Log: Narcolepsy and TRT - Started TRT Sep 18, 2023

I’m narcoleptic in my early 30’s seeking means to increasing energy and mental performance and reducing body fat and daytime fatigue. I got labs done with my provider and am curious as to whether low testosterone is contributing to my symptoms. Having abnormal sleep cycles (entering REM within 30-60 seconds), no sense of restoration upon waking, and a demanding lifestyle of work and three girls at home could impact my test levels negatively I’d imagine. I’m excited to get my blood work results back and see if testosterone levels are playing into how I feel day-to-day. I don’t see a lot of cases where narcolepsy and low testosterone run in parallel or potentially having correlation or causation. If I do have low test then I’ll definitely opt for TRT. I have been dealing with my symptoms, noticeably, since 2017. If TRT can help alleviate my symptoms and make me feel great day-to-day then why not? It’s not like my testosterone levels are going to increase as I get older, might as well get on a program if the blood work details low testosterone. What has been people’s experience with improved energy and mental clarity/performance, as well as, have users found they’re able to sleep better at night and wake feeling refreshed? Any additional thoughts and feelings are appreciated.

Determining low-T isn’t always simple. Steroid metabolism, AR gene CAG repeat numbers (sensitivity at the androgen receptor) determines when you experience low-T. A lot of the medical Society guidelines are decades behind the medical science.

For instance, the Endocrine Society guidelines state <300 to be eligible for TRT, but when asked by doctors why this number was chosen as the cutoff, the answer was it seemed like an easy number to remember, but they needed a cut off and they made a decision.

The same for hematocrit management on TRT, <54% was chosen because it seemed like a safe number.

The takeaway here is all these cut off numbers are arbitrary.


Many medical professionals, consider the lower end of the free testosterone range to be a sign of hypogonadism or low testosterone.

It’s pointless to go based off other people’s experiences on what to expect out of TRT for reasons stated above, no two people respond the same, everyone is different, right down to your DNA.

I don’t have narcolepsy and you don’t have type 2 diabetes.

TRT isn’t a panacea or cure-all.

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I appreciate the feedback. If the levels from the blood test reflect low test then I hope that TRT may help improve my quality of life. I understand we’re each subject to our own unique perceptions and experiences, all the way down to our DNA. At the same time, I’m hoping this post may act as a point of reference with others that struggle with narcolepsy that haven’t had their blood tested yet. I’m optimistic that I’m onto something.

Because, narcolepsy aside, abnormal sleep cycles, in of itself, can impact baseline test levels. I could perceive it as second order effects that are potentially impacting my test levels. Won’t really know until I see the numbers when the blood test comes back.

Isn’t the whole point of asking on a forum just that? To get peoples individual experiences? I mean you’d be an idiot to come here looking for qualified medical advice, that’s what doctors are for and yes they can be wrong but so are we frequently.

This may be a fact, but how do you test for all of this? I’ve not been offered it by the people who I get my bloods from, they are a large UK clinic who treat many and as far as I can tell not by doing this?
Indeed the link you provide lists a TRT provider who asks questions then offers blood tests doesn’t seen to say they’re going to check this (although maybe they do?).

Sorry to highjack your thread with no useful information, I believe testosterone, especially
higher levels can affect peoples sleep patterns so maybe low levels can too? Hopefully someone will chip in with their own personal point of view.

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@shifl may not get the same benefits out of T therapy that I have experienced. There’s no problem telling him the potential benefits of T therapy but whether he will experience, some or all of the benefits is an unknown.

No two people respond the same to T therapy. That’s my message to @shifl.

Testing isn’t widely available to the general public, for research purposes only. The day will come when doctors will be able to look at your DNA to determine if you qualify for TRT.

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I appreciate your feedback. That’s what I’m after is generalized experiences. Energy and restorative sleep are what I’m after, especially since my sleep cycles are abnormal. With abnormal sleep. I figured that would affect my T negatively the same way that good sleep would have a positive effect. If people have experienced improved energy and sleep on a personal level, then I would love to hear about those experiences. You can read all you want about studies and testimonials, that are paid, but nothing beats person-to-person feedback.

