Can We Improve through Accurate Labwork & Supplementation?

General Discussion
#1

I apologize in advance if this is too obvious and if it’s not contributing enough to the discourse in a scientific or intellectual manner. I understand I may be exposing my lack of scientific literacy, especially with regards to PFS.

It seems we understand the what hormones & proteins are involved in the male reproductive system, their interactions with each other, and at what amounts each should be present in.

It seems we even have a similar understanding of the neurological mechanisms, the neurosteroids involved, what different deficiencies and misbalances in them can lead to.

It also seems that we have comprehensive knowledge about available supplements & pharmaceutical treatments that can raise & lower each one of these crucial substances in the sexual, neurological frameworks.

Would it be wrong to assume that our problems are the result of imbalances & deficiencies in our various biological systems?

Or that even if the deficiencies are not the underlying cause/mechanism, bringing them into normal levels would at least alleviate and improve some of our symptoms?

Can we not develop a holistic comprehensive panel of things to be tested for, and then propose a personalized Supplementation plan for each individual based on their apparent deficiencies? Then, the specific imbalances could be tracked during the supplementation to confirm the effects & dynamically modify the contents of the treatment.

It’s clear that our bodies react to different supplementations, whether negatively or positively.

Would it be wrong to assume that the different reactions to the same supplementations could be due to the fact that we’re potentially suffering from different types of hormonal and neurosteroid imbalances? This would seem the inescapable result of randomly trying treatments solely based on treatments without any guiding markers from labworks.

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#2

I think the difference in symptoms is mainly dictated by the difference in the autoimmune response to AR.

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#3

Probably.

It’s my understanding that PFS’ effects seem largely independent of levels of particular chemicals in blood. Unfortunately, you cannot get a blood test which will then give a result that says you have PFS.

The most likely situation is that people here with perfect hormone levels are suffering ill effects because the body is not able to use the chemicals it needs to maintain various processes, etc. That is to say, it’s a bit like someone calling your phone while it’s on the quietest volume and you’re half asleep. You never answer the call because you don’t realise there’s a caller waiting. The body doesn’t respond to testosterone, etc. Because it doesn’t “know” it’s there.

Ultimately, we can say this is not the avenue to explore because since way back in the forum’s history, people have been sharing blood test results, including body builders who had been tracking their levels before their post drug problems.

Unfortunately, it’s unlikely that the community will be able to work out how to fix the problem. As such, it would be more helpful for people to make sure that the world knows we exist, rather than hiding away in silence. With that, we stand a better chance of proving the existence of this problem and getting people onbosrd with both the skills and resources to make a difference.

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#4

Thank you @Greek and @Rb26dett

I understand that we might not be able to detect PFS, per se, using available lab testing methods. This is especially difficult because there’s no consensus on the underlying mechanism of PFS. For all we know, we may be looking 5 different manifestations of the disease across all the members and PFS sufferers out there.

However, we know that despite the underlying medicine, we have a set of comprehensive set of symptoms people are suffering from. And AT THE VERY LEAST, a handful of these cascading symptoms of the underlying mechanism should be detectable and verifiable by existing lab testing mechanisms?

Are we aware of any other diseases that have such debilitating effects as PFS, but not any correlating lab work?

For example, something like Cystic Fibrosis, although hard to detect, can be established through a certain collection of symptoms that are observable in lab work, even if the underlying genetic expression is not confirmed through DNA testing. And it is my understanding that until recent medicines that came out that could target the underlying genetic malfunction, the treatment was focused on mitigating the observable side effects of the disease by supplementing with mucus-clearing agents, pancreatic enzymes, and so forth.

Similarly, for something like Ulcerative Colitis and other autoimmune diseases, we don’t fully understand what causes the immune system to go haywire and attack healthy systems in the body. However, we can observe the cascading effects of the abnormal autoimmune response through bloodwork like inflammation markers and the existence of other outwardly noticeable in thsymptoms like joint pain and mouth ulcers. And the treatment is geared at either modifying/dialing back the autoimmune response, or protecting the affected systems from the attack. This is paired with further supplementation through iron anb other substances to offset the malabsorption effects like anemia.

For example, I’m diagnosed with colitis. And considering how common digestive/gut problems are here, it’s highly likely that it is related to my usage of finasteride. So, in essence I am treating my colitis which is a subset of my PFS condition. I can improve my quality of life through this method, even if the underlying mechanism of are not directly resolved. I may have to take immunosuppressants and iron supplements for years until there’s a better understanding/treatment for the underlying mechanisms of colitis & PFS.

Things like anemia might be more obvious and detectable, as blood count is one of the first things doctors check for. However, I may have never made the connection with the anemia to depleted iron levels in my blood, if I weren’t persistent enough and asked for more testing to be done. Similarly, I was having digestive issues and yellow stools. And this was dismissed as a byproduct of my colitis. But I persisted and had a pancreatic enzyme testing to be conducted in my stool. It indeed turns out my pancreatic enzymes are low, and now I have an avenue for treatment, and further investigation to improve my symptoms abdf overall health.

My point is we may have other symptoms that can be treated at a surface/symptom level as well. It may be a matter of having a deeper understanding of the observable markers most related to that subsystem.

For example, achieving some balance of the sexual hormonal levels in the blood might not relieve neurological or sexual symptoms. But this doesn’t mean other lab testing is not potentially useful. I reckon back to the “neurobiological” recovery of @thisisarealbummer. He was able get CSF testing done and confirm deficiencies in different neurosteroids. to This is most likely a cascading effect of finasteride usage, and whatever supplementation he is using is not addressing the underlying mechanism. However, it’s very valuable that he is able to find reprieve from his symptoms, even if it’s by addressing it at a symptomatic level. He has labwork to prove his deficiencies prior to supplementing. And if he can show an improvement in the deficiencies through his supplementation, this could be a potential treatment method for many people who are suffering from similar neurological sides.

And if we pair this with a more comprehensive lab work including his other markers (blood levels, sexual hormone levels, organ function, thyroid levels), and not just the neurological ones, we can begin to develop different models of how PFS is affecting us differently, even if it’s on a more surface level. And we can also develop more efficient methods of supplementation, instead of everyone randomly trying out supplements without any understanding of how it’s manipulating the various levers in their body.

I’m imagining something likthe survey, in tandem with the genetic profiling through 23andMe which is already occurring, plus a comprehensive holistic lab work.

#5

Basically your saying that we’re cooked (i.e. irreversible damage)?

#6

Not at all.

I think this is very fixable. I know it’s not irreversible because I’ve had days where all my symptoms have cleared up. I don’t think it’s easy however.

I mean no disrespect to anyone here when I say the following.

I think people who don’t have a serious, in depth understanding of the science we need to get done probably shouldn’t be theorising. If the lights went out in your house, you wouldn’t be expecting much success if you tried to make a hydro electric dam in the river nearby, and what we’re talking about here is more complicated, further abstracted from the concepts that we may generally absorb through school level study or pop culture.

Further to this, most of the theories and plans that people offer involve someone else doing something or other. There’s not really much point in offering a potential solution that ends up in someone else doing all the work.

What makes more sense is offering up the skills you have and being prepared to tell other people about what happened.

There will be many, many people affected by these drugs, but most people say nothing or even haven’t made the connection. Some don’t even tell their doctors. These are the hurdles that we can all get over. The more people that do so, the more chance we have of getting the condition recognised and the right scientists (not all scientists are equal and none of them will work for free) interested and prepared to (for money) work on our plans.

Don’t feel hopeless. But do help.

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