My Story: Life AFTER Finasteride
The day I quit the drug
I distinctly remember the day I quit.
In the 2 weeks prior to quitting, I tried weening off by cutting my dosages into 8ths and 16ths (little did I know at the time that due to Finasteride's extreme potency against the 5AR2 enzyme, the drug has a near-flat dose response, such that 0.25mg 1mg and 5mg inhibit nearly the same amount of DHT -- effectively making weening off an impossibility). In the week leading up to my last pill, the testicular ache I had experienced periodically while on the drug returned with a vengeance, to the point that my scrotum felt painful to the touch. My penis was tingling all over and completely numb, my mind was frazzled and in a heavy fog, I couldn’t get hard if my life depended on it and my sex drive was barely present.
Finally, almost to the day I popped that first pill with such enthusiasm... I cursed Merck, threw out my remaining pills, and tried to look on the bright side that soon I would be back to normal.
Instead, within four days of quitting, the testicular ache became beyond painful -- it was excruciating. I recall checking myself in the mirror and being horrified to see my testicles expanding and contracting rapidly like balloons, while going up and down like yo-yos. They were extremely red to the touch, and felt extremely HOT.
I swear to God I’ve never seen anything like it before in my life (I know how my body was before I took this drug… yes testicles move on their own, but not like this!). I remembering thinking to myself “my god, I think I’ve killed them… what have I DONE???!!!”. It honestly looked like they were in pain, as if someone had lit a fire underneath them and they were trying to get away (this pain/movement has subsided since quitting, only to be replaced with complete feeling of "deadness" and shrinkage of the scrotum.
As it turns out, I wasn’t really that far off with my “I killed them” comment; within 3 weeks of quitting I’d find my Testosterone levels crashing through the floor.
2 weeks off – begin to recover to my old, pre-Finasteride self
Approximately 2 weeks after my last pill, I felt a flood of DHT surge through my body. I can still vividly remember that feeling -- it was like my blood was boiling, my veins were bubbling and my entire body felt pumped full of energy, vitality, life -- thanks to the return of Dihydrotestosterone, the most potent male androgen.
I rapidly became horny again, my penis and scrotum were beginning to return to their former pre-Finasteride size and glory, and I was able to get it up no problem. Ejaculate volume started to improve, mental side effects started clearing up, and my desire and lust for women started to return in full force. Basically, I felt like my old pre-Finasteride self -- alive, aggressive, full of drive and ready to take on the world. I was on my way to being back to normal, and I was ECSTATIC!!!
This was how recovery from the drug was SUPPOSED to be, and CONTINUE to be, per the manufacturer's claims (for the vast majority of men, they continue on as normal -- however for a smaller, unknown percentage like me and members of propeciahelp.com -- possibly due to a genetic predisposition? -- we experience the following):
Endocrine system crash: The Post-Finasteride Syndrome
Unfortunately, the post-Finasteride period of androgen recovery only lasted about 5 days. After the 5th day, it was as if something in my body "switched off" and I started to lose the effects of androgen. I could feel the flood of DHT begin to slowly subside and fade away, until over the next few weeks in November ended up feeling worse than I ever did compared to on the drug. My sexual and mental side effects were not only back in full force, but doubly so with the addition of hot flashes and extreme head pressure. I was scared, couldn’t understand why this was happening, but it was unmistakable – somehow, quitting the drug had screwed up my body even more..
Within days of this androgen "crash" 3 weeks after quitting, my penis and testicles shrunk up and began constantly retreating into my body. My penis started curving to the left and was now twisting on its axis about 45 degrees, and I could see “ring-like nodules” around the shaft begin to emerge (fibrosis? Plaques? Beginnings of Peyronie’s?) that were never there before. Even the skin texture was beginning to change… it had become dark and wrinkly, with horizontal striated lines denoting the folds of skin as it continually “retreated” into my body (as if in a cold pool). Over time, large green-purplish varicose/spider veins began to showing up on the shaft and the tissue began to take on a “purplish” color (tissue hypoxia/death due to lack of androgenic action?).
Over the course of November and December I became incredibly fatigued, particularly after 2pm and into the evenings. The return of the mental side effects only further compounded the situation. Finally, there was the loss of sex drive, which disappeared almost overnight after the "crash". Whereas on Finasteride I at least had SOME sex drive left, after my brief recovery period (after quitting), my sex drive VANISHED. GONE. KAPUT. Forget the fact that I wasn’t very horny anymore – I couldn’t even GET horny. I could literally watch porn or be with the hottest girl on the planet, and nothing would happen “down there” or “in my head” -- there was just no "urge" anymore. My brain was no longer responsive to visual erotic stimuli or touch.
