My Story-Please Help

[Bills15]

Where are you from (country)? USA (Chicago)

1. How did you find this forum (Google search – if so, what search terms? Via link from a forum or website – if so, what page? Other?) Google Search, on the heels of experiencing serious side effects.

2. What is your current age, height, weight? 24, 6’, 195 Lbs.

3. Do you excercise regularly? If so, what type of excercise? Cardio 5-7 times a month.

4. What type of diet do you eat (vegetarian, meat eater, raw, fast-food/organic healthy)? Everything, but have been trying to eat healthier lately.

5. Why did you take Finasteride (hair loss, BPH, other)? Hair Loss

6. For how long did you take Finasteride (weeks/months/years)? 6 months.

7. How old were you, and WHEN (date) did you start Finasteride? 23 and June 9th 2014.

8. How old were you when you quit, and WHEN (date) did you quit? 24 and December 4th, 2014

9. How did you quit (cold turkey or taper off)? I stopped briefly 8 days prior to Decemebr 4th, but after convincing myself this was all in my head on the evening of December 3rd, 2014, I took one more pill which would prove to be my last as my erection was not as strong the following day after that last pill.

10. What type of Finasteride did you use – Propecia, Proscar, Fincar or other generic? Generic

11. What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)? 1mg/day

12. How long into your use of Finasteride did you notice the onset of side effects? I noticed softer erections basically since day one, but attributed it to stress and lack of sexual relations in general. The weekend of November 22nd was the first time I experienced what I would consider extreme sexual and mental side effects.

13. What side effects did you experience while on the drug that have yet to resolve since discontinuation?

Put an X beside all that apply:

Sexual
[x] Loss of Libido / Sex Drive
[ ] Erectile Dysfunction
[ ] Complete Impotence
[x ] Loss of Morning Erections
[x ] Loss of Spontaneous Erections
[ ] Loss of Nocturnal Erections
[ ] Watery Ejaculate
[x ] Reduced Ejaculate
[ ] Inability to Ejaculate / Orgasm
[x ] Reduced Sperm Count / Motility

Mental
[x] Emotional Blunting / Emotionally Flat
[x ] Difficulty Focusing / Concentrating
[x ] Confusion
[x ] Memory Loss / Forgetfullness
[x ] Stumbling over Words / Losing Train of Thought
[x ] Slurring of Speech
[x ] Lack of Motivation / Feeling Passive / Complacency
[x ] Extreme Anxiety / Panic Attacks
[x ] Severe Depression / Melancholy
[ ] Suicidal Thoughts

Physical
[x ] Penile Tissue Changes (narrowing, shrinkage, wrinkled)
[ ] Penis curvature / rotation on axis
[x ] Testicular Pain
[x ] Testicular Shrinkage / Loss of Fullness
[x ] Genital numbness / sensitivity decrease
[ ] Weight Gain
[ ] Gynecomastia (male breasts)
[ ] Muscle Wastage
[x] Muscle Weakness
[ ] Joint Pain
[ ] Dry / Dark Circles under eyes

Misc
[ ] Prostate pain
[x ] Persistent Fatigue / Exhaustion
[ ] Stomach Pains / Digestion Problems
[ ] Constipation / “Poo Pellets”
[x ] Vision - Acuity Decrease / Blurriness
[ ] Increased hair loss
[x ] Frequent urination
[ ] Lowered body temperature

[ ] Other (please explain)

14. What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug? Aside from eating as health as possible and reducing stress, none.

15. If you have pre or post-Finasteride bloodtests, what hormonal changes have you encountered since discontinuing the drug (pls post your test results in the “Blood Tests” section and link to them in your post)?

16. Anything not listed in the above questions you’d like to share about your experience with Finasteride?

17. Tell us your story, in your own words, about your Finasteride usage and side effects experienced while on/off the drug.

I stopped taking the Drug approx. 6 months after starting due to a wave of serious side effects, many of which have been so adequately put into words by the members of this forum (Brain Fog, Anxiety/Depression, Loss of libido/loss of drive in general as far as getting work done, socializing, basically anything that doesn’t involve sitting around sulking).

