Where are you from (country)?
A long story but let's say Ireland for the sake of argument.
1) How did you find this forum (Google search -- if so, what search terms? Via link from a forum or website -- if so, what page? Other?)
2) What is your current age, height, weight?
26, 1.81m, 80kgs
3) Do you exercise regularly? If so, what type of exercise?
Always been very sporty, but not currently exercising.
4) What type of diet do you eat (vegetarian, meat eater, raw, fast-food/organic healthy)?
Omnivore; reasonably healthy, varied diet.
5) Why did you take Finasteride (hair loss, BPH, other)?
6) For how long did you take Finasteride (weeks/months/years)?
7) How old were you, and WHEN (date) did you start Finasteride?
05.05.2012, I was 20
8) How old were you when you quit, and WHEN (date) did you quit?
02.05.2012, I was 21. However I quit one month prior to this (without bringing about PFS) before taking my final dose on 01.05.2012
9) How did you quit (cold turkey or taper off)?
10) What type of Finasteride did you use – Propecia, Proscar, Fincar or other generic?
11) What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)?
1.25mg (average) per day.
12) How long into your use of Finasteride did you notice the onset of side effects?
In hindsight there were signs after a month but I only became acutely aware perhaps two months before quitting.
13) What side effects did you experience while on the drug that have yet to resolve since discontinuation?
Put an X beside all that apply:
[x ] Loss of Libido / Sex Drive (only reduced, not complete loss)
[ x] Erectile Dysfunction
[ ] Complete Impotence
[ x] Loss of Morning Erections (only reduced)
[ x] Loss of Spontaneous Erections (only reduced)
[ ] Loss of Nocturnal Erections
[ x] Watery Ejaculate
[ x] Reduced Ejaculate
[ ] Inability to Ejaculate / Orgasm
[ ] Reduced Sperm Count / Motility (unknown)
[x ] Emotional Blunting / Emotionally Flat
[x ] Difficulty Focusing / Concentrating
[x ] Confusion
[x ] Memory Loss / Forgetfullness
[x ] Stumbling over Words / Losing Train of Thought
[ ] Slurring of Speech (perhaps)
[ x] Lack of Motivation / Feeling Passive / Complacency
[ ] Extreme Anxiety / Panic Attacks (only at a certain stage, see below)
[ ] Severe Depression / Melancholy (only at a certain stage)
[ ] Suicidal Thoughts (only at a certain stage)
[ x] Penile Tissue Changes (narrowing, shrinkage, wrinkled)
[ ] Penis curvature / rotation on axis
[x ] Testicular Pain
[ x] Testicular Shrinkage / Loss of Fullness
[ x] Genital numbness / sensitivity decrease
[ ] Weight Gain
[ ] Gynecomastia (male breasts)
[x ] Muscle Wastage
[x ] Muscle Weakness
[x ] Joint Pain
[x ] Dry / Dark Circles under eyes
[ ] Prostate pain
[ x] Persistent Fatigue / Exhaustion
[ ] Stomach Pains / Digestion Problems
[ ] Constipation / "Poo Pellets"
[ x] Vision - Acuity Decrease / Blurriness
[ ] Increased hair loss
[ ] Frequent urination
[x ] Lowered body temperature
[x ] Other (please explain)
reduced beard growth
dry skin, reduced acne
increased ease of skin infections
more time to heal cuts, bruises or other injuries, and increased scarring
small dents on nails of hands and feet
difficulties (various) sleeping
reduced social nervousness around women
14) What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug?
Red yeast rice (statin) WARNING: bad effects, see below
green tea capsules (partially effective)
Coconut EFFECTIVE: but with caveat, see below
Ibuprofen (partially effective)
Creatine (partially effective)
Resistance training (partially effective)
Niacin WARNING: bad effects
15) If you have pre or post-Finasteride bloodtests, what hormonal changes have you encountered since discontinuing the drug (pls post your test results in the "Blood Tests" section and link to them in your post)?
