Yes, I assume part of your brain helps regulate T levels. Check the article below, I’ve read a lot about people with brain trauma resulting in loT
metabolism.com/tag/car-accident/
At least now we can put the stupid gene change theory to rest
Not quite:
People here have various sides. For me I can inject 250mg of TRT a week eat plenty of callories and gain 0 muscle. Before PFS I was deadlifting 200kg. So my natural t was working fine before pfs. To me this indicates androgen resistance but though some unknown path. Quiting TRT made my PFS much worse or 2 months.
AR gene change yes - thank god - but not epigenetic change. The issue is somewhere in the csf/brain , mimics a normal major depression pattern, but seems like it doesnt respond to any Antidepressants anyone has tried. So the mechanism at present is unkown, only thing we know is its not genetic thank god and is not about peripheral hormones.
I have not read the study and only know what you guys are saying about it. So I am not agreeing or disagreeing with the conspiracy theory stuff or getting involved in the never ending debate over home brew VS giving money to the foundation. Arguing about this is a complete waste of time.
But what I do know is that the following statement is not accurate as far as the majority of “PFS Victims” go.
“but had normal objectively-assessed cognitive function Testosterone, DHT, 5α-androstane-3α,17|gb-diol glucuronide, testosterone-to-DHT and androsterone glucuronide-to-etiocholanolone glucuronide ratios, and markers of peripheral androgen action, and expression levels of AR-dependent genes in skin did not differ among groups”
Clearly a majority of people who complain of these symptoms after taking a 5AR inhibitor do not have normal total, free or bio available testosterone levels. We know this because of the blood work results that we have collected on this website over the years. Also correct me if I’m wrong but did the study choose to not even mention the higher than normal estrogen levels in guys who complain of these symptoms? It seems as if the results are being written in a way to not mention the obvious altered levels of hormones we see by not addressing free testosterone, bio available testosterone or estrogen levels. It’s simply touching on testosterone levels really briefly in the above statement. I’m forced to be curious about why there is such a brief mentioning for such a significant point/factor.
It’s difficult to believe that the Harvard study ended up entirely with the small percentage of PFS guys who do not have altered hormone levels on the basic level such as total testosterone levels. Assuming that this did happen we still know that this statement does not apply to the majority of PFS suffers.
There is nothing wrong with the labs that our doctors have used to do our blood work. Our results are accurate.
I raised the same doubts but was told that men had to have testosterone levels near the top of the range to make the study valid rather than have a diverse range of levels within the study. In any case you should write to the Foundation with your concerns. Several of us have done the same thing and I encourage others to do so also because eventually a whisper becomes a scream. It’s clear from the men’s results on here that PFS reduces T levels to cause chronic side effects which lead to a lower mortality. Merck can breath a sigh of relief that a major study did not link Propecia with Low T and I think we have more chance of seeing a Unicorn take down a Bear on Wrestlemania.
I don’t quite understand this. Surely scientists have to study what “is”, rather than cherry pick to falsely define the parameters, then make a claim based on these falsely defined parameters. One of the defining things about pfs seems to be that most of us end up with testosterone at the lower end. I’d also be interested in answers to this.
Well said
Even if it was not done purposely so that they would not need to worry about explaining the clearly altered hormone levels in a majority of us, they still made the decision to study a portion of us who are clearly not the norm as far as our hormone levels go.
Are you saying that it you reported low testosterone levels that they would actually say you are not qualified to be in the study ?
A study probable will eventually find the underlining cause or causes but If a study can not find the true underlining cause or causes maybe the only way to establish PFS as being real is by doing this:
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get at least one hundred healthy guys between the ages of let’s say 25-30 years old who are at least partially bald. Tell them they are being invited to test a “new type” of hair loss drug for its effectiveness on regrowing hair. Don’t even mention possible side effects other than possible hair growth.
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Test their hormone levels to confirm that they have top of the range or at least normal total, free and bio available testosterone levels before taking the drug.
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Monitor all of them after treatment for “progress”. Wait until a small percentage of them crash who I’m sure will be sure to mention their symptoms.
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Test their hormones again. Use those results that they stumbled upon “by accident” to prove a possible side effect of 5AR inhibitors is long term altered hormone levels.
It’s cruel but sometimes this is what it takes. Obviously this study would not result in a treatment protocol but it would result in showing that PFS is “real” which based on information in other threads was more or less the point at this time anyway.
As long as the guys participating in the study do not Google 5AR inhibitor before agreeing to be in the study which most probable won’t it would probably work.
So you plan on intentionally ruining a number of people’s lives- great idea
Agree with the guy above. This part here:
is especially disgraceful. You should know better.
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I’m uncomfortably comfortable enough with it. Until a large and well established enough institution says ok “it’s real” I don’t see this ever going anywhere. Seeing that we know enough of us have altered hormones levels you would think that it would not be difficult to extablish this through the proper channels. Obviously posting our labs on this website is not enough.
I also look at it this way. If the medical community for the time being claims we don’t have long term altered hormone levels and that there is no “evidence” to suggest 5AR inhibitors can effect people for the long term on any type of physcial level than why not put the study that I propose to the test?
