The following were contacted: [EDITED].
At this point, it’s out of my hands, I do not know who is participating. There appeared to be some interest, unfortunately, I don’t have further details, I’m out of the loop I started, lol. I think the doctors are interested in talking amongst themselves w/o patients, understandably so.
You’re seeing Jacobs right now, correct? What’s his angle & treatment for you?
So, quick-ish update (new lab chart attached):
*saw Mariano in early October, got uber-comprehensive diagnostic lab panel. was super-impressed with his knowledge, on-the-fly answers/explanations, and thorough 2+hour initial evaluation of all symptoms
*He does not subscribe to the androgen insensitivity theory. Believes that Fin causes a cascade of events that the body normally can compensate for, but in us unlucky bastards was the straw that broke the camel’s back. He believes that, ironically, our bodies shut down certain systems to attempt to keep us “healthy,” but that we’re in a sustained systemic inflammatory immune state, an unhealthy, complex, chronic state that deteriorates our health. His explanation is far more elegant, but I’m trying to keep this quick-ish.
*Treatment is a customized one, per-patient, and he says that the situation is reversible, depending on how much physical damage (cell death), has occurred. Hence, I’m on a particular regimen of supplements (vitamins, amino acids, etc.) that has been tweaked once. HCG is potentially an option (waiting to see where my Testosterone/hormones baseline at, since stopping Clomid and all hormonal drugs in October), as is thyroid supplementation (whatever that means). So, he attacks the matter from a fundamental nutritional viewpoint, but also prescribes meds. He also has a particular diet that he prescribes. I’ve been following the diet and taking the supplements religiously.
*I’ve gotten two rounds of labs. The first, was pages and pages long. The most recent panel covers a few select parameters (too soon, he says to re-test certain things).
*Some of the things observed from the inital visit and labs (paraphrasing here): suppressed adrenals, low blood sugar, high norepinephrine, low seratonin, low progesterone, low thyroid hormone in brain, Iron trapped as Ferritin, low IGF-1, zero detected Iodine, libido circuits/signaling is damaged, etc, etc.
*Note, that the complete first round of labs was too long to transcribe, so I only typed up a few of the main ones, particularly recurring tests. The initial labs included many diagostic tests to rule out certain things.
So far: no real tangible improvement in ED, possibly more horny. Slow-speech (getting out the words) symptom (observed during evenings) is gone since taking Ioderol supplement. Stomach/digestion = VASTLY improved. Short-term memory = improved.
I have a follow-up consult in a few days. I’m expecting major tweaks. TSH, in particular has escalated significantly. I’m not familar with thyroid values, however, and wonder what is in store next.
Can anyone take a stab at interpreting these latest labs? What do my thyroid tests, indicate? Seems whacky to me.
Thanks.
[attachment=0]XhorndogLabs.png[/attachment]
Is he talking about prostate cell death? And, how would you ever know how much damage (cell death) has ocurred?
Still can’t believe he won’t even entertain the thought of silenced AR signal theory. Has he ever even tested anyone for methyelation? I HOPE this isnt the issue with us but my hormone profile is within range of “normal” and I still have a dead, shrunken and painful penis. I’m afraid this goes way beyond tweaking hormone values.
The guy lost points with me when he wouldnt even attempt to answer a PFS question on his forum. Compare that to Jacobs who posts a well thought out blog (and even answers your questions to that blog) on PFS almost monthly…
I believe (and I could be wrong), he’s talking about brain cell death along with prostate cell death, fibrosis, etc… And I don’t know that you could know how much damage there was.
What sold me on him was his thorough explanations on the very forum you mention. I think he’s so busy writing a book right now that he does not update the forum/blog as often (or at all?), which is a pity. But if you dig through the men’s forum, I think you can get the jist on his explanation for why persistent side effects occur after ceasing usage of drugs such as finasteride.
Also, I don’t know that it’s fair to say he hasn’t entertained the thought of AR signal theory. He claims to have reversed ED in fin cases and from other drugs/situations. And that it takes time. He has a different theory/approach.
I dunno man, I don’t see many other options out there. It’s very tough, day to day, holding out hope. It’s hard not to be a cheerleader for the current doctor you’re working with, and whatever current regimen offers you hope.
I don’t see anyone getting better from just testosterone supplementation. Seems like some people mess around with enough things that they experience a brief recovery (even myself), but I think that may just be temporary adjustment of a whole cascade of body processes, hormonal levels, etc. How does one sustain that? Boy do I wish it was a matter of taking a daily pill or shot or whatever. I mean, I take over 40 pills in a day (previously mentioned vitamin supplementation).
