Considering coming off after three years - advice needed

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My situation is complex and this post will likely be quite long. I'm in quite dire states at the minute, so I'd be extremely grateful if you could read the post in it's entirety. I started TRT three years ago at age 19; I am still not dialled in, and I now have a whole host of other issues that were't present prior to starting treatment.

I went to my GP three years ago complaining of fatigue, inability to gain muscle, low libido and inability to concentrate. I suspected that testosterone might be the issue as I had three testicular torsion surgeries during my late teens, the latter of which involved fitting permanent bilateral stitches to prevent further torsion. The stitches never took and still hurt to the touch six years later, and it also led to a large varicocele forming on my right side. My GP ran some labs, and the results of interest are posted below:

21/03/2016:
Testosterone: 14.2 (10 - 38) nmol/L
SHBG: 41 (11 - 71) nmol/L
TSH: 0.9 (0.3 - 6) mIU/L
HbA1c: 31 (20 - 41) mmol/mol
ALT: 81 (3 - 53) iu/L

01/06/2016:
Testosterone: 12.9 (10 - 38) nmol/L
SHBG: 38 (11 - 71) nmol/L

Kidney, FBC and Lipids were also run and all came back within normal range. As you can see, the blood work was extremely limited, but my GP insisted I was fine and offered me an SSRI - I obviously declined. Because everything was within range my GP said he was not willing to do further bloods, and said e2, FSH and LH were not needed.

I disagreed so sought out treatment via the private sector. I found a private urologist nearby and took my bloods to him - he agreed I was low for my age and prescribed me testosterone there and then with no further blood work. I was quite surprised he offered to prescribe despite such little blood work, I knew I needed more bloods, but I was a naive 19 y/o and didn't know what I was getting into. Starting TRT that day was the biggest mistake of my life.

I spent two years under the care of that urologist, and you won't be surprised to hear he was utterly incompetent. He was uncaring, unresponsive and had no real knowledge base of the male endocrine system. I spent the majority of my time, unsuccessfully, self medicating and educating myself on how to set up a TRT protocol. After extensive research I quickly realised how insane it was to start T with no blood work. I did my best to manage my own protocol but I had little success. After spending two years on my own, I was left with zero libido, complete erectile dysfunction (which was never an issue pre-TRT), a severe anxiety disorder (which I now know manifests when my estradiol is above 150 pmol/L) and a host of hypothyroid symptoms.

When I realised I was never going to be successful on my own, I decided to seek out help and transferred over to my current doctor. While my current doctor is much more competent than my previous doctor, I'm still no closer to getting dialled in and have a number of issues which are progressively getting worse.

Here is a photo of all of my recent protocols over the last year and the associated bloods:

2019 Bloods pic.PNG


On a number of occasions my bloods (referring only to testosterone, estradiol and SHBG) have looked fine and my protocols are reasonable, yet I still feel awful. There was a short period where I felt okay upon adding in aromasin for the first time where I had good erections and strong libido, but this only lasted two weeks and subsided; a similar thing also happened when increasing frequency from 6.25mg E4D to EOD.

Here is a list of my current symptoms, most of which have been present for at least a year:

Erectile dysfunction, zero libido, memory issues, inability to concentrate, constantly cold hands/feet, thinning scalp hair, thinning eye brows, stomach pain/bloating, dry skin, high blood pressure, low oral body temps, palpitations and severe anxiety.

Here's a few photos of the scalp hair loss:
This is where I am now. I've spent three years adjusting medications, doses, injection frequency etc to no avail. It's difficult to remember what I used to feel like before all of this, but I know it wasn't as bad as I feel now. I'm just tired of all this and I don't know what to do or where I'm supposed to go from here. I also have no idea what to do regarding the hypothyroid symptoms.

I'm considering coming off of TRT to see if I can revert back to how I was before, but I don't know if that's possible now. I can't use SERM's due to a severe retinal eye condition, as SERM's cause light sensitivity in some users which suggests it effects retinal function. My eye condition is already severe enough for me to be considered legally blind, so this is not something I am willing to risk. This leaves me with just HCG and aromasin to use while trying to restart my own production. If I do come off I'll discontinue the test, but still use 500iu HCG EOD and a low dose exemestane for two weeks unti the test is out of my system. I will then taper off of everything and get bloods four weeks later. If I do come off, I will likely use this thread as a log to document my progress.

I would love to hear some opinions from the users of this board on my situation. Thanks in advance.
 
