Read this dude’s stuff on the yahoo board and it was always like ‘I can feel recovery round the corner etc’ so not surprised he got carried away. But if you can have sex again after a decade that’s pretty significant. Maybe if the dose is upped he could improve more.
HGH needs to be investigated more, trial and error is how we progress. Don’t like some of the sides though, I don’t wanna look like cro magnon man!
Finasteride sufferers society is a good idea as is a lawsuit.
Hey chaps,
Yes, you deserve answers and you deserve me to be candidly honest. It looks like I tend to delude myself. Most of the time. And it’s not fair on you or me.
The last 24 hours, I have realised I am stuck.
I have made a recovery of sorts, though.
Please forgive me. I only want the best for me and for you, and having an insanely driving positive attitude and maintaining hope (often unrealistically) has allowed me to make 1. A recovery of sorts 2. Probably a near normal life 3. A girlfriend.
I won’t rant.
My side-effects now are
It seems that DHT does not have it’s effect. Yes, there is something seriously wrong with me. ITHAPPENS- your analysis is spot on.
I think some of my previous posts need to be deleted as I feel embarrassed about them.
I have lots of energy in the day, I feel good about myself, I win the sprints at footy, I perform at work. I have never had brain fog.
TRT helped me function reasonably ok. Helped erections only slightly (fuck, why am I only able to say this in hindsight)
HGH helped much more than TRT at everything and especially with physical stamina, making me lean and gave me the ability to have sex.
I am so glad I’m on TRT and HGH.
I’m fucking sorry for deluding you but this whole thing has variable psychological effects on us and we deal with things differently. I also thought that my oestrogen and prolactin were too high (due to my TRT). I genuinely thought that reducing these would see me make a FULL 100% recovery. I was wrong and I’m sorry for myself and you.
I have shown an ability to be proactive and try things.
Mew, for example, has attacked the scientific side of things.
I want the next thing to be read properly.
We NEED to get ourselves better. This is NOT by being moany and typing in dull, boring things into a computer. We need a CO-ORDINATED approach.
I am suffered this for too long now and I can be honest in admitting I’m exhausted from it. I had a chat with Mew on google talk and he admitted to not dedicating as much time as he used to. I think other chaps need to pick up the baton and LAUNCH a COORDINATED ASSAULT on this.
This is what needs to happen. I am in the medical field I know how things work, Mew also agrees. This is what WE need to do…
Surely by making a simple website that just states what we’re about and names of Chairman, Honorary members and links to helpful websites (ie) this one, that constitutes a Society.
It can just be a printable 10 A4 attachment to either this website or Finasteride Sufferers Society website.
It is perhaps only a day’s work maximum. Just a question of COLLATING and CONCISELY presenting what is already here.
I feel I can’t give anymore to this. I am in a position now which I have to accept. I have stumbled upon a girl who wants me and my underactive penis. We actually have good sex and we communicate so well. She wants to love me and it’s time I gave myself to something else now. I’m exhausted. At least I can fucking admit that.
I erupted in an uncontrollable fit of tears and shaking yesterday and she was just so beautiful to me. She says she genuinely doesn’t think of me as a ‘substandard penis’, ‘sex is a 24 hour thing for a girl-she just wants to be treated nicely’. I fought to be in the position I am in now and I’m proud of myself. TRT and HGH has given me a life back and honestly, it’s only my psychology that will prevent me from living a good life.
She has agreed to come to my endo appointments with me now and any time I spend fighting this, she will be there as well. A coordinated and shared approach.
My immediate aims:
I think the cure is probably quite close. Mew says that there are scientists looking into the 5 AR2 issue.
PLEASE PLEASE PLEASE can some of you guys pick up the baton now. You guys who are new and have ‘only’ been suffering for 6 months, say.
I FUCKING want one good man here to stand up and be counted and set up a ‘Finasteride Sufferers Society’. We NEED to. It will mean a cure to this will come quicker.
Another good man HAS to write a 10 page CONCISE printable booklet.
Another good man HAS to set up a formal database with names and contact details. Fuck, I mean NO-ONE knows my contact details.