Anyways, what is your current treatment, how are you feeling?
I feel horrible. But, I really dont think anyone is having any measure of success treating us now. If Mariano had documented cases of “cures” it would be nice if he’d submit those cases for peer review.
Since he suspects neurotransmitter issues did he test for them? Did he give you a prostate exam? I dont understand how cell death could have shrunk my penis literally overnight.
I agree, more T is not the answer with 99.99% of us. I took a shot of Depo T last Tuesday and felt absolutely nothing. Matter of fact I might feel a bit worse.
I’m definately not knocking you for going to Mariano. And, I too don’t see many options out there for us. But, I think he should take a closer look at silenced AR signal theory and test someone for methyelation before ruling it out. I agree, there comes a time that you have to pick a doc and pick a treatment and put your faith in someone. I really hope Mariano has some answers for you and all our sake.
Sorry you feel terrible, man.
As I mentioned, very exhaustive testing, including norepinephrine, epinephrine, dopamine, progesterone, pregnenolone and a million other things, lol.
Who is treating you?
Anyways, with respect to doctors, I appreciate that a few people here brought Mariano’s blog/writing to my attention, from there, everyone can do their own research and read each respective doctors’ writings (again, dig around that male discussion forum, check out the thread on chronic masturbation and other sexual matters to get an idea of his thinking) and draw their own conclusions. To date, he’s the brightest doctor I’ve ever met, I only wish I could articulate a third of what he communicates. And of course, he hasn’t healed me, but I hold out hope. He explained why I felt temporary recovery and why that recovery was fleeting, but couldn’t do his explanation justice. Experiencing that feeling, though, gives me hope that the possibility of sustained recovery exists.
Back to the subject at hand–anyone who has undergone thyroid treatment or understands thyroid issues (and suppressed adrenal issues for that matter), could you help me interpret my latest labs ahead of my follow-up in a couple of days?
Thanks!
This discussion got me thinking that we really need to push for some testing of the AR insensitivity theory (and other’s too). So that we can all know whether or not it is the root problem and so that everybody on the forum and the PFS Docs can get on the same team and focus their efforts together. I’m not sure how difficult it would be to get our androgen receptor gene expression tested but I’m certain it would be do-able. And once we had tangible evidence as to whether hyper-methylation was (or was not) the key, it would also make it much easier to push for treatment. I have a feeling that even if awor succeeds it will be difficult to get treatment in this manner (with the obvious exceptions of Jacobs, Shippen, Goldstein etc.), because many docs will still think we are crazy.
In the same way, if Mariano believes that tissue damage is the reasoning, then this also must be testable, perhaps through a CT scan of the brain and prostate? For me the big fault in this theory is that:
I’m not saying it definitely isn’t this or it definitely is that, and i’m sure that damage to the prostate and penile tissue is a part of the problem, (i know it is for me) I’m just saying we put a lot of time into theorizing and as you mentioned the PFS Docs don’t really seem to have any proven strategies which is why we probably need to start putting some focus towards getting the definitive answer on what the core problem is and whether or not gene expression is involved in this.
My feeling is that it is multi faceted but if AR gene expression is part of the problem then that is something that needs to be addressed otherwise we are just going to be putting band-aids on broken bones.
I’m not sure what the first step would be, perhaps someone like Dr Jacobs, or even Dr Irwig once his study is published would be willing to lobby a lab on our behalf. If money was an issue we could set up a fund in which members could donate and perhaps even push for a grant, which may well be feasible with Irwig’s study showing the extent of this problem. I’m sure awor is doing alot behind the scenes and may have some scientists or a lab in mind and already lined up for such a study, but he is quite secretive unfortunately so i have no real idea about how much progress he has made.
Usually the FT3/RT3 ratio is best, you only have total T3. However it can also be used and the ratio should be greater than 10/1.
Yours is 3.7/1 after conversion, which per the RT3 groups and STTM states you have an RT3 problem. See the attached excel file sourced from thyroid-rt3.com and the yahoo RT3 group. It’s actually lower than the previous test of 4.2/1, but at levels this low the drop is almost not significant.
See this page about iron levels, your’s are suspect considering the huge drop and low serum iron levels:
Your TSH is also high (doubling since the last test) which signals that you’re body is trying to get your thyroid to work harder, but you’re body is producing less of everything with a higher RT3 ratio.
Cort AM readings at the high end of the range, which is good. However you should have a 24 hour panel to get a full understanding, they may tank in the afternoon.
Regarding chronic masturbation, 99% of males are guilty of this. Masturbating in a normal, healthy adult male will not cause them to crash.