Today being 12/23/2014, I have been off the drug for just under 3 weeks. I believe I have progressed to a certain degree from the symptoms that prompted me to stop the drug, but any progress is short lived (for a couple hours or so), and sitting here today I am just as scared and concerned as I was day 1 off of the drug. My symptoms by nature are a bit extract but as I said before, much of what is posted on here perfectly describes how I feel.

I have been “trying” to live the healthiest lifestyle possible per the advice in this forum, and I have noticed marginal improvements (albeit short lived), when I am at my healthiest. I am praying that I have not felt the full rush of DHT into my body yet and (that these hourly spurts of improvement are not the full rush of DHT), and that I am on the tail end of condition improvement time (like I said has just about been three weeks), and things will clear up in a week or so. I did however get my blood work done very shortly after stopping the drug ( 3 days after, when symptoms were at their worst) and received some pretty worrying results:

----Testosterone, Serum(348-1197)- 540
----Prolactin(4.0-15.2) 8.8
----LH(1.7-8.6) 5.5
----FSH(1.5-12.4) 1.0 -->This is the most worrisome of all the results due to my limited understanding of Low PH levels and how they relate to Pituitary Disorders. My doctor assured me not worry about these numbers now and that they may only be an issue when trying to have a child. I am sure this is somewhat true but with Finns documented affects on the Pituitary gland, I of course have further reason for caution.
----TSH(0.450-4.500)-2.060
----T4,Free(Direct)(0.82-1.77)-1.13

I have done my best to battle this issue both mentally and spiritually, however yet to get even close to fully past it. Any thoughts/input into my test results or recovery timeline as it stands now, would very be much appreciated. Thank you,

[pvdl]

There is no recovery timeline. Some members improve over time and some worsen over time.

As of now there is also no known cure. Especially hormonal replacement has been tried and it failed for propeciahelp members.
This leads one of the most knowledgable posters awor to assume that we are suffering from adrogen insensitivity possibly caused by epigentic changes induced by finasteride. Even though this theory seems most plausible at the current stage, it still has to be tested out.

The PFS foundation that exists since 2012 is doing stellar work in getting researchers interested in our ailment. However it is not getting the support of this community that it deserves.

Your best bets are:

1. Dont take more medications, as for most people it worsens their situation.
2. Dont jump on recovery bandwagons. Know that these have existed for years and that they are distracting from the real path forward: The foundation and scientific studies by professionals. Also appreciate that there are a lot of unstable people on here and a fair amount of Messiahs who claim to know of some cure (JustQuitDut for example).
3. Continue on living your normal live, with the exception of making it a goal to donate monthly to the foundation and to participate in studies .
4. Realize that living like a health nut and workouts wont cure you of this ailment. Many have tried an failed. The only common element of people recovering is time passing. Some have gotten better after 2 years, 3 years and 5 years. Some dont.

Below are two posts that are important for newcomers, posted by the modertor awor:

@awor

@Chrisis

I’m currently speaking to four men who claim to be at various stages of recovery from PFS. One is at almost 100%, another around 70-80%. In addition, if there is no solution to the problem, why is there a “Recoveries” section on this forum?

I think you misunderstood me. I am not saying that no one has recovered. My point is, that there is no general solution to this atm. I think this is pretty obvious, or we wouldn’t all be sitting here. Just look at what is going on in this place. Yes, people do recover - fortunately. Some believe that their body just healed with time, while others believe that XYZ therapy did it to them. The ones that believe that their XYZ cocktail got them out of this mess will start their “I found THE solution” thread.

Next, everybody will then jump onto their recovery band wagon and try to reproduce the success, which never materializes for any real number of therapy followers. The recovered guy will then typically try to cook up some theory as to why his therapy is working and what others need to do to make it work. People then start getting all worked up and everybody runs out to buy whatever the therapy calls for - supplements, stem cells, trips to foreign places, tons of assays, you name it. Then, eventually, after hundreds of posts, thousands of dollars down the drain, reality starts to set in as people start realizing that no one is really recovering except the original guy that started the thread. This recovery carousel has been going around many times in the past decade, is going nowhere, but people nevertheless eagerly keep jumping on it.