IF the above 3 are performed then we WILL come to the cure quicker. And the cure is there. I am a doc and I know how things work.
BOSTONUSA- you seem on the ball. Why don’t you get together with ITHAPPENS and form the society?
I’m just so exhausted from all this and can’t give anymore. PLEASE pick up the baton and I think at least those 3 things need to be done.
I’ll be checking mail here so email back, but I’m just so over this.
Well, let me rephrase – I have not been putting as much time of every day of my life into researching Finasteride’s mechanisms of action as much as I once did, 3 years ago… but I am still working on a few related projects that will bring our condition greater awareness.
I recall saying others, such as Awor, have been talking with specialists in the Androgen Receptor. I myself may have more insights to offer regarding 5AR2, as I’m scheduled to have a call this weekend with a biochemist interested in Finasteride’s mechanisms of action. I cannot say more than that at this time.
Yes, please do post those materials. People need more than just beliefs and opinions, they need scientific facts and research papers so they will be armed to discuss with other medical professionals.
As for setting up the “Finasteride Sufferers Society”… I was under the impression you were going to be doing research on what it takes to found a charity/non profit organization in various regions around the world.
This:
… does not make anything official in terms of actual registered legitimacy with a government, it would simply be some website.
I’m already working on an actual WEBSITE dedicated to our “problem” in great detail, which will provide an overview on the Post Finasteride Syndrome. It is not complete yet, and I won’t post it until I discuss things further with a lawyer.
I am also working on a seperate website dedicated entirely to my personal story and experience with Finasteride, similar to propeciasideeffects.com – I will put this up once it’s complete.
Both of these sites will be Search Engine Optimized and incorporate social media tools to increase Google rankings, generate awareness and increase viral marketing.
** That said – IN THE MEANTIME, I already have a generic template email I have sent to a few doctors which contains an overview of the Post Finasteride Syndrome and includes some of the most prominent theories for further investigation. This can be attached as a PDF to this website for now, for members to provide to their doctors/researchers.
A better option might be the following…
I will discuss further with the other member about this.
When we talked on Google Talk a few days ago, you said YOU were going to investigate how to go about setting up a registered non-profit society/charity… yet now you are suggesting others do this instead? I don’t get it.
I tell you what, I will take on all of this on myself. It makes the most sense, here’s why:
DATABASE – I have access to and can communicate directly with all members on this website, to compile a database.
BOOKLET – I’m already actively working on websites dedicated to the Post-Finasteride Syndrome, one of which will be launched when the time is right (lawyer discussion pending).
I also already have a detailed Email template about the Post-Finasteride Syndrome which can be converted to a PDF – this is probably the closest thing to a booklet for now (you’ve seen it since I sent you a copy). So for someone else to do the same work would be redundant (they are welcome to if they want to, however).
JN, I think it’s best you either take a break from this site, or stick around to update people on your progress. But to come in here and give people a sense of hope with your particular treatment regimen, and then backpeddle slightly on things, was probably not the best way to go about it.
Per our discussion on Google Talk, you mentioned you had not been relying on hormone tests for some time now (years), instead preferring to rely on how you feel. I am not attacking you here, I just do not understand how you can “know” if your prolactin or estradiol was high, what your T levels are at, or anything else related to your treatment if you do not actively monitor your hormones.
Also as discussed, and as you mention, I have attacked this problem from the “scientific” angle – for me, and for anyone in the medical field, that is the ONLY way to attack this problem. Everyone has their pet theory and personal opinions, but it is through the scientific research we have uncovered in the Finasteride Studies section that we have a basis from which to understand how the drug operates, what it might have affected, and where researchers might start looking to try and find the root cause of our issues.
To NOT attack this problem scientifically (based on published reports) is to ignore all of this, leaving people to grasp at straws and any infinite number of theories about why we are experiencing what we are, with absolutely no proof to backup their claims. Again I am not trying to slight you but I feel if you are relying more on “feelings” and “beliefs” vs actually reviewing published research on the drug and how it operates, you are doing yourself a disservice and will be no further ahead when dealing with medical professionals and researchers – people we need to reach out to, for them to ultimately conduct a STUDY ON US vs. men who never took the drug, to see what the differences are and determine the root cause of our syndrome.
