Legendary, will you please comment on your side effects such as shrinkage and libido. That’s great you were able to restart your HPTA, but what about shrinkage, genital numbness, brain fog, sleep problems? There are people with PFS who have completely normal hormones, PFS is not simply a hormonal imbalance.
I last saw Dr. Bhasin back in November 2012 (at BMC). At that point, I remember him mentioning that he had seen a lot of guys with similar issues from Fin/Dut use, but he seemed unwilling to fully acknowledge “Post-Finasteride Syndrome,” that there were studies in progress, etc. But at least I could tell he was curious about learning more about it. I remember asking him if had a hand in any PFS study (because I thought I had read that about him)…but he said no (or “not really”). Then I later found out that he did…why he would downplay that, I don’t know.
After November, I had to see one of his residents. Although she was supposedly consulting with Dr. Bhasin, she was pretty ignorant (and arrogant) - she had heard of it, but said that “we don’t know if this whole post-finasteride thing is real” (with a very snide/dismissive tone). Since I had read so many stories here, I kinda lost it on her that day.
Who said Dr. Bhasin already knows that Clomid doesn’t work? If that’s true, I’d like to know why - after I crashed after my first round - he supposedly told the resident this past April that my only two options at that point were either TRT (which I adamantly refused again) or try Clomid again at a little lower dose…for a much longer period (with a “Clomid Holiday” at some point). I will be visiting him again (for the first time at BWH) this coming Friday. Has he recently had some sort of epiphany re Clomid?
Anyway, I certainly agree that our low T is just a symptom of a larger issue (i.e. altered brain chemistry and/or receptor problem) and that the low doses of Clomid he prescribes doesn’t cut it. But, again, if Dr. Bhasin knows Clomid (low-dose) doesn’t really work, he should damn well know that TRT doesn’t either. And both of my doctors so far have been pushing TRT as the first line of treatment. Makes me madder than hell, actually.
I am seriously contemplating taking Legendary’s post to him this week. However, I remember taking some literature to him the first time or two I saw him last year (even at that point, I had a feeling he was going to push TRT and I really wanted to give Clomid a try instead; so I armed myself with the online literature / stories re Clomid for Secondary Hypo). He reluctantly prescribed Clomid (but refused my request for an AI at the time). But when I first pulled out the literature on Clomid/AI, he said something to the effect of “I get a lot a patients who bring in literature/studies, and I am willing to take a look, but I really don’t like my patients trying to play armchair doctor.” I quickly told him (nicely) that my being pushy and playing armchair doctor is only reason I was able to get this far (see an endocrinologist and get some type of diagnosis).
Based on his conservative treatment so far, I think Dr. Bhasin would flat-out refuse to do anything like Legandary’s doctor (who is a half a world away and probably unknown to him). However, it also seems like there’s been some recent progress/enlightenment re PFS since I last visited him. And one would hope that all of these doctors from around the world are sharing information with each other. I will print out the post and take it with me anyway.
P.S. I can’t respond to PM’s yet (too new), so bear with me for now.
Is Dr. Bhasin a member of the PFS Foundation ?
Hi Mark,
It would appear so. A simple Google search revealed this:
pfsfoundation.org/news/clini … affiliate/
One would think I am lucky to have this guy, but so far to me he seems miles behind Lengendary’s doc.
no…
I hate to state the obvious, but that’s not exactly reassuring.
Still, here’s hoping Dr. Bhasin and his team go on to prove the contrary.
I wouldnt be too concerned about any past comments or inclinations regarding PFS. I think the medical community has finally awoke, especially with the neurosteroid study and the large study now being undertaken at BWH.
Hi guys,
I want to answer the queries about before and after symptoms of PFS and where things stand now.
Overall, correcting the hormone balance does seem to have addressed most of the symptoms I experienced, with two exceptions.
First the good news:
Libido is strong. I haven’t shagged since this started for fear of no-shows / shrinkage, but I’ve got the horn now and am really keen to get back on the market.
Emotional state is stable, no depression, with the exception of anxiety which I mention below.
Body composition is great, no more retention of body fat in love handle / chest area. I’m in the best shape I’ve ever been in, but I’m on the Slow Carb diet as well which really works.
Energy is excellent. That was crippling before I started treatment and dramatically affected my quality of life.
I’m not sleeping well. I fall asleep fairly easily but then wake up at about 3am and struggle to fall asleep again. I can’t in good conscience attribute that to PFS alone, though it may be a factor. I’ve had a lot on my mind and it hasn’t been a fantastic year so far. So that one is open to interpretation.
