26 y/o with lowish T, low free/bioav T...other tests+doc advice?

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    26 y/o with lowish T, low free/bioav T...other tests+doc advice?


    To preface, I apologize for the novel below, I just want to paint a fairly complete picture of how things developed to where it is now. I will try to make underline/bold the main stuff.

    I am 26 y/o, 5'9", 160 lbs, engaged, seasonally active (high in Summer, low in Winter), unemployed (since finishing grad school in May '12,) Type-1 diabetes for 7 years (which is decently controlled), mild ED for 3 years now presenting with worsening issues with ED, libido, emotional flatness, and motivation.
    Small side note: I had diagnosed obstructive sleep apnea 3 years ago, couldn't tolerate CPAP therapy, but in a follow up sleep study around a year ago I was told that I no longer have it, despite no changes in weight. I had two nasal surgeries between these times to remove growths in my turbinates, and I'm guessing that helped my breathing at night.

    I started a dialogue about ED a number of years back, probably around 4 years ago, with my urologist (who I had seen in the past for some minor surgery to remove the "tether" on my uncircumcised penis as well as for discussing treatments for mild-mod Peyronie's Disease, essentially a curvature of the penis resulting from a plaque in the shaft, which I've had at least since I started getting erections.) I got samples of Cialis from him, and more from my PCP later on.

    I started my first relationship (with my future fiance) in late 2011. Libido was good, but I found that I needed some Cialis for reliably being able to keep it up (breaking my 5mg samples in half and taking one each day I was visiting her did the trick.) In early 2012, I had a low-normal total T from a blood test for my PCP (I think it was around 470), which in conjunction with the ED prompted him to prescribe testosterone gel. I saw my endocrinologist (who I see for my type-1 diabetes) about a week later, who suggested I stop TRT to preserve endogenous T production and fertility, and instead continue to manage the ED with PDE-5 inhibitors. I complied, my PCP grumbled, and for the next half year things went pretty well.

    In August of last year, I had an ACL reconstruction in my right knee, which I have recovered well from. Around mid-September, things felt like they were getting worse. My libido was gradually decreasing, and the 2.5 mg of Cialis that once did the trick quite well for me was now doing next to nothing (5mg of Cialis and 12.5mg of Viagra [sample from my PCP] worked adequately well.) Got a routine blood test in late Oct at my PCP's office (testing done at local hospital)

    10/23/12
    Total T: 429 (no range/unit given)
    Free T: 11 (no range/unit given)
    Hgb: 13.8 (14-18 g/dL) L
    MCV: 94.2 (80-94 fL) H
    RBC: 4.23 (4.7-6.1 x 10e6/uL) L
    Vit B12: 1418 (180-914 pg/mL) H ... was occasionally taking multivit w/ B-vitamins at the time
    T4, Free: 1.14 (0.76-1.46 ng/dL)
    TSH: 1.39 (0.358-3.74 uIU/mL)
    Vit D 25-OH: 23.53 (30-100 ng/dL) L ... began Vit D-3 2000IU/day ~1 month after
    Alb: 3.9 (3.4-5.0g/dL)
    AKP: 44 (38-136 U/L)
    ALT: 28 (12-78 U/L)
    Calcium: 8.6 (8.5-10.1 mg/dL)
    Chloride: 104 (98-107 mmol/L)
    CO2: 28 (21-32 mmol/L)
    Creatinine: 0.93 (0.44-1.27 mg/dL)

    I begin supplementing sporadically with HGW and Maca, the Maca did a decent job of restoring libido. During and despite these growing problems, I shopped for engagement ring and got engaged in early Nov to an amazing girl that I live 2 states apart from due to my inability to land a job and her teaching job back in her hometown (we see each other every 3-4 weeks.) In December, I'm getting concerned that the issue will be beyond Cialis and self-treatment soon. I request a blood test to follow up on my concerns with my free T levels, and my endo complied. Test was done with Quest Diagnostics.