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Fair enough plan, the HCG/Aromasin will probably have a variety of opinions but in the end all you're doing is trying to soften the landing as you return to whatever your baseline is, or is going to be. I think you'll be just fine with HCG/Aromasin as PCT as it's called varies in how you can approach it.
 

Systemlord

Member
Speaking of your pre-TRT labs, testosterone is very low and SHBG on the higher end and would expect Free T to be in the gutter. TRT was needed but you obviously have something else going on with you that TRT cannot fix.

It might be a long shot but I noticed Reverse T3 was not tested, Reverse T3 can block Free T3 and cause hypothyroid symptoms. I would also do an iron panel and check all minerals and vitamins.
 

Guided_by_Voices

Well-Known Member
It sounds like something beyond T may be the root cause of your issues such as an infection, thyroid issue, nutrient issue or something else. You might want to consider a consult with a good functional medicine doctor. For example, I believe Dr. Will Cole does phone consults. I seem to remember that thinning hair and eyebrows is indicative of possible thyroid issues, but I could be mistaken. Regarding your restart, I didn't think nolvadex was risk for eye issues, just clomid, but I could be mistaken.
 
Speaking of your pre-TRT labs, testosterone is very low and SHBG on the higher end and would expect Free T to be in the gutter. TRT was needed but you obviously have something else going on with you that TRT cannot fix.

It might be a long shot but I noticed Reverse T3 was not tested, Reverse T3 can block Free T3 and cause hypothyroid symptoms. I would also do an iron panel and check all minerals and vitamins.

Thank you for your advice. With everything you said in mind, do you think I should remain on TRT? My levels were low pre-TRT, but my lifestle was also extremely poor. I just started a new job and was only getting 4-5 hours sleep a night, diet was all over the place etc. I'm not sure which of the lifestyle/testicular surgery issues had the biggest impact on my levels.

I believe my thyroid issues started after I did a heavy cut about two years ago. I spend too long in a heavy calorie deficit, and towards the end I could tell my thyroid production was severely impaired. A few weeks after I hit my goal weight and went back to maintenance calories the hairloss started. I've been in a calorie surplus for almost a year now but the low body temps and other associated issues haven't stopped; I'm unsure if I permanently damaged my thyroid.

I'm going to get a blood test including TSH, fT3/4, rT3, thyroid antibodies, B12, folate, vitamin D, CRP and ferratin. Is there anything else I should include?
 
Fair enough plan, the HCG/Aromasin will probably have a variety of opinions but in the end all you're doing is trying to soften the landing as you return to whatever your baseline is, or is going to be. I think you'll be just fine with HCG/Aromasin as PCT as it's called varies in how you can approach it.

Thanks for the advice, Vince.
 
It sounds like something beyond T may be the root cause of your issues such as an infection, thyroid issue, nutrient issue or something else. You might want to consider a consult with a good functional medicine doctor. For example, I believe Dr. Will Cole does phone consults. I seem to remember that thinning hair and eyebrows is indicative of possible thyroid issues, but I could be mistaken. Regarding your restart, I didn't think nolvadex was risk for eye issues, just clomid, but I could be mistaken.

Thanks for the help. Thyroid is my best bet, though I do think TRT is still an issue, as it gave me ED and worsened my libido well before I had any thyroid issues. Not sure if the two are interlinked.
 

Systemlord

Member
Thank you for your advice. With everything you said in mind, do you think I should remain on TRT?

I do, your original numbers were terrible and is only part of your problem

I believe my thyroid issues started after I did a heavy cut about two years ago. I spend too long in a heavy calorie deficit, and towards the end I could tell my thyroid production was severely impaired.

This could help explain everything, fast weight loss and hard cutting can increase Reverse T3 and starvation diets increase SHBG.
 
I do, your original numbers were terrible and is only part of your problem


This could help explain everything, fast weight loss and hard cutting can increase Reverse T3 and starvation diets increase SHBG.

Do you not think given the lifestyle issues I mentioned above, those numbers could be increased? I live a much better lifestyle now, and would realy like to try and see where I sit naturally. If I need to go back on, I'm happy to do so, but I think I'm going to try.

Is it possible that it could have caused long term damage? It was over two years ago now, though the issues are stilll here. Is it possible that the hairloss is thyroid, and potentially reversible? Or is it likely male pattern baldness from being on T?

Thanks again.
 

S1W

Well-Known Member
The hair loss could be - and very likely is - due to simple genetics. For guys with the genes, it often starts right around your age.