I haven’t had any episodes of the memory issues I experienced before, especially the “losing my train of thought in mid-sentence” thing. That happened regularly and there were even evenings when I suddenly couldn’t remember what I had done that day. This hasn’t happened since I started treatment. i.e. cognitve function seems greatly improved.
I haven’t had that dead dick feeling in months, though ironically had a glimpse of it last night. Woke up in the middle of the night and it wasn’t 100% dead, but a bit numb and reminded me of how horrible that felt before. Overall that seems to have been addressed with hormonal balance.
I do get morning wood again (morning semi really), which I did not get whatsoever before starting treatment. I mentioned before about that sexual “electricity” feeling that I had almost forgotten about. It’s mainly in the morning after waking. That was not present before treatment.
So that’s the good news.
The bad news is that the flaccid shrinkage and a fluctuating sense of anxiety have persisted. I strongly suspect the two are linked. Like the memory lapses before, the anxiety thing feels “artificial” for lack of a better word. I’ve had days when I’ll be having an awesome, chillaxed picnic with mates, and suddenly I can feel my heart rate increase and my junk shrinking. I’m not stressed whatsoever and have no need to be in that moment. It fluctuates wildly. There was a week somewhere in the last couple months when I felt 100% again, was hanging large and thought I had cracked this thing. But the last couple weeks have not been good from a shrinkage point of view.
Unfortunately the shrinkage thing is not my imagination. It’s not psychosomatic. I was never a big drug user, but did dabble a couple times back in the day. If anyone has experienced “pilly-willy”, i.e. major shrinkage the morning after ecstasy, then that’s the kind of thing I’m talking about. Some alone time in the bath resolves it temporarily, and erections are not far off from where they used to be, about 90% now. There is a dramatic dick collapse after ejaculation though.
As a side-bar, I have noticed that a couple glasses of red wine seems to alleviate shrinkage temporarily, as people have mentioned before. Also I suspect it is linked to the Vitamin D deficiency thing, as a couple minutes lying in the sun leads to spontaneous erections without thinking any sexual thoughts.
So that’s where we are. I deeply regret taking fin and dut for so long, and have no doubt that they have done some lasting damage to my brain and body. But I’m grateful that I’ve gotten a bit closer to understanding what is going on with me (i.e. symptoms of Secondary Hypo, but actually overactive aromatase etc) and can treat the majority of the symptoms.
If the shrinkage thing was resolved I really wouldn’t have any complaints at all. I feel completely healthy otherwise. I’m considering trying GABA supplementation to address the anxiety, which may in turn address the shrinkage.
Any thoughts on the above, then please let me know…
How bad is your shrinkage in terms of size and are you talking penis and balls?
Fina
Just out of interest, which if either of these studies did you sponsor or are you holding out on another?
Hi legendary,
How are you doing now ?
Legendary,
Great thread. Thank you. Please keep it updated for everyone following your story, and everyone who will follow in the future.
As for your progress - incredible. Shriveled genitals aren’t pretty, but look man, you’ve made outstanding progress in nearly every PFS metric - libido, erections, mood, brain fog, muscle composition and fat loss. Dude, by your own admission, you’re nearly back to your original self! And to top it off, this is some 12 years later, where, by most estimations your natural testosterone/libido/performance would have waned from aging.
Sleep is critical. I wouldn’t overlook that. I struggle with it myself, partly because of my shift work. Two benadryl before bed helps me fall and stay asleep. Generic benadryl is cheap and effective.
The key is really keeping the changes post-clomid. There’s a few long-term studies in the literature that dosed clomid “low and long” - ~25 mg eod, 1-3 years. Even 12.5 mg, eod, has proven effective at doubling male T levels. I’ll use this thread as a guide if I go down the clomid path.
This thread is really critical because it highlights the importance of competent treatment. So often, guys self-medicate or go TRT with an ignorant (however well-meaning) doctor, and fail. Then generalize TRT, or clomid therapy can’t work for everyone. This goes back to PFS fear mongering. Guys, we have to be proactive, take risks, and work with professionals that are knowledgeable about hormonal and male sexual health. Legendary provided us with a great example where a clomid restart protocol can work for guys with PFS! I’m sure lots of guys tried clomid here at high doses, for a week or two, got off it because the sides were difficult, and concluded the therapy is of no benefit. Wrong and dangerous. For stubborn guys, a restart protocol can last as long as a year, or more! We’re not talking a few days or weeks here with clomid guys. But 6 months to a year, maybe longer. The letrazole is critical, because clomid spikes estrogen. And high estrogen can crush libido. Probably also why many PFS guys who went TRT failed to improve, because estrogen wasn’t controlled properly! This isn’t simple stuff guys, and we can’t write off possible therapies so easily!!
