Question about CAG Repeat Length

Hi everyone!

I suffer from low T and have probably always had low T. I had my first
blood test at 20 and already back then it was really low. My LH is also
usually low. I have been through many tests. Klinefelter was ruled out,
I also had a pituitary MRI which was normal and I had a GnRh test. But
the result was that my serum T is simply too low.
It took me a long time to finally find a doctor who didn’t
give me the your levels are still in the normal range BS and who is willing
to put me on TRT. 2 weeks ago I started with gel (50mg/day) but so far I
don’t feel any difference.

Anyway, the thing is this: Over all the years where I kept track of my t-levels there were times where my serum T was rather low but my free T
was really high due to low SHBG. This wasn’t the case in every test but
in a few tests and then I was told that as long as free T is high it’s all
good. But then I asked myself if my free T is so high then why do I have all these symptoms? (ridiculously low strength, way too little muscle mass, fat distribution which looks feminine)

I told this to the endocrinologist and he said that he’ll also to a sensitivity CAG test. I am waiting for the results of this test but I already tried to read up a bit on CAG and the stuff I read now worries me.
As far as I understand it CAG better be short than long cause long CAG means you’re insensitive to testosterone.
And what really worries me is that I also read that CAG length also seems to be linked with other syndromes, like Kennedy Syndrome which is a neurodegenerative disease!
The whole time I thought that even if I should have long CAG then this only means that I need higher testosterone levels in order to feel normal than normal men. I thought it’s not that much of a deal but if long CAG is linked to diseases then this changes everything. I’m pretty anxious now about the results of the test.

Has anyone here had such a CAG test or does anyone have long CAG?

Never heard of this but interested to see the results and to do a little digging on my own.

21 years old here, low T, Just started TRT a little over two weeks ago. Never had a CAG polymorphism test though.

Heres what i think i know about the subject
The Shorter The CAG repeat the better you will respond to Test.

CAG repeats range from 6-39, and 23 CAG Repeats is the cutoff from high to low.

Long CAG- you will most likely still respond to test, but will be exposed to the Side effects more
Short CAG- Respond even better to Test, and experience less sides.

A standard dose is 100mg/day, 10 percent gets absorbed. However, many do not absorb well or do at first then very little after a while. Thyroid problems are often seen to be associate with inability to absorb transdermal T.

At your age, I vote for trying hCG monotherapy and having your testes make your own T. You would be off of the T cream for this, then you do labs to see how things are going. Your testes probably will get larger and fuller and their function need to increase along with tissue changes that take place. An earlier test will show if there is an effect. Testing after 2 months would indicate your final results. If you feel expected effects of T, that is great. Acne and oily skin should be seen as a welcome event.

You need to test DHEA-S levels too. And cholesterol profile.

Some kidney problems cause T and other steroids to spill into the urine. The kidneys are meant to ‘spare’ those things.

Hello!

I don’t think that hcG is used to treat low T. I’m in Europe and doctors are orthodox here.
The best thing you can hope for is testosterone gel or injections. Nobody ever offered me
hcG. I also don’t think that the insurance would even cover it. :frowning:

I am still waiting for the results of my CAG test. I fear that I have long CAG which means
in order to feel anything I need more T than normal people which makes me wonder if needing
to have more T in the blood also raises the side effects of T.

@ ksam

I don’t have my levels memorized. But my cholesterol is always normal around 150 or lower.
DHEA is usually also normal, though not very high. A few times it was above the norm maybe because of stress. I also had a kidney MRI 10 years ago because of this and it was normal.

I have been on 2,5% testosterone gel for 4 weeks now which delivers 60mg testosterone.
And now my serum T is lower than before I started. My level is now at 10nmol/l and when I started
it was at 12nmol/l! This is very discouraging. My E2 is okay (25pg/ml) but maybe only because my T is so low.
And my LH is low and being suppressed which looks like I absorb the gel.

I also have weird thyroid hormones. My intern told me I might have a latent hypothyroidism.

June:
TSH 4,02 uU/ml Norm: 0.4-2.5
FT3 4,4 pg/ml Norm: 2-5
FT4 14 pmol/l Norm: 9,5-18

August:
TSH 2.4 uU/ml Norm: 0,3-4,2
FT3 4.3 pg/ml Norm: 2,3-4,2
FT4 1,3 ng/dl Norm: 0,9-1,8

October:

TSH 4.1 uU/ml Norm: 0,3-4,2
FT3 3.9 pg/ml Norm: 2-4,3

With tyroid problems we expect to see non-absorption of transdermal T. You need to self inject T, but hCG might be better for reasons stated below. And hypothyroidism can cause low T, and visa versa in a negative embrace. T-gel lowering T lab results is classic.

So this begs the question, are you iodine deficient?

You seem to be in full blown hypothyroidism now. Check and report your body temperatures, F&C please.

MRI checks form, but not function. If you spill steroid molecules in your urine, vit=D25 might also be low, might then also spill some cholesterol.

Older men with weak testes do not respond well to hCG as a mono-therapy, a degree of primary hypogonadism.

With a young man, you will need hCG with TRT to prevent sterility. And health youthful testes can make enough T with hCG alone. Say what you will. hCG is replacement for LH. Note that hCG can be given to diagnose primary hypogonadism. If T does not increase significantly with the hCG challenge, you are primary. So then you would need to inject T, but should still keep on hCG to not become sterile.

Hypothyroidism has many symptoms in common with hypogonadism. So if someone is is on TRT and can get the expected T levels, if they have hypothyroidism, they can expect to have lingering symptoms of hypogonadism that are the effect of the thyroid problem.

We see so many cases of combined T and thyroid problems here. Makes me wonder if the rest of the world is like this or does this site selects for these cases.

