I’m in this camp too. I feel very grateful for everybody here who is able to take the time and effort to make sense of the puzzle.
I’d appreciate to see some cursory statistics as well. The side effects that people report in their ‘member stories’ section rarely corresponds with their current condition.
I definitely have improved in the last 4 years since I have this problem. Virtually no improvement in the first 3 years (actually, messing around with androgens even made me much worse), but since about a year things started to move in the right direction. Specially the last 2 months have been good to me in all areas. So there seems to be hope, specially if you don’t mess around with hormones too much and let your body sort this out by itself (having said this, reasonable androgen levels may be beneficial). However, I don’t feel a recovery thread is warranted yet. My main problem these days is that raising androgen levels is still very problematic for me. I can have a rock solid erection lately, albeit with low sensitivity. If I orgasm (thereby raising androgens, specially if I do it more than once), I typically will have problems in all areas for many days to come. Nevertheless, this hypersensitivity to androgens has gotten better too over time, and I hope it will keep on normalizing. Also, make sure you get enough quality sleep, eat healthy and try to avoid stress. Just commons sense things I suppose.
That gives me a lot of hope Awor. I am fiddling with thyroid and cortisol hormones right now but after this I am not wasting anymore money on fancy supplements or medicines.
High quality fish/ krill oil, magnesium, probiotics and zinc - and trying to get on with my life as best as I can.
My sleep did normalize very well for a period but over the last 2 months it has gone to constant waking up again. I would love to try GHB to get deep restful sleep but it’s very hard to get.
I think Mew should add few more fields in registration page like
Telephone number
alternate telephone ( father , mother etc)
alternate email contact (father, mother,any body he trusts etc)
They should be optional as some people many not like to give these detail , nevertheless we will have some people with real contacts. If it had happened some years back , we would be still in contact with them and would know how they are doing now.
it’s good to hear that some of you feel better sometimes for a while. Unfortunately, for me the I have never had any improvement in my situation for the last 8 years. I think I have been hit very hard by the drug.
awor,
you said, that you are feeling much better since one year, especially since two months. Have you taken any meds/supps in order to get to this improved state? Or have you just recovered naturally. Can you tell me how old you are? I am 31 and have problems since I am 23 years old.
One of the things that scares me most is the lack of penile sensitivity. I do not feel my penis (in any situation - in everyday live, when trying to masturbating or when trying to have sex).
I only do low dose TRT (70mg/every 2 weeks) - this dose I found by feeling and not through blood tests. Besides that, I think that my IV Procaine therapy helped, but I can’t say so for sure. Otherwise, I have not done anything else lately*. I avoid orgasm as much as I can stand it (because it raises androgens), and avoid heavy excercise for the same reason. Try to avoid stress and get enough sleep. Also, quitting AD medication about 6 months ago helped improve the situation in all areas. Penile sensitivity is still a major problem. Libido is on and off. Mental sides are a LOT better. Physical sides are at least stable and improving somewhat. Had 4-5 orgasms about a week ago and now I’m not doing as good anymore. I’m sure it will come back, just have to keep calm for a while again.
Again, I am not by any measure claiming that I have recovered. I am just saying that I have had progress, and hope that it will continue.
awor,
You were messing around with sex hormones. If you had “messed around” with the other hormones, you might have improved. You say that nobody recovers by messing with hormones. This is a wrong statement. It is true that nobody recovers by acting SOLELY on SEX hormones (T, DHT, taking aromatase inhibitors, etc…). But people have improved or recovered by acting on cortisol and thyroid hormones only, or in conjunction with sex hormones. The fact that you are not acknowledging this is simply unacceptable. The fact that you are so focused on a theory and ignore people’s recoveries just because they don’t fit is, again, simply unacceptable. See examples below:
JN: he has been messing with his sex hormones first with no stable results. Only after addressing thyroid and adrenal issues, could he get good results.
Dury: he addressed thyroid issues first. He apparently didn’t have adrenal problems, otherwise he would have got worse by messing with his thyroid first. Finally, he did a quick restart on clomid, which worked. He defines himself totally recovered after a few months off clomid.
robocopp from steirodology.com: his T, which was initially 250, increased to 400 by taking 150-200 mcg T4. Then, it increased to 700 by taking Dexamethasone.
(his post is here: steroidology.com/forum/testosterone-replacement-therapy/585761-finasteride-induced-serious-problems.html)
correiovip: improved a lot/recovered by taking prednisone “5 days on, 25 days off” for a year
Given these 4 examples, how can you still be sure that it’s not a hormonal problem?
I don’t mean to be disrespectful. I have tons of respects for your involvement on the academic side of PFS. But while everybody is free to follow their favorite theory, nobody can deliberately choose to ignore real facts.
I’m not saying no one has recovered. People have tried all kind of things and a few have had some recovery from a vast array of substances including antibiotics and GHB. Now go figure. Do we have a common denominator here or are these recoveries that would have happened anyhow? I don’t know. Why don’t you start a thread, similar to the “Post your experience” one about thyroid hormones or whatever therapies that you believe helped these people. I find those quite useful to get an overview of what is helping people and what is not.