In closing, all 3 of the points you propose, I feel I am in the best position to manage. It’s not because I am a control freak or power tripping, its simply that I am in the position to communicate with all members, have their trust, and am actively working on related projects similar to what you are suggesting.
I hope this message finds you well and you can step back and re-assess things without becoming overly emotional. We need to approach this problem from a logical and scientific point of view, not an emotional one.
Best,
Mew.
Mew,
I agree with everything you say. I’m trying to add hope, positivity and proactivity but I seem to end up confusing myself and others, and this is not good.
Please understand that in 2003, when we initially came together, we did not know how to tackle this. I think I’m still stuck with my penknife, trying to slash my way out of a thick jungle.
There are other accusations that have been levelled at me and rightly so. I have treated you chaps unfairly and given false hopes.
Please, I want peace and I have apologised.
I have also brought good hope to the forum with my TRT and HGH experience which HAS ALLOWED ME TO FUNCTION AND LIVE AND HAVE SEX. Big improvement from 2001.
I have also spent thousands of pounds exploring wrong avenues.
Now we move forward.
To everyone- I have tried SO hard, but I feel I have NOTHING CONSTRUCTIVE to offer apart from my ideas (which I STICK TO AND NEED DOING).
Mew- I’m sorry for saying I was going to do those things in the coming weeks, but I simply cannot. I’m so sorry.
Mew- I’ll send the IGF research to your gmail email address. I’ll also send you my full contact details.
Mew- please delegate jobs to other men here and let them help out. You are our leader and you need to delegate to reduce the pressure on yourself.
Everyone- keep going and please offer to help Mew. He needs support with those ideas. He’s a fantastically clear thinker through this. Please support him with the ideas discussed.
I need to take a break from my fight and from this website as I’m too emotional.
I desperately want to get better and for us to find the ultimate problem and cure and I promise to join the COORDINATED fight in a few months.
I’m with you all the way
JN
Yes, well in 2003 there was not the wealth of info that has come forth since:
propeciahelp.com/forum/viewtopic.php?t=7
propeciahelp.com/forum/viewforum.php?f=8
propeciahelp.com/forum/viewtopic.php?t=2002
propeciahelp.com/forum/viewtopic.php?t=761
propeciahelp.com/forum/viewtopic.php?t=2763
youtube.com/watch?v=2nXWVTStnHs&NR=1
youtube.com/watch?v=B8e7HERXA3s
propeciahelp.com/forum/viewt … 4529#14529
propeciahelp.com/forum/viewtopic.php?t=2551
propeciahelp.com/forum/viewforum.php?f=27
propeciahelp.com/forum/viewforum.php?f=24
propeciahelp.com/forum/viewforum.php?f=26
That is simply a fraction of what has been researched around here. I’m not here to berate or scold you, just point something out: what you did is basically timewarped from 2003 to 2009 without catching up on everything that’s happened since you left “the scene” years ago.
Unfortunately, you did not review the materials on this forum which have provided at least a very basic starting point from which to investigate further. Rather, you came and posted immediately from an emotional point of view and your own personal beliefs about the problem without reading and acquiring the knowledge above, which would have brought you somewhat up to speed and allow you to better express why you came to the conclusions you did, and why others should consider such treatment options.
Since you have yet to post any scientific materials to support your proposal that HGH increases libido/erectile function, most people have been taking you on your word simply because you are an old member from the Yahoo group – unfortunately, your changing of mind/backpeddling that has occured in the past week may have diluted your credibility around here somewhat.
Regardless I can understand what you are tying to get across – HGH seems to have worked for you, and that in of itself is fantastic if that’s the case. I and others do appreciate you returning to provide an update – perhaps it was a bit over optimistic, but it is encouraging. If others find success with such a treatment route should they consider it, then we will have you to thank.
JN, I don’t want to continue on this point but I’m just curious why all of a sudden within a few days you can no longer do what you said you would?
If it’s a private matter then please PM me.
