I’ve been meaning to write a post that sums up my current thinking on our condition. Here is where I’m at after months of reading just about every case on this forum and the old Yahoo forum.
I think it is pretty clear now that the post-Propecia syndrome is about a dysfunctional response to androgens. Our bodies are no longer responding to T and DHT properly, whether it is our own or it is supplied via gel or injections.
b What the post-Propecia syndrome is not[/b]
It’s time to finally put to the rest the idea that our condition is about either a straightforward hormone imbalance, a prostate problem, or a neurological problem.
None of those can explain the range of symptoms we see in most post-Propecia cases. If it was the first, good TRT would work, and it usually does not. As for an infected prostate, that does not cause brain fog. It doesn’t stop your hair falling out when it was falling out before. Neurotransmitter imbalances don’t cause changes to the structure of the penis, or make your testicles shrink.
No doubt prostate and neurotransmitter problems occur in post-Propecia men, but they occur because androgens are no longer exerting their effects in the body.
b So what is the post-Propecia syndrome?[/b]
In short, we’re not responding to androgens properly and we don’t know why. This androgen insensitivity causes the body to perceive an excess of estrogen, leading to a cascade of disruptions in normal hormone production, causing the low T and DHT levels we often see, particularly in guys only a few months off the the drug.
Looking at reports closely, it seems our condition is in some way related to the regulating mechanism by which the body adjusts to androgen levels. Our bodies seem to now perceive normal androgen levels as excessive, and so downregulate the response to that normal androgen level. Look at what happens when we try TRT: typically guys see a couple of weeks of improvement before the body downregulates response and the condition regresses. That’s a response to TRT that is a unique hallmark of our condition: it is not a typical response among steroid users who have messed up their HPTA. This response is a version of the same process that occurred in many when they stopped the drug: DHT comes back online and they see a two week recovery, then the body seems to downregulate response to androgens and there is the infamous “crash”.
The fact that Saw Palmetto is causing the same problems in some guys points to the idea that it is not finasteride itself that is causing this syndrome, but the characteristic that it has in common with SP: that it causes androgen (specifically DHT) deprivation.
In symptomatic terms, then, we suffer all the effects of androgen deprivation. The problem does not seem to be about androgen receptor binding and dissociation rates or about a genetic mutation or deletion of the androgen receptor.
I’m indebted to Awor for helping me to come to and clarify these thoughts.
b What can you do about it?[/b]
Some guys try to treat the post-Propecia syndrome as a neurological problem. GHB, Welbutrin, Phenibut etc, are mood altering substances that ameliorate some symptoms and make guys feel better about life. They do not address the underlying problem. There’s a small chance that something more may be going on with GHB - there is material about it influencing 5AR somehow - but no one really understands this.
Some guys to to treat the post-Propecia syndrome as a prostate problem. Fluoroquinolone antibiotics such as Ciprofloxacin aggresively kill gut bacteria resulting in a surge in serum levels of available T and DHT. This can cause a temporary improvement in symptoms similar to the temporary lift most guys experience when they try TRT. Guys take these antiobiotics, see this improvement, and wrongly conclude that the heart of their problem is a prostate infection.
Some guys do nothing. Reports of spontaneous improvement point to the idea that the post-Propecia dysfunctional response to androgens improves over time. That is, over time the body re-learns to use androgens to a certain extent. For some guys this seems to happen to the point where they eventually regain decent function and feel.
Some guys try TRT: see below
The mystery of post-Propecia TRT
As discussed above, the typical post-Propecia TRT response - initial improvement that quickly tapers off - is one of the key clues in this puzzle. Most post-Propecia guys don’t respond to TRT.
If you’re one of the lucky few post-Propecia guys who can take external T and DHT and see androgenic (erections, libido, facial hair) and anabolic (muscle building) effects, then this is great. It means you are rescuing your body from the damaging effects of androgen deprivation. Your brain, muscles, bones, etc, are all using androgens again. This gets as close to solving the problem as we can at this stage.
We don’t understand why some post-Propecia guys respond to TRT when most don’t. These guys are not responding to their own androgens, but they are responding to external androgens, which is a puzzle. Still, at least they are no longer suffering. Usually, it’s guys who are years down the road who respond to TRT. This adds more weight to the idea that post-Propecia androgen response improves over time: our case studies support the idea that longer you’ve been off, the better the chance that your body will be able to respond properly to T or DHT that you put in.
TRT is a patch up. You’re ameliorating the effects of the problem without solving the core problem. There’s a good chance that the fundamental nature of post-Propecia androgen unresponsiveness will never be uncovered, given how rare it is and how many other medical problems there are to solve in this world. We can try to push the process along by making approaches to the medical community. If TRT works for you, you can take it or you can wait for a total cure and hope you improve in the meantime. If you’re waiting for a cure, I’d estimate that there’s no need to check back within the next 10 years.
Looking at all the cases we’ve assembled since 2003, that seems to me to be where we’re at. No doubt the discussion will continue, but it is heavily influenced by varying degrees of wishful thinking and crazyness.