As you progress in years, you get to lose your hair, have it go gray, or if you’re really lucky, both.
 

Jayyy

Member
Your ALT levels are high, seems like u have problem with your liver like fatty liver or cirrhossis. Also check ur vitamin D level.
 

Systemlord

Member
Do you not think given the lifestyle issues I mentioned above, those numbers could be increased?

The fact that you are having problems with testosterone this early in life, no I don't think you stand a good chance at recovering optimal levels naturally. I see people make small increases in the T levels, but nothing dramatic.

Add to the fact that SHBG is already on the high end, age will only see it increase lowering Free T even more. Of the symptoms mentioned, your symptoms scream thyroid problems.
 

Charliebizz

Well-Known Member
The fact that you are having problems with testosterone this early in life, no I don't think you stand a good chance at recovering optimal levels naturally. I see people make small increases in the T levels, but nothing dramatic.

Add to the fact that SHBG is already on the high end, age will only see it increase lowering Free T even more. Of the symptoms mentioned, your symptoms scream thyroid problems.
So why use trt if it hasn’t helped and he has thyroid problems. Address thyroid first and then see what happens?
 

StepbyStep

Active Member
I'm 27, and minus the thinking hair, I had the exact same response to TRT. I felt awful for over a year trying to get "dialed in". I had complete ED too.

I quit back in December, and it was worth it. I pulled more comprehensive baseline labs and my body actually recovered better than I imagined.

I recently started using the cream for a final try at TRT, but if this doesn't work then I'm done. Don't get hung up on the whole "getting dialed" in nonsense. Three years is insane, you need to get a proper diagnosis and try new treatment options.
 

Charliebizz

Well-Known Member
I'm 27, and minus the thinking hair, I had the exact same response to TRT. I felt awful for over a year trying to get "dialed in". I had complete ED too.

I quit back in December, and it was worth it. I pulled more comprehensive baseline labs and my body actually recovered better than I imagined.

I recently started using the cream for a final try at TRT, but if this doesn't work then I'm done. Don't get hung up on the whole "getting dialed" in nonsense. Three years is insane, you need to get a proper diagnosis and try new treatment options.
Let us know how it goes. I have the same trt experience as you only thing I haven’t tried is gel.
 

at15

Active Member
good for coming off bro. you can always try again later in life. if your getting a hard erection naturally there is no reason to go on, no matter what your lab works says or how low your libido or energy is. if you have a functioning hard penis move on with your life.
 
I'm 27, and minus the thinking hair, I had the exact same response to TRT. I felt awful for over a year trying to get "dialed in". I had complete ED too.

I quit back in December, and it was worth it. I pulled more comprehensive baseline labs and my body actually recovered better than I imagined.

I recently started using the cream for a final try at TRT, but if this doesn't work then I'm done. Don't get hung up on the whole "getting dialed" in nonsense. Three years is insane, you need to get a proper diagnosis and try new treatment options.

I'd be interested to hear how you get on too. Please keep us updated.
 
good for coming off bro. you can always try again later in life. if your getting a hard erection naturally there is no reason to go on, no matter what your lab works says or how low your libido or energy is. if you have a functioning hard penis move on with your life.

Thank you for the support, mate. I agree with your view; I no longer care what labs say, if I feel normal I'm going to stay off. I'll post semi-regular updates on this post to document everything.
 
Your ALT levels are high, seems like u have problem with your liver like fatty liver or cirrhossis. Also check ur vitamin D level.

I've had it checked multiple times over the last few years whilst on TRT, and that high reading was an isolated event. I am deficient in vitamin D I believe - most people in England are. I take a supplement but it doesn't budge my levels too much unfortunately.
 

Jayyy

Member
I've had it checked multiple times over the last few years whilst on TRT, and that high reading was an isolated event. I am deficient in vitamin D I believe - most people in England are. I take a supplement but it doesn't budge my levels too much unfortunately.
you need to take 6000iu everyday( thats 6 tablest of vitamin d3) and also add vitamin K2(1000iu everyday). Trust me it helps. Also, go on Keto diet and intermittent fasting. Your problem is nothing to do with testosterone. Its liver and adrenal problem. its actually called adrenal fatigue. U need to eat more meat, egg, chicken, fish and vegetables. Stop eating carbs n sugar until u fix the issue or for 3 months. Drink 2 spoons of apple cider vinegar 3 times a day with water before food. You will fix all ur issue in 3 months. try to take ashwaganda and ginseng too. Try these thinkgs ull be in perfect health in 3 months.
 
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