Testing down to a DNA level sounds fascinating. I wonder if it will still properly diagnose the individual, or still have the broken system of 300-1000 to being ‘normal’. I bet someone at 1000 would potentially feel better than the same person at 300.

My energy levels went from nonexistent to insane levels, co-workers call me the flash at work. No one half my age in my life or at work has my energy levels at 51. Sleep is still improving, and considering I was only sleeping 2 hours in the beginning, this is a massive improvement in sleep quality.

AR gene CAG repeats 24> with normal testosterone is consider a testosterone deficiency.

Add in endocrine disrupting chemicals, and you have a recipe for disaster or what some perceive as tolerance shortly after starting therapy.

TRT can modulate (upregulate) the androgen receptor, which is why some experts recommend TRT to those with normal levels but symptoms of low-T.

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I cannot thank you enough for your feedback. That was exactly what I was looking for in an answer. I’m hoping that these categories are addressed for me as well. I’m glad it has been working so well for you individually.

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I’ve got mild narcolepsy/hypersomnia and low T.

I started TRT to improve quality of life and it did. However, it did nothing to help my sleep or drowsiness.

I’m also ADHD and prescribed Adderall. This medication has the dual purpose of keeping me awake so 2 ailments treated with 1 medication. You may want to try -afinils to deal with narcolepsy. Don’t die driving home outof habit; i almost did many times.

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Happy to hear from someone who also deals with narcolepsy. I’m already on Modafinil and it works pretty well during wake hours. I’m glad that TRT has improved your quality of life. I understand it didn’t help with your sleep or drowsiness, however did it aid in your day-to-day energy and motivation to ‘go and get things done’? How about waking up and feeling somewhat rested? I fortunately haven’t had to struggle with driving (glad it was a few ‘almosts’ for you; we can live and talk about those), it’s mostly during monotonous tasks or sitting at a desk at work. Do you personally feel narcolepsy impacted your test levels negatively due to irregular sleep cycles?

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Energy, meh. Ability to follow through and get things done, yes. Im ADHD so my situation is different there.

No impact.

I couldn’t tell you tbh. Research data says it played a role, and bros everywhere say it (sleep) plays a role in test levels, but i have no means to separate the “why” from the end result without being able to fix my sleep/narcolepsy issues as a test.

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That’s also where my energy levels come from, also Tourette’s syndrome. If you ever see someone with TS, it’s like their CNS is in overdrive.

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I appreciate you addressing those questions man. I reached out to my primary for an update on the labs so hopefully I’ll be hearing back soon. I’m hoping for an improvement on overall quality of life. If I could at least get that then I’ll say it’s worthwhile.

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Got approved for test cypionate 200mg a week, split up in two 100mg, as an initial program. With a follow-up in 8 weeks. I’m excited to see how my body reacts and see if things improve over time. I’ll log progression here.

Was given anastrozole on standby if estradiol levels need to be addressed.

That’s too much for someone just starting out on TRT. Cut it in half, 100 mg or 50 twice weekly.

Courtesy of @tareload:


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Thank you for this data. Provider suggested starting at 200mg and dialing down if needed. It would be more beneficial for someone starting to start at 100mg and go higher if needed?

You can’t blindly trust a provider. The majority of men on “testosterone replacement therapy” are between 100-150 mg weekly. Some are optimized at 70-80 mg weekly.

More testosterone is not always better.


Start low and then go higher if you are truly wanting to do legit TRT. Find the minimum effective dose.

Dialing in the dose will be about symptom relief for TRT, not some numbers on a lab report.

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I appreciate the insight. Symptom relief is my short term goal and optimization, the long term. All the reason why I’m going through a provider to make sure my health is monitored. What is a good trial period to properly evaluate each dose? Doctor wants a follow up in eight weeks to check efficacy of treatment. Is eight weeks appropriate for each dosing trial? Or a different trialing period?