Invest in ME Conference 12: First Class in Every Way
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Need advice on hormone testing

Discussion in 'Hormones' started by halcyon, Sep 1, 2014.

  1. halcyon

    halcyon Senior Member

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    I'm looking for some advice on possible further hormone testing.

    A few months into my illness I decided I needed to see an endocrinologist to rule out any problems there. After an arguably incomplete workup I was told everything was normal and in my naivety I assumed I had covered that base and moved on.

    A few months later I finally got my hands on the actual lab work and saw that there were actually abnormal results. My prolactin level was elevated, my testosterone levels were borderline low, and I had elevated urine volume on a 24 hour urine test. I've since had more lab work that showed my prolactin level is even higher and my free testosterone is now actually low.

    From what I have read a minimally elevated prolactin level would be inconsistent with a pituitary problem and white blood cells can release prolactin as well so ongoing immune activation like I seem to be experiencing could be enough to explain the rise. I've also read that prolactin inhibits FSH and LH which could explain the low testosterone levels. Unless I'm missing something here, I'm happy enough leaving this alone and pursuing the apparent chronic infection(s) causing the immune activation in hopes that will resolve the elevated prolactin.

    The other symptoms that I am worried about I now realize are probably endocrine in nature. Though not as severe as the first few months I was sick, I'm experiencing frequent urination and thirst, a need to eat every 2-3 hours otherwise I start to feel hypoglycemic, mineral deficiencies (sodium, potassium, and magnesium to a lesser degree), and random adrenaline rushes. In addition almost every doctor that looks at my metabolic panel blood tests says I look like I'm dehydrated. I drink a ton of water all day long.

    The following tests were done and were normal:

    8AM cortisol, serum - 17.9 mcg/dL (4.0 - 22.0)
    8AM ACTH, serum - 25 pg/mL (6-50)
    Fasting glucose - 87 mg/dL (65-99)
    Hemoglobin A1C - 5.0% (<5.7)
    TSH - 1.210 uIU/mL (0.450 - 4.500)
    T4 - 9.1 ug/dL (4.5 - 12.0)
    T3 uptake - 32% (24-39)
    Free thyroxine index - 2.9 (1.2 - 4.9)

    Given my ongoing symptoms I believe I should test the following:

    24 hour saliva cortisol
    DHEA
    Aldosterone + renin
    Vasopressin

    Can anyone think of anything I missed?
     
  2. A.B.

    A.B. Senior Member

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    Hi,

    The tests for pituitary function are FSH, FH, testosterone, DHEA, prolactin, IGF-1, ACTH (and possibly a few others). If the pituitary hormones are low, the next steps would be an MRI, and possibly a stimulation test.

    Try to find a doctor that will investigate this.

    It would also be helpful to document your hypoglycemia so that they don't think that you're nuts. You can do this with a home glucose meter.
     
  3. halcyon

    halcyon Senior Member

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    Thanks @A.B. I'm going to get FSH/LH, DHEA, and IGF-1 tested shortly, as well as the others I listed above. My AM ACTH level was within range.

    I'm not going to waste more time and money with a doctor unless the tests I run come back abnormal.

    What's strange is that 99% of the time I feel hypoglycemic, the BG meter shows I'm fine. This makes me worry that it's something thyroid related, so I'm going to also get a more complete thyroid panel done since the one I had before didn't include free T3 or reverse T3.
     
  4. Bryce74

    Bryce74

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    As to your feeling of hypoglycemia, did you have an oral glucose tolerance test?
    And how much does the BG meter show when you have these feelings?

    I am diagnosed as having hypoglycemia, and 8 out of 10 times when I feel symptoms of hypoglycemia, my meter shows 80 mg/dL or less. 80 mg/dL is not extremely low, but if you suffer from hypoglycemia you could already feel symptoms at borderline low numbers. 80 mg/dL, two or three hours after a meal is rather low. Most people reach such a number only after a night of fasting.
     
  5. halcyon

    halcyon Senior Member

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    No I haven't done the GTT. My doctor didn't want to put me through it since my fasting BG and insulin tests were normal. One of the times I felt really bad it read 78, but usually it seems to be between 85 and 95. The endocrinologist I saw was very negative about the home testers. He claimed they are allowed to be off by as much as 15 mg/dL.
     
  6. Bryce74

    Bryce74

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    The Netherlands, Europe
    Ah ok, my insulin tests were not normal, so I had the GTT.
    Yes I know, Home BG testers can be off by 15 mg/dl, so I use the tester only as a rough indication.
     

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