Introduction - 34 Y/O with CAH Starting TRT

Hey everyone, I’ve been lurking around here for a few weeks but thought I would introduce myself now that I’ve officially started TRT as of this morning. In addition to the recently diagnosed low-T, I also have Congenital Adrenal Hyperplasia (CAH) which is a genetic condition that causes my body not to produce Cortisol. I take a replacement for that in the form of Dexamethasone and Fludrocortisone daily. I’m interested to hear from anyone else who might have both conditions, or a good understanding of how the interactions work. My belief is that while the CAH is well controlled on the meds I’m currently on (doctor has dialed me down to what we think is a minimum effective dose), corticosteroids actually work a little too well as far as suppressing androgens. I know that untreated, CAH patients end up with excess androgens (but also a lot of other nasty symptoms, so going untreated is not a good idea).

So funny story with my first injection today - while I get blood drawn and flu shots done regulary without any problems, I had what the doc called a ‘psychosomatic reaction’ to my first T shot today and totally fainted for a few seconds. I woke up on the floor with my wife and 3 kids looking down at me. Luckily I came to quickly and felt fine after just a few minutes.

I welcome any comments or advice, thanks in advance!

Here’s my stats as requested in the sticky:

-age: 34

-height: 5ft 7"

-waist: ~38in

-weight: 243lbs

-describe body and facial hair:
Currently a large belly, although I have a large frame and distribute fat evenly so I don’t look my current weight. Never been very muscular even when I trained semi-regularly in my early 20’s. In my late 20’s I took up distance running, completed 3 full marathons from about 2008-2011. I weighed as low as 175 at the time, then after I started having kids I totally fell off the wagon, gaining weight every year. Just recently I started on Nutrisystem (but planning to switch to Paleo soon) and have dropped about 15lbs over the past month or so.

-describe where you carry fat and how changed
I think I covered this in the previous section, only change has been gaining more weight every year the past few years.

-health conditions, symptoms [history]
As mentioned above, CAH. Also mild exercise induced asthma, seasonal allergies.

-Rx and OTC drugs, any hair loss drugs or prostate drugs ever
Testosterone Cypionate 200mg - today only
Going forward doctor said he was fine with splitting the dose and doing 100mg weekly. My wife is an RN and will be doing the shots for me at least until I get a little more comfortable to do it myself.

Dexamethasone 0.5mg daily
Fludrocortisone 0.1mg daily
Hydrocortisone 5mg (as needed on exercise days).

No hair loss/prostate drugs.

4000IU Vitamin D3 since round 1 of my labs

-lab results with ranges

Doctor requested 2 rounds of labs due to insurance requirement for TRT, but there are some different ones for each round. I’ll list everything I got in hopes that more info is better.

Round 1:

ACTH <5 (7-69pg/ml)

(Metabolic Panel)
Glucose 87 (70-99 mg/dl)
BUN 10 (6-20 mg/dl)
Creatinine 0.74 (0.8-1.4mg/dl)
eGFR 120 (>60 ml/min/1.73)
Calc BUN/CREAT 14 (RATIO 6-28)
Sodium 142 (133-146 meq/l)
Potassium . 4.4 (3.5-5.4 meq/l)
Chloride 101 (95-107 meq/l)
Calcium 9.5 (8.5-10.5mg/dl)
Protein, Total . 7.1 (6.1-8.3g/dl)

Cortisol, AM Specimen <0.2 (4.8-19.5 ug/dl)

Testosterone, Total 152 (300-1080ng/dl)
Sex Horm Bind Globulin 26.2 (16.5 - 55.9nmol/l)
Testosterone, Free 3.2 (4.8-25.7ng/dl)

Vitamin B-12 409 (200-950pg/ml)
Vitamin D, 25OH 17 (20-100ng/ml)

Round 2 (~2 weeks after Round 1)

CBC W/O DIFF, WITH PLATELETS
WBC 12.9 H (4.0-11.0K/UL)
RBC . 5.13 (4.1-5.7M/UL)
HEMOGLOBIN . 14.5 (13.0-17.0 G/DL)
HEMATOCRIT 42.9 (37-49.0%)
MCV 83.6 (80.0-100.0fL)
MCH 28.3 (27.0-34.0PG)
MCHC 33.8 (32.0-35.5G/DL)

FERRITIN 375 (30-400NG/ML)

PSA . 0.58 . (<-4.00NG/ML)