    12/18/12
    Total T: 426 (250-1100 ng/dL)
    Free T: 54.8 (46-224 pg/mL)
    Bioavail T: 112.7 (110-575 ng/dL)
    SHBG: 34 (10-50 nmol/L)
    Ser Alb: 4.5 (3.6-5.1 g/dL)
    FSH: 4.2 (1.6-8.0 mIU/mL)
    LH: 3.9 (1.5-9.3 mIU/mL)


    At the end of the month, I turned 26, and am without insurance for the first time. There was a week in early January that in retrospect scares the **** out of me, where I essentially had no libido, no emotion, no motivation, no pleasure (yet no depression), I was just completely numb. Like I knew things were bad, and my brain was firing negative thoughts almost in an attempt to elicit an emotional reaction, but nothing. It was horrible. I felt hollow and emotionless even when video chatting with my fiance. Also, I got cold very easily and it took me forever to go to sleep (and I had issues with staying asleep.) My weight has been stable, I find my straight leg jeans harder to fit into, guessing it's muscle --> fat.) I have slightly rebounded from that week, but mostly on the motivation and pleasure front (that is to say that libido is still nearly nada, and I don't sleep soundly anymore.) I can feel that something is badly wrong, and I want to find out what it is and fix it. Late January, I get approved for Medicaid (which in MA is pretty robust,) to my massive relief. Cialis works in higher amounts (~10mg) but HGW and Maca now do nothing, and with the libido where it is sex is not as pleasurable and the overall experience is less intense. My fiance knows about the T concerns, but with the idea that it's more about the flatness and low energy (does not know about the preexisting and progressively worse ED.) This is where I am now:

    My endo, reviewing the above results with me over the phone before I got the hard copy (and neglecting to go over hard numbers), states that I'm in the lower part of normal in free and bioav T, but proceeds to critique the assays and how they're not very reliable or consistent or some crap (while I'm thinking, "if they aren't of any use why did you order them?") He asks how my libido is (I say "not so good," an understatement in retrospect,) he says we'll test again in 6-8 months and see where things are then. I asked hypothetically what the next step would be if that barely-in-the-normal free T reading were low, and he said something about checking pituitary function. I can tell that he's doesn't care for the idea of TRT, at least in my case where it could throw my sugars out of whack (T decreases blood sugar and loss of endogenous T might make high sugars an issue,) but this is no way to live so saying to wait half a year is not an appeasing solution.
    My PCP sympathizes and acknowledges that my symptoms indicate low T issues, and disagrees with the endo's lack of concern, but shows no interest in further testing to find out underlying cause, and prescribes (yet again) a 3-month trial run of testosterone gel. I express my concern about losing fertility with this as a long-term solution, and he insists that half of a one-a-day tube every day will not suppress endogenous T production in 3 months. I asked if further tests could be run first, and he says that sometimes low T just happens and it's best to just correct it directly. I ask about hCG as an adjunct or alternative (I admittedly do not understand it very well myself), he initially didn't understand because he starting going on about HGH for a while, and when I clarified what I meant he said he never heard of it being used for men's hormonal issues.
    So I'm currently with a very intelligent endo who seemingly doesn't care about my plight and a PCP who does care, but doesn't seem to really know what he's doing with this particular issue. I kind of want to emphasize my concern with my endo with the hope that we can investigate things and find why a 26-year-old has borderline T levels with no spontaneous erections (incl. morning wood), next-to-no libido, emotional flatness, and difficulty sleeping. While I want to resolve my issues, I don't want to dive into TRT without doing all necessary tests that would get borked by taking exogenous testosterone. Juggling trying to learn more about my issues and what to do while trying to find a job is enormously stressful and tiring, and in the end, hampers my ability to solve either. I really appreciate your reading this and any help and advice you might have. Thank you.

    From what I've read, I can assume that the most glaring thing missing here is an E2 reading, I will get that in addition any other tests you think I should get.

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    I read the whole post. ....
    Yes, through out it, I was yelling "what is your E2?".
    You need to get more D3.
    Have you ever done DHT suppressors?
    SLEEP!!! is important for everything. There are 5 PARTs to this youtube video.... .youtube.com/watch?v=h7cbBB1c0IM
    STRESS!!! find a way to chill. Where are your cortisol levels?
    Once you know your E2, then you could try HCG (real HCG orally, look on youtube, I have done it) to raise your TT.
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    I was thinking.... you have type 1 diabetes....ZONULIN....high ZONULIN is the destructive factor to the pancreas in type 1 diabetes.
    High ZONULIN causes leaky gut and blood brain barrier. I would get a LEAKY GUT TEST.
    Or, (the cheap way) follow a no gluten diet and supplement for GI repair. MATRIX is great at this.
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