With the complete loss of my sex drive I had basically become a eunich, unable to lust after or desire women as I once did, unable to satisfy them or myself as I once could. This I found to be the scariest thing of all. This loss of sex drive is a major issue that continues to haunt me to this day and seems to be a major factor in the Post-Finasteride Syndrome.
Revelation & knowledge
I thought maybe things would get better again soon, and that I should wait it out for a few more weeks… but after a month and a half, nothing had improved and my health and symptoms continued to deteriorate. So I began researching to see if anyone else had experienced the same thing I had, after coming off the drug. Needless to say, I was shocked at what I found.
I found some occasional side effects reports here and there on a few hairloss blogs, but when I came across the www.propeciasideeffects.com website, I didn’t know whether to laugh or cry. I mean, here was a guy going through EXACTLY the same thing I was, only he was further down the path.
I read his story voraciously… he had some answers as to why this might’ve happened (something about the “HTPA” and “feedback loops” – at the time I knew very little about the endocrine system), but was still trying to figure things out himself.
Then I noticed he had a link to a Yahoo “Finasteride Side Effects” discussion group. Curious, I clicked it. I was greeted with the following:
- “This group is for men experiencing PERSISTENT side effects from the hair loss and prostate drug Finasteride (Propecia, Proscar, generics), "persistent" being side effects that are still present several MONTHS or more AFTER quitting the drug. Side effects typically resolve within several days or weeks after quitting, but in some unfortunate men, these side effects do not go away for months or years, if they go away at all. Some persistent side effects include sexual problems, gynecomastia, difficulty concentrating, testicular pain, and frequent urination. If you are experiencing these problems, and you have had them for at least several weeks after quitting, you may be interested in our group.”
I joined the group and to quote the author’s text on propeciasideeffects.com, “my worst nightmare was staring at me in black and white on the computer screen.” Within this group I came across “not one, but many cases of finasteride induced impotence”, loss of sex drive, shrinkage, and all the other symptoms described in my story (and then some).
The next few days were spent researching all I could about post-Finasteride side effects thanks to this group. I came to learn that many men end up with hormonal imbalances after coming off the drug, particularly with regards to Total and Free Testosterone. It seems that for some, discontinuing Finasteride further disrupts their Hypo-Thalamus Pituitary Axis (HTPA) somehow… but nobody knows why.
For many guys, their systems crash shortly after a brief period of post-Finasteride recovery (as I did), often leaving them with borderline or hypogonadal Total & Free/bioavailable Testosterone, LH and FSH levels, concurrent with seriously elevated Estradiol (and often elevated TSH, Prolactin, SHBG) and either high or low serum DHT (amongst other imbalances). For the majority of these men, we appear to end up with a difficult-to-treat form of Secondary Hypogonadism, a condition usually only seen in men 50+ that are going through male Andropause. Yet here we were, most of us experiencing secondary hypogonadism and andropause firsthand in our 20s, thanks to Finasteride.
Through my research, I came to realize that the symptoms I was now experiencing after Finasteride matched those of secondary hypogonadism and low testosterone almost perfectly. But the only way I would know for sure was to take a blood test, and so that became my next plan of action – talk to my doctor about all that I had experienced, and get some bloodwork to see what the hell was going on with my hormones (baselines of which SHOULD have been taken prior to starting the drug).
First (negative) Post-Finasteride doctor visit with childhood GP
I made an appointment to see my family doctor about my post-Finasteride symptoms, share my thoughts on what I thought could be the issues (secondary hypogonadism), and try to obtain bloodtests for the key hormones which I was aware (at the time) could have been affected by Finasteride.
After I finished explaining my case to him, to my surprise I was immediately met with fierce resistance. He flat out wouldn’t admit to Finasteride causing this, said my sistuation could have been caused by “any millions of other things” and that this was all “likely psychological and in your head”, since the drug had been out of my system for 4 months at that point. In short, he didn't believe me that I was still experiencing side effects from the drug, or that the drug could be the cause.
He sat there and literally quizzed me on every hormone I wanted to get – Testosterone, Free T, LH, FSH, Estradiol, etc… belittling me along the way. By the end of the session, the only thing he would test for was Total Testosterone, TSH, and Glucose (fasting). He finally wrote down the above 3 tests and signed his signature. I grabbed the paper and left his office, incredibly dissapointed over the whole affair.
