Just want to reiterate what was already said… stay away from anything with saw palmetto.
I appreciate you sharing your story, Aero. I’ll continue to check in on you hoping you improve.
I already posted the following in the blood tests section, but I thought it would be worth including it here as well so that all of my info is in one area:
"I typed everything that I have available to share into a spreadsheet; I hope you all have Excel. If anyone has any specific questions in regards to the circumstances of these tests, please let me know.
Also, I am going to have an additional blood test performed in a month or two; does anyone have any specific ideas about what else I should be testing? I already saw the “short list” and the longer list and each of them seem ridiculously long to me, so I’m hoping that someone can suggest a few key markers that are more significant (i.e. the 3a-diol-G that I’ve noticed mentioned on here) so that I can streamline my testing request the next time around.
Thanks,
AeroEngr"
Summary of Blood Test Data.xls (31.4 KB)
I have been on Clomid (50 mg twice a week), Arimidex (1 mg twice a week), and Cabergoline (0.5 mg twice a week) for over two months now. I still have all of the physical, sexual, and cognitive difficulties that I reported to everyone earlier; but now, I am finally beginning to feel a little bit better.
I lost a lot of muscle mass and stamina last year and so even if you presume that I am now “hormonally correct,” I think it would still take me at least several months and possibly over a year to regain most of what I lost; I’ve simply never been this weak before, so it is probably impossible for me to accurately estimate how long a recovery would take. At this point, I have no idea if I will actually fully recover, but there does seem to be some promise here because I have been able to gain some muscle mass and improve muscle tone over my prior post-Propecia levels.
Sexually, there are finally some signs of life; I am presently several orders of magnitude below my pre-Propecia levels of performance, but now at least I seem to be slowly gaining some ground with time. Up until the end of last year, I would have reported that my libido was 0%; now I would report that my libido is <1%. I realize that’s not much, but at least I can say that it’s now non-zero. The anal and genital pain has been reduced, so that now I only feel pain if I sit for prolonged periods of time or if I attempt sexual activity. I still have erectile difficulties, have reduced sensitivity to genital contact, experience sensations of genital numbness and detachment, and also still do not experience the “warm/tingly” or “butterflies in the stomach” sensations of arousal and infatuation that I used to feel when I met a new and otherwise interesting girl.
Cognitively, I still struggle with memory forming and memory recall, and problem solving to a certain extent; I’m not sure if these are getting better or not at this point, though I’m now optimistic about making some sort of a recovery in this regard. A lot of the emotional distress that I’d been experiencing has begun to let up as well, and this is helping me in this area too; the reduced depression and anxiety factors in my life have made it easier for me to focus at work and do my job, instead of worrying about my health all the time.
Just yesterday I started trying 1/4 tab (25 mg) of Viagra daily to try to improve libido (and erection quality); as I recall, according to Dr. Goldstein (who prescribed me this medication), for some men, the quality of their libido is tied to the quality of the blood flow to their genitals. Hopefully this will eventually be of help to me as well, though unfortunately at this point I can’t say much for it after my second day of consuming it.
Your T is almost out of range high, but your FSH is almost out of range low. Why do you think that is?
I’m not seeing where his T is out of range high unless I’m misreading something.
You had a lab on Sept 16, then another testing some of the same values less than 24 hrs later?
I was consulting with two different endocrinologists concurrently at the time; that’s why some of the data points are close together. By the time I got as far as this, I decided that it would be best for me to seek multiple independent opinions since nobody really seemed to know what was going on. I didn’t tell these doctors that I was also seeing other doctors, so that I could be sure to avoid any tendency towards groupthink on their part.
I honestly have no idea what’s going on with FSH; it has always been very low, for all of the tests that I have had performed. It has improved with the medication, however; if you look back in time you’ll see that it was actually below normal ranges for a few of these earlier tests.
This is actually a very common problem in the blood test results. More should be made of it, a bit like 3aDiolG. I have been told that ‘Inhibin’ inhibits FSH. Therefore I suggest you get tested for your levels of Inhibin.