They can’t have it both ways. Believe me a poor attitude is not what’s making me be ok with this. My do what ever it takes attitude is what makes me be ok with this. Conclusive results through the findings of a large study from a place like Harvard that a guy had normal testosterone levels before taking the 5AR inhibitor and then did not after taking it would be enough to put tons of effort into saying ok now let’s go find out why. I really think we just need to keep in simple and focus on what we know we can prove and fill in the blanks later.
The problem with testosterone levels is that no one really knows what their level was before they discovered a problem. So a patient goes to their Dr gets a blood test then receives the result. The Dr says all normal Mr xxx because there is no before and after level to compare. The second issue is that the medical community has created this normal range to evaluate testosterone. The normal range based on UK levels is approx between 8 to 25 nmol, in the US I think it starts at around 250. When you are within the normal range then you are considered healthy and symptom free. A man can be sick with a level of 8.5 nmol but when his level drops to say 7.9 nmol the Dr can now say you have symptoms of low testosterone. This argument of being healthy anywhere within the normal range has been questioned by anti ageing Dr’s and a few hormone specialists but mainstream Dr’s are not interested. Testosterone treatment is expensive and fairly complicated so national health services are happy only to treat the worst affected. They often ignore those who maybe suffering within the bottom end of the normal range. The Dr says your range is normal you are depressed Sir. The Harvard study confirmed that men are depressed; they complied with general mainstream thinking on testosterone levels. So much for Harvard, the so-called institute of free thinkers.
How did Harvard plan to prove that propecia does or doesn’t lower a man’s testosterone level? If all men studied fell within the normal range, which they did, then nobody could have had low testosterone. A man either has low testosterone or normal range testosterone but that’s it for clinical diagnosis. If Harvard had proven that propecia lowers testosterone then all hell would have broke loose and they’d be up to their necks in Merck lawyers. I don’t believe the study was ever designed to prove that propecia could lower a man’s testosterone. Harvard knew what they were doing when they took the Foundation’s money.
For a study all we need is a medical Dr/researcher willing to prescribe propecia to men for free in return for a few simple tests completed before and during or after discontinuation of use. All the Dr has to say is they are monitoring the hormone panel as propecia alters DHT, a male hormone. In fact if all men who take propecia took a testosterone test today and another if/when they felt unwell then we would have our research or proof right there.
In the end we want to know why pfs patients have the symptoms that they do. We know that injecting men with hormones like testosterone in many cases doesn’t make the pfs patient any better. Therefore they need to research beyond hormone levels, which I gather that’s what they are trying to do by looking at receptors etc. Can the researchers find proof without running into Merck lawyers? If researchers prove that propecia affects receptor xxx will that put men off from taking propecia in the future, probably not because most couldn’t relate to something like receptor xxx. Instead they are thinking about work, girlfriend, gym etc so we might get our research after all.
I don’t understand how lawyers come into it. Can they be sued if they discover fin causes PFS ?
Can they be sued I don’t know but I expect they would be scrutinized inorder to find a weakness. No big Corp is going to sit back and do nothing, they have access to top lawyers, politicians etc. I’ve read about one Corp getting pizza listed as a vegetable with the help of a US senator so they could sell their food in schools, so nothing is impossible.
Andy I agree. They need to do a simple study that simply shows 5Ar inhibitors can lower your total and free testosterone and increase your SHBG and estrogen levels. You nailed it with how we don’t have pre labs to go by. Of the three years I have been on these websites I have found one guy who had pre PFS hormone readings and his clearly showed even two years post PFS his total and free T was lower and his shbg and estrogen was higher that what his norm was prior to taking the DHT inhibitor.
But what we need to do is establish this via a large scale study where everyone taking the DHT inhibitor takes pre labs to establish what their baseline is. As far as how to determine what “normal” readings are is easy. It’s what’s normal for that guy. So in my mind establishing PFS as a “real” condition is as easy as doing this:
- run basic hormonal panel that checks for total T, free T, bio available T, SHBG and estrogen levels.
- have them take a DHT inhibitor … I already explained how we could do this and yea I know it’s wrong but smart.
- wait until the ones come forward with weird PFS type symptoms.
4)run their labs again
Bang we can now prove PFS is real . Than from their several large institutions (more than we have currently) will dig deeper now that they have something to “go on” other than guys on the internet. Again what everyone was looking forward to with the Harvard study was mainly proving PFS is real anyway. That’s why I think we should focus on what we can prove first. We don’t want Baylor coming to the same conclusion as this is mental because than we are at risk of no other large enough to take seriously by medical community study taking place.
Obviously it’s awesome that we are still looking at the possibility of Baylor finding the true issue at play but in the mean time why not also try to take a look at what we know would work as far as showing pfs is real. The defense is as easy as saying DHT inhibtiors have been shown by former and recent studies to be safe so that’s why a study was done that required a bunch of people to take them.
So the study basically found nothing? Wow, at this point I’ll lose all my muscle in the next 2 years and die.
After reading this things seem even further out of reach in the way of medical help.
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I also wouldn’t totally discard this theory.
Bhasin was never able to complete his previous study. What a mild conclusion the harvard study came to.
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Didn’t Harvard have a study saying we were all mentally ill? And this is another study done by them showing us how important 5AR is? Makes no sense!
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