Feel Like I'm at the End of the Rope

Hey guys - I’ve posted before but not in a while - was hoping that someone might be willing to offer a directional path.

History is I’m 40 YO, was diagnosed with low T when I was 32 and went on gels. When my son was born 6 years ago I switched to IM to avoid any transference risk. I’ve never really felt better and in the last couple of years I have developed this massive fatigue.

My PCP refered me to an Endo and he basically berated me for being on TRT saying that since he did not make the intial diagnosis that the only way he would treat me would be if he could prove some sort of pituitary dysfunction or if I stop TRT for 4-6 months so he could get a baseline. The guys was pretty much a dick about it.

Symptoms - massive fatgiue, difficulty sleeping, brain fog, inability to transfer short term memory to long term, lost my sense of smell (not sure if that matters), no morning wood, ED unless on Cialis or something and then it’s 50/50, penis dysensatation, depression, feelings of isolation, obesity (I’m 6’1’’ 240) but all in my abdomin. Plenty of body/facial hair (full beard in 4 days).

Current regiment is 1.5mg of 200mg/ml Test per week.

Some test results (not all the recommended but, again, the endo was a dick):

Total Tes 3.41 ng/ml - range 2 - 11 - day 5 after shot
Prolactin 15.2ng/ml - Range <15 - taken 5 days after sex
ESTRADIOL <20 - range, does it even matter - thanks for being so specific - it’s <56
Cortisol 9.1 mcg/dl - range 10.4 - 26.4 - taken at 8:10AM
SOMATOMEDIN C (GH) - 98 ng/ml - range 132 - 333
ATCH 13 pg/ml - range 7-51
TSH 1.36 mcU/mL (0.300-5.00)
T4 0.79 ng/dL (0.50-1.20)
TRIIODOTHYRONINE 130 ng/dL (80-200)

The Endo said that my growth hormone and cortisol were “borderline” low (whatever the Hell that means - they are below the range). He did the ATCH and GH stimulus tests and they both came normal. So since they were were normal and I don’t have a massive tumor or 3rd eye, the Endo basically told me to hit the road unless I wanted to come off treatment for 4-6 months (which is a brillant idea).

My take on it is that given the level of stress that I’m under my cortisol should be higher and obviously my GH is out of range. They both responded to stimulation so stuff works but in my natural state they are low. My prolactin is also highish which may explain some of the sexual dysfunction.

I plan on making diet/activity changes to hopefully effect some of the numbers but not sure what else I can do. My PCP will probably just want to continue the TRT, which is fine (my results before TRT were like 1.79 when I was 32) but I don’t see how that will get me anything other than I feel today - which is crap. I can’t push him for anything else because he basically has the Endo telling him that I’m fine.

Anyway, sorry for the book, just wanted to get to feeling better and at this point it’s just somewhat demoralizing.

Take care

This endo sounds like a real winner…

That’s a lot of T for such low numbers. And low estrogen without an AI?

Have you read through the stickies at the top of the forum? You can edit your post at the bottom right and add more info, previous blood tests and other information you think might be pertinent. Link to your log if you had one?

I’m on my phone so ill look through your post thoroughly tonight. I’m sure some other guys will as well.

Welcome back. We’ll do our best to help.

Do you use anything to control Estradiol ?
Am I correct in reading your e2 is higher than 56 ?

Hey man, definitely don’t give up and definitely do read and reread the stickies!

I’m fairly new here and have not posted a case thread yet, tho will be in near future. Site has helped me immensely. My endo had no clue as well, wanted to get me on Androgel with no discussion of other options, flat out refused to test E2, DHEA-S, etc. As frustrating as it is, the best thing you can do is move on until you find the right doctor to work with you.

Early on, for me these were the best tips from stickies on finding a doc: 1) find a good compounding pharmacy near you and talk with them, they may refer you to doctors that have experience in the area; 2) have a heart to heart talk with you primary care doctor, you may be surprised to find he or she may be willing to work with you. In my case, I found a compounding pharmacy near me that provided hormone replacement consultations and will work with your primary care doctor. This was enough, combined with my own research, for my doctor to get on board. For 3 months now I’ve been on protocol of Test. Cyp. 50 mg every 3.5D SC with 28g 1cc insulin pin, 250iu HCG EOD, and .25mg Anastrozole EOD. Fatigue, brain fog, libido, muscle tone, erections, etc. are significantly improved and weight is coming down slowly tho lost about 5 inches on waist.

I’m sure other guys here can give you more guidance, but one thing I noted in reading your post was stated loss of smell. I believe this is a classic symptom regarding prolactinoma and your prolactin was slightly high; you probably want to get an MRI study done. Anyway, best of luck and hang in there.