I have 3 post-Finasteride results: will upload them shortly into this thread, below.
16) Anything not listed in the above questions you'd like to share about your experience with Finasteride?
The syndrome 'shifts' when I take different self-administered treatments and in some cases remains in its new "state" permanently. After some treatments everything improves, for others some symptoms improve while others get worse, and some leave a more or less permanent effect (usually after long use) while others fade and I go back to a baseline state. Nothing (I think) has made all the symptoms worse at the same time. This variability makes me believe the syndrome is linked to the androgen receptor sensitivity - androgens dynamic.
17) Tell us your story, in your own words, about your Finasteride usage and side effects experienced while on/off the drug.
***Firstly "Hi", I've been following this forum for about 5 years on and off, and so I suppose I owe you all a big "Thank you" before anything else for allowing me to leech off your ideas and tests. Some of you are a bit crazy though. But that's not always bad.***
I was prescribed Finasteride by an overconfident thieving moron with little care for his patients, who works at a place called Hair Restoration BlackRock, near Dublin. It's been five years and he has still never responded to me. Apparently he continues to prescribe this treatment, which I find disgusting.
After experiencing increasingly strong side effects I quit a year later. The next morning I had experience which I can only describe as: "feeling my brain turn back on". I could see, hear, especially smell everything again; I became acutely aware that I was sitting where I was, doing what I was doing. All sorts of other thoughts started 'happening' which hadn't been happening moments earlier. My hands also warmed up, and I got a feeling a slight nervousness, something I hadn't experienced in months but which I'd never noticed leave. I was sitting in the library at the time.
I realised only at that moment what the drug had been slowly doing to me, at a rate too slow to notice. If you'd asked me only a few weeks before, I would have told I had no side effects at all -I even remember thinking I would recommend finasteride to a friend of mine. In hindsight, there were a number of odd things happening to my body (hot, dry skin after exercise, diabetic-like symptoms during sports, mind blanks and difficulies with coursework, loss of aggression, loss of interest in sex, very premature ejaculation, smaller genitalia) which weren't serious on their own, but were definitely odd, and only started after I took the drug.
My recovery stayed for 1 month, without any crash. However I began to become increasingly aggressive, egotistical and had difficulties being relaxed and sociable with people. My sexual symptoms also hadn't resolved entirely; I had very little interest in sex. I also began to worry about my hairline. So I did something that I have regretted every day since then and took another 1.25mg dose.
For one day I experienced the familiar foggy thoughts & sexual disinterest symptoms of finasteride which I had come to recognise, and the next day the symptoms lifted, but it wasn't the same experience as the first recovery. A week later I woke up with dry feeling in my mouth. When I got out of bed I noticed I was very fuzzy-headed, as though I'd had a concussion. The fuzzy-headedness wouldn't go away when I went in to the office where I was interning. I began making very stupid and embarrassing mistakes, such as misreading emails and forgetting things. I noticed I found it very, very hard to follow what was being said or what I was reading, by the time I finished each paragraph I forgot what I'd just read a moment before, at the top of the paragraph. But bizarrely, my sexual symptoms seems to have improved very slightly, or at least stayed as they were immediately before the crash.
At first it was very easy to get up in the mornings, then it became impossible to sleep. I would feel my heart pounding 24/7, and my body felt like I had just finished running. You know that feeling first thing in the mornings when you can't clench your fist? I never got that, ever. All my muscles were constantly pumped full of testosterone, I presume.
This went on for 6 months until I hit my first 'cure' through a combination of not eating, then eating a lot very suddenly with alcohol. It also involved rooibos tea. It hasn't done anything since then, and I obviously can't tell which component of what I was doing had an effect since I don't have any 'controls'.
The change it brought about was very minor, but it allowed me to sleep. Then about 5 months after that, with still no consistent improvement, I decided it was time to start experimenting with different things.