First Bloodtests & GP followup
The next morning I had my first blood tests drawn for Testosterone, TSH and Fasting Glucose. Two weeks later I went back to my GP to get the results. He looked over the form and said “everything looks normal, all your results are in range” (a common statement most men suffering from the Post-Finasteride Syndrome hear from their doctor, despite being at the bottom of the range for Testosterone levels). He continued to tell me there’s no way this could be due to Finasteride but that “anything is possible, I suppose”. He said to “give it a few months” and that “everything will be fine”, and that we would retest things in 3 months.
I asked about getting a referral to an Endocrinologist. He agreed to a referral -- but said I should see a Urologist, since I had erection issues and was claiming my genitals had shrunken/were numb. I pressed him on wanting an Endocrinologist, but was told the doctor I would be referred to would be a Urologist. Since there wasn’t much else I could do to convince him about my situation, I agreed to come back in 3 months for blood re-testing. I also setup an appointment to see the Urologist that day, but I would have to wait a few months to see him.
On my way out of the office I had the front desk photocopy my lab results. I left the building, got into my car and poured over the sheet. Since there were only 3 tests done, there wasn’t much to check.
- My Total Testosterone was extremely low for a guy my age (mid 20s)– it was 12.8 nmo/L (range: 8.4 - 28.7 nmo/L, or 388 ng/dL in USA measurements). Through research I found that most young men’s T levels should generally be in the upper third of the range – ie, 21-25 nmo/L (600-700 ng/dL). My Testosterone levels were almost half that… needless to say, I felt that I finally had some proof as to why I was feeling so terrible… thanks to Finasteride crashing my HTPA, I had T levels generally associated with those of a 70 yr old man. Yet, according to my doc, everything was “normal and within range”, despite more evidence to the contrary.
- The other result I noticed was my TSH… it seemed unusually high – 4.54 mU/L (range: 0.30 – 5.50 mU/L). After doing some additional research when I got home, turns out the medical standards had recently changed for what is considered a “normal” TSH -- but many doctors had yet to ascribe to the new range. The new standards note that anything above 3.0 mU/L is considered Hypothyroidism -- yet my doctor again said everything was normal and had me on my merry way. I will note that since Finasteride, my body temperature has consistently ranged between 96.7 – 98.2, whereas prior to the drug I was consistently around 98.5 – 98.6 (interestingly, some guys on Propeciahelp.com have been diagnosed with Hypothyroidism and Hashimoto's Disease after using the drug).
So, it seemed (to me) I was likely getting hit with a double-whammy here – low Testosterone, possible Hypothyroidism, and who knows what else. Needless to say, the next 3 months would be spent hoping my T levels would rise from the basement as I continued to research my condition.
Months go by, no improvements
From January until April, nothing really improved for me in terms of side effects resolving. I was still experiencing major erectile dysfunction and loss of sex drive, penile/scrotum shrinkage and numbness, extreme exhaustion by 6pm, brain fog/difficulty processing thoughts/memory lapses/slurring of speech (this was very scary), and just generally feeling passive, “drunk” and totally “out of it”.
Furthermore morning, nocturnal and spontaneous erections continued to be absent from my life, no doubt accelerating further erectile tissue/function decline and contributing to what I believed to be a mild penile tissue fibrosis by this point (as my penis continued to curve to the left and rotate even further on its axis, while the “ring” nodules and varicose veins I noticed when I came off the drug became ever more apparent along the penile shaft).
When I would try to be with girls, I could barely get hard. If I did, I would either ejaculate within 10 seconds flat (semen still extremely watery, and not much of it) or I would go flaccid after penetration, unable to sustain an erection for more than a minute. And of course, my sex drive was nowhere to be found during this entire time, further compounding my ability to achieve and maintain a useable erection. As a young man, I basically didn’t desire or care for sex anymore. This was not right, and I still can’t believe how much this drug has effected my life so terribly, so fast.
Third GP Visit, Blood Tests
Since these problems continued and it had been 3 months since my last bloodtest, I visited my GP for a followup and to hopefully obtain a referral to an Endocrinologist.
Instead of having to argue my case, this time he relented somewhat and finally decided there was no harm in checking more hormones after all… he filled out the requisition form and handed it to me – testing for Testosterone, LH, FSH, TSH and Estradiol, and he threw in a Hematology Panel, Urine Chemistry and Glucose Fasting for good measure.
A week before my appointment with the Urologist, I took my second bloodtests. I wouldn’t get my results until I went to see the Uro a week later. Just so you know in advance, these were the results I received after the Urologist appointment (a week after my 2nd bloodtest):
- Testosterone had risen from 12.8 nmol/L in January to 17.3 nmol/L (range: 8.4 – 28.7) in May, but was still at least 4-5 nmol/L below where it should be for a man my age (ie 21+ nmol/L).