Good job man.
All the best,
Hi Legendary,
Did you have a ‘crash’ then? This is a sudden and massive shrinking of your penis and contracting of your balls, complete loss of sensation in the genitals as well as disconnection - these symptoms don’t seem to fluctuate. This is also accompanied by a feeling of something ‘draining’ from you leaving you feeling lifeless, mentally and physically fatigued, unable to sleep, unable to take a piss properly. This is a classic PFS crash, all occurring in one episode and generally when you stop the drug. I’ve heard of others who have crashed on the drug and others who have just been left with symptoms. For people who crash, Clomid doesn’t seem to work for people. Can you clarify which boat you are in?
Thanks
Hey guys,
Time for an update.
Thanks for the kind words and interest in this thread.
Tumbleweeds: Thanks man, appreciate it. Couldn’t agree more re: Letrozole / Clomid being used in tandem, if you need to use Clomid at all. My Endo went so far as to say it’s a waste of time without an Aromatase Inhibitor such as Let.
Notcrashedyet: I had a crash post fin / dut that resulted in fatigue, terrifyingly numb dick and that “disconnect” thing. Absolutely. For me it definitely has fluctuated and I can honestly say that ever since I have started treatment, it has never been anywhere near as bad as the post-Fin / Dut crash period. There have been flickers of numbness, and I’ve lost girth and length. But equally, there have been flickers of “the old days”, thick, alive, engorged with blood. The piss issues I had were the opposite, I was going all day and night at one point.
For those new to this thread, the title probably isn’t relevant anymore. I haven’t been on clomid for a very long time, and for me at least, it was useful in helping to diagnose my particular condition rather than treating it.
The short recap is that after stopping Fin / Dut I developed the symptoms and hormonal profile of secondary hypogonadism. After treatment with clomid and letrozole, my Endo and I came to the conclusion that while I was perfectly capable of producing large amounts of testosterone, I had developed over-active aromatase activity i.e. much of this T was being converted into Estrogen via the aromatase enzyme. When my E spiked, it shut off my pituitary, resulting the symptoms and profile of secondary hypo.
So basically, I’ve only been on letrozole and various supps for quite some time. Overall, the treatment has been effective.
So what’s the latest? It’s been a see-saw experience the last couple months.
Basically this condition of elevated E via over-active aromotase seems to be extremely sensitive to illness and stress. About 2 months ago, I was in peak condition through heavy weight-training, strict adoption of Tim Ferriss’s slow carb diet and a manageable workload. I was tracking body composition via bio-impedance, since my Endo recommended that I get into “super-model” shape to reduce body fat and so reduce the required Let dosage. I felt absolutely fantastic. Strong, no anxiety and most importantly, flaccid dick was hanging large and in charge, just like the old days. No shrinkage. It was a Thursday and I planned on doing my hormonal profile tests on the Saturday to take a snapshot of my “ideal” state.
Then, on the Friday, I got food-poisoning. I very rarely get sick. It had been about 5 years since I had a cold or the flu. This was most ill I’ve ever been, never experienced anything like it. I didn’t get tested or take my meds for about a week and then I stepped straight into a stressful work contract.
Basically, I was not feeling right. General anxiety returned, near-constant shrinkage and deep fatigue. The symptoms that started off this mess. My suspicion was that either my E had spiked again, or that I had crushed it too low with the Let protocol. I stopped taking Let for a couple days (48 hours) and then retested.
E: 45 pmol/L Ref: 40 - 161
Total T: 23.8 nmol/L (ref > 12 prob does not require therapy)
SHBG: 18 nmol/L Ref: 11.8-55.8
Free T: 695 pmol/L Ref: 180 - 739
DHEA: 7.33 umol/L (Ref: for 30-39 year old male 3.2 - 14)
Cortisol: 335 nmol/L Ref: 101-535
Vit D: 42.3 ng/mL Ref: 30-100 Sufficiency
Cholesterol Total: 4.1 mnol/L Ref <5
LDL 2.2mnol/L Ref:< 3
HDL 1.5 Ref > 1
Triglycerides: 0.8 mnol/L
Overall, the results were very good. But my E was low. My suspicion is that I had crushed it too low with Let (hadn’t taken Let for a couple days before testing). This was kind of good news, as opposed to the alternative (high E) because it meant I could lighten my let dose, and (hoping against hope) perhaps my aromotase activity was calming down.