As much as I can understand that people desperately want to believe that they just need to take the right combination of supplements, in the right dosage (best carefully tuned with a ton of assays) to get out of this mess - it is exactly this hope that is leading many down the wrong path. By wrong path I mean that people are repeating the same nonsensical approach over and over and expecting a different result. Albert Einstein once defined this kind of behavior as insanity.

Again, don’t get me wrong. I am not against people trying things and trying to recover, of course not. Where I do have a serious problem is when everybody is sitting on the damn insanity carousel while we are trying to recruit a fricking 25 guys for a massively expensive molecular level study, which is broadly looking at why our cells are not doing what they are supposed to any longer. This kind of information would be vitally important to allow us to really start targeting and tuning those therapy cocktails. This kind of information would allow us to become infinitely more effective. But it is not happening (fast enough) in large part because everybody is so busy following the recovery cook books and pseudo-science of i numerous recovery Messiahs on this site.

In short, people are putting all their eggs in a basket with a very poor track record. The Foundation put a lot of effort into creating additional options for us to pursue, which are not getting the support from this community that they deserve. Because of this, the community is not getting back the information that it would need to start developing more effective therapies, that work not only for one but for many. In other words, we are wasting precious time.

Do you now get my point?

AND

@awor

[Size=4]This post is to the address of the increasingly loud advocates of the 5AR2 deficiency theory and Adiol-G[/size]

This whole 5AR deficiency theory is really neat. After all, we all know that finasteride permanently inhibits the 5AR type 2 enzyme. It just got blown away and never came back. Real easy for everyone to understand, no complicated science involved here. We just need to come up with lots of good research about what symptoms occur when 5AR is inhibited and we’ve got the explanation to (almost) everything. With low Adiol-G we’ve even got a smoking gun. The fix to this mess is real easy too: all we need to do is to raise Adiol-G (??). This, of course, we can easily do by supplementing DHT. And anything that comes up that doesn’t fit the picture will just get ignored. Or even better, we’ll make up some pseudo-scientific reason why things are the way they are (we can, for example, blame estrogen or other hormones). After all, we don’t want to poop this party. It’s just too good to be true. One of the most puzzling medical phenomenons in the last decade got solved by a bunch of laymen armed with nothing more than google and an internet forum.

[Size=4]Do you guys seriously believe it’s that easy? Come on, get real. [/size]

[Size=4]“The human brain is always trying to determine why things happen, and when the reason is not clear, we tend to make up some pretty bizarre explanations.”[/size]

Brian Cronk, professor of psychology at Missouri Western State University

Of particular note is that the most prominent voices of this theory have no personal experience whatsoever in supplementing androgens, particularly not DHT. Otherwise, they would have instantly realized from the reaction of their bodies, that their theory can impossibly be true. You actually don’t need to do any complicated testing to verify this, you can just plain and simply get yourself a tube of Andractim and rub it in. To those addressed: You can’t replace experience with google (or with testing for that matter). This whole thing reminds me a little of sex in early junior high school. Everybody is talking about it, everybody thinks they know what they are talking about, and practically nobody is actually doing it. Most guys back then thought they knew what sex was all about just by reading the magazines.

[Size=4]If 5ar were damaged, supplementing DHT should have a massive positive effect. This is not the case, not even in combination with TRT and aromatase inhibitors. To the 5AR deficiency crowd: Why are you ignoring this fact and making up excuses to justify this? My guess is because you are either in denial mode and/or haven’t tried any of this yourself.
[/size]
All those who have read my posts may recall that I am dead set against supplementing DHT. But maybe it will take a couple of guys to try it out, to really understand what they’ve been talking about. Hopefully these guys will then truthfully report their experience back to the forum. Once they do that, I guarantee you that this 5AR deficiency theory will be buried for good. To facility this, I am prepared to give away my stock of Andractim DHT gel for free. Alternatively, I can provide you with a secure, cheap, legal and reliable source to buy the stuff mail order. Just send me a pm if you are so inclined. And to stay safe, don’t take it longer than a week (unless you get a really good reaction to it).