Post -propecia loss of libido isn’t anything to do with erection quality, it’s to do with nothing whatsoever ‘happening in your head’ when you see a girl you like, porn ,whatever. I had a low libido throughout fin but it was nothing like this, didn’t encounter it until I crashed. Boosting your erection quality isn’t going to change this, although it might help maybe push you up another 1-5% I guess through being able to perform, basing this on my own experience.
Aero Engr: has Goldstein said anything about the ‘dent’ you have on the penile shaft, and how it might relate to Peyronie’s Disease? I have this too.
Also, you appear to have had extreme side effects (svere brain fog, ed, muscle loss) while on the drug. Am I right in thinking that these continued after you quit, rather than getting worse, and that you didn’t have that crash in symptoms many of us get?
The hormonal drugs that I’ve now been on for about three months have done next to nothing to correct the lingering sexual dysfunction issues; I’ve probably gained <1% or something that I can’t really measure in terms of libido, up from 0%, and that’s about it. Before Propecia, with only a soft touch my penis would stand up immediately and stay there big and hard and ready for action. I didn’t even require physical contact to achieve and maintain erections; I did this very frequently with only having an arousing thought or having an arousing image presented to me, and arousal often occurred spontaneously too. My libido was extremely powerful and I was aroused quite easily and often; I thought about sex almost constantly throughout the entire day, no matter what I was (or was supposed to be) doing at the time. I had always thought that my libido was too intense and may even have been unhealthy, actually, due to the fact that I was often distracted from doing other things and it interfered with my work because I had these persistent sexual pressures acting on me in the back of my mind (and it nearly got me in trouble a few times). What I would give to have it back!
At the moment, post Propecia, I basically cannot have a sexual thought or arousing emotion, even if I try to do this deliberately; it’s almost like I have an attack of sexual ADD when I try to do this to assess where my libido and sexual health now stand post Propecia (periodically checking to see if there is improvement). I’ve tried flipping on pornography and all of that stuff and there is absolutely no response or interest on my part, and in fact, I can even get distracted from watching the pornography to do other things around me; in the past, when a pornographic image came in front of me I would zoom in on that thought and block out all outside distractions until the sexual thought was satisfied (either through masturbation or similar fulfillment, or doing something else like going out jogging or another intense activity that could totally break my train of thought). I am now a painfully lonely person, and I think more than anything else this accounts for the reason that I now report a non-zero libido, even though I cannot actually detect one; I am so lonely I would do anything to have a female friend around, even if it required me to deal with the embarrassment and the struggle to perform a sexual act with her in order to keep her.
Presently, I can obtain an erection only with direct and intense stimulation, and this erection is significantly softer, smaller, and easier to lose than my erections before Propecia. When I do obtain an erection, my libido does improve slightly to the point where there is some small desire to continue the act, but this desire is still very insignificant (<1%) compared to what it would have been before my experience with Propecia. I begin to ejaculate prematurely before orgasm, the orgasms are very weak, and I am left with an achy penis and anus for hours after I ejaculate; everything is just a mess down there. The Viagra doesn’t do much to improve my situation either; it may make the erections easier to keep (good enough to get me over the hurdle of pleasing a female partner perhaps), but far more than anything else I feel that the fundamental problem is that I simply do not enjoy sex anymore, and (for a number of reasons) I now actually seek to avoid it rather than seek it out.
I mentioned the dent in the shaft of my penis to Dr. Goldstein when I saw him last October, but for whatever reason, he didn’t seem to notice my comment or the mark itself. I suppose he may have been preoccupied with more pressing issues that came to his attention during the exam, such as the fact that he was in the process of measuring nerve damage (loss of hot/cold sensation) in my flaccid penis and significantly reduced (down 50% from normal) blood flow into the erect penis. I am planning on driving down to see him again sometime early this spring, and when I do I will bring this up with him again and will also try to talk to him about other issues (such as the prostate pain). I don’t know if he would have said it was Peyronie’s disease; through the ultrasound, he determined that I have no plaques inside my erection chambers (I think this is what defines Peyronie’s).
