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Possible Nonclassic Congenital Adrenal Hyperplasia ?

Discussion in 'Optimal Labs' started by Chipdouglas, May 7, 2019.

  1. Chipdouglas

    Chipdouglas New Member

    Hi,



    Gender : male

    Age : 47

    Height : 5’7’’

    Weight : 200 lbs

    Rx : none

    Supplements : stinging nettle root, betaine CHL + Pepsin (thorne research).

    Blood pressure : ~117/ 70



    Health professionals I’ve consulted with : endocrinologist (1), General Practitioners (many), neuropsychologist (1), psychiatrist (2).



    Psychiatric diagnoses : GAD, ADHD, dysthymia

    Psychological diagnoses : ADHD + giftedness

    Medical diagnoses : liver steatosis, Gilbert’s syndrome, Mononucleosis (15 years ago). Severe cystic acne (from age 14 to 25), Male Pattern Baldness.



    I’ve been looking for the root causes of my below symptom picture. For those of you that've been through a similar journey, you know that you’re unlikely to find any real answers within psychiatry. Psychiatric diagnoses are highly subjective ; you’d see three individual psychiatrists and chances are you’d also get three different diagnoses or medical opinions. Plus, psychiatric diagnoses are merely descriptive of pathological behaviors. They do nothing to inform one about issues underlying one’s behaviors.



    Core symptomatology for the last 20 years : poor motivation, low/depressed mood, low to non-existent libido.



    An ER doc with a side practice in anti-aging medicine, has diagnosed me with a mild case of Congenital Adrenal Hyperplasia, aka NCAS. This means that because of a partially functional 21-hydroxylase enzyme, one can't make as much cortisol from progesterone. He thinks all of my issues stem from insufficient cortisol. He prescribed : Cortef (hydrocortisone) 10 mg at 8 am and between 5-10 mg at ~ 3 pm. I refused to take it, lest a shutdown would result from this. Since ACTH also drives the production of other adrenal hormones, losing the CRH/ACTH signals would have serious consequences. Ex. if one ends up in the ER as a result of a car crash, but you're not wearing a medicalert bracelet to inform the medical personnel that you take hydrocortisone, you could die from an inability to mount an adequate stress response.


    Clearly, I don’t have Addison’s disease. The symptoms of an adrenal crisis wouldn’t have gone unnoticed.


    Nonclassic Congenital Adrenal Hyperplasia seems possible. The salt-wasting type of CAH not so much. Symptoms would've been so severe, that I wouldn't have been able to ignore them for so long.


    The above mentioned ER doc didn’t run a Cortrosyn test, which as far as I know, is the gold standard to diagnose either CAH/NCAH. However, on my blood work i notice that my progesterone has been elevated. Although, I'm unsure whether said progesterone is 17-hydroxyprogesterone.


    In NCAH, there’s insufficient cortisol production due to a partial 21-hydroxylase enzyme deficiency, along with high androgens.

    From what I can understand, the negative feedback loop (through cortisol) is never really interrupted in CAH/NCAH, resulting in high androgens but not cortisol. However hard ACTH is shouting to the adrenals to make more cortisol, there’s a primary adrenal issue preventing enough of it to be made.


    I’ve done an ASI (i.e. salivary) : it shows normal 4-point cortisol, but off-the-chart high DHEA ( 547 out of a ref. range of 14 - 277 pg/ml) IIRC, saliva cortisol is free cortisol and DHEA is the sulfated form. Correct me if mistaken.


    Serum DHT was done twice. The first time, it came back in near the upper limit of normal. The second time around, it was off-the-chart high.


    Progesterone has also been done twice : both tests were above upper limit.



    Total Testosterone has been done a number of times. Most of the time, it was somewhere in mid-range.



    E2 has also been done a few times. It never seemed truly high enough to be clinically significant. Or at least, high enough to be blamed for my ills.



    UFC was done once and came back as low normal (87 out of a ref. range of 55 – 300 nmol/d).



    As to prolactin, I’ve seen it about mid range on one test and another time it was in near the upper limit of normal.



    DHEA-S (serum) was tested twice. Both time, it was in the upper part of range – the latest one near the upper limit.
    Those are my natural levels. I've only taken one 50 mg DHEA caps more than 10 years ago. I've not taken any other form of HRT.



    What puzzles me, is that my serum cortisol is in the upper part of range. So there must be something that the MD who made that diagnosis knows that I don’t, relative to the difference between UFC and serum cortisol. What I know, is that some MDs think of serum cortisol as being inaccurate relative to salivary cortisol. However, tbh I’ve also seen docs who don’t trust salivary assays.



