Hey everyone. I’ve been lurking on this forum for half a year, but figured it would be helpful to throw my hat in the arena and share my story. A lot of you have been dealing with PFS for longer than I have, and I admire your persistence and tenacity in the face of such adversity. As a relatively recent sufferer, I would love to hear your thoughts on what I should do moving forward.
- Where are you from (country)?
New York, United States
- 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?)
Google search
- What is your current age, height, weight?
24 years old, 5’7, 150 pounds
- Do you exercise regularly? If so, what type of exercise?
I lift weights three times a week, Monday/Wednesday/Friday
- What type of diet do you eat (vegetarian, meat eater, raw, fast-food/organic healthy)?
Predominant paleo diet with some carb intake
- Why did you take Finasteride (hair loss, BPH, other)?
Hair loss
- For how long did you take Finasteride (weeks/months/years)?
One month
- How old were you, and WHEN (date) did you start Finasteride?
23 years old. I started on September 8, 2016.
- How old were you when you quit, and WHEN (date) did you quit?
23 years old. I stopped on October 15, 2016.
- How did you quit (cold turkey or taper off)?
Cold turkey
- What type of Finasteride did you use – Propecia, Proscar, Fincar or other generic?
Propecia
- What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)?
1 mg/day
- How long into your use of Finasteride did you notice the onset of side effects?
Two weeks in, I noticed a decrease in libido and penile numbness.
- 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
[x] Complete Impotence
[x] Loss of Morning Erections
[x] Loss of Spontaneous Erections
[x] Loss of Nocturnal Erections
[ ] Watery Ejaculate
[ ] Reduced Ejaculate
[x] Inability to Ejaculate / Orgasm
[ ] Reduced Sperm Count / Motility
Mental
[x] Emotional Blunting / Emotionally Flat
[x] Difficulty Focusing / Concentrating
[ ] Confusion
[ ] Memory Loss / Forgetfulness
[ ] Stumbling over Words / Losing Train of Thought
[ ] Slurring of Speech
[x] Lack of Motivation / Feeling Passive / Complacency
[x] Extreme Anxiety / Panic Attacks
[x] Severe Depression / Melancholy
[x] Suicidal Thoughts
Physical
[x] Penile Tissue Changes (narrowing, shrinkage, wrinkled)
[x] Penis curvature / rotation on axis
[ ] Testicular Pain
[x] Testicular Shrinkage / Loss of Fullness
[x] Genital numbness / sensitivity decrease
[x] Weight Gain
[x] Gynecomastia (male breasts)
[x] Muscle Wastage
[x] Muscle Weakness
[x] Joint Pain
[x] Dry / Dark Circles under eyes
Misc
[x] 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)
- Penile fibrosis: Confirmed by my urologist through ultrasound.
- Facial changes: Prior to taking Propecia, I used to have a square jawline. Since stopping the drug, I’ve lost a significant amount of bone in my jaw and also put on a lot of fat in my cheeks. The result is a face that looks much rounder and more feminine.
- Spine curvature: My spine, particularly my lower back, has developed significant curvature. The bone seems a lot more brittle to the touch. Most days I wake up, my back will be in pain.
- Height loss: Possibly as a consequence of my spine curvature, I’ve lost about 2 inches in height. I can tell because friends I used to see eye-to-eye with now stand much taller than I do.
- What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug?
Medications:
- Clomid, 50mg, MWF
- Arimidex, 1mg, W
- Cialis, 5mg, daily
Supplements:
- Vitamin D, 5,000iu, daily
- L-Arginine, 1,500mg, daily
- L-Carnitine, 3,000mg, daily
- BCAAs, 1,800mg, daily
- CoQ 10, 300mg, daily
- Whey protein, 40g, daily
- 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)?
Blood Test 1 (Jan 17, 2017): About three months after I stopped taking Propecia.
- Estradiol: 27 (range < 56)
- FSH: 3.1 (0.7 - 11.1)
- LH: 2.5 (0.8 - 7.6)
- Prolactin: 8.4 (2.5 - 17.0)
- Testosterone: 501 (160 - 726)
- SHBG: 706 (288 - 1643)
- Vitamin D: 23.8 (30 - 100)
- DHT: 30 (16 - 79)
Blood Test 2 (April 1st, 2017): This is after taking Clomid 50mg, MWF, and Arimidex 1mg, W, for a month
- Estradiol: 41 (range < 56)
- FSH: 5.9 (0.7 - 11.1)
- LH: 8.8 (0.8 - 7.6)
- Prolactin: 5.2 (2.5 - 17.0)
- Testosterone: 862 (160 - 726)
- SHBG: 576 (288 - 1643)
- Vitamin D: 35.3 (30 - 100)
- DHT: 41 (16 - 79)
- PSA: 0.70 (<4.0)
- 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.
Prior to taking Propecia, I had no major health problems, so to speak. I would actually venture to say I was healthier than most people in my age group. I didn’t drink, didn’t do drugs, ate a paleo diet, and worked out four times a week in the gym. I remember taking a body fat percentage test and logging 5.3%. Looking back now, I suspect that my physicality was due to high levels of DHT. I put on and maintained muscle relatively easy; I had oily skin and occasional acne; and I had a very high libido.
I started taking Propecia in September, 2016, when I realized I was losing a significant amount of hair. As I’m sure many of you have experienced, it was distressing to shower and see hair falling out constantly, and distressing to see my hairline recede, especially at such a young age. Part of it may have also been body image issues I’ve dealt with since I was little, and feeling like I was physically inadequate (which, I would also hypothesize, led me to pursue such a healthy diet and workout so much). I heard of Propecia from a friend who was taking it and having good results, and figured, what the hell, I can always stop taking it if I feel any side effects. Every single day, I kick myself for being so foolish.