Rather than email me, please post the materials in this thread you created (“I think HGH is the cure”):
propeciahelp.com/forum/viewt … 9&start=20
Yes, I may do just that, particularly when it comes to researching how to setup a non-profit/charitable organization on a global basis.
Yes, we all want a cure – but in order to start the investigation we need awareness from, and research by, the medical community on us. Media awareness has also been discussed, and people should contact their local news and TV outlets to spread the word. If each person on this forum did their part to generate awareness about the Post Propecia Syndrome, especially with doctors, then this might get taken more seriously by the medical community.
JN,
That’s ok man, don’t feel bad. We all know how this problem is hard. Just take a break, work your emotions. I think a psychologist is a good idea, he or she will work with you in a way that you will feel more confortable in the position you are right now. It was very helpful to me three years ago. I also think you have all reasons to be proud about yourself. You managed to finish Med school, start a TRT program for your self on your own and build a firm relationship with your girlfriend despiste the burden of the drugs consequences. So, take a break, you deserve it. Don’t worry, we will keep the ball rolling.
See, since July two important things happened to me: My physical symptoms have worsened substancially (i later found out my T has dropped). But on the other hand, my depression has ceased, and i am now able to fight for this cause. In July, i had to take Prednisone for allergies and lung inflammation, and apparently, my overworking adrenals were the cause of my depression, cortisol was draining my neurotransmitters. I am mentally stronger now to help, and it is time to dedicate to this.
Mew,
I will be in USA starting November, for my appointment with doctor Crisler. I have family in MA, and i wil stay there for at least a year, as i intend to start some kind of treatment with doctor Crisler. I won’t be working.
I want to volunteer to help. I do agree we need to go a step further. I am now writing a detailed story about my case, from 2004 to now. I intend to present this to Dr. Crisler and talk to him about my low 3 adiol G level, and how i feel i am hypopituitary.
I agree you are in the best position to manage. You already do this and is very competent.
I also agree it is time to move from an internet group (which doctors are quick to discredit) to an organized “real world” movement.
BOOKLET- I feel i could be helpful with the booklet, since i am going to have the free time, and can research how to build one and do it. We need to put in writing the evidence we have, all backed by blood tests and studies. More than the symptoms we share, there are patterns we have in common, from blood tests to treatments that have not worked. I would feel good in knowing i am helping someone convince his doctor about this problem, and giving instructions on how to proceed.
SOCIETY- I have no idea how this is done. But i can help too if given a direction on what to do.
RESEARCH - I really think we need to focus on this. We need to hire a researcher and create funds to enable this action. We have over 1000 registered members, if everyone contributes with even a little amount, we can hire someone. I also am volunteering for any studies or blood tests needed, as long as i feel it is safe. As i said before, i will have the free time.
HUMAN RESOURCES - Since there are over 1000 members here, we should use this to our benefit. My first suggestion is about doctors. I am sure there is people here who are married to a doctor, or brother of a physician, etc. We need to bring these people to our side. Convince them we have a real problem. A low 3 adiol G number is one unquestionable proof. Doctors can say low LH and FSH is due to depression, but nothing can explain a low 3 adiol number other than propecia or a congenital deficiency.
REUNION - I also would like to encourage people on this forum to meet in person if they live close. There is nothing to be embarassed about, we are all suffering the same thing and by meeting we can develop new approaches to organize this movement. I will be in Boston from November on, so anyone interested in meeting, please send me a message.
SITE IN OTHER LANGUAGES - I also have had some ideias about building a portuguese website, Finasteride is widely used in Brazil and few people speak english here. But then i thought it would be a waste to do something separate from this forum. The more members we have, the better. And for the sufferers, this approach would be the best too. So i’d like to talk to you about this, Mew.
I’m from boston. I’m going to see Dr. Crisler in a few months and make him my new doctor. I need some bloodwork done, the last line of bloodwork that was done, was in 2005 i believe.
Anyways, I’m in the same situation JN was in. Had side effects since late 2002 until now…It’s been 7 years and not recovered.