But why is it such a problem to get a little high on Adiol-G? The main issue I have with the increasingly loud 5AR deficiency voices in this place is that it is distracting my efforts to get a scientist interested in researching [Size=4]the most LIKELY TRUE cause of our problem, namely some form of androgen insensitivity[/size] (receptor, gene expression, whatever). The current state of this forum hurts my credibility when I’m talking with these people. Right now, if I point them to this place they’ll think we’re a bunch of nut cases. Everybody seems to have their own pet theory. Everybody is diagnosing everyone and too many people around here seem to think that they are world class endocrinologists.

To make things worse, the 5AR deficiency theory even makes sense at first sight. But from personal experience with supplementing DHT and reflecting the questions below, I know it’s way off the mark (no matter what Adiol-G says). Accordingly, I DO NOT want potential scientist candidates to get the wrong idea and start pursuing a dead end route. It would also be REAL helpful if we could get a little more focused, all get our act together and stand behind ONE theory. That would make it so much easier to get some funds together to pay for some initial science involvement and get things going. Just do the maths: Everytime a new guy hits this forum a collective voice advises him to get hundereds of dollars worth of blood testing done. This is COMPLETELY USELESS. Has blood testing ever uncovered and solved anyone’s problem around here? No? Why can’t we seem to learn in that respect? Imagine if this money would instead have been invested in a fund. [Size=4]We could easily have USD 500K worth of money together by now and you can be sure that we would all be a lot further than we are now.[/size]

Despite my slightly aggressive and sarcastic tone (sorry, but it seems like a normal one doesn’t seem to have any effect on you guys), I fully understand where you’re coming from because I’ve been there myself. When I first came to this forum, I initially used to think exactly like the 5AR deficiency guys: Finasteride killed my 5AR because that’s what it does. It’s a no-brainer. The logical consequence was to supplement DHT (Andractim, Proviron). So that’s what I did. I even considered Masteron. But the negative reaction I got from Proviron and Andractim eventually convinced me not to do it. Fair enough, but once everybody has been through their own 5AR deficiency loop it is now high time to move on.

[Size=4]For all those that are convinced that the root cause of our problem is 5AR type 2 deficiency, take a minute to think about following questions:[/size]

1. Why does the problem start becoming really serious only after roughly 2-3 weeks OFF of finasteride? Finasteride has substantially cleared out of our system by then and could not have massively killed more 5AR at that point! So why did we crash only weeks later?

2. Our body regenerates enzymes to replace what gets eliminated. If you believe that we have become permanently 5AR2 deficient, you are basically saying that the regeneration of 5AR2 enzyme has permanently failed. By what mechanism do you propose that finasteride is supposed to suppress the regeneration of this enzyme for good? Why would this permanent suppression only happen after years in some cases?

There is no documented scientific rationale behind a chemical like finasteride permanently inhibiting the reproduction of an enzyme. This is in sharp contrast with the receptor desensitization theory, which has scientific backing for the basic fact that:

[Size=4]…it is becoming increasingly apparent that chemicals can cause changes in gene expression that persist long after exposure has ceased. Here we present the hypothesis that commonly-used pharmaceutical drugs can cause such persistent epigenetic changes.[/size]

sciencedirect.com/science?_o … 2ffe570e2f

Doesn’t this statement ring any bells?

1. Finasteride inhibited DHT production by over 70% while on it. Why do many men, even in this forum, have no problem with this level of inhibition for years and then all of the sudden crash? Do you seriously think that even more 5AR gets inhibited while off the drug? Do you have any idea how low your Adiol-G must have been while on fin and you were still feeling great?

2. Some guys are in this mess after taking only 3 pills. I only took around 30. If you believe that prostate shrinkage is a main mechanism behind this, do you really think it’s realistic that such a small number of pills shrunk our prostates beyond repair?

3. How do you explain the variability in symptoms that many of us are experiencing if the assumption is that 5AR is permanently damaged?

4. If our 5AR is presumably dead, why does supplementation of DHT either get no response or even makes things worse? No, it is NOT estrogen! Before you claim this, get your estrogens tested before and after supplementing DHT. Don’t fool yourself. And I am not talking about short term improvements, I am talking continuous supplementation at normal doses for at least 2 months.