    I once took 50 mg DHEA and experienced severe anxiety as a result. Since I've high natural levels, this doesn't surprise me.


    Positives about my situation, is I’m strong as an ox. Strength goes up rather easily. However, I’m not lean at %20 BF.


    Stinging nettle root markedly increases subjective well-being and spontaneous erections and libido. At first I thought it might have something to do freeing up Free Testosterone, but then I found this, which seems to jibe with my adrenal hormone situation : http://www.ijcrar.com/vol-2-7/Farzad Najafipour, et al.pdf



    In order to avoid clutter, I’ll post blood works below as separate msgs.



    What do you think ? Don’t hesitate should you have any questions.



    Many thanks





     
    JanSz likes this.
  2. Chipdouglas

    Chipdouglas New Member

    Those are labs ordered by endocrinologist (which the ER/anti-aging doc scrutinized)


    Calcium 2.48 (2.15--2.65) mmol/L


    Calcitonin 6.0 ( 0.0--9.0) ng/L


    Urinary Cortisol 87 ( 55--300) nmol/d

    duration : 24 hours

    Volume : 1 150 mL



    urinary Creatinine 13.5 ( 7.1--17.7) mmol/d

    Duration : 24 hours

    Volume : 1 150 mL







    TSH 2.39 ( euthyr : 0.27 - 5.0) mUI/L

    ( hypothyr : >5.00)

    ( hyperthyr : < 0.01)


    Prolactin 16 ( 0 - 18) uG/L



    Cortisol (8 hours) 679 ( 160 - 700) nmol/L

    Time of blood draw : 8: 45 AM



    Cortisol (16 hours) 186 ( 50 - 500) nmol/L

    Time of blood draw : 3: 30 PM



    Analysis

    Duration : 24 hours

    Volume : 1 300 mL



    Urinary catecholamines :


    Epinephrine 48 ( 0 - 109) nmol/ d

    Norepinephrine 289 ( 89 - 473) nmol/d


    5HIAA 18.7 umol/L

    5 HIAA 24.3 umol/d ( 10.4 - 31.2)


    Urinary creatinine 13.9 ( 7.1 - 17.7) mmol/d
     
  3. Chipdouglas

    Chipdouglas New Member

    These are older labs, but still I thought they're more or less relevant, as my symptom picture hasn't budged in years.


    Dihydrotestosterone : 2015 ( [male 20-49 yo] 217 - 1650) PMOL/L


    DHEA-S : 11.1 ( 4.0 - 16.3) umol/L


    SHBG : not in yet--will post when I get it.



    Total Testosterone : 14.8 (8.4 - 28.7) nmol/L


    Bioavalable Testosterone : 10.6 ( 2.0 - 14.0) nmol/L


    Estradiol-17B : 122 (42 - 151) pmol/L


    Cortisol (8 hours) : 623 (160 - 700) nmol/L
    Time of draw : 8:30 AM


    Cortisol ( 16 hours) : 330 (50 - 500) nmol/L
    time of draw 3:30 PM


    PSA : 1.1 (0.0 - 1.4) ug/L


    TSH : 2.06 Euthyr. 0.27 - 5.0 mUI/L
    hypothyr. >5.00
    hyperthyr. <0.01



    FSH : 3 (2 - 12) U/L


    LH : 5 (2 - 9) U/L



    Prolactin : 7.2 (4.0 - 15.2) ug/L


    Ferritin : 284 (50 - 250) ug/L


    Folic acid : 35.8 Normal : (11.9 - 46.7) nmol/L


    B12 : 542 Normal : (96 - 568) pmol/L


    RBC folate : 1136 (> 634) nmol/L


    Homocysteine : 7.6 (3.7 - 13.9) umol/L


    Biochemistry


    Glucose 5.0 (4.2 - 6.1) mmol/L
    Serum creatinine 70 (62 - 106) umol/L
    Sodium 140 (137 - 145) mmol/L
    Potassium (plasma) 3.3 (3.4 - 4.8) mmol/L
    Chloride 102 (98 - 109) mmol/L
    AST 18 (0 - 37) U/L
    ALT 19 (0 - 41) U/L
    Alkaline Phosphatase 54 (52 - 132) U/L
    Total Bilirubin 32 (3 - 22) umol/L
    Direct Bilirubin 4 (0 - 7) umol/L
    Calcium 2.43 ( 2.15 - 2.65) mmol/L
    Uric acid 394 (255 - 430) umol/L
    Total protein 79 (63 - 83) g/L
    Albumin 51 (35 - 60) g/L
    Magnesium 0.97 (0.65 - 1.05) mmol/L
    Serum iron 23.4 (9.5 - 29.9) umol/L
    Transferrin 2.8 (2.0 - 3.4) g/L
    TIBC 64 (47 - 78) umol/L
    TRF saturation % 0.37 (0.20 - 0.50)
     