Calculate RT3 Ratio in this Excel File–UPDATED 10-10-10.xls (17.6 KB)
MartinM, thanks for that explanation!
Doc mentioned that Reverse T3 was [edit: “screwed up”} in the initial round of labs, and something about iron being trapped as ferritin. Now I see that all these values have dipped!?!?
He also said that he wanted to get TSH down to 1 (or less?). That anything higher indicated less thyroid hormone in the brain. And he mentioned that the high cortisol indicated something positive, that my body was capable of producing it…can’t recall his exact comment.
I’m surprised/confused at the Iron situation, because since seeing the doc, I’ve been eating whole foods per his directive, meaning meat (with the animal fat), eggs (whole), cheese (raw/milk/cultured), organic butter {all to increase the absorption of fat-soluble vitamins}, along with lots of greens/salads and consuming practically ZERO processed foods. I’ve upped my Iron intake SIGNIFICANTLY, not just through supplementation, but the aforementioned daily eggs, meats. Wondering what is happening with my vitamin processing. (Vitamin A and D have not increased significantly, either, despite eating more nutrient-dense foods and supplementation----perhaps it’s too early, perhaps there’s an explanation for how my system is chain-reacting). Sidenote, for those interested in nutrition, read: Nutrition and Physical Degeneration by Weston Price. For the easier-to-read summary of his one-of-a-kind research, read Nourishing Traditions by Sally Fallon
Some other things he mentioned: wanted to get my IGF-1 up, as it promotes Growth Hormone, that seems to have nudged up. Discussed how Finasteride lowers Progesterone which is an anti-inflammatory (and I’m in a chronic state of inflammation). I also had low body temperature…3 degrees lower than normal. And some of my temple and eyebrow hair loss (observed before any labs came back), he said strongly indicated thyroid-related loss.
Well, thanks again for explaining the values and leading me to the iron-angle, gonna read up on that further.
As far as the chronic masturbation is concerned, I know that out of my friends, I was the one pushing the limit. My impression from this forum is that most everyone here was a horndog pre-fin. It’s an interesting subject. Dr. M has several responses to the topic in this thread:
http://www.definitivemind.com/forums/showthread.php?t=201
I think that all the theories need to be tested and put up to scrutiny, and it’s good that we have people pushing the envelope. We definitely should not be pissing on any one doctors’ theory/approach or patient’s protocol. Until one of us reports back with a sustained recovery and clear protocol, we can’t rule out anything. In fact, it’s great if each one of these doctors has a significant pool of us.
As far as speculating on why some people (myself) can tolerate the drug longer than others (and there WERE gradual signs that were ignored), well everyone is different. Mariano believes that there are different predisposing pathophysiologies in each individual, that the body does much to compensate for the signaling changes that occur with the drug, but for a subset of the general population, the body simply cannot adjust, everything falls apart. Perhaps you thought you were in perfect health, but perhaps you were a young stud who drank excessively, ate like shit, had existing thyroid problems, or was about to have them. Unfortunately, the bottle of Fin does not come with a clear warning: Get a complete hormonal analysis before taking this stupid pill. Test your thyroid, because this shit will definitely further screw it up. You really shouldn’t be eating the dollar menu at McDonalds. Do you really even need the few hairs this drug will save? Grow a goatee and shave your head.
Personally, I feel that most of the treatments that people undergo or self-experiment with are the very band-aids that you mention: everything from anti-axiety meds your regular physician will prescribe to antibiotics to PDE5 inhibitors to clomiphine, arimedex, etc, etc. I think you can fix the system temporarily by upping one level, but there’s a whole chain reaction of things that happen, and the end result may be another type of imbalance. The deeper you can dig, systemically, to the root causes, to the foundation of the whole matter, the more likely you’ll be able to re-build. Somebody wrote on this board that some of the particular drugs and treatments on here were not necessarily wrong, but because of the high nature of individual stories, we’ll never know if a certain thyroid medication or TRT protocol WAS the right thing, because it wasn’t necessarily executed to the precise exacting degree for that individual.
Finally, as far as getting labs involved…it’s simple…as soon as this thing gets WIDELY publicized and there’s a buck to be made off finding the “cure,” all sorts of money, grants, etc. will surface, and a bunch of poor men will be subjected to Finasteride in an experimental group.
To clarify, your rt3 levels are too high, your ratio of t3 to rt3 is too low. Is that what you meant?
Probably, lol. I’m still wrapping my head around this stuff. this is why I hesitate to attempt to even paraphrase what I think my doc said and have it put under scrutiny. But I do want people to know there are options out there, different approaches, and I don’t wait until I’m healed to form an opinion on the doctor or attempt to report back some of the experience. I would hope if someone’s impressed with another doc that we start hearing about it before the end of treatment.