5. Why is everybody so sure that Adiol-G needs to be in the highest range in order to be able to get an errection? Finsucks asked this question once in the Adio-G thread. Since this thought doesn’t fit in the picture he just got ignored.

6. Why are some guys going around this forum, relentlessly claiming that everyone’s Adiol-G tests are low, despite the fact that this is not true.

• What about maracatu with his 76.6% of reference range result?
• What about finsucks with his 51.6% of reference range result?

Why are some people ignoring this? Does repeating the same BS over and over again make it any more true?

1. Why aren’t the Adiol-G figures in the “Database” correlated with Testosterone values (from same date)? Since Adiol-G is metabolized from DHT and DHT from Testosterone, don’t you think that this is relevant? A lot of guys around here seem to have low T. That means they should also have low DHT. How then can you expect to find high Adiol-G figures??

[Size=4]Low testosterone is likely to result in low Adiol-G. So getting all excited about low Adiol-G figures without matching testosterone values is useless. I posted about this too. It doesn’t fit, so it got ignored.[/size]

1. If 5AR2 is supposed to be dead, how can you justify that jairus increased his Adiol-G by over 23% with testogel supplementation??

2. Why is 3a-Adiol-G supposed to be the gold standard to measure 5AR type 2 activity when its formation depends on the throughput of another enzyme - 3a-HSD - which is variable by nature, subject to gene regulation and also depends on other genetic traits?

Have you ever considered that enzymes actually have a regulatory function and are not just processing substrate A to substrate B at a constant rate? What if the body actually thinks that there is too little DHT around because it has become insensitive to androgens and has therefore downregulated 3a-HSD? This is just to illustrate that there can be slightly more sophisticated reasons as to why many have low 3a-Adiol-G than just simply because of low DHT / 5AR2 deficiency.

Additionally, DHT seems to get mainly metabolized to Adiol 17-G. What do you say about that? (finsucks found this one out, of course his post on the subject just got ignored)

Preferential Metabolism of Dihydrotestosterone to Androstanediol 17-Glucuronide in Rat Prostate
endo.endojournals.org/cgi/conten … 123/6/2788

1. Why do some members experience massive hair loss after quitting Finasteride? Isn’t hair loss supposed to be mediated by DHT? Isn’t that why we took a DHT inhibiting drug in the first place? I am loosing hair at a rate you can’t imagine. I’ve lost more hair in the past 18 months than I have in the previous 18 years. I am growing thicker body hair all over like never before. What is the hormone that mediates body hair growth? You got it.

[Size=4]Argument #1: Unless you are on chemotherapy or have another serious illness, it is highly unlikely to have hair loss if 5AR2 is supposed to be dead. Just because not everybody is experiencing hair loss post fin, the pro 5AR deficiency folks have decided to just ignore this one. [/size]

1. Are you sure that a “simple” 5AR2 deficiency alone can cause such a massive health damage like some of us are experiencing? Don’t you think you are dismissing the role of testosterone and 5AR type 1 a little too quick?

[Size=4]Argument #2[/size]: The 5AR deficiency folks are talking like DHT produced by 5AR2 is the only androgen hormone that counts. What about testosterone? testosterone actives the androgen receptors just like DHT does, only at a lower rate. It has a number of positive effects, that are just simply being ignored (see below). And what about 5AR type 1 or circulating DHT for that matter? Are you sure all this has no importance? Read this:

[Size=4]it is likely that the role for type 2 isoenzyme is mainly restricted to virilization of the external genitalia in the embryo (2). In contrast, the type 1 isoenzyme may take over DHT production after puberty and thus contribute to a continuous synthesis of DHT after birth and in later life.[/size]

eje-online.org/cgi/content/full/152/6/875

1. [Size=4]Finally, the most important argument to arrest the 5AR deficiency theory, and this one CANNOT BE IGNORED: Why do some members have muscle wasting even though DHT is not necessary for muscle development? Don’t believe it? Read this:[/size]

• Anabolic effects of testosterone are preserved during inhibition of 5alpha-reductase.
  ncbi.nlm.nih.gov/pubmed/1748 … inalpos=13

• Inhibition of 5alpha-reductase blocks prostate effects of testosterone without blocking anabolic effects.
  T caused a significant 16% decrease in subcutaneous fat that was not blocked by MK-434 (another 5AR type 2 inhibitor).