Other insights: my Vitamin D had almost doubled, so my supplementation of 50 000UI twice per week was working (previous test was in the low 20’s.)
DHEA: No real change here, my 50mg per day dosage of micronised DHEA supps didn’t seem to be doing much.
I stopped taking anything for 1.5 weeks to see if Let was the cause of the symptoms. Symptoms remained unchanged, so I restarted back to 1.25mg per day of Let.
And now? I feel pretty good. Biggest issues are still general anxiety and shrinkage. Energy, mood, muscle mass etc are all good. The anxiety and shrinkage are still very worrying though, which I’m sure creates a bit of a positive feedback loop.
So for those who ask if my condition fluctuates, the answer is absolutely. But for me, it is not random. It’s directly linked to periods of stress, illness and lack of sleep. The healthier I am, the more stable, the heavier weights I push and the better I eat, the fewer symptoms I have. To the point where for a couple weeks I felt sensational. For my age, 35, I’m in pretty great shape at the moment.
Random sidenote: my overall cholesterol and “bad” LDL cholesterol have dropped by almost 30%. I attribute this to the slow carb diet which I had started post my previous tests. It excludes all dairy and starches for 6 out of 7 days per week. I eat 3-4 whole eggs everyday as well as prawns and calamari and tablespoons of butter. For me, butter, eggs and dietary cholesterol does not result in high blood cholesterol. I believe that results from dairy and starches.
Overall: I suspect the anxiety / shrinkage is linked to GABA / nitric oxide in some way. When I have a couple drinks, flaccid dick hangs. When I supplement with GABA same thing, but not as extreme. When I occasionally pop a tadalafil, very rarely, it hangs large and in charge. Exactly what Fin has done on a neurotransmitter level, who knows.
Advice for others:
If, like I did, you have symptoms and profile of secondary hypo, I’d suggest trying Letrozole on its own as a first step. Test before, try it for a couple weeks, retest and track your progress through a daily diary. If you’re lucky enough to do this via an awesome Endo like I was, then great. But I’d suggest that as a first step, before Clomid. the side-effects of Let have barely been noticable. Side effects of high-dosage Clomid are dramatic.
Good luck guys, chat soon
Hi Legendary,
Thank you so much for posting so much detail and answering so many questions. I have one more for you. We’re all different but I think some of us fall into clearly separate categories, to me this question is a big separator.
Since your crash (before and after treatment)… did you ever experience neurological symptoms after ejaculation/orgasm?
Let me describe it… I find that within 2-3 hours of ejaculation all kinds of mental/neurological side effects show up or get worse. At the beginning I might feel a kind of “pressure” and “thin air” sensation around my face which is obviously not physically happening. I will have trouble visualizing things and almost feel like my vision is blurry even though it’s fine. Sometimes I will misidentify words or numbers at first glance.
I won’t be able to think of names and words. I’ll have trouble with math and technical tasks. I’ll feel confused and forget what I am doing…become totally aimless at work…and my speech will become more troubled, with more words and phrases said out of order, or two synonymous words jumbled together. The peak of each “challenge” arrives individually but after 2-3 days, all improve back to a crappyish baseline which is a substantial downgrade compared to my pre-crash mental acuity. I was a technical architect who could whiteboard whole systems from imagination, remembered everyone’s name and was occasionally called a human thesaurus or human encyclopedia, always excelled at word-based party games, etc. it’s really a noticeable and remarkable change.
Also, most of the time in these post-ejaculatory “minicrashes,” my dick and nuts will hurt when touched, instead of feeling nice or just numb/rubbery.
You had marked the “brain fog” and “slurred speech” boxes in your intro post. I wonder if your experience includes some symptoms similar to mine…or if these were just more general and didn’t seem associated with orgasm.
Good luck and thanks again for being generous with your time and info!
Regards
GW
Good to hear you have things largely in check.
So when you have your E under control, are you free of most or any sexual sides, I.e. libido, ED?
Also, does managing your E seem to have a direct effect on your sleep? Was sleep/insomnia a side you experienced earlier on?
Thanks for updating us.
Graywire:
Most of the cognitive issues I experienced were while I was on Fin / Dut. I’d never associated them with those drugs until the very end.
