Oh one more thing, in your situation with complete dht shutdown it might take a few weeks of propionate to get dht stored up and built up, anyway, it’s really frustrating to know how to solve this and have people just not believe you. You will all see when patient X comes forward.
Hi RecentQuitter ,
Yes, it is very interesting why some treatments seem to work and then tail off. In addition, many seem to find find ED meds are very powerful at first, but soon lose their efficacy.
I think that scientific research into the problem is key: it will be very interesting to find out what the two studies find. From a personal point of view, I think that PFS should be treatable, as I’ve had fluctuations in symptoms - but unfortunatley we dont know enough about the condition to understand why this is and how the condition can be managed (or even reversed).
I’d urge everyone reading this to donate to the Foundation, and I’ll email them to find out if there is any more we can do around the studies.
Davey
JQD you’re on 30mg a day of arimidex now? Weren’t you on 2 or 3 per day a few weeks ago? Do you think this may be a case of you needing more and more arimidex until you eventually don’t respond?
Recent, Did you discuss this with Dr. Goldstein? What did he think about SHBG?
In this study below, Fin. was found to increase SHBG. However, I feel like Dr Crisler would have noticed a trend of high SHBG long ago in PFS.
eje-online.org/content/147/4/467.full.pdf
My SHBG levels tested throughout my TRT experience (never had real benefits from TRT)
-16
-15
-14
-17
-22
-24
The range for all of these tests was 13-71
I just got back from an appointment with Dr. Goldstein. He had lab results from blood drawn two weeks ago and zeroed right in on my SHBG: 60! Highest level yet for me. He agreed it’s significant in that the only time it was low was also the time I was feeling good. But it’s not like he has a specific strategy just for lowering SHBG – and SHBG level may just be an indicator of the bigger root cause of this.
The main thing Goldstein focused on was 5ar being wrecked. He said the key thing to know is that it wasn’t just temporarily inhibited by Propecia; it was killed for good. (Not all 5ar, apparently, but a lot, if I understood right.) So part of his protocol involves supplementing DHT.
But it may go beyond that. He has a power-point presentation that he takes patients through; very interesting stuff. One thing he showed me involves androgen receptor synthesis. He showed what DHT receptor levels look like in a normal animal and then in one that was given finasteride. Huge difference – like 10x as many receptors in the finasteride one. This happens, he said, because the body can respond to a lack of DHT by generating more receptors – a lot more. And here’s the thing: according to Goldstein, these new receptors that proliferate are (my word here) mutated in some way. They don’t work properly. But DHT will still bind to them, and then it will be useless; you’ll feel no benefit from it. These seemed significant to me, since it gets to the mystery of this board: Why do a few guys respond to DHT (or other similar protocols) but then when the next ten guys try to replicate it, they get nothing? Goldstein seems to be saying that, for reasons unknown, some PFS guys escape the DHT receptor issue. So is this why some guys can get out of this and recovery with treatments that do nothing for others? I asked him and he said something like, “It can mean whatever we say it means right now.”
Anyway, I’m going to give his protocol a shot and I have another appointment with him in the AM before leaving town. Trying to make sure I come up with the right follow-up questions to ask him…
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Recent quitter, how’s the best way to contact Dr Goldstein? Every time I’ve tried to email any of these doctors I don’t even get an acknowledgment.
I think you’re better off just calling. I was there for 4 1/2 hours. You see a pelvic floor specialist first, then a therapist and then Goldstein. To me, it’s worth it just to watch Goldstein’s Power Point presentation. It made me wonder if the folks doing the studies have talked to him at all. It was just by far the most comprehensive explanation I’ve encountered of what is going on with us.
The cost was around $850. Plus I’m going to have to pay for some meds – his protocol involves about half the inventory from my pharmacy. My expectations are in check; after 2.5 years of this, I get that the odds of any given protocol working are … not great. But worth a try and I do think this was worth the visit.
$850. It’s hard to digest that on top of this condition we have to pay so much for the small chance someone can give us some direction that cures us. The chance.
I’m so fed up.