Personally, I am of the opinion that the dent came from minor tissue death or the bursting of smaller blood vessels near the surface of my penis in that area. The dent is definitely detectable when my penis is flaccid; it is located in the middle of the pink foreskin area near the end of the shaft of my penis (just below the head), on the underside of my penis, towards the right hand side. When flaccid, this dent is about the size of a dime in diameter and is several millimeters deep. When erect, the depth of the dent actually seems to decrease, but it grows greatly in diameter to be about the size of a half-dollar. When my penis again becomes flaccid, after having experienced an erection, the dent seems to be more pronounced in my flaccid penis than it was in my pre-erection flaccid penis. There is some aching pain associated with this dent as well, especially after having erections and attempting sexual activity. Viewing this mark/dent in my erect penis, and comparing it with the undented area on the opposite side (lower left side) of my penis, it looks as though the soft cushioning between the surface of my penis and the erection chamber has disappeared; an analogy might be to compare the undamaged lower left side of my penis to the cheeks of my face, while the damaged portion could be compared to the area under my eyes where the skin is much thinner and you can see veins and feel the bone underneath if you press on it. I don’t know if this is something to be worried about or not; it doesn’t seem to be getting bigger or smaller with time, even though it has been there for over six months now, and the pain is relatively insignificant compared to all of other issues that I have to live with.
Looking back on it, Propecia essentially gave me instant hypogonadism the first time that I took it, though at the time I was unaware of the true significance of the issue because the doctor prescribing it never checked my testosterone levels and also because the manufacturer said that side effects would work themselves out with time with continued use. After quitting, I continued to have almost all of the side effects; there was almost no net difference between how I felt for the period that I was on the drug and for the period after I quit the drug. I just know that my body stopped producing testosterone on the very first day that I consumed the drug. I felt the sensations of testosterone and “manliness” leave my body with exponential decline, until they did not decline any further; I hit rock bottom on about day 4 or 5, and that is where I stayed. I only took Propecia for 5 weeks altogether, but even after all of that additional time I did not sense that my testosterone/manliness changed upwards or downwards between day 5 and week 5 while on the drug; all of the significant changes were experienced in the first 4 or 5 days only (other than the steadily progressing body wastage, and accelerating depression). Even months after I quit the Propecia, I did not feel any better; I felt basically the same months later late in 2010 as I did on day 5. I never experienced any sort of a short-term recovery to normality ~3 weeks after quitting, and then the crash that a lot of members on here are reporting; I experienced the crash beginning on day 1, hit bottom, and that is where I stayed for almost a whole year until I began the Clomid, Cabergoline, and Arimidex prescribed through Dr. Goldstein.
The body wastage was the one thing that actually got progressively worse even after quitting the Propecia, but I think the reason for this is that my body took a few months to throw away all of the muscle mass that I’d acquired over a lifetime (5 weeks apparently wasn’t enough time to do it); basically, I think it took a few months for the appearance of my body to more completely reflect my hypogonadal state, and this is why the wastage continued.
I did have the most extreme side effects while I was one the drug for sure. The drug directly induced depression and brain fog while I was on it, and these were the only two symptoms that alleviated somewhat after I quit the drug. The depression was incredibly significant; I had persistent thoughts of death, of dying, had death anxiety, and spent a lot of time worrying about religious issues and about whether I would prefer to be buried or cremated after I die…really crazy and scary stuff that I’m ashamed to admit here. I moved in slow motion everywhere I went; I moved like a sloth, brushing my teeth slowly, dressing myself slowly, walking slowly, etc. I also became somewhat afraid to touch things (like accidentally brushing my shoulder on the wall of my apartment as I walked around the corner); touching other objects seemed to disturb me in some way that I have trouble explaining in writing here. Anyways, luckily, by the time that week 5 rolled around and I began to openly communicate my opinion that it would be better to be dead than alive, that I finally had enough of my wits left about me to finally say, “Ok, this isn’t working out…I need to stop this sh*t in order to save my life.”
