Considering Stopping TRT & Addressing Pituitary Tumor

I’ve been on TRT for about 4 months with Defy, and it’s been a challenging but at times very rewarding experience. Working with Dr Saya has been entirely excellent - nothing against them!

This all started when I finally saw a dr a couple years ago to address sexual issues I’ve had for over a decade. Turns out my prolactin was slightly elevated (drifts between 30-70) and I have a 5mm pituitary adenoma. Cabergoline and bromocriptine have done nothing positive for me. My TT was in the 400s, and I finally got it into the 500s with a lot of work. FT has always scraped the bottom of lab ranges (7-10ish). There have been other hormonal abnormalities, like low-ish FSH and big swings in cortisol. I don’t have visual field problems, but I’ve never had great vision, and there are fluctuations in it (unsure if related to the adenoma, but I’ve heard of removal improving vision in some). After a year of consideration, I started TRT.

When I finally learned to be patient and not mess with it, things got a lot better. 3 months in, my libido skyrocketed and erectile function improved a little. I’ve been able to maintain a normal weight (160-165) without eating 4-5k calories a day, which has been amazing. Some of the other benefits to my mood, energy, and mental clarity have faded away unfortunately. The confidence boost has faded as well, and I’ve been generally more socially awkward as a result of anxiety.

However, my girlfriend, one of my best friends, and my coworkers have all noticed a substantial increase in anxiety and anger. This is quantifiable too - I’ve burned a couple bridges with partners at work, done/said some inappropriate things when angry, and suffered an increasing amount of panic attacks and latent anxiety. Missed a few days of work due to panic attacks, and have had to really fight urges to drink to mitigate this. At times, I’d say the anxiety has become “crippling.” The anxiety has reached a point where my PCP is insisting I go on anxiety meds (I have not). Losing my temper has shifted from cussing and storming off, to at one point splitting my head open after smashing it into my microwave. At first I thought my reactions might just be from taking a clearer look at problems in my life, but all in all, I’ve suffered more detrimental events since starting. I’ve also noticed my weekly visits to my therapist have shifted from celebrating my progress to digging me out of more problems. He and I are now discussing a more intensive outpatient therapy program; a year ago he was extremely proud of how far I’ve come. Lastly, my girlfriend has noticed that I’m pushing the limits more in being interested in other girls, and I really do not like this, I’m a one lady kind of guy and I take a lot of pride in that.

I’m not posting this to say “4 months later think I might just stop oh well”, but rather trying to take this advice given to me as an opportunity to check myself and see if this is best for me (and those close to me).

This leads me to the next thing…before starting TRT, there has been a notable decline for me over the last decade in things TRT typically improves. I finally sat down and did a bunch of reading on what a non-functioning (aka not secreting hormones) pituitary adenoma can do, and a LOT of the issues I have line up, including it still affecting hormone levels to a degree. My girlfriend admittedly pointed this out a while back, but I was optimistic that TRT would fix it.

I’m now starting to wonder if I would have a better quality of life having the adenoma removed, instead of trying to treat hormones. I’ve read some pretty positive reports from people with non-functioning ones as well that have me wondering if taking care of a quantifiable tumor versus raising low-ish hormones would help more. And possibly bring my natural T levels up a bit, as well as bringing my prolactin down. I’ll also add that my neurosurgeon believes my slightly elevated prolactin could be the “stalk effect” - the tumor pushing on the stalk and inhibiting dopamine transmission.

I’m meeting with a new neurosurgeon this week, and plan to discuss removal options, and if that’d allow me to drop TRT, hopefully improving the anxiety and anger issues.

Really just looking for opinions here, thoughts, and any insight into how long restarting would take after 4 months on TRT if I decide to go this route instead. I’m 35, so not sure if that still lands me in “young guys who stop and recover quickly and sometimes feel better than before they started” or not.

Edited to clarify it’s been closer to 4 months on TRT versus 6

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Do you have recent labs, prior to TRT, and current labs while on testosterone?

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Sure do.

Pre-TRT - this was after a month of trying my absolute hardest to get my levels to their best
TT 558
FT 86
E2 24
Prolactin 38.6

On 150mg/week - libido high, but experiencing anxiety and anger issues
TT 716
SHBG 29.6
FT 29.5
E2 29.3
Prolactin 56.9

On 200mg/week - libido lower, peak of anxiety and anger issues, few erections
TT 1231
FT 49.7

I can relate to your experience, I had other health problems TRT didn’t fix, in fact it made things worse over time. It’s more probable that diabetes is what caused low testosterone.

My pancreas cannot meet the insulin demands of TRT and over time I started creating ketones indicating a worsening diabetes and now I have to treat it before going on TRT.

I think your plan on removing the adenoma is a good one since it seems to be causing hormonal problems even on TRT.