I foudn some information in articles and bodybuildforums stating that when sbgh is high you could feel like estrogen is high, and you can get the exact same symptoms that we got. Maybe this is why we feel like this, think we have to look into it. lets keep this thread for that purpose, jdq maybe you could also take a look
Mine is low
Sex Hormone Binding Globulin 19 nmol/L (15-48)
@RecentQuitter, Did you post your recent blood work that you took for Goldstein? I would like to compare. It sounds like Goldstein is going to keep you on T injections, yes? Any reason why since they didn’t seem to work for you? and in that case what would you have to loose by trying prop instead?
@Nopecia, I hate to tell you this but if your blood work is good then Goldstein would give you Zyban for your libito issues. Maybe DHT cream for your dick. You can get that now without a prescription. The rest of this mess he is blaming on receptors. Save your 850 and donate it to the foundation.
Was this his own theory or is this something that he said was shown in research??
I’m on the flight back now and don’t have the numbers on me, but basically:
- Total T level was at the top of the range (824 with a ceiling of 827). It was high because I had taken a T injection just before the most recent blood test.
- DHT was in the low 40, with a ceiling of around 80. This is what Goldstein focuses on most – the ratio of T to DHT. It should be 1:1 and they should move in tandem with one another, he says. So if my T is at the upper limit, my DHT should be too. But my DHT isn’t.
- SHBG was 60 on a scale of 10 to 50.
- LH and FSH were actually decent, and this surprised him a little, since I had been on exogenous T for a long time with Dr. Jacobs and didn’t use HCG or Clomid during that time. He thought I might be shut down because of that, but I’m not.
Those are the basics. The protocol is complicated, but a key part of it is trying to equalize the T:DHT ratio.
In terms of Propionate, I’m not against using it, but honestly, I can find no documentation anywhere of what JQD is saying. All of this excitement over Propionate is based on assertions he’s making about how it’s supposedly radically different from Cypionate. I’d urge you to look around on body builder sites, where they live and breathe this stuff. At best, you will find a few guys who think Prop is a little better because they find there’s less water retention. There’s nothing about Cyp causing uncontrollable estrogen levels, and there are no studies that I can find that indicate this. The overwhelming consensus from people who use this stuff seriously is that Prop might be a little more optimal, but that for all intents and purposes there’s no major difference. It’s not like one should cure you while the other should make you worse.
I find this fixation on Propionate as the Miracle Cure We’ve All Been Missing to be tiresome, as you can maybe tell. Doesn’t mean I’m against trying it – and I certainly wouldn’t discourage anyone from using it. But I am tired of the over the top claims that it’s the thing that’s separating all of us from being cured. That kind of hype and boosterism is simply disrespectful of all of the suffering guys who have been trying everything they can think of and posting here for years. It should be clear by now that (a) there are guys who have gotten out of this hole; and (b) what works for one guy will not necessarily work for another.
The research on receptors was not his, although I can’t remember the source. Part of his PowerPoint are pictures of two microscope slides, showing the receptor difference in an animal (I forget which one) treated with finasteride. In terms of the receptor synthesis idea, it sounded pretty bad to me when he explained it yesterday – that some guys are maybe just screwed because they have mutated receptors. But I had my follow-up this AM and pressed him a little on it and he wasn’t that negative. Talked about repetitively hitting the system with exogenous DHT to combat it.
Very interesting, thanks for posting on this. I believe that the theories which were discussed with you are from one of the Italian studies published over this year - which was a major factor in the two current major research projects. The problem does sound scary but it is promising they have an idea of what causes PFS. I really hoe that your treatment works and will keep my fingers crossed. I’ll also donate to the studies again (haven’t for a couple of months) as I think they are just so essential.
Thanks,
Davey
I followed up with Goldstein about the SHBG today. He definitely thinks it’s a problem, but said he doesn’t know exactly what it means or how to bring it down independently. He also suggested it might point to the liver. The thing is, I do know from my own experience that HBG fell dramatically when that first T shot was working. So my guess is that high SHBG is a function of my problem, and not the cause of it. But that’s purely speculative. Best I can do is follow this protocol, see how I respond to DHT and try to get that ratio where it should be, and work on my own to create an optimal healing environment in body – diet, lifestyle etc.
