Aaron, where do you live and do you have health insurance?
I have kaiser unfortunately, when I went on TRT I had to go to a private clinic and pay out of pocket as kaiser does not cover hormone therapy unless my Total T is under 175 and even then I’m not sure if they would.
When this was going down did you ever measure estrogen?
Yes I even used AI but had to stop due to severe bone pain thankfully that symptom went away. My estrogen was high though regardless of how much T I was using. I’d use 50mg every 3 days and still convert upon injection my chest felt very tingly basically gyno forming.
Have you continued cycling on and off to experience these temporary improvements?
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I am on TRT and I’d say I’m about 90% better than before starting. It has made a huge difference for me. I’ve gone from barely being able to have sex once a week if the stars aligned to being able to every day no problem. It took several months of a steady dose/protocol before I really started to feel better, so when I see people say their blood tests looked good 2 weeks later but they don’t feel better… well, no shit. Look at 99% of the people on TRT (aside from PFS) and they too will tell you it takes 6-8 weeks to really start feeling better.
I’m on 195mg/week (3 x 65mg injections per week) of test E or C (can’t remember, whichever one is common in the US) and have been since July 2019 (roughly)
It has made a huge difference in my life and I have no problem being on it for the rest of my life if (likely) necessary.
Note: My personal opinion is there are multiple “types” of PFS, i.e. this drug has multiple ways of screwing you. In my case, I had the “super high SHBG, super low free T” version which, fortunately, seems to respond to TRT. I’ve met probably 5 other people on some of the TRT forums with this exact same scenario and almost all of them responded to TRT well. The other type… where your body doesn’t seem to even know what to do with testosterone is a whole other can of worms that TRT doesn’t seem to touch. I feel REALLY bad for people that have this version… Hopefully we figure out what to do about it soon.
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I’m doing that right now actually. I’m getting nocturnal erections, vivid dreams, and more libido during the day.
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What is your ‘protocol’ regarding dosage and duration and time between dosing?
@orthogs I am still working that out. And I see my neuroendocrinologist next week to help me. I do know that the whole clomiphene pill each day is too much–I get acne like blemishes. So I use half a pill every other day or every 3rd or 4th day.
NCSU grad (or anyone else), regarding your opinion, have you seen any trends as far as people with free / bioavailable T at the bottom of the range - but with SHBG in range - as far as responding to TRT? I’m 14 months off Finasteride and thinking about going for some kind of TRT treatment.
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Are you doing IM or subq injections? What about E2 control?
I would look at it from a different perspective. Forget about PFS altogether and look at it as you have x symptoms vs. your hormone levels. Do those symptoms line up with low T? If so, then consider TRT
It’s NOT uncommon to have symptoms at the bottom end of the free T range. Some people need to be on the high end of the “normal” range (don’t get me started on how they decide what “normal” is) to feel normal and some people even need to be a little over it.
So… to me, if your symptoms fit with low T, and you are on the low end, then it may be worth trying out. Keep in mind it will take a minimum of 8 weeks at a steady, consistent, dose to get positive effects. 2-3 shots a week minimum to keep things stable. 100mg/week minimum. I would start with 150mg a week (3 shots of 50mg each).
Just taking a big shot of testosterone and spiking your blood levels won’t typically do much good.
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Shallow IM. 30g, 1/2" needle, delt injection. 3x per week.
Why would I “control” E2? This is a major misunderstanding created by the body building world. There is no reason to do this, especially at TRT doses.
E2 is responsible for a lot of the positive of TRT… libido, cardiovascular health, bone health, etc. The vast vast majority of people need to NOT control E2. Just inject T and let your body figure out the rest.