  4. JanSz

    JanSz Gold

    Prolactin 16 ( 0 - 18) uG/L

    high, 6-7 more like it
    --------------------------------------

    At first try (easier to get) slow bromocriptine mesylate, latter try fast one.
    (slow)Parlodel (Bromocriptine Mesylate)
    (fast)Cycloset (always (immediately) with food)(can make you hypoglycemic within minutes, and you will be sorry)(keep some sugar sachets in you pocket anyhow)
    aim at achieving on test prolactin 6-7
    --------------------------------------------------------------------------
    First
    Religiously for a month or two
    arrange for the best Circadian Rhythm that you can muster
    then do
    ZRT 4xsaliva, DHEAs test
    ---------------------------------------------------------------------------

    Get homocysteine, fasting insulin, FreeT3,
    you may use this:
    https://www.mcssl.com/store/bltsystem/catalog/search?keyword=Homocysteine
    Homocysteine, Plasma 706994 - $28.01
    Insulin - $12.01
    Hemoglobin A1c $8.65
    Glucose, Serum 001032 -$7.98
    Triiodothyronine (T3), Free, Serum $14.45
    DHEAs -$24.35
    Progesterone $17.29
    Estradiol (E2), Serum $24.93
    Estrone (E1), Serum $29.50
    Cortisol - AM, Serum 104018 - $14.44
    CBC with Differential $8.90
    Comp Metabolic 14 Panel $9.65
    Urinalysis, Complete $8.63
    Prolactin $17.29
    Vitamin D, 25-Hydroxy $33.50
    Free Triiodothyronine (T3) $14.45
    Lipid Panel $9.65

    PSA Total+%Free $24.93

    The venipuncture fee of $6.95 will be added to the Processing Fee of your lab order.
    ===============================================================================

    After you done with ALL above, please post results.

    Get ready (financially) for:

    DUTCHtest.com
    Spectracell.com

    https://www.spectracell.com/order/
    upload_2019-5-7_16-48-4.png

    =====================================================
    https://dutchtest.com/shop/
    upload_2019-5-7_16-46-6.png
    ===============================
     
    Last edited: May 7, 2019
    Chipdouglas likes this.
  5. JanSz

    JanSz Gold

    Sodium 140 (137 - 145) mmol/L
    Potassium (plasma) 3.3 (3.4 - 4.8) mmol/L (eat a lots of no-salt salt. (KCl), sold on amazon.com (are you getting muscle cramps???)
    Alkaline Phosphatase 54 (52 - 132) U/L
    low Alkaline Phosphatase (perusing what Patricia Kane says, you may have:
    Vit C low
    zinc low
    vit d low
    fatty acids screwed---->>
    get
    Fatty Acid Profile, Comprehensive (C8-C26), Serum

    when Alkaline Phosphatase is below 60, --->an-orgasmic (and that is your case)
    just for that reason
    it may be worth to not poo poo and do Spectracell right away
    /
     
    Last edited: May 7, 2019
    Chipdouglas likes this.
  6. JanSz

    JanSz Gold

  7. Chipdouglas

    Chipdouglas New Member

    I'll be back in an hour or two. Perhaps my latest post (blood work) will have become visible to others by then. I get a msg saying that it needs to be approved manually.
     
  8. JanSz

    JanSz Gold

    Dihydrotestosterone : 2015 ( [male 20-49 yo] 217 - 1650) PMOL/L
    ------------------------------------------------------------------------------------

    People are getting screwed by using 5aR inhibitors
    post-finasteride syndrom---->disaster
    in my view
    those people likely were using 5aR inhibitors while having very little of 5aR.
    It looks like
    you have a lot of 5aR. (But that must be checked before you would do anything about it.)
    There is also 5bR, so nothing is guaranteed.

    I see 5aR as a possibility for you (after you done everything above) and still have very high DHT.



    --------------------------------
    There is a problem testing DHT using blood test.
    You are getting results but have no clue what you are looking at.
    because
    there are two (2) DHT's
    5a-DHT
    5b-DHT

    you have to figure out which one you have high.

    DUCH test will do that for you.


    ............
     
    Last edited: May 7, 2019
  9. JanSz

    JanSz Gold

    Reread some of my posts here, sometimes I am changing/editing them.
     
    Chipdouglas likes this.
  10. Chipdouglas

    Chipdouglas New Member

    I apologize, I'll be back tomorrow morning. I need to get some rest.
     