It has to do with the high induction of dht via propionate every day you inject and quickly and the short half life which leaves behind controllable aromatization. I didn’t get my info from boy builder websites, I got it from doctors and specialists in hormone replacement therapy when I ran a huge medical company. The differences in high dht and low estrogen are only significant with guys with pfs and low 5ar to reduce the rest of the test to dht. When we run out of 5ar that’s when test becomes a problem if it remains in our system. With propionate it does not remain in our system long enough to cause the problems cypionate causes.
I am 100% right and I will not budge and I don’t need to prove what is fact, not just fact in the industry, but fact to a friend of mine who is a pharm rep for hormones, it’s in his literature. As for propionate working with pfs and cyp not, no you won’t find that on body builder forums. I am 150% correct and even dr Jacobs understood this within 10 minutes, your lack of understanding why is very dangerous to yourself and others recentquitter, very dangerous.
Just because you don’t understand endocrinology doesn’t mean you should call me insulting to pfs guys, I have reversed this in myself and now another who will soon be posting. If you can’t understand the differences then you should just say that, but making this declaration that I’m making generalizations is wrong. I worked in the business, I know more than any doctor I have ever met on this topic, anyone who disputes this treatment is contributing to people getting worse or not recovering.
You are speaking in theory and I am speaking with real world experience, you can’t accept that I was non non responsive to test till I used HGH, I was just like you. You are estrogen dominance, if I injected cypionate I would shut down too and be non responsive and no amount of arimidex would solve that.
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Yea, and the more synthetic dht you take the more your own dht will drop over time till it shuts down completely and you are only replacing it, and the long term effects of that are not known. My protocol which you don’t believe works (because you can’t understand it) will not shut down your dht, but induce it. I’m trying to help you man, but you are going down a road I have already been down, and let me tell you, it has a dead end. Why else would Tom whatever his name who also goes to Goldstein be cycling CDnuts protocols of Goldstein works so great? He is way off and his protocol is suppressive and counter productive to recovering from this, andractim is a horrible form of replacement dht also.
Another doctor taking money from desperate guys offering them cures that don’t work, all it is is standard hrt with low dose test (bad hrt) and andractim and Wellbutrin thrown in. The difference between propionate and cypionate is the difference between me not responding to testosterone and me responding to testosterone, it’s the difference between me getting worse and recovering.
So I’m sorry I don’t have a citation from a Google site on why I am right, I learned what I know from school and practice in real life, not from websites.
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Please just stop, man. You’re exhausting. I’ve stayed out of your thread even though you keep bringing me up in it – I wish you’d extend the same courtesy.
My issue is not with you sharing your story and encouraging others to try it. I’m all for that and I eagerly await reports back about their experiences. And as I have said a gajillion times, I would love for you to be right and to have found a cure and for this to be over for all of us.
What I object to – and I can not stress this enough – is the tone you have assumed on this site. I have mentioned this before and others have too, but you ignore it. This board is littered with a decade’s worth of miraculous recoveries that went unreplicated, promising leads that turned into dead ends, excited claims that petered out, and well-intentioned posters with claims of finding the Unified Theory Of PFS that never pan out. This is the world you threw yourself into a few months ago, with posts in ALL CAPS claiming “100 % REVERSAL” and “FINAL PROTOCOL” and all sorts of other dramatic pronouncements. It should not come as any surprise to you that the men who have been living in this hell for years would have critical questions for you, would demand substantive support for your claims and – while, like me, truly hoping for you to be right – would approach your statements with the skepticism that comes with all of that history I just laid out.
And you should be doubly unsurprised (if that’s a term) when even after posting your “FINAL 100% REVERSAL PROTOCOL,” you ended up changing it. And not in an insignificant way. In the course of that very thread, you begin with touting your recovery with Testosterone Enanthate, and then you move on to Masteron, which for several pages you tout as a life-changing miracle supplement; then you condemn Dr. Jacobs as a charlatan, only to then reverse yourself and praise him as a visionary for turning you on to Aromasin (something, you said, we should all be on!); you then reverse yourself again and tell us that not only is Aromasin not helping us, but that it’s actively hurting us, and you end up pleading with user Tumbleweeds to stay as far away from it as possible; you also turn against Masteron and DHT and then finally land where you are now – we must be on Propionate, because every other form of Testosterone will hurt us, and we must take tons of Arimidex.