After quitting the Propecia, the “chemical” depression went away in a few days, along with much of the confusion/brain fog; however, the “chemical” depression was soon supplanted by “facts of life” based depression after a few weeks off the drug (once I realized that the side effects were likely permanent). I started to suffer depression and severe anxiety and anger about the probability of never having a spouse, never getting a family, persistent body wastage and pain, never having an enjoyable sexual experience again, career derailed, etc. The whole time I was on the drug, and for a few weeks after quitting, I had always believed that the side effects would go away; once I stopped believing that they would go away, that’s when I started to experience increased emotional turmoil again.
At the present time, after a few months on the hormonal drugs (Clomid et al.) the sexual side effects are for the most part the only problems that I full-on continue to live with and continue to fear that they may be permanent; I have a sense that I can undo the body wastage with 6-12 months of solid effort in the gym, the cognitive impairment isn’t quite as bad, and a lot of the depression and anxiety and other emotional issues have been mitigated as well, though I won’t know for a while if these will come back 100% or not.
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Thanks for sharing your story and outcomes. We share alot of symptoms.
Please keep this thread updated. I’m hopeful you’ll find something to get the libido back again.
Sounds like the Cipro was not very helpful.
aero, you articulated many of my points very well. I’m going to highlight them in my own thread. The feeling you describe when having sex, getting erect and gaining some libido (though very little), premature ejaculation, and just plain avoiding sex are dead on.
I think this is a feeling that many of us feel post propecia. Before I would get erections at the drop of a hat, and sexual arousal was overall far more intense. Now there is no intensity, no aroused feeling around the body - just some pleasure when ejaculating.
The drug affected me from day 1 looking back at it too, especially with depression and brain fog, although no constant drop in libido or erectile dysfunction, just some phases. The severe sexual side effects came about only after I quit the drug and my body crashed.
I wish you the best in recovery and I am sure you will make at least some progress with Goldstein.
I am going to schedule another blood test to take place late this coming week. I am intending to perform tests to revalidate the numbers for total testosterone, free testosterone, DHT, SHBG, estradiol, FSH, LH, and prolactin, that I had already taken on December 16th to check the effect of the Clomid, Arimidex, and Cabergoline on my system. In addition, I will be requesting a complete blood count (CBC), and will test for levels of activin, inhibin, androstanediol glucuronide (Adiol G), and androsterone glucuronide.
I’m considering making a request to also test for androstenedione, androstenediol, cortisone, corticosterone, aldosterone, deoxycorticosterone, progesterone, pregnenolone, 17-OH progesterone, and 17-OH pregnenolone. These are additional tests that I see posted on the “long list” of recommended blood tests noted on this forum.
I’ll post the results when they’re available.
AeroEng,
Respectfully, 1 mg of Arimidex (anastrozole) twice a week has likely taken your estradiol levels significantly below 20 ng/dL (how many weeks have you been on this dose?). At these levels even non PFS sufferers (e.g. bodybuilders in PCT) will have zero libido. Also, at levels of 18 ng/dL or below osteoperosis becomes a considerable concern (you need estradiol as part of your body’s system which controls calcium/bone mineralization levels). You also run the very real risk of crashing your estradiol synthesis completely. If this occurs (E < 15 lets say) you will need to stay off the drug for 6 weeks to see if you rebound (most do).
The drug is designed to lower the estrogen levels of female breast cancer patients having estrogen responsive tumors, and therein is the concern - even a PFS sufferer that has both 5AR1 and 5AR2 pathways suppressed, and thus high estradiol levels, will still be below that of any pre-menopausal female.
One quarter of 1 mg Arimidex taken twice a week is a much more reasonable dose. Ideal levels of estradiol, for libido and frequent morning erections, are anecdotaly reported to be in the 22 to 30 ng/dL range. Morning erections are used by some as a barometer of whether estradiol is above, in, or below proper range, not sure of its utility in PFS. Bodybuilders in a cycle will use Arimidex in liquid form, and adjust droplet amounts where droplets are 0.05 mg each.