I read that statins caused an increase in 5 alpha reductase activity in rats. More precisely a reduction in cholesterol did. So I bought red yeast rice, which is chemically the same as lovastatin, and started taking it, along with niacin, which supposedly has a similar effect. At first I was convinced it was making improvements, it changed something mentally in the short-term and I would feel sharper and more 'there'. It also was doing something positive in terms of physical/sexual effects. But in the medium term I started to feel horrific, emotionally speaking. I was becoming increasingly anxious, reclusive, and depressive. The pity was that I didn't attribute it (I didn't even notice it) at first to the statin, so I continued taking this 'treatment'.
It led to a personality change over time, which took about a year and half to remedy. I basically just avoided people I knew during that time by taking a course abroad and keeping contact to a minimum. I'm not really sure looking back, but I think I may have been suicidal at times. This is why I don't recommend this treatment, to anyone who has a similar symptom profile as myself. If it had got much worse I can't be certain I'd still be here.
Then in this retarded, miserable haze I started trying various things (green tea, definitely has an effect but it wore off fast) to try to relieve the symptoms (ibuprofen, actually did use it for a while but as with other treatments the body seems to adjust to it).
One day I ate a coconut. I don't really remember if it was on purpose or by accident. The next three days my genitals were completely numb, then feeling returned.
Then, about a week later, I ate a coconut slice. For a few hours I felt strangely similar to how I'd felt after taking finasteride. With a sort of 'calmness' to my 'numbness'. Then as the effects of this coconut slice lifted, so too lifted the horrible, soul-crushing depression I'd been under for the previous year and a half, literally in the space of 3-4 minutes.
This elation lasted several days, and I was also sleeping better, dreaming and able to read properly. Then I took the slices again, there were a few hiccups and I didn't figure it out straight away, but pretty soon I began to pick out a pattern. I would take the coconut slices, then for 1 day I had "on-coconut phase" -the effects (mental, physical and sexual) were heavy & as-though-you-were-on-finasteride; then for 2 days I had "tail-end-of-coconut phase" (this would vary according to the quantity/type of coconut): here the on-coconut effects lingered but were noticeably less; then for 5 days I would have "normal time" when my symptoms (mental, physical and sexual) were at a minimum. After day 8 (1+2+5 days) the soul-crushing depression would return.
I don't think anyone can say yet why this happened. My best guess as to why is that by taking a 5AR inhibitor like coconut I imitated finasteride, brought DHT down to a point closer to the acquired sensitivity of the Androgen Receptor (which is over-sensitive due to exposure to low-DHT blood), then the Androgen Receptor 'up-sensitises' itself in this coconut-low-DHT environment. Then when the coconut naturally gets removed from the bloodstream (not literally coconut, but whatever active ingredient is in the coconut), the Androgen Receptor is up-sensitised, but in an environment with higher levels of DHT, so it starts signalling normally and you feel more normal.
So this strategy went on for several months, but it has the obvious disadvantage of sacrificing 1-3 days entirely in exchange for 5 usable days. You also need a constant source of coconuts, which sounds easy but isn't.
Given that I suspected it was coconut's 5AR inhibition that was having this effect, I decided it was time to try a stronger (but still "natural" -whatever that means- 5AR inhibitor): astaxanthin. I also took a bunch of other crap, including boron -which had almost exactly the same effect as statins and turned me slightly crazy again. I suspect that all things which 'boost DHT', maybe also testosterone, have this same crazy-inducing effect as statins, which were supposed to boost DHT. I think it's cos increasing DHT down-sensitises the Androgen Receptor after a day or two, so then you feel shit.
But the astaxanthin is interesting. I took it -but admittedly I could have been smarter about it- intermittently, not being particularly careful with the doses. In the short run it made me feel normal-ish again, but it didn't do the trick like coconut did. The thing is, something had gone strangely wrong since I took the boron shortly before (I suspect the boron), because even taking coconut again wouldn't lift this new complex, which was mostly mental.
But the interesting thing with astaxanthin is that although I wasn't 100% OK after it (there were still these hang-over anxiety effects), the old soul-crushing depression didn't come back. I didn't have to cycle coconut again. It's as though the astaxanthin "stabilised" my body permanently after that (be careful though, it's a 5AR inhibitor).