- TSH had gone down from 4.54 mU/L in January (range: 0.30 – 5.50 mU/L) to 2.33 mU/L in May. Clearly, Finasteride had effected more than just DHT in my body.
- The telltale proof that I was still experiencing symtoms of dimiminished Testosterone production came from my LH and FSH results: LH was 2.0 U/L (range: 2.0 – 18.0) while FSH was 2.1 U/L (range: 2.0 – 18). In other words, absolute borderline, with my pituitary barely sending out any signal to the testes to “get to work”.
- The final piece of the puzzle was Estradiol – 154 pmol/L (range: less than 100 – Prepubertal, less than 206 – Adult in Canadian terms). When converted to the American range, my result of 154 pmol/L was ~ 43. According to Lef.org, the optimum range for Estradiol for men in the American system is between 10-30.
Of course, it’s not like I needed to see the numbers to know I had elevated Estrogens… the fact I had experienced the beginnings of gynecomastia, became emotional/depressed and had weight gain while on the drug, and that the manufacturer themselves allude to “changes in breast tissue” on their drug insert was proof enough for me. These test results only served to confirm my suspicions.
With a week to go to see the Urologist, I was hopeful he would be able to shed some light on my situation. From what I had researched on his background, he was quite the expert on BPH, Finasteride use, the Prostate and related sexual dysfunction. Unfortunately, meeting with this man turned out to be a complete waste of time and I was once again left without any answers, only grief.
During the week before my appointment, I printed out every piece of research material and every study I could find that correlated the detrimental effects of Finasteride usage in both humans and animals.
To me, the evidence was overwhelming. In these studies it showed what happened when you reduced androgen levels via androgen deprivation thanks to Finasteride: loss of penile response, erectile dysfunction due to lowered DHT/Nitric Oxide production, loss of NO-positive nerves in penile tissues (DHT mediates NO), loss of libido, gynecomastia, interference with neurosteroids and 5AR-reduced metabolites in the brain, penile tissue fibrosis/collagen deposits due to DHT deprivation, depression, impaired memory and cognitive function, disturbed androgen/estrogen ratios, leydig (testicular) cell adenomas and hyperplasias, impaired liver P450 cytochrome enzymes/metabolism, changing one’s hormonal profile to match that of a genetically 5AR2-deficient pseudohermaphrodite-- the list just goes on and on.
I also found studies corroborating the necessity of threshold levels of androgens (specifically, Testosterone) in order for men to experience sexual desire/urges, proper genital tissue structure/function/size, mental clarity, ambition, morning/nocturnal/spontaneous erections, and much more – levels I was still below. My goal was thus to highlight the relevant materials and present evidence that Finasteride did in fact cause these changes in me, that I was now suffering the effects as outlined in the studies, and that a certain level of Testosterone was in fact required for me to function properly.
I got to the hospital and finally was called into his room. I sat down and explained my case, he listened but said he’d "never heard of men having problems after discontinuing the drug" (great, here we go again). He checked my prostate and said it was "fine". He examined my penis, said it was "fine". He looked at my hormones, said they were "fine". Essentially, he said "everything was normal, that these issues were likely psychological and that I should consider seeing a sex counselor for the libido/ED issues as I may be having performance anxiety".
I mentioned the loss of nocturnals/morning/spontaneous erections, to which he replied “that’s interesting, but I doubt it has to do with the drug”. I tried showing him a study (Effect of androgen deprivation on penile ultrastructure) which clearly showed that lack of DHT via Finasteride induces collagen deposits and fibrosis in the corpus cavernosum (penis) in rats. As expected, he dismissed the study by saying it was from the Asian Journal of Andrology and thus “not a very reputable source”. He ended up giving me a prescription for Viagra, sent me on my way, and that was that. I was flabbergasted, dismayed, and angered… I left the hospital feeling hopeless and full of grief, as I didn’t know where to turn to next.
It seemed no matter who I talked to in the medical community, nobody believed me that:
- Finasteride could cause these sorts of problems
- The side effects experienced while on the drug could continue after quitting
- My hormones (especially Testosterone) were impacted in a negative way by the drug, and since discontinuing.
So it seemed I was pretty much on my own to try and figure things out, which is what I and the others in the Yahoo Finasteride Side Effects Group (eventually superceded by www.propeciahelp.com) have been trying to do to this day.