I would like to preface this post by saying that more lab data is necessary. We are flying close to blind without complete lab data and can only speculate with the data we have and the symptoms you describe. Fatigue has countless causes, and is so prevalent that they have made up a disease for it called Chronic Fatigue Syndrome.

What many practitioners fail to acknowledge is that fatigue is a symptom of a problem and not the problem itself. They treat low testosterone in a similar fashion without finding the root cause. You would probably benefit from an endocrinologist, but I think it’s outrageous to say you need to be off TRT for 4-6 months. His baseline can be achieved in a shorter period of time. I would see another endo if I were you.

This doesn’t mean we have to stand by idly during that time. I wrote down a few questions that could help point us in the right direction.

Also, since we are a TRT forum and “specialize” mostly in that, I would like to kick this off by posing the question to other members:
150mg test cyp/week only gets him to 341 ng/dl and sub-20 E2 without the use of an AI with him carrying the majority of fat in his waist? Something is off here…
-Jax, men with higher BF (especially in the belly area) tend to aromatase more T->E2. You don’t seem to be doing that.

Questions for Jax (copy and paste with your answers):

  1. What happened 2 years ago (or shortly before)? Did you move to a different region/area? Did you gain weight at that time? Anything significant?
    -Allergies, sleep apnea, stress-induced adrenal fatigue?
  2. Has your peripheral vision been tested?
    -pituitary adenomas sometimes hinder vision
    http://www.medicinenet.com/visual_field_test/page2.htm
  3. When did you notice your inability to smell (hyposmia)?
    -prolactinomas have been linked to hyposmia, look up symptoms for Kallman’s Syndrome
  4. Do you notice fatigue at any particular point during the day? Do you wake up tired?
    -4-point cortisol test can determine adrenal output (cortisol)
    READ ME: Symptoms of low cortisol - Stop The Thyroid Madness

EDIT: 5) Do you live in an area where Lyme Disease could be an issue?
6) What is your diet like? Do you ingest red meats?

Some simple tests that can be done at home:

I’ll add more questions as they come to me.

Someone else chime in I missed something.

Amateur here so don’t beat me, but it looks like his E2 is less than 20. I have read that sense of smell increases with higher E2 (especially in women) and decreases with lower estrogen, so could his lack of smell be related to tanked E2 and couldn’t that also explain some of his misery?

E2 <20 doesn’t tell us much, could 19 which would be ok… Also could be 2 which would suck…

Prolactin is increased I’m going to suggest an MRI as you could have a prolactinoma (pituitary tumour). Even if this is the case we have more going on here…

Kaynon has offered some very good advice…

Gh is not a good marker and igf-1 should be tested, also while we are doing this ast and alt(liver markers) need to be tested as well…

Lyme disease is a epidemic in the United States and Canada right now!!! You are not alone in your struggles my friend, hundreds of thousand of people are undiagnosed with the same issues… I am by no means saying the only answe here is Lyme but I am saying it should by no means be over looked. there are over 100 different co infections of Lyme that can also be transferred… One with a weakened immune system my not produce anti bodies and there for may have false negative testing when testing for Lyme… The current standard for testing in the US and Canada are out of date and the western blots and ELISA tests are often useless unless the disease is in an acute state… What happens is Lyme attacks the white blood cells so you don’t produce antibodies then when they test the ELISA test you show nothing so they don’t even bother with the blOt an tell you “it’s all in your head”… My suggestion is to find a Lyme literate doctor in an state where they are safe from prosecution for treatment and go see them… Lyme is a clinical diagnosis!!!

Igenex labs in California tests for Lyme and co infections… Possibly the best western blot test

Fry laboratories has some microscopic blood slide testing that is also great and is a reputable lab (maybe not to the CDC but fuck them)

If you need further advice on Lyme I will offer it but I will not offer treatment options on this site…

I will say this… No matter what treatment you choose you need to

A) get the liver functioning well

B) the kidneys

C) digestive tract all of i

My advice is to get to a hormeopath or naturopath for now and start getting the body functioning as well as you can so that once you start killing whatever disease or fungus you are able to clear it from the body… Also you need to get the guts working very well incase you end up on antibiotics!! I have been where you are and someone helped me to understand things… I will help you if you like but you will have to leave your email address. Let me say 65 percent of homes in the US are full of mold and fungus, often we find Lyme is not the only thing contributing to the persons illness

Do you have any joint pain!??

Tinnitus?? Ears ringing, hyper sensitivity to sound or hearing loss?

Impaired wound healing?

Tingling under the skin?

Flu like symptoms?

Did you suffer from some kind of stress prior to your symptoms? Loss of a loved one, loss of a job, divorce ?

where are you located??

Leave you email here if you want some help…

Piece of advice… Stay strong in your mind!!! This will save you… Do not give up on yourself!!