After that I started doing some sports again, and in doing sports I stumbled across "MusclePharm ASSAULT", one of these powders that sports nuts use for training. It had some insane effects initially, where it was obviously up-regulating the overall androgen effect, but without the anxiety/depression coming soon after. It had a 'ceiling' though, whereby I could only take it a for a few days and then any more would create a bizarre feeling of complete weakness and listlessness. (Don't use the new MusclePharm ASSAULT, it has high doses of niacin in it, you should get something called the "old formula" which might be buyable from individuals who've kept some at home. Alternatively, I never tested each ingredient in the powder separately, but obviously it was one thing or multiple things in ASSAULT that had this effect. You could look up the ingredients (in the old formula) and test them one by one.)
There was an overall trend of upward improvement from then, in bursts. If anything (almost always those things purported to 'boost DHT') was having the anxiety/depression effect I would stop it instantly. I started going to the gym, because my body could now handle it. Going to the gym made me feel better, particularly doing heavy weights.
I believe, but can't be sure, that after going to the gym, because I put on a load of muscle again, particularly in my legs, which brought me back to my normal size, it maybe -perhaps this sounds stupid- created a sort of 'DHT reserve' or sink in my muscles which made me feel better and prevented the dips in the occasional hormone crises going too low.
The mental effects are a constant struggle and for five years have held back my career ambitions and prevented me learning or excelling at what I'm doing. I tried a range of pre-hormones (DHEA I think, some other shit), which had some OK effects (if you're interested please ask and I'll look it up) but didn't completely convince me. I know it doesn't do anything to address the underlying cause, but to be able to keep up with the work I have to produce, I take modafinil. It helps you concentrate.
My body, in terms of muscles, is fine. In fact it looks slightly too muscly. Sexually, my symptoms are nowhere near what other people in this forum have, and I feel very fortunate for that. I definitely have less interest in sex, worse erections, less sperm, smaller/harder testices and genitalia, but it stops there. I haven't tested my sperm.. I have some bizarre physical symptoms, such as bumps in my nails and a tendency to get skin infections really easily, but that's it. The real challenge is the cognitive and psychological side-effects of whatever's happening to my hormones elsewhere in the body.
Anyway this is really long.
SOME IMPORTANT NOTES BEFORE ANYONE COPIES WHAT I DID:
1: I always had high, in fact very high (32 moles per something) Testosterone. I never had low testosterone, so if you do, maybe what I say doesn't apply to you.
2: Taking a DHT-booster strategy did have positive physical and maybe sexual side-effects; but I might have killed myself from the depression it caused. So it is a very, very mixed bag of worms.
3: If anything I have said here is important enough to you to try it, ask me for more information first in case I made something unclear or misleading.
[b][size=150]SOME THOUGHTS ABOUT WHAT PFS MIGHT BE:
I can't speak for anyone else's syndrome, but I think that when I take DHT inhibitors (not all are the same) it provides relief from the symptoms. Note that I have high testosterone though. I also suspect that some of the horrible side effects from DHT boosters and the crashes from taking other 'Androgen effect boosters' (by this I mean total androgens + things which increase the sensitivity of the Androgen Receptor) for too long, are due to the Receptor re-adjusting itself to a new high-androgen environment then having this environment taken away.
I think the reason for the relief due to DHT inhibitors (certain ones) is because it imitates finasteride (I mentioned this theory earlier), lowering DHT down to levels that the Androgen Receptor got used to while on finasteride (but didn't re-adjust properly from afterwards). The lower DHT environment makes the Androgen Receptor increase its sensitivity again in adjustment, and when the source of low DHT is removed again the DHT levels rise while the Androgen Receptor stays sensitive, providing relief from the symptoms.
This is because I have read Mew's paper on Androgen Receptor sensitivity, I think he's onto something. I really do have more to say on this but I'll write it another time after I've had some sleep.