- Where are you from (country)?
South Africa
- 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?)
- What is your current age, height, weight?
Age:34
Height: 1.9meters / 6 foot 3
Weight: 88kg / 194lbs
- Do you exercise regularly? If so, what type of exercise?
Do exercise regularly - weight training and yoga, mainly Bikram
- What type of diet do you eat (vegetarian, meat eater, raw, fast-food/organic healthy)?
Healthy eater, no red meat, mainly veggie with chicken and fish.
- Why did you take Finasteride (hair loss, BPH, other)?
Hair loss
- For how long did you take Finasteride (weeks/months/years)?
Just under 12 years.
- How old were you, and WHEN (date) did you start Finasteride?
Feb / March 2000, I was 21 years old.
- How old were you when you quit, and WHEN (date) did you quit?
December 2011, I was 33 years old.
- How did you quit (cold turkey or taper off)?
Tapered off, not intentionally, just became weary of using it every day.
- What type of Finasteride did you use – Propecia, Proscar, Fincar or other generic?
Started with name brand Propecia, then generic proscar tablets (cut) and finally a combination of these and generic Dutasteride.
- What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)?
Overall I’d say between 1 and 2mg of finasteride per day, eventually alternating days between 0.5mg of Dutasteride and the Finasteride dose. Some days I doubled Fin and Dut, but very few.
- How long into your use of Finasteride did you notice the onset of side effects?
There were side-effects throughout the usage period, but I (inexplicably) never made the connection between them and Finasteride use. There were first real signs of trouble in late 2010, then in 2011 the effects were undeniable, and by 2012 I was actively trying to resolve them.
- What side effects did you experience while on the drug that have yet to resolve since discontinuation?
Put an X beside all that apply:
Sexual
[X ] Loss of Libido / Sex Drive
[X] Erectile Dysfunction
[ ] Complete Impotence
[X ] Loss of Morning Erections
[X] Loss of Spontaneous Erections
[X] Loss of Nocturnal Erections
[ ] Watery Ejaculate
[ ] Reduced Ejaculate
[ ] Inability to Ejaculate / Orgasm
[ ] Reduced Sperm Count / Motility
Mental
[X] Emotional Blunting / Emotionally Flat
[ ] Difficulty Focusing / Concentrating
[ ] Confusion
[X] Memory Loss / Forgetfullness
[X] Stumbling over Words / Losing Train of Thought
[X] Slurring of Speech
[X] Lack of Motivation / Feeling Passive / Complacency
[ ] Extreme Anxiety / Panic Attacks
[X] Severe Depression / Melancholy
[ ] Suicidal Thoughts
Physical
[X] Penile Tissue Changes (narrowing, shrinkage, wrinkled)
[X] Penis curvature / rotation on axis
[X] Testicular Pain
[ ] Testicular Shrinkage / Loss of Fullness
[X] Genital numbness / sensitivity decrease
[ ] Weight Gain
[X] Gynecomastia (male breasts)
[ ] Muscle Wastage
[X] Muscle Weakness
[ ] Joint Pain
[ ] Dry / Dark Circles under eyes
Misc
[ ] Prostate pain
[X ] Persistent Fatigue / Exhaustion
[ ] Stomach Pains / Digestion Problems
[ ] Constipation / “Poo Pellets”
[ ] Vision - Acuity Decrease / Blurriness
[ ] Increased hair loss
[X] Frequent urination
[ ] Lowered body temperature
[ ] Other (please explain)
- What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug?
After seeing an Endocrinologist a few months back, he diagnosed me with secondary hypogonadism and put me on restart protocol of Clomid and Letrazole. I’ll outline the results below.
- 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 went from having very high levels of testosterone, to an endocrine system crash after stopping Finasteride, and finally to full-blown hypogonadism.
- Anything not listed in the above questions you’d like to share about your experience with Finasteride?
See below.
- Tell us your story, in your own words, about your Finasteride usage and side effects experienced while on/off the drug.
I’m a long-time lurker on these forums and this is my first post. It’s a familiar story: I started taking Finasteride in 2000 as I was very concerned about hair loss. It continued for my entire twenties until the end of 2011, aged 33. Finasteride was effective at slowing the hair loss, but Dutasteride was a revelation for me, resulting in a significant amount of regrowth.
In 1999, pre any drug use, I partook in a medical trial with a dozen other guys where our Testosterone levels were examined. I don’t have a record of the exact value, but I do remember my total testosterone was more than double the nearest next participant and off the upper end of the reference range.
I had various symptoms during the usage period that I never associated with Finasteride, such as gyno, memory loss, loss of train of thought and a few sexual “no-shows”, but not enough to warrant concern.
In 2010 there were the first few signs of real trouble. Sexually, I wasn’t as “big” or potent as before. In early 2011 this got worse and I had my first episodes of a sexual “disconnect” - a terrifying sensation of being disconnected from my penis. It would become a lifeless, cold appendage with little sensation or reaction to manual stimulation. The closest comparison I could draw would be to running into the icy waters of the Atlantic, only much worse. There was also constant “contraction” of penis and testicles which was very concerning. I could still get an erection and orgasm, but my penis size and strength was definitely reduced to about 60%. I also experienced severe depression around this period.