My emotions are shut off, I’m going to do everything in my left hand to get better, spread awareness, and not stop fighting. We will win this war, there’s a reason this group was created, it’s in God’s Hands There is too much blood work/evidence being compiled for Merck to deny these claims within the next few years. Like Mew said, we need more doctors to come forward. Dermatologists have their own agenda and will keep prescribing the drug if awareness isn’t spread.
Futhermore, I think the researchers and scientists aat Merck should be accountable for their actions and not coming forward. There has been a lack of effort within this organization, their new CEO is pathetic, he is as wishy washy as the last CEO.
Finally, when their patent expires, we’ll see HOW much information comes forward…Their revenues will take a massive hit, therefore the drug will be a less of a priority for them, and to avoid massive lawsuits from coming in which could add more legal costs and affect their bottom line, they will probably come forward, and hopefully take the drug off the market for hairloss(not BPH, since it’s needed for people with that condition). I hope this incompetent company reads this post a few years from now, so the medical community and FDA can see how unethical they are, and stop approving their drugs in their pipeline.
Moral of the story, don’t sacrifice your libido for vanity.
JN, i wouldn’t feel too bad about all of it, you’ve had a rough ride for a long time it’s understandable. I think though that it’s good we at least know HGH offered some improvements to your situation so it’s another important step in the right direction with things that may be beneficial to address the problem. I’d be curious to ask you more questions about your experience to try to piece certain things together with my own improvements made on xyrem, but would prefer to do it via pm. That way things get less cluttered and out in the open beforehand. anyway, wish you the best of luck.
Hey chaps.
Yes, just had a VERY emotional weekend. I phoned a Professor of Andrology today in a panic and he wants me to email him material. he sounded fantastic, given that I interrupted a consultation.
I feel better now.
I’ll leave the intelligent scientific research to the clever chaps here like Mew and Corrievip.
I have taken a very practical ‘human guinea pig’ approach to this problem.
I’m on drugs for life and thankfully TRT and HGH bought me more time and made me much better.
I am now very interested in Masteron (DHT), and I will endevour to inject it.
I will first get the relevant blood work (Adiol G etc) and consult with the Prof.
Take care
JN
Wow. This thread has had a lot of activity. Because of this thread I added IGF-1 to my recent testing. You can see the results here, but really IGF-1 was the only thing that was in normal range (it was actually quite good).
propeciahelp.com/forum/viewtopic.php?t=2787
I just thought it was relevant to the argument being put forth in here, but I now see there has been a bit of a retraction in recent days from the initial assertion that HGH was the cure.
Hi Gcac,
Indeed, your IGF1 levels seem fine. HGH might help some people here though. Could you ask your doctor to test Androstanediol Glucoronide (3adiol G). DHT testing is not a precise marker for 5arII activity. 3adiol G is the final metabolite of DHT (through 5arII). It is a precise test and i think it is important that everybody here tests this.
Correiovip - I am aware that Adiol G is a better marker, I live in a country where this test does not exist, hence the DHT test (even the DHT test had to be sent to a neighboring country). I am intending to check Adiol G as soon as the opportunity presents itself. However, I do not doubt the veracity of my DHT reading, as I have no outward signs of a return to normal levels of DHT, and my Testosterone readings have been consistent or indicative of low DHT.
still a bit confusing for me to analyze the whole thing with you JN. I’d be curious to know more about your details and symptoms regarding your situation. Were affected mentally such as with your cognitive abilities, depression, sleep, weight etc. You say hgh helped in weight loss and lean muscle gain, and you feel well enough to run and play sports etc. It would be interesting to know how hgh but more importantly how IGF-1 production helps in the recovery process as I think that may be the main component and benefit of it’s use.
Hello.
I’m getting Adiol G tested soon. I made about 100 phone calls trying to find out where they do the test in Australia. Was about to book to fly to States, when I learned you can buy the ‘material for testing Adiol G’ from a private company. You need access to a lab. I suspect that just because the test isn’t done in your country doesn’t mean it cannot be done.
Australia- 2 places to order kit.
First one is 600 dollars, second one is 1300 dollars.
I’m going to ask my endo in Perth to make the hospital lab do it.
Also, I’ve been researching a lot about DHT injections. Looks like it’s not made anymore by a ‘proper’ pharmaceutical company. Was previously made by Belgian company.