Thanks for the clarification, MartinM
So…at the risk of sounding completely stupid…can this type of thyroid issue correlate to ED?
yes
to further clarify/respond:
I don’t believe this is a fair, complete, or accurate summary of his position. But the scans you suggest are interesting ideas.
Who says that symptoms didn’t creep up on people? I know that I wrote off the slight degradation of sexual performance, even stopping and re-starting taking the pill after a couple of years on it. I wasn’t in the habit of over-analyzing my penis until things completely crashed and burned. And for those that the drug affected more immediately and dramatically–well, they’re different people, right? Don’t we all suffer to a different degree? As far as seeing steady improvement…well…waiting…what can I say?
Why should it? Where is it written that it should? If you give a guy on his deathbed finasteride, he’d probably tolerate it worse than a “perfectly” healthy 20 year old. I’m not claiming penile tissue death, per se. But I am taking fish oil, among other things, to repair brain cells. One of my symptoms was short term memory loss, name recollection. I’m being treated for all my symptoms, the doctor knowing that finasteride crashed my system, but treating all present, persistent things I’m complaining about.
Stopping taking a powerful drug such as Finasteride, clearly has consequences, the system goes haywire. I hit rock bottom myself, well after quitting the drug, although the drug was not the only variable in my health profile/lifestyle. There was no claim that specifically brain damage (whatever that means) is responsible for everything, only that the challenge in treatment and reversal of all symptoms is combating the physical damage to cells, the atrophy, getting stem cells to regenerate.
I don’t know why this would be entirely true, but for me, Clomid therapy DID give me a boost of energy, DID eliminate hives that were breaking out in my genital region, buttocks, DID eliminate dry patches of skin on my shins and feet. And when I was at super-high levels of T, my nocturnals and morning/pre-fully waking up wood were much stronger, I felt like I was almost there, my morning fantasies were producing results, but I couldn’t replicate that in a fully awake state. Now, I’m completely starting over, no longer taking Clomid or Testim or Arimidex. I’m trying to find my natural baseline and go from there.
Again, every single case is different. Some people have multiple physical issues, peyronies disease, scar tissue, blocked penile arteries (genetic? injury-related? fin-induced?? not worth treating until hormonal/system is recovered?), some people have a littany of side effects, some have just a few side effects, including the ED. Case in point: I went to Dr. Mariano with a friend from this website. Same day, back to back appointments. He had a far shorter list of symptoms, and his program was different than mine. We were both, btw, operated on, just months apart.
I hope the AR angle is fully pursued, it’s fascinating, and nobody here can afford to be dogmatic about a theory. Let them all be tested. I sincerely hope that we all recover, whatever the solution turns out to be, then go to Vegas and celebrate, lol.
You make a lot of good points man, it’s true every case is different. In all physical respects i am fine but sexually i am a wreck, whilst there are people on here with no ED whatsoever, it’s good therefore that Dr Mariano is taking an individual approach.
Something i wanted to ask you was did you feel that your surgery for the blocked artery has made an improvement in your situation? I know you said Dr G was not going to operate on any more finasteride blockages. The reason i ask is i want to go and get checked by a urologist for this type of complication myself.
How long are you off the drug?
It took me 8 months before i got penile pain and reduction to girth/tissue change…
Thanks man. Ya know, ya just have to have faith in somebody, invest in a process, see it through, or else you’ll never have any hope, never know what treatment did what. I was a big proponent of having the mechanical aspect checked out, and Dr. G’s practice in general (and I still am). And I’m raving about my impression of Dr. Mariano’s knowledge. But before these two docs, all the other guys had NO clue. Not the regular physician, not the urologist, not the endocrinologist, who I wanted to punch in the face, quite frankly.
Seems like anytime I mention that there may be pre-disposing factors, root causes, mechanical causality, that looking beyond androgens, is at least part of the equation, that gets misinterpreted as me somehow absolving Finasteride, or Merck, or the misleading sales reps, or irresponsible docs who prescribe it, the FDA, big pharma, all the institutions and accepted practices that get a drug like this into our systems. HELL NO! I’m just saying, we are where we are. While Finasteride is the common denominator in our stories, while we share many similar symptoms, we are but a subset of the population at large, and a subset of the finasteride-taking population. ED exists outside this circle and is multi-faceted in nature. Thyroid issues, adrenal issues, genetic issues, all exist outside this circle. And they exist within this circle. If you go down the checklist of your symptoms, now that Finasteride is out of your system, and no doubt f’d up your DHT, your Progesterone, your XYZ…what are you experiencing? (I mean, everyone out there). Does it not make sense to treat the body as a whole, to focus on your immune system, vitamins, rule out things, etc, etc? Memory loss? Ok, that can be explained by a, b, c, d…insomnia? ok…one by one by one. Some or many of your symptoms may be direct A to B finasteride-caused issues, some may have been a result of the progression of other issues, some worsened by Fin, or the ability for your system to compensate lessened by the use of Fin.