At some point in mid-2011, I finally made the connection to Finasteride and ran some searches online. I was staggered by what I found: people were having similar issues and their list of symptoms and descriptions were identical: memory loss, gyno, loss of energy, depression, libido decrease and that strange sexual “disconnect” sensation.
For the first time in December of 2011, I had my testosterone tested. My result came back as low / borderline. See all results here:
viewtopic.php?f=4&t=7543&p=0&e=0
Wanting to avoid any further chemical intake, I sought a natural alternative to “restarting” my system. I increased weight training and adjusted my diet with the intention of increasing testosterone. I also supplemented with Tongkat Ali, L-Arginine, L-Cartinine etc.
I re-tested in Feb 2012 before starting my natural recovery period, and again in September 2012 after these efforts. Unfortunately, my testosterone result afterwards was identical. It was at this point that I decided to see a professional.
My endrocrinologist ran a series of physical checks before viewing my blood work, declaring me to be in outstanding physical health. I largely attribute this to a long-term Bikram Yoga practice, weight-training and a healthy diet. After viewing my latest results (September 2012), he said that my Testosterone was abnormally low for my age, and after seeing my LH and FSH levels stated: “Well, there’s your diagnosis. Secondary Hypogonadism. Your testicles are not being stimulated.” He also told me that my Cortisol and DHEA levels were too low and Estrogen too high.
He prescribed Clomid and Letrazole, explaining that the Clomid would help the brain produce LH and FSH, which in turn would stimulate the testicles to produce testosterone, and the Letrazole would help contain the resultant increase in Estrogen.
I stalled on beginning the protocol as I was concerned about taking more medication. In the weeks that followed, my energy levels and sexual potency continued to decline. Eventually, in November 2012, I felt like a 90 year old man with virtually no energy or strength. I decided to have my testosterone tested one more time before deciding whether or not to start the protocol. My result came back as shockingly low (see November 2012). I took my first Clomid tablets that same day.
His prescription was 50mg of Clomid, twice a day for 21 days, with 2.5mg Letrazole once a day for this period. One week off after this and then follow-up bloodwork 48 hours after the off-week. I followed the protocol religiously. The first week on the protocol was horrendous. I’m not sure if it was the drugs themselves or a continuation of the downward spiral I was already on before taking them, but I suspect it was a bit of both. From the second week I started to feel improvements. My energy improved, gym sessions improved, blood flow seemed to be returning to my genitals, and there was a sexual “tingling” sensation there that I had almost forgotten about. It wasn’t the instant 180 turnaround I was hoping for, but I certainly felt like I was on the road to recovery.
I did experience side-effects while on the drugs, but very little and none that overly concerned me. There was some facial flushing at various points, occasional slight increase in heart rate, mild acne in the beginning which soon calmed down. Most unusual was an occasional tingling “pins and needles” in my legs while in the shower. Again, this was only on occasion and not severe enough to cause concern. I did also started sprouting a few hairs on my back (!). And yes, the hair loss did seem to increase a bit.
I’m now at a few weeks after ending the protocol on the 20th of December 2012. I seemed to improve the most at the end of the off week. I’m aware that these results might only be temporary, but for now the positive results that seem to have maintained are: sexual improvements i.e. bloodflow to the penis, feeling of sexual “electricity” in that area again, morning wood. I haven’t had the “disconnect” feeling since starting Clomid. Testicles are larger and firmer. Penis size has improved, but is definitely still not there yet. Energy levels and muscle tone are significantly improved. Depression is gone, but had largely improved after stopping Finasteride anyway.
So overall, it’s not a 100% recovery yet, but factoring in both lethargy and sexual issues, I’d say that before the Clomid protocol I was operating at 30%, and now I’m at about 70-80%.
Again, here is all my blood work, including before and after Clomid:
viewtopic.php?f=4&t=7543&p=0&e=0
Basically, my total testosterone has more than tripled. Estrogen still seems pretty high though. I will update this thread in a few months with new results to see if the numbers have “stuck”.
Here are some personal conclusions. Again, they’re just my thoughts on the matter, not presented as fact.
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For me, Post-Finasteride Syndrome is a very real phenomenon. I would strongly urge anyone considering taking these drugs for hairloss to reconsider their choice as they clearly interfere with the delicate balance of the hormonal system. Having experienced both hair loss and the deliberating effects of a hormonal crash, I would say that while both are awful, I choose vitality, potency and life over hair.
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That said, the fear mongering around PFS on the web is also real. I feel it is premature and irresponsible to use the word “permanent” when describing the side effects at this stage. “Persistent” feels like the appropriate word. In my experience, PFS can be treated. While I don’t suggest that a Clomid restart protocol is appropriate for everyone, it seems to be working for me. The side effects were negligible and the measurable results for me have been dramatic. Whether they stick or not, is of course another issue.
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Overall, staying as healthy as possible seems to be a major component to treatment and recovery. I believe that my positive response to the treatment is both because my Secondary Hypogonadism was medicinally induced, (not “naturally” occurring), and because my physical condition is excellent otherwise.
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There’s no substitute for professional insight. Try seek out an Endocrinologist who is young, technically savvy, and has an air of being open to constant learning. My doctor was a veritable fountain of knowledge and completely open to discussion and my input.
Again, I’ll update with a new hormonal profile and observations in a few months. Any questions, please ask.
All the best