Everything was fine for the first two weeks. In fact, I noticed that the drug had given me even greater bouts of energy. But in the third week, I remember my penis feeling numb. It wouldn’t respond to any physical stimulation and felt like it was detached from my body. Around this time, I also remember my libido tanking. I wouldn’t be aroused no matter what I did. I was freaked out and started doing research online, and found this forum. Soon after reading a couple of the stories, I threw away all my remaining pills and vowed to never take the drug again.
Two weeks after quitting, my side effects improved significantly. Penile sensitivity returned, and I was again able to masturbate and achieve erections. But soon afterwards, I experienced a huge crash. I found it increasingly hard to maintain erections, and the erections I would get felt like they were 60-70% of my pre-fin ones. Orgasms were no longer pleasurable. My penis and testicles began to shrink significantly. In the gym, I noticed that I would get dizzy and nauseous after lifting heavy, and also found that my muscles would not swell up like they used to. In fact, they remained cold throughout the duration of the workout. My bones were also changing - I began losing bone in my jawline and my spine developed a curvature. I noticed I was putting on fat in my thighs, my hips, my cheeks, and my chest. I also began to suffer from depressive symptoms and thoughts of self-harm.
I decided that if I was going to have any chance at a recovery, I would have to eat healthy and continue working out (albeit at a much lower intensity). I also realized I would have to see a qualified physician who specialized in treating PFS. Based on the recommendations on this forum, I made an appointment to see Dr. Goldstein in February 2017, and arranged to have blood drawn. These were the results from my first blood test:
• Estradiol: 27 (range < 56)
• FSH: 3.1 (0.7 - 11.1)
• LH: 2.5 (0.8 - 7.6)
• Prolactin: 8.4 (2.5 - 17.0)
• Testosterone: 501 (160 - 726)
• SHBG: 706 (288 - 1643)
• Vitamin D: 23.8 (30 - 100)
• DHT: 30 (16 - 79)
During my visit to see Dr. G, I underwent a lot of tests, including heat/cold sensitivity tests on my penis, and a penile duplex doppler ultrasound, where they induce an artificial erection through injection and measure things like blood flow and plaque deposits. Looking over my test results, Dr. G revealed that I had “mild proximal corporal erectile tissue penile fibrosis,” which meant that I had developed scarring in my penis that was preventing erectile tissue expandibility and contributing to shrinkage. According to Dr. G, this could be mediated – in part – by taking PDE5 inhibitors so to induce smooth muscle relaxation. Dr. G also went over my labs and said that my levels of FSH, LH, and DHT were quite low for my age. Treatment would be aimed at stimulating T-levels to raise my DHT levels. Based on both assessments, I was prescribed Clomid (50 mg, MWF), Arimidex (1 mg, once a week), and Cialis (5 mg, daily). I also added the aforementioned supplements (Arginine, Carnitine, BCAAs, Vitamin D, CoQ 10) to my routine. I would check in with another blood test after doing this protocol for 4 to 6 weeks.
When I took Clomid and Arimidex for the first time, I remember briefly feeling like my pre-fin self. However, my symptoms came back with a vengeance. I started experiencing cognitive sides, including brain fog, emotional blunting, and difficulty focusing. My depression got even worse – I would wake up every morning and not want to get out of bed, not want to interact with anyone around me. My family members and my girlfriend became noticeably worried, but I just couldn’t cope with what was happening. I constantly thought of suicide and self-harm. I lost all spontaneous/morning/nocturnal erections, and the ability tog et erections, even while following the protocol and taking Cialis everyday. Muscle wastage and bone loss accelerated – I’m honestly amazed by the fact that I can even stand up. My penis is now shrunken to its size pre-puberty. I’ve lost a significant amount of length and girth down there, something like 50 to 60%. It literally feels like it’s dead.
I took another blood test this month to see what’s up:
• Estradiol: 41 (range < 56)
• FSH: 5.9 (0.7 - 11.1)
• LH: 8.8 (0.8 - 7.6)
• Prolactin: 5.2 (2.5 - 17.0)
• Testosterone: 862 (160 - 726)
• SHBG: 576 (288 - 1643)
• Vitamin D: 35.3 (30 - 100)
• DHT: 41 (16 - 79)
• PSA: 0.70 (<4.0)
My estrogen seemed to have crept up a little, but besides that, all my hormones seemed to have improved (FSH/LH/Testosterone/Vitamin D/DHT all increased). In fact, Dr. G said that I have a great hormonal profile. However, every single one of my symptoms has gotten worse. I honestly believe that I – and probably a some of the people on this site – are suffering from a form of androgen insensitivity. In my mind, there simply is no other explanation for why all my symptoms have gotten worse while my hormones have gotten better.
It’s been about six months since I quit taking Propecia, and I’m absolutely devastated. I’ve read a lot of member profiles, and it seems like for some people, they crash and their symptoms stabilize, with time bringing about noticeable improvements. Since my first crash, my symptoms have not stabilized. If anything, they’ve gotten progressively worse every single week (it’s like I crash every month). I begin work in September of this year, but I honestly don’t know how I will be able to function properly and pretend like everything is normal – particularly if my body and mind continue to change following this downward trajectory.
Please let me know what I can do to help fix – if not stave off – what’s happening to me. I don’t know what I should do anymore.