The ratio of T to E2 seems to matter more than the actual values of E2. Mine is over range for sure, but so is my T, so it works out fine. I had swollen feet the first week or two of being on T but it went away on it’s own
Anyways, I’ll get off my soapbox now. But yeah, people make it way too complicated and think they need Arimidex and HCG and T and all these vitamins and blah blah blah. It doesn’t need to be that complicated. Give your body the T it needs and it will figure out the rest (in most cases, I won’t say 100% of them)
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I started trt 3 days ago in the form of gel. After the first application I woke up at 3 am and felt great. Positive calm contexting things looking forward to stuff and not worried at all about what normally plagues me & even feeling humour. I fell asleep at 4.30 then woke at 8 where all of the mental gains were gone. Over the course of the next day I started looking at women again! with nothing happening downstairs but saw this as a positive. Unfortunately my skin got even dryer with severe testicle pain. Last night I was pissing like a horse with kidney pain. Today started very badly with severe agitation, muscle weakness and crushing anxiety. I went to the gym couldn’t lift much or make eye contact. I’ve since stayed at home alone contemplating the worst and having hormonal sweats. I know which strategies to apply re the anxiety but just wonder where the hell i can go from here. Everything I’ve tried has turned me inside out trt was one of my last roles of the dice. Stem cell therapy awaits but I doubt this will do much. Seems my receptors are well and truly smashed. 20 years in and progressively getting worse
As NCSU’s situation was, Super high SHBG, super low free T seems to be a (relatively) great spot to be in. Get the SHBG down - and there seem to be ways to do this - and everything should balance out better. More importantly, the situation seems to give some confidence that nothing is seriously messed up, right? The free and bioavailable T are low for a clear reason.
I have everything in a good normal range. Except free and bioavailable T at the bottom end of the ranges and total DHT towards the low end too. As compared to Testosterone, the percentages of free T (6.6 / 512 = 1.3%), bioavailable T (136 / 512 = 26.5%), and DHT (32 / 512 = 6.3%) are lower than what they should be based on the very normal SHBG (35) and Albumin (4.5) values - getting close to half of what would be predicted with one of those online calculators across the board. So T level of a 45 year old man and Free / Bioavailable of someone 80 - and all the low t symptoms that would be expected.
Raises the question - if total testosterone is not bound up with SHBG and Albumin, what might be going on? Therefore, I have less confidence I would respond quite as well as NCSU as something seems more unexplainable in the puzzle, based on the little I know about all this.
It would be good to find some better fact patterns of predictability of when to T and when not to T.
Well, my PFS specialist (one of the few–he is in NYCity) got a little upset that I told him that lowering my estrogens/estradiol too low led me to have side effects like joint pain, tendinosis, hot flashes, lot of fatigue and worsened cognitive impairment. I told him about chemotherapy cognitive impairment that women get who take AI’s. He didn’t know about it and poopooed the fact that AIs are chemotherapy for breast cancer! The fact that it is in pill form and not a drip attached to an IV does not mean that it is not chemotherapy.
I also told him that this disorder PFS is not a regular hypogonadal or high estrogen disease. I think he has been treating his PFS patients like they have hypogonadism but without realizing THAT REPLACMENT TESTOSTERONE DOES NOT WORK VERY LONG if at all for us. Sorry, I was pissed off, and I am usually a very calm, levelheaded man.
After all that, I also reminded him that I have thyroid micro cancer, which luckily is not growing or spreading–it’s only a few millimeters in size. What is the only risk factor for me? Taking Clomid at full dose for years. So I am off Clomid, and AIs, and testosterone. I am not sure what is going to work.
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Gel is probably the worst form of TRT there is, way too weak. I just can’t imagine why it would cause kidney pain though? Very strange. I did have some anxiety and didn’t sleep as well for the first few weeks but it went away. It’s pretty common but sounds like it might have been too much to tolerance for long in your case.
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Wow. That’s literally textbook symptoms of low E2… I can’t believe he was surprised by this. There are studies showing how bad men feel on higher doses of Arimidex so it’s not just some bro science internet theory.
I’d agree that is the case for some, but not all. Honesty, me reading this so many times made me reluctant to even try TRT, but I’ve been on for about 6 months now and it’s helped quite a bit.
I guess someone could make the argument of how do you know someone has PFS vs. hypogonadism? Mine started right after stopping Avodart so I always blamed it on PFS but how do we really know for sure it wasn’t just hypogonadism and one heck of a coincidence?
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I only applied one half of the dose but I’m so sensitive to everything. This has now been the case for 3 years when I started to develop numerous food intolerances. I get reactions within minutes of eating it’s now the same with many other things I even react to warm showers within minutes.