Kudos to you for getting inhibin tested (specify inhibin B, as inihibin A is only present/tested for in infants). Please note that activin, which, like FSH, balances inhibin levels is not available for evaluation outside of an R&D laboratory. Also, based on several follow up inhibin levels I’ve had taken, will soon be able to state definitely whether clomid reduces inhibin levels (it is logical that it should, shortly will have had two tests on, and two tests off clomiphene). Regarding clomiphene, your dose seems reasonable, but be aware that it can act to mask receptors responsible for sexual stimulation (see the My Recovery via Clomid thread).
Many of the other metabolites you mention, (with the exception of progesterone & pregnenolone themselves) in your second paragraph on testing are best evaluated using a 24 hour urinary steroid profile. Getting this type of test run will allow you (or one of us) to calculate your 5 alpha to 5 beta reduced metabolite ratios. This is the next data set (after adiol-G) that we’re trying to correlate. Knowing these ratios may help define wether the corisol/adrenal system, or some other system, is more strongly affected by your particular PFS altered homeostasis. See this thread:
viewtopic.php?f=4&t=4674&hilit=ratios
My estradiol level is at 30 pg/mL, per my latest blood test on December 16th. The reference range for this was between 8.0 and 35, so this would put me at high-normal levels for an adult male. My estradiol levels were actually a lot lower before I started the Arimidex, and the Clomid and Cabergoline; one of my pre-drug therapy tests measured it at 18 pg/mL. I’ve been on those drugs for close to three months now, and so far I have only had positive experiences with them. I’m already aware of the significance of estradiol for libido and bone density, and I do not see anything in my data with respect to my estradiol figures that are of concern to me. You reported below that estradiol levels between 22 and 30 are ideal for libido, and that’s where I’m at right now.
I was not aware that activin was not testable through a local doctor, nor was I aware that may of the other tests that I mentioned in my second paragraph were best performed as urine tests. I am going to see my doctor on Monday morning to discuss these tests with him (and the issues you mention below) and get more information before I proceed to do any of them. There is simply a ton of information out there with respect to the significance of these tests, both on and off of this forum, so I really have to vet this list with a doctor before I end up going crazy over all of these details. I will inquire about a 24 hour urinary steroid profile in addition to, or in place of, a blood test for these metabolites.
I am presently consuming Clomid 50 mg twice weekly, Arimidex 1 mg twice weekly, Cabergoline 0.5 mg twice weekly, and Viagra 25 mg per day. My plan is to continue to do so until I receive the results of this next series of hormonal tests and/or guidance from Goldstein or another doctor.
Hope to hear how you’re doing soon. 
Thanks for the elaborate thread, it articulates extreme PFS extremely well.
Keep us updated matey
Does anyone have any thoughts regarding the safety of Differin? Now that I am using Clomid and these other drugs, I am having some issues with facial acne due to the elevated testosterone and sought advice from a dermatologist (who prescribed Differin to treat me for it). I have already tried using that Proactiv stuff that they market on TV, but it doesn’t seem to be very effective so far.
I know that there is a drug out there called Accutane and I’ve heard the horror stories associated with it, which like Propecia, include sexual dysfunction; I don’t want to potentially be in the same position because of Differin usage.
Just posting again to follow up and let you all know how I’m doing. I’m still taking the Clomid, Cabergoline, and Arimidex to manage my endocrinology. In addition, I am still taking the 25 mg Viagra daily to try to increase genital blood flow and libido. I also visited Dr. Goldstein in San Diego for a second time earlier this spring and was taught how to give self injections into my penis to induce an erection directly.
After five months on the Clomid, Cabergoline, and Arimidex, I am finally in a position where I think I can say that I will almost definitely recover fully from the extreme body wastage that I experienced last year. I continue to suffer from intermittent bouts of depression (basically just being bummed out about life) but these are becoming less frequent with time, as I can now see my body figure beginning to recover and just generally I’m more hopeful about my prospects for a recovery than I was a year ago. I also continue to be prone to the attacks of anger and frustration that I began to experience after I discontinued Propecia and suddenly realized that the side effects were not going to go away, but again, these are becoming less frequent and less intense with time. I still have some cognitive impairment, and I think this shares the same root cause as the cause of the depression; hopefully with time, the depression will go away and so will the cognitive impairment along with it.