Having said the above, NOPE! I don’t think the surgery improved anything (or at least, I don’t think I’d see the benefit of the repaired blood flow until the systemic issue is resolved). I think, now, in retrospect, the brief week-long recovery I felt was a temporary hormonal/system adjustment reflected in my crazy labs at the time (high T, low E, high TSH) and all the things that weren’t tested at the time. Some other systems were compensating. I think what I experienced is akin to what some people report on brief cycles of experimental creams or HCG, etc, etc. Unsustainable. (Unless you figure out the exact way to cycle something).
Which leads to many questions:
-was the surgery necessary? (I willingly submitted to it to see if that was the magic bullet)
-given that most fin patients who have their anatomy examined find that there is insufficient arterial blood flow, is this just a common genetic makeup? that wouldn’t have necessarily played a role in young age were it not for finasteride?
-or is it a by-product of finasteride?
-do both the plumbing and hormonal side need to be repaired, then?
Dr. G. doesn’t seem to have answers at this point for Finasteride, but I’ve personally spoken with a long list of people (and met one person) who had their ED resolved because of the artery issue/surgery (but no finasteride use). And an arterial blockage is but one of many physical things that can be the matter. I don’t know that many of the other docs out there who purport to have an exact answer (right or wrong), I think they’re a bit stumped, and may have leading theories, and are willing to experiment with treatments. Thus, for me, at this time, pursuing treatment at root levels with a doctor who treats systemic erectile dysfunction, acknowledges the detrimental effects of finasteride, but explains the prolonged side effects as a manifestation of a multitude of predisposing factors, and claims to be able to reverse sexual disfunction (finasteride and non-finasteride related–it’s not the only med out there that does this shit), is the most hopeful, sensical route. I’ve tried T supplementation, I’ve had a surgery, I’ve stuck my dick with needles to have sex. This is the next step for me.
I can wholeheartedly recommend Dr. G. for a thorough anatomical analysis and diagnosis. Would urge you to be measured in pursuing surgical options, depending on the particular case. I can wholeheartedly attest to the knowledge that Dr. Mariano has—I only hope he’s 100% right and that I’m not too far gone; based on my labs, I bluntly asked him to give me a realistic prognosis, an honest take, and he sounded positive that “prognosis is good” whereas he was more guarded in my initial visit.
These posts made me realize that I haven’t (knock on wood) experienced testicular pain in a while. I think this was a Clomid/Testim-related thing. I complained about it to Dr. G., but all he ever found was a cyst in my right testicle (which an earlier urologist had reported), nothing to worry about said both. The pain was from deep within, disconcerting, and not acute, but not faint either. Hard to describe.
Although Clomid is oft-prescribed, and considered safe, arimidex the same, there ARE side effects. And Mariano told me that Clomid blocks estrogens (not just the one test a lot of us get), so that’s not really great in and of itself. I’d decided to wean myself off the meds before seeing Mariano, but he endorsed seeing where my natural baseline was.
Mentioned that eventually, we’ll decide if supplementation is necessary, and that HCG was an option, that ideally T would be 600+ for best health (not the 300 threshold that endocrinologists treat at)
Colin i have been off nearly three years, i’d say my condition has “stabilized” at this point.
Xhorndog, i’ve been giving some thought to what you have said and i think it is time that i sought out a doctor to help me. So after the holidays (I’ll be away visiting my family) I am going to see an Australian doctor that was recommended to me by Dr. Crisler.
Also, i came across an article that i thought you might be interested in, and possibly Dr. Mariano aswell. It’s about using stem cells to repair damaged prostates, in fact they grew an entire mouse prostate from a single stem cell. Obviously this is some way off from being used clinically, but gives hope that if, as Dr Mariano believes, tissue damage is the cause, then all is not lost by a long shot.
In mice, the researchers were able to make individual prostate stem cells grow into new prostates. The same kind of cells can be found in humans…The identification of single cells capable of generating an entire organ, they note, “has important implications for tissue repair and regrowth”…CD117 prostate stem cells can generate functional, secretion-producing prostates when transplanted," Gao and colleagues report.
webmd.com/prostate-cancer/news/20081022/prostate-grown-from-adult-stem-cell