Testosterone alone reduces fat? Does that ring any bells? Why then are some guys on TRT (like me) still putting on midsection fat (despite top class diet)?

• This study demonstrates that 5alpha-reductase inhibitors may block the undesirable effects of T on the prostate, without blocking the desirable anabolic effects of T on muscle, bone, and fat.
  ncbi.nlm.nih.gov/pubmed/1536 … inalpos=23

• Testosterone increases lean body mass and decreases fat mass in a dose- and concentration-dependent fashion.
  ncbi.nlm.nih.gov/pubmed/1535 … inalpos=24

[Size=4]To summarize[/size]

I can fully appreciate that everyone in this place is desperate to find a solution. I can also understand that the whole androgen receptor desensitization theory is complex and not everyone has the patience and interest to try and understand it. But I increasingly do not have any understanding for people that sit around theoretizing all day, without having tried any of this stuff themselves, specially if they are ignoring important facts. If we are not reacting to androgens in the way that we should be, we have become androgen insensitive. Period. There is no need or benefit to invent other reasons like 5AR deficiency, however neat the theory might seem. And repeating the same rubbish day in day out is not going to make it any more true, even if everyone starts believing it because it is repeated so often.

It is going to take our full and undivided energy to get ahead with this problem. We are not going to make it if we are all pulling in different directions. I can guarantee you that we will all still be sitting here in the same place in ten years if we don’t start getting coordinated. It may seem tempting at first sight to follow a path that seems easy to understand and quick to travel. But if it leads to a dead end, like the 5AR deficiency/Adiol-G story, then it’s just a waste of time.

Let me make an analogy for you. You’re afoot on a road in the middle of a desert and arrive at an intersection. If you turn right, you only need to travel one mile. Unfortunately, the short road will only lead you to a sand pit. If you turn left, you will have to walk a hundred miles and might not make it. But the reward is a hotel with food and drink. You maybe will still be in the desert, but at least you’ll be one step further.

We need to start traveling that long road TOGETHER. If we’re together on this and one falls, we can help him to keep on going. Maybe we can all chip in and buy a car in order to travel the road faster. This will only work if we all want to go in the same direction. So the first thing we have to achieve is consensus. No testing or googling in this world is going to show us the way. We need more people like JN with the balls to actually try this stuff. Get yourself a tube of Andractim and try it for 2 or max. 3 days. Send me a pm to get the source. Talk this over with your doctor. A quick test won’t kill you and I guarantee that it will make you see clearer in this matter. I am not endorsing long term use or telling you to start a therapy with this stuff. Just give it a quick try. Accept what your body is telling you and report it back to THIS THREAD:

viewtopic.php?p=18718#18718

If you think that you’re going to come up with some hormonal excuse if doesn’t work, get those hormones that you have in mind assayed before, during and after taking Andractim.

[Size=4]Let’s make 2010 a more successful year for everyone. This time hopefully TOGETHER and heading in the same direction.
[/size]
Thank you for the time you have taken to read this post.

All the best to everyone.

awor

Links
You can check out my experience with supplementing androgens here: viewtopic.php?t=3250#18792

Here is my member story: viewtopic.php?t=757

Find out more about androgen insensitivity: viewtopic.php?t=2216

[/quote]

[JustQuitDut]

Contact Dr Goldstein, he has some very effective hormonal treatments for PFS, towm8er is a user on here who has recovered with hormonal treatments from Dr Goldstein. I have also reversed PFS with hormonal treatments from my anti-aging doctor, there are varying levels of PFS. Dr Goldstein seems to be the best bet, I suggest you contact towm8er, he has a good recovery story.

[Gelhead]

Best to follow the advice of awor which is posted above by pvdl. Do not entertain the postings of user JustQuitDut, who has advocated eating large amounts of raw asparagus as a treatment (!). He is an example of a recovery messiah as per awor’s post.