Whatever the case, the hormonal effects that you are seeing (androgens, thyroids, vitamin D, adiol-g, etc) are likely the result of our problem and not the root cause. If you look at ALL the evidence, there simply is no way you can explain things like people getting worse with androgen supplementation, increased hair loss, increased body hair, muscle wasting, hypogonadism, penile shrinkage, suicidal depression, etc. with a thyroid problem. But I really don’t want to start a theory debate with you here. Rather, my focus is to get this problem into a lab. And a first step in this direction is going to happen real soon. In the mean time you are, of course, free to believe anything you want.
Awor - “My focus is to get this to a lab”
YES, THANK YOU! THIS IS WHY WE ARE ALL HERE !!
We need to focus on- Public awareness, interest of a competent labratory, and funding. In that order. And everyone on this board can help toward those goals. We losing sight of the forest through the trees.
Hi guys,
Sorry to hijack this thread, but I was wondering, UK20 and many others have mentioned that they supplement zinc and I am a little unclear on the logic behind this. I realize that zinc inhibits the enzyme aromatase (and therefore lowers estrogen and increases T) but like finesteride, isn’t zinc also a 5 alpha reductase inhibitor? Theoretically, by taking high doses of zinc, are we not recreating what FIN does?
Any clarification would be great.
Thanks in advance,
JayV
Do you guys honestly believe that this will ever lead to a cure though?
Would the medical industry really give a shit about us?
Personally I think we have to get out of this on our own, or nothing.
Because it’s a very weak 5AR inhibitor and a decently potent aromatase inhibitor.
If you are deficient in zinc you could find that addressing this could boost your T levels by approximately 30%. This is what my reading has suggested.
Dr Shippen was/is a big advocate of zinc treatment as a first base.
The research community is somewhat different from the phrama industry. Admittedly, not completely unrelated. We all know Merck would prefer we would all just shoot ourselves.
If you can perform gene micro array analysis then why havnt you spoke up? 
We have some good theories that have been developed with the input of scientific and medical professionals. There is a bit more going on behind the scenes than we all know. But, we won’t get answers until we can look into the microbiology going on. Is it a gene expression problem? Where along the path is the issue? Transcripiton? Are these things normal, do they play a major or minor role or no role at all? There are tests for these things. If all is fine we rule it out and move on. I don’t have the aptitude for this stuff like Mew, Awor, Kaz, 19, Oscar, Mario etc. But, I’ve given some interviews with some pretty prominent publications using my real name. Hopefully something develops there soon. We all need to do what we can.
The point is we can’t get out of this on our own. But, you’re right that we need to help ourselves get out of this mess by having the research done. The way to that goal is to keep this issue in the limelight to the best of our ability.
ps- @Mens Rea- I see Shippen and he’s never mentioned “zinc treatment” to me.
I don’t think it’s pointless aiming to get research done, I just don’t think it will ever lead to anything, unless in 20-30 years time PFS becomes some sort of epidemic. I have huge respect to those of you who are pushing this with the science community and media.
I mean, what’s the aim? to get research done and hopefully someone finds a cure?
I think it’s either natural recovery or medical treatment by a doctor/ self treatment or nothing. I’m willing to try anything that might help me before I off myself.
Im not surprised. Anyone in bad enough situation to go to him will likely be well past this avenue, anyway.
It’s contained in his book i do believe.
Either way it hasn’t did much for me but has helped various guys myself and Enden have recommended it to on hairlosstalk forum, so it definately can be useful.
I think it’s either natural recovery or medical treatment by a doctor/ self treatment or nothing. I’m willing to try anything that might help me before I off myself.
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Catch a grip friend, you have minor sides compared to most. Your youth is no excuse, annon1 and JN to name two off the top of my head had COMPLETE IMPOTENCE at your age. Stop having digs at me when at least I am a desperate case of PFS, and actually moan about it less than you. If i ever got to your point I would be delirious and spending every night out clubbing and/or screwing hookers.
And, obviously, we can’t solve this ourselves. Studies will surely come with more media attention and the lawsuits. Plus, we need to be better ORGANISED so that guys who disappear after a while, not recovered but just resigned to trying to live their lives without thikning about this all the time, can be easily contacted and we can put together a strong pressure group.
A research company would have far more resources than any doc in private practice. Our problem is way beyond that. We need to see the common microbiology behind this. No offense, but I’m just dumbfounded we have guys on the board who do not understand how huge this is for us. I think it’s very reasonable to be cautiously optimistic for the first time in a long time when Awor states he is close to the “first step” toward that goal.
Fair enough. When there is any research or anymore media coverage which I can get involved in from the UK then believe me, I will get involved.
In the meantime I think it would be hugely beneficial if we had two sticky threads:
outlining what people have recovered with
a list of internet sources for pharmaceuticals, i.e. cialis/ viagra
Oh and luckfax, fuck off, as it’s been mentioned before, this isn’t about who has worse side effects and either way mine are pretty damn severe. I can assure you that you wouldn’t be delirious, just because I have had some fluctuations doesn’t mean I am not a bad case - I would go as far as to say I could well be worse than you for all you know.
That’s in part what the “post your experience” threads are for. Users can make more of these, as they see fit to survey specific therapy attempts.
One of the things I have on my todo list is to create a web based survey to generally find out how people are doing, what helped them and what not. I would really love to compile a statistical profile of the people in this forum. I already have all the infrastructure in place to do this, but just haven’t found the time yet to complete the work. I have also not put it on prio 1 because I find the lack of response to some of my other survey questions (such as the cancer or TRT one) very disappointing. I would hate to spend a lot of time setting up and professionally validating a survey and then only have a dozen responses.