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Appreciate the input.

Do you think it’s totally unreasonable to try to stop cold turkey after being on it for just shy of 6 months? I’m thinking this would be at least worth a shot.

If that doesn’t go well, next decision is between Clomid I already have around, or calling Defy to setup a plan (which I suspect would involve tamoxifen).

If you don’t do what you think you need to do then you’ll always wonder “what if”. Do it. You can always go back on if need be.

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Off TRT, total test is 558 and free is 86 with SHBG 48.

You go on, total test goes to 716, SHBG drops to 29, but free test also drops and not just a little bit, to 29?

So you increase the dose, which seems logical, total test goes to 1231, but free test only increased to 49? You more than double your pre-TRT testosterone level, and free testosterone drops almost 50%?

I have no explanation for this. Your free test is at 0.4%, decreasing from 1.5% with TRT. It’ll be interesting to see what the neuro thinks about removing the adenoma.

Normally, I would say around three months, Good luck. As mentioned, you can always go back on TRT.

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That’s what I figure. I take the feedback from others to heart, and I don’t want to go for years only to find out it’s worsened my life.

Worst case turning it around is only an injection away if it gets too terrible.

Made an appointment with a local urologist who’s been suggested on here before, going to ask him for help quitting in case I need tamoxifen or something. I’d call Defy, but I know it’s harder to make an appointment this soon with Dr Saya.

I’m in a FB group with other pituitary adenoma people, and they insist you can have them removed if they’re the size of mine. Might just take asking a couple of doctors and really stating my point.

So it is too big for caber?
The best removal method is gama knife but it is quite expensive

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My insurance should cover the surgery, just have to find someone who’d do it. I’ve heard positive things about gamma knife too.

I guess 5mm is “medium sized” but caber doesn’t seem to help it much as it’s apparently not a prolactinoma. Plus caber and bromo just made the sexual issues worse.

How’re you doing on caber? Still on it?

Yes Im good on it but I dont have a tumor bro

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Also…did the basic math and it’s more like 4 months I was on TRT. Hopefully that will make it a little easier versus if it were 6 months!

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You need to remove that tumor but I dont think you will be able to achieve optimal t levels after that without TRT. But for sure you need to see what will happen. Hopefully you you start TRT after that your side effects will diminish with the bloody tumor

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Thanks man, hoping the same. The big thing I’ve noticed is that neither the DAs nor TRT have been a silver bullet for my sexual issues, despite a brief improvement when starting either one.

I’m not banking on removal giving me the T levels of a teenager, but any improvement would be good news to me. Plus even at 1200 now, I’ve barely thought about sex lately compared to pre-TRT. In other words, I don’t think it’s the fix I wanted it to be.

I was on trt for a year and tapered off was easy I think it gets blown up to be a bigger deal than it is no pct

Hey man, wanted to get an update from you. I have a slightly elevated prolactin (21) and a 3.5 mm microadenma. I have non existent sex drive. I’m not sure what to do. Did you end up removing the tumor and did it help?

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@csnation123 In that case the first step is to start with cabergoline to see how you will respond to it

Hey! I’m meeting with another neurosurgeon in about a week. He found something wrong with my last MRI and wants it redone. I’m not 100% decided, but I’m trying to push for removal. Especially right now as I’m working from home so I hopefully wouldn’t have to miss as much work.

From my experience, a few things:

  1. How many prolactin (PRL) tests have you had? A lot of factors can raise it, and it might be worth a second test before taking any drastic measures. Mine swings between 30 and 70.
  2. Are you on any medications that might raise PRL?
  3. Have you had an MRI? I find that most doctors want to order one after seeing elevated prolactin.

In my case, my prolactin is technically within range because of something called macroprolactin that exists in a portion of the population. Basically it’s biologically inactive. But there’s not a lot of studies on it, and some doctors seem to have found that it’s still somewhat active. It is attributed to a lot of false hyperprolactinemia diagnoses.

While ultimately cabergoline might help you, it’s a pretty serious drug with a lot of nasty side effects (for some, not all, I barely get any). But when I first got my PRL tested and it was elevated, I jumped to asking for caber, and I’m glad my endo put the brakes on that. Also, caber is pretty potent, and in guys like us with <100 PRL levels, it’s likely to just crash your levels and make your sex drive even less existent. That’s what it did to me; after a couple weeks off it, it bounced back. Don’t fall into the assumption I did, where you think caber is the end all sex life fixing drug. While it does turn a lot of people into sex craving maniacs (kind of joking), it’s only one piece of the puzzle.

Take your time, get the right tests, and you’ll make progress. Honestly, I’m newly single and I’m more concerned about getting to the bottom of this the right way than I am with actually having sex.