Is your thyroid thick, asymmetrical or lumpy? Dry skin? Get cold or chilled easy? Nails brittle?

Hi!

I can’t say if my thyroid is lumpy.
I mean the endocrinologist made an ultrasound but didnt say anything.
I guess if he had seen something abnormal he would have said it!?

I dont know if I am iodine deficient.
I have never had this tested.
No doctor measures this, at least where I live…

I used to have too little D3! 3 years ago I got it measured and it was really low.
Since then I am taking D3 and now my levels are up and normal.

What you say about the kidney spilling out hormones sounds scary. How in the world am
I supposed to find out if I have this?

The skin in my face isn’t dry but rather oily. I also have seborrhoic eczema. The skin
on the rest of the body is dry, I’d say. It also looks pretty old and wrinkly.
I have parallel lines in my fingernails, I mean the surface is very uneven. I showed
this to various dermatologists and they all said this means nothing.

I also have very sick looking twisted hair on my head which looks and feels like pubic hair.
I asked a dermatologist what does this mean? He said it’s aging. What an idiot. My father
is 40 years older than me and doesn’t have such sick looking hair.
My hair is usually totally straight but I am growing more and more of these really sick looking
hairs.

My problem is that I depend on doctors! I am not in the US but in Europe.
It took me over 10 years to finally find an endocrinologist who is willing to even put me
on TRT! I went from 1 university to the next with my low T levels and those damn assholes
all told me I’m fine! Even at age 20 I had 250ng/dl and I was told it’s all normal can you
imagine this? They made fun of me and my symptoms. I was treated like someone who wants to
get steroids.

I really don’t think that my doctor uses hcg and if he doesn’t use it then he also won’t give
it to me.
I also asked my doctor what if my E2 goes up under trt and his answer worried me cause he said
it won’t go up because I’m male and don’t have enough enzymes to convert the T. This answer
shows that he doesn’t know very much about trt but what shall I do? I have noone else!
I have been to all clinics in my region. I have been to endocrinologists and urologists. I
was so close to just giving up and then I went to a urologist and once against got tested
and my T was shockingly low and then I thought I had to try it one more time and go to another
endocrinologists.

I have also had a pituitary MRI which was normal.
And I had a gnrh test. I have basically done all tests you can get.
I also had testicle ultrasound. They are normal.
My problem has always been low T + low LH. It has always been this way.
A few times I had low T, low SHBG + high free T but at the same time I didn’t feel any different.
I have also been tested for klinefelter. I don’t have it.

But I look pathetic. I have always had no strength even as teenager.
I could never do pushups. In sports I always sucked.
I always felt like something’s not right with me. I really thought that I have klinefelter
but I got tested and the chromosomes were normal.
I have way too little muscle mass and too much bodyfat. If I substract all my body fat
then I’d probably weigh 60 kilos at a height of over 6 feet.
I weigh around 87 kilos but most of it is fat and I also store fat on the lower body (hips,butt,thighs)
which also looks awful.
And my upper body is skinny fat.
Years ago I worked out in the gym for over 1 year and the best I could ever press on the bench
was 50 kilos which is a real joke. Most untrained men can press 50 kilos.

Here are the lab results from my last extensive test in July.
Since my T and LH were so low on that day the endocrinologist
also had to admit that something is wrong. But usally all the years
before my T has never been so low. I don’t know why it was so low
that day. Usually my T has always been borderline low, like 8nmol, 10nmol, 12nmol.
Those were the typical results I always had.

TPO-antibodies 10 normal range: 0-35 U/ml
eGFR 60 normal range: 60-140 ml/min
CK 90 normal range: 0-190 U/l

cholesterol 160 normal range 100-200 mg/d
HDL 53 normal range: 40-120 mg/dl
LDL 90 normal range: 0-160 mg/dl

HBA1c 5 normal range 4-6%
GPT 25 normal range: 0-50 U/l
GOT 30 normal range: 0-50 U/l
fT3 4.3 normal range: 2-5pg/ml
fT4 14 normal range: 9-18 pmol/l
TSH 4 normal range:0.5-2.5 uU/ml

dhea 3000 normal range: 950-6500 ng/ml
prolactine 11 normal range: 2.5-17 ng/ml
cortisol 120 normal range: 50-250 ng/ml
ACTH 15 normal range: 10-48 pg/ml
IGF-1 275 normal range: 115-360 ng/ml
hgh 0.05 normal range: 0-0.8 ng/ml

LH 0.7 normal range: 0.8-7 mU/ml
FSH 2.5 normal range: 0.8-11 mU/ml
estradiol 33 normal range: 0-56 pg/ml
shbg 25 normal range: 13-70 nmol/l
testosterone 1.30 normal range: 3-9 ng/ml
free androgen index 16 normal range 30-110
androstenedion 1.45 normal range: 0.7-3.5 ng/ml

results of GnRh / TRH test:

LH (start): 0.7 mU/ml
LH (after 30 minutes) 15 mU/ml

FSH (start) 2.3 mU/m (normal range: 0.9-11 mU/ml)
FSH (after 30 minutes) 3.90 mU/m

prolactine (start) 11 ng/ml
prolactine (after 30 minutes) 68 ng/ml

You have a high degree of estrogen dominance. Start with 0.5mg anastrozole per week, in EOD divided doses.

Read the “protocol for injections” sticky and note iodine, sea salt, iodized salt, body temperatures, feeling cold, dry skin, brittle hair, brittle nails and reply here with details.

Earlier: “You seem to be in full blown hypothyroidism now. Check and report your body temperatures, F&C please.”

Pleese read my posts more carefully.

What time of day for the cortisol test?