Good grief, man. And you have the audacity to express surprise when guys don’t just automatically defer to the unparalleled expertise and years of experience with a Top Medical Company you constantly tout? Do you have any idea how you sound? I’m offended at your insistence that you have this all figured out, that any critical questions about your claims signal only a lack of sophistication on the question-asker’s part, and that those choosing not to follow you – on every contradictory twist and turn in your ever-evolving “100% FINAL” protocol – are choosing not to get better. That is offensive. Very simple. A far more constructive approach to this board, as I have said before, is simple but would require a measure of humility that you seem incapable of mustering. Just say: “Hey guys, I have great news: I was deep in Propecia hell and now I’m out. Here’s what I did and here’s why I think it worked. Will it work for you? I don’t know, but if you want to try it, here’s how I did it. And if you do try it, let’s talk about it here.”
If I sound angry here, it’s because I am. You are a well-meaning guy and I know that. And much of what you’re saying, in broad terms, makes lots of sense. My own sense – and this is where my critical questions about your protocol (at least the current version of it) come from – is that you have a tendency to take relatively minor differences between things (Prop vs. Cyp) and to blow them up into the difference between The Cure and Getting Worse. I find that to be a real stretch, and when I question you and ask for some kind of source on the supposedly vast, life-altering estrogenic differences between these two different release methods for testosterone injections, you simply assert that you know better and that it’s common knowledge. That’s fine, man, if you want to play it that way. But you should not be at all surprised when that’s not enough for someone to fall into line and embrace your genius – especially, again, since you’ve changed your mind so many times on what’s good and what’s bad.
Finally, let me just address something you mentioned in your own thread. Responding to someone who said that I tried your protocol and got nowhere, you said this:
OK, I get it: The protocol you have landed on is not one I have completely tried. Not this current version, anyway. You say we need Propionate and Arimidex. At least that’s what you say now. I started on Aromasin when you were singing its praises and I felt … nothing. I then switched to Arimidex at your insistence. You told me to pop two and wait an hour and that I’d feel a mini-recovery. I felt … nothing. I began taking massive amounts of Arimidex because you insisted that estrogen domiannce is at the heart of this. I took 25mg in 5 days. That might be enough to put me in the Guinness Book of Records. And I felt … nothing. So you said this is because I had taken a shot of Cyionate instead of Propionate. And I find this very hard to believe, as I said – the idea that Prop and Cyp are so radically different that taking one will cure me while taking the other with a massive, record-shattering dose of Arimidex will do nothing to be … a stretch. I find this especially hard to believe when the only evidence that exists of this supposedly huge difference between Cyp and Prop is … your assertion that it’s the case.
But anyway, forget all that. You discount my experience because I didn’t follow JQD’s Final 100% Protocol (v. 6.0) to the T. OK, fine. But then, in that same thread, you tout as proof that you have found the silver bullet the experience of a mystery user. This is what you say:
Do you see what you did there? Patient X IS NOT FOLLOWING YOUR PROTOCOL 100 PERCENT! He hasn’t even tried Prop yet! He’s taken only Arimidex! But in your world, we should all bow before that as incontrovertible verification of your brilliance – while we also dismiss completely my failure to feel even a shred of a hint of anything on 25 FUCKING MILLIGRAMS of Arimidex.
I have wasted far, far too much energy on this. I wish you would just share your experience and contribute to these discussions in a productive respectful way, rather than framing everything you write as The Answer. It comes across as hype and boosterism, maybe even hucksterism, like you’d find on a late-night infomercial. And yes, it’s disrespectful. This is really pretty simple: You’re felling better. Congratulations. We’d all kill to say the same and I’m sure I speak for everyone here when I say we’re curious about your experiences and what those who try to replicate them report back with. But your endless posts (no one can write anything without you putting up 5 new replies) with the same over-the-top claims and the same indignant responses to critical questions really aren’t productive.