On the issue of sexual side effects, there has been little improvement to date. I have, however, begun to experience notable relief from the prostate/anal and genital pains that I had been living with this whole time. I am pretty sure the root cause of those pains had to do with the prolonged period of low testosterone being insufficient to support the health of these sexual organs (thus they began to atrophy and became less robust and more prone to fatigue and pain), and also with the body wastage in general because I know that my pelvic floor must have become weakened along with the rest of my body as everything wasted away (the pelvic floor is the part of your body that supports your genitals and the surrounding organs and basically keeps everything in its proper place in your lower body). I still have this nasty dent on the lower-right side of my penis (still associated with some minor pain), a less significant defect on the upper-right side of my penis which is basically a series of unattractive wrinkles similar in color to the dent, and some weird pigmentation on the head of my penis including white spots and a lack of pigmentation in general (less pink, now looks a bit more purplish than in the past).
Unfortunately, I remain quite impotent as I cannot get an erection induced via visual or auditory stimulation, and cannot induce an erection via soft/gentle touching and stroking; the only way to “get it up” is to use intense and direct stimulation on the penis but unfortunately this sort of rapid stimulation is impossible to maintain in a vaginal penetration scenario. So at the moment, if I wanted to engage in sex with a partner I would need to make use of the penile injections and/or take heavier doses of the Viagra than what I have been taking (I’m still trying to figure out the appropriate dosages of each that I need to take in order to make this happen). In addition, as far as I’m aware, I remain completely flaccid throughout the night (no nocturnal erections), and I do not experience any sort of spontaneous arousal during the day.
My libido is way down and is nearly zero, however, with my testosterone back up my aggressiveness is returning and with the body wastage going away I am feeling much more confident about myself and have become more willing to associate/socialize with women because I am less embarrassed about my situation and feel less shame for my predicament. I think that if I were able to achieve an erection normally (maybe even if I used the penile injections), regardless of whether or not I think would enjoy sex (reduced orgasm, genital numbness, genital detachment, emotional detachment, etc, are all still problems for me), I would pursue it merely out of a desire of mine to have control over my life again.
Right now, I am nominally favorable towards pursuing a relationship with a girl because I know I would enjoy their companionship again (just having lunch with one again would be a milestone for me), but then again, it is also true that it could easily develop into a very frustrating situation for me, as I would be very hesitant to go past second base with her (and hence to get together with any girl at all) because I know that my sexual performance is severely compromised and I am totally unsure of how a situation like that would play out. I know for sure that I can get an erection if I use an injection; however, it just isn’t the same for me because there is an absence of arousal and because I know that I need to have a syringe with me in order to obtain an erection, that I cannot be as open as I would like to be sexually because I will always worry about having to have “my erection kit” with me at all times. And of course, finding a way to hide a syringe on you during a date, and then to use it without her knowing, is going to be exceptionally difficult; otherwise if you don’t hide it, then I’m sure you all understand how awkward it would be when you’re “in the moment” with a new girl to have say, “excuse me for a minute, I need to stick this needle into my penis before we can proceed further.”
At the moment, I am taking no other drugs to treat me for the post-Propecia side effects that are ongoing. However, I have been talking to Dr. Goldstein on the subject of what else we can do to deal with the hyposexuality disorders that I continue to experience, and the drugs that came up for discussion included bupropion, symmetrel, naltrexone, oxytocin, and yohimbine. I will likely begin the usage of one or more of these other drugs soon. We also discussed the utility of taking something like Ritalin or Adderall to aid my ability to focus on “the moment,” but at this time, I am not agreeable to trying these two drugs because I do not think they would be addressing an identifiable problem with my sexuality.
I’ll update everyone here again in perhaps 4-6 weeks once I go through another round of experimentation with these additional drugs, and also after I figure out the best combination of the penile injections and Viagra.