  11. Chipdouglas

    Chipdouglas New Member

    The are the labs the doctor who diagnosed me ordered :


    Fibrinogen (non-anticoagulated) : 2.4 (2.0 - 3.8) g/L

    Cortisol (8 AM) : 622 (160 - 700) nmol/L

    Hb1AC : 0.050 (0.047 - 0.060) Interpretation : ideal glycemic control.

    Anti-TPO : 11 (Negative : <45) kU/L

    (dubious : 45-65)

    (positive : >65)

    TSH : 2.46 (euthyr :0.27 - 5.00) mUI/L

    (hypothyr. : > 5.00)

    (hyperthyr.: < 0.01)

    FT4 : 18.9 (12.0 - 22.0) pmol/L

    LH : 4 (follicular phase : 2 - 13) U/L

    (mid-cycle phase : 14 - 96)

    (luteal phase : 1 - 11)

    (men : 2 - 9)

    Ferritin : 236 (50 - 250) ug/L

    SHBG : 25.3 (11.0 - 63.0) nmol/L

    H. pylori : Negative

    Progesterone : 4.3 men <4 nmol/L

    DHEA-S : 12.3 (7.2 - 12.5) umol/L

    IGF-1 (Somatomedin) : 23.4 (14.0 - 37.09) nmol/L

    Insulin : 64 (30 - 90) pmol/L

    Growth Hormone : < 0.1 (0.0 - 9.9) pmol/L

    Vitamin D (25 OH) : 38 (30 - 125)

    Total T3 1.9 - 2.8) nmol/L

    Estradiol-17 B : 114 men : 42 - 151 pmol/L

    Testosterone : 18.1 (8.4 - 28.7) nmol/L

    Homocysteine : 9.5 (3.7 - 13.9) umol/L

    ===================================================

    Chemistry

    Glucose (overnight fast) : 5.3 (4.2 - 6.1) mmol/L

    serum creatine : 77 (62 - 106) umol/L

    Sodium : 140 (136 - 145) mmol/L

    Potassium (plasma) : 3.7 (3.4 - 4.8) mmol/L

    Choride : 99 (98 - 109) mmol/L

    AST : 18 (0 - 37) U/L

    ALT : 20 (0 - 41) U/L

    Gamma GT : 14 (10 - 66) U/L

    Total Bilirubin : 30 (3 - 22) umol/L

    Direct Bilirubin : 4 (0 - 7) umol/L

    Uric Acid : 425 (255 - 460) umol/L

    C-reactive Protein (ultra sensitive essay) : 0.9 (0.0 - 5.0) mg/L

    Cholesterol : 4.8 (2.0 - 5.2) mmol/L

    Tryglycerides : 0.9 (0.5 - 2.0) mmol/L

    HDL cholesterol : 1.58 (1.00 - 2.60) mmol/L

    LDL cholesterol : 2.8 (2.0 - 3.4) mmol/L

    Total/HDL cholesterol : 3.0
     
  12. Chipdouglas

    Chipdouglas New Member

    I've just posted the labs the MD who diagnosed me ordered, but I'm once again given the msg that they're invisible to other forum members until that post is manually approved. I don't understand, because all other workup posted right away.
     
  13. JanSz

    JanSz Gold

    Post it on dr John Crisler web site.
    Post link here.
    I will copy it and post it here for you.

    .
     
  14. Chipdouglas

    Chipdouglas New Member

    His forum is down. It was a good idea though. I'll upload those labs to MediaFire and PM you the download link.
     
  15. JanSz

    JanSz Gold

    Oh shit, that is really bad news.
    I have/had lots of good stuff there.

    ..
     
  16. Chipdouglas

    Chipdouglas New Member

    You can give logging in a try from your location. But on my end, it times out - the website can't be reached. I agree, this isn't good news.
     
  17. JanSz

    JanSz Gold

    I can see your files.
    Can't get them downloaded because
    to open them I would have to know where my Word and excel are.
    My computer does not lead me to it.
    How to find it out?
    I had that situation before.
    Ok, I can down load it and save the file and deal with the rest latter
    but I want to use this opportunity to clean up my situation.
    I do have Microsoft Office.
    @drezy
    @Chipdouglas


    =========================
    upload_2019-5-8_14-40-53.png
    =========================
     
  18. JanSz

    JanSz Gold

    This is your problem.
    Give it little time.

    upload_2019-5-8_14-49-10.png
     
    drezy likes this.
  19. drezy

    drezy New Member

    I had someone tell me once:
    "I've been doing this for a week and no results!"
     
  20. drezy

    drezy New Member

    So , you save them locally and they still don't open?
     

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