I’m going to go with British Dragon (new products out Sept 2009) who make quality steroids. Name for DHT injection is Masteron, but Mastabol is the BD name (combination of 2 esters).
The side-effects of Mastabol are what I need; erections, libido, acne, healthy feeling penis (instead of my penis skin sloughing off like an old man). Then repeat Adiol G to get it top of normal range (if DHT shots work).
I will travel to Thailand and get in with my old friends the body builders who know steroids inside out, fakes etc.
Will update you soonish. Can’t wait for this shit to end, maybe I’m close.
Laters
health.groups.yahoo.com/group/fi … ssage/1241
Countless thousands of men have restored sexual function through supplementation of GH when their endogenous production was entirely appropriate for their age. Far, far too many to ignore. There is a wealth of anecdotal evidence out there that GH supplementation (in absence of deficiency) is effective in treating, for instance, ED that is refractory to even TRT. We do not know why yet (at least, I have not heard an explanation yet, I should say). However, many’s the treatment through medical history we did not discover mechanism until some later date. It’s just a matter of having another option to try.
Posted by Dr Crisler in 2004.
Interesting study showing that transdermal T therapy does not increase 3 alpha Adiol G levels.
Clinically, TRT didn’t improve my erections.
Proviron (oral DHT) improves my erections, however. I notice a steady decline in erectile function if I don’t take Proviron for, say, 7 days.
jcem.endojournals.org/cgi/conten … t/66/3/546
JN
PS, I am going to get Masteron from bodybuilders.
Am getting Adiol G level tested first.
I have now discontinued HGH. Whilst it improved my symptoms, the recent discovery of low Adiol G levels leads me to believe that a lack of HGH is not the cause of my symptoms.
This is a 360 degree turn from my ridiculously optimistic posts a few months ago, when I returned to update you.
I specifically noticed a more prominent supra orbital ridge, possibly because I was taking too much out of desperation.
I am now awaiting a supply of Drostanolone (synthetic DHT injections) commonly used by bodybuilders.
The following should be my complete regimen in 2 weeks time:
In keeping with my ridiculous, intractable optimism, I am assuming (possibly incorrectly) that the Adiol G sample I have sent to USA will be low.
JN
Hi JN,
indeed I was wondering if HGH was mainly helping in compensating the symptoms but not being the root of the problem.
I suffer ED and libido shit for years but my IGF1 and IGFBP3 levels are really high.
The AdiolG test is also something I am looking for.
Good luck and keep going!
When you do a 360 turn, you’re back where you started.
Hey, just attaching some journal abstracts on DHT SAFETY AND EFFICACY, with particular reference to Drostanolone.
We may need to quote literature to acquire Drostanolone preparation as it appears to be illegal in USA and Australia. It is not commercially available.
I’m hopeful it may be helpful for some of us, particularly with sexual problems.
You will notice Drostanolone was a breast cancer drug, used because DHT opposes oestrogen activity. The FDA recommended doses of upto 1300mg per week intramuscularly when the drug first arrived on the market in 1961. Originally it was made by Sarva Syntex (Belgian company) in 1961, then also by Eli Lilly (USA).
Sarva Syntex discontinued production in 1996 due to low popularity of the drug (other chemotherapeutics were better for breast ca).
Andractim gel is available in Europe and there are studies to indicate efficacy but I’m not interested in gels/creams.
ncbi.nlm.nih.gov/pubmed/1242823
196.33.159.102/1972%20VOL%20XLVI … %20and.pdf
(Is the downloadable FULL version of the first link. This is probably the highest quality study into drostanolone.)
jjco.oxfordjournals.org/cgi/cont … act/3/2/99
ajcn.org/cgi/content/abstract/27/9/901
www3.interscience.wiley.com/jour … 1&SRETRY=0
There are many studies into DHT injections. I have access to Medline and PubMed (journal sources), so if anyone is having grief, drop me a private message.
Also, I’m aware of the best UGL (underground labs) in UK that supply Drostanolone, including 2 of pharmacy quality. Again, drop me a PM if interested.
Cheers