cause's my joint pains.Lymes Disease was 100 times worse then the TC as far as it making me feel sick, but the I know the word Cancer is a tough one to hear.


                      • #12
                        i was just yesterday reading an article in may edition of golf digest on shaun micheel. he was diagnosed with low T a while back. after almost ruining his life and his career he was checked and he now uses what was described as "a gel he rubs on his shoulders daily"(androgel i'm sure). he said it has drastically changed his outlook on and off the course. i tried to find the article online but couldn't. just thought it was interesting to hear it from someone w/o TC.
                        diagnosed 01/15/2005 bi-lateral seminoma stage IIa,4cm lymph node, right I/O & partial left I/O mar/2005, 18 days of radiation, remaining left I/O- aug/2005, surveillance, Wife did IVF oct/2005, DAD OF BABY GIRL born 08-02-2006!!! testosterone implants May 2008


                        • #13
                          Re Nickohs

                          I was not able to get a test this current visit. The doctor that was there was a substitute doctor who did not think that I needed a testosterone test due to my most recent level of 339 ng/dl. I took out my older test results to see if this gives you any idea of what to recommend. The first test was taken on 11/23/2005

                          Serum Testosterone 305 ng/dl
                          Free Testosterone 15.07 ng/dl
                          %free Testosterone 4.94 % (high flag)
                          Amenorrhea Profile
                          LH 3.9 mIU/mL
                          FSH 2.0 mIU/mL
                          Prolactin 8.2 ng/mL

                          Then the next test was taken on 12/13/05

                          Serum Testosterone 433 ng/dl
                          Free Testosterone 20.52 ng/dl
                          %free Testosterone 4.74 % (high flag again )
                          TSH 1.193 uIU/mL
                          Prolactin 7.0 ng/mL

                          I have no idea what these mean. I know that the very first diagnosis was taken on 6/30/2005: and that the testosterone was 240. This is what started all of my doctor visits. At that time, I had no symptoms other than the erection problems. Now, I have so many problems I don't know where to start.. Are these numbers helpful for advice? Please help if anyone has ideas.


                          • #14
                            Your pretty low, at the level your at you should have significant symptoms.
                            Aged 23 ;; 09/06 left I/O ;; Markers normal ;; 100% Seminoma Stage 1. ;; 10x8x16mm & 7x7x8mm ;; rete testis invasion. ;; no vascular invasion. ;; surveillance. ;; HRT.