One specific thing that used to happen was that I would be mid-sentence, and suddenly become aware that I was about to lose my train of thought. And I would then forget what I was talking about completely. A few times, in the evening I couldn’t remember what I had even done that day. And I was aware of slurring speech as well. Since I started treatment I have not experienced these cognitive issues. It’s a marked change.
I haven’t experienced the post-ejaculation cognitive issues that you speak of, but I have experience a dull ache in my left testicle post-ejaculation.
OhioGuy:
My main issue is flaccid shrinkage. Like just generally during the day, for no reason at all. It’s extremely stressful, but it fluctuates. If before all this it was hanging normally 90% of the time and shrinkage 10% of the time, now that figure is reverses. I have morning wood and get erections. Libido and general sexual performance is hard to gauge because I haven’t had sex in a ridiculously long time, because I’m so paranoid about what will happen. Will everything be normal or not? Before treatment I wasn’t having nocturnal erections / morning wood at all, and didn’t have that “sexual electricity” feeling. Now I do. I totally agree that there is more going on with PFS than just hormonal imbalance, definitely something neurological at play as I feel serious general anxiety for the first time in my life. But for me at least, getting the hormonal balance right has still made a huge difference across the board.
Previous question about shrinkage: It’s dick and balls, and it fluctuates. At best, after a couple glasses of red wine for example, it hangs like the old days, at its worst…just imagine the worst shrinkage post icy water skinny dip you could possibly imagine. Scary shit.
legendary, did you have narrowing of the penis?
this one affects me the most. i think everyone does, i now feel less of a man though i have normal erection but needs constant stimulation.
Legendary, thanks for your reply! This whole experience (unwelcome as it is) has exposed so many fascinating aspects of human variation and the incredible sophistication of the body. If only they had the resources to study us all in depth, I think many other conditions could benefit too.
I’m sorry to hear that you’re still nervous about having sex and that you’re still facing the anxiety problems. But I want to encourage you to give it a shot!! I have heard a few stories from girls about guys who couldn’t get it up the first time and it didn’t seem like a big deal. And likewise one of my guy friends told me about hooking up his ultimate fantasy girl and losing his erection just as he went to put on the condom, and the girl was totally cool (I can’t remember if he ate her out or just cuddled etc.) anyone who reacts really badly wouldn’t be someone you’d want to be with anyway, so fuck it!
If your anxiety continues to be a problem I’d be curious to see an AM/PM salivary cortisol test but hopefully it will just subside like it did for me. Exercising and eating right may have helped too 
I know we are all different and our problems are real but I think your positive mindset has helped a lot, at least your positive mindset has helped me! Thanks again and good luck!
Hey guys, just a quick update.
Something is going very, very right at the moment. I went and had some bloods taken this morning just to take a snapshot of where things are for future ref, so will send an update on that soon.
Basically started this year with a new plan and regimen, and have been keeping a near-daily diary to track progress. My main remaining issues for those new to the thread were shrinkage and general anxiety. Mainly flaccid shrinkage, but also not quite reaching the heights of before in erect state. And anxiety was generalised, almost all times, for no real reason, with major accompanying shrinkage.
So to start the year, decided to get back on Letrozole (stopped taking towards the end of last year, wanted a break). I’ve been on 2.5mg daily for 3 weeks now. I coupled this with daily morning “pipe-checking” sessions. Basically in a warm bath, putting my guy through his paces before starting my day. There is a fantastic book called the Multi-Orgasmic Man which I highly recommend you check out, has a variety of exercises etc. And the third variable is Bikram Yoga every other day. I’ve taken no supps, Vitamin D or DHEA during this period. And as usual, I’m on a slow-carb diet which reduces body fat. Less fat = less aromotase activity, which is my main problem.
Guys, I have barely had any shrinkage during this period. He’s been hanging large, full and in charge, just like the old days. And I am, wait for it, horny. Like proper, old school horny i.e. spontaneous erections, electricity, the whole shebang. I’d put things at 90% sexually, bearing in mind that I’m almost 36 years old now as well. Anxiety, also 90% back to normal. Energy levels slightly less, say 80-85%.
I do feel the morning pipe-checking sessions are the main factor here, in addition to the Let of course and staying healthy with Bikram. But giving him a daily workout has made a real difference.
I don’t like to be dependent on meds obviously, so the next step is to start supplementing and pushing weights so that I can lower the Let dosage. Hopefully phasing it out eventually. And now I have a blood snapshot of where I want to be.
Feel very positive guys, hope this lasts…all the best
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