PROLACTIN 18.8 H (4.0-15.2NG/ML)

TESTOSTERONE, TOTAL 140 L (300-1080NG/ML)
SEX HORM BIND GLOBULIN 27.8 (16.5-55.9NMOL/L)
TESTOSTERONE, FREE 2.9 L (4.8-25.7NG/DL)

-describe diet [some create substantial damage with starvation diets]
Varies - currently doing Nutrisystem, but going to switch to Paleo or similar so I can be eating healthy in a way that’s sustainable over the long term. In the past few years I haven’t paid a lot of attention to my diet but do cook at home most of the time, and have a taste for big heavy craft beers. I’m cutting out the beer and any other alcohol almost entirely.

-describe training [some ruin there hormones by over training]
Recently haven’t had the energy to do much other than walking. I have an under-desk treadmill that I walk on for about 1-2 hours of my workday 2-4 times per week.

-testes ache, ever, with a fever?
No.

-how have morning wood and nocturnal erections changed
Depends on the time frame. Haven’t changed in the past few years, but morning wood is somewhat less frequent than 10 years ago.

Have you tested:
A1C?
TSH
fT3
fT4

Please see last paragraph to eval thyroid function. This can have a big effect on fat gain/loss.

Loss of 15 pounds in a month is getting dangerous. This can damage your adrenals - my attempt as a joke. Fat fat loss also liberates a store of fat soluble hormones, toxins and drugs.

With TRT please watch these carefully: HTC [hematocrit], RBC, hemoglobin and ferritin. Concerned with high HTC. If a problem, you need to avoid iron fortified flour, cereals, breads, rice and vitamins listing iron.

T peaks are thought to make RBC worse and 200mg was bogus.
You need steady T levels, avoiding peaks. subq is smoother than IM.

  • Self inject 50mg T twice a week, subq, #29 1/2" 0.5ml insulin syringe. Do not inject IM. Pinch up skin over upper leg, inject into end of fold with needle parallel to muscle layers. Slow to load, injection times are OK, but not fast like Docs and RNs expect. After injecting, press finger on injection site for 10-15 seconds and the compression will prevent bruise bleeds by allowing tissues to seal off.

  • 0.5mg anastrozole at time of injections to mange E2 near E2=22pg/ml

  • 250iu hCG subq EOD to preserver testes and fertility. Expect small testes otherwise and loss of other testicular hormones. Some wives object to tiny testes

Prolactin needs to be tracked. Can be from a prolactin secreting pituitary adinoma. If there is gets large, can press on optic nerves. Easily managed with oral 0.5mg Dostinex/cabergoline per week. Can be confirmed via MRI.

Do not understand why LH/FSH not tested.
Too late now as both -->zero on TRT.

E2 estradiol should have been tested.

Please read the stickies found here: About the T Replacement Category - #2 by KSman

  • advice for new guys - need more info about you
  • things that damage your hormones
  • protocol for injections
  • finding a TRT doc

Evaluate your overall thyroid function by checking oral body temperatures as per the thyroid basics sticky. Thyroid hormone fT3 is what gets the job done and it regulates mitochondrial activity, the source of ATP which is the universal currency of cellular energy. This is part of the body’s temperature control loop. This can get messed up if you are iodine deficient. In many countries, you need to be using iodized salt. Other countries add iodine to dairy or bread.

Thanks for the advice, I will take all this into consideration.

I am moving to a new town next weekend and will be looking for a new Endo once I’m there. I’ll be sure to ask about adding the hCG and anastrozole/E2 management. When I asked my current doctor about E2, his response was
“it is a concern, so ask your next Endo to include it in your future labs, but I don’t like to start someone on an AI unless labs show your E2 is high.”

Sorry - I did have FSH and LH tested, I totally just missed those when copying the info in, Oops.

FSH 6.1 (1.5-12.4 IU/L)
LH 3.3 (1.2-8.6 IU/L)

Doctor said FSH was “abnormally normal” and with the elevated Prolactin ordered a pituitary MRI to check for any physical issues there. I’ve got that scheduled for early next week.

As for Thyroid, I had those done about a year ago, and another two years before that, everything was perfectly normal. Doctor also does a manual exam (by checking my neck) every time I visit and has never found anything abnormal.

The problem is that the thyroid lab ranges are insane. Everyone with TSH 0.5-5.5 are healthy - no. Please eval with oral body temperatures as suggested.

TSH should be near 1.0