7yr fin user with many cognitive and physical sides 5 yrs on

  1. Where are you from (country)?
    United States

  2. 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

  3. What is your current age, height, weight?
    34, 5’9”, 200 lbs

  4. Do you excercise regularly? If so, what type of excercise?
    3 times weekly - Cardio

  5. What type of diet do you eat (vegetarian, meat eater, raw, fast-food/organic healthy)?
    Home cooked meals, lots of veggies and lean meats

  6. Why did you take Finasteride (hair loss, BPH, other)?
    Hair loss

  7. For how long did you take Finasteride (weeks/months/years)?
    7 years (possibly more)

  8. How old were you, and WHEN (date) did you start Finasteride?
    Approximately age 20, around 2001

  9. How old were you when you quit, and WHEN (date) did you quit?
    Approximately 28, around 2007

  10. How did you quit (cold turkey or taper off)?
    Cold turkey

  11. What type of Finasteride did you use – Propecia, Proscar, Fincar or other generic?
    First propecia, then finesteride quartered

  12. What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)?
    1 mg/day

  13. How long into your use of Finasteride did you notice the onset of side effects?
    Early on I noticed some issues with my personality…i.e…some difficulty during conversations, avoidance of social situations, more anxious. I also had some pain after ejactulation after drinking alcohol. I never would have chalked any of this up to propecia. Most of the ongoing side effects though that I am currently experiencing started after quitting and then ‘crashing.’

  14. What side effects did you experience while on the drug that have yet to resolve since discontinuation?
    All.

Put an X beside all that apply:

Sexual
[ x] Loss of Libido / Sex Drive
[ ] Erectile Dysfunction
[ ] Complete Impotence
[x ] Loss of Morning Erections
[ ] Loss of Spontaneous Erections
[ ] Loss of Nocturnal Erections
[ ] Watery Ejaculate
[ ] Reduced Ejaculate
[ ] Inability to Ejaculate / Orgasm
[ ] Reduced Sperm Count / Motility

Mental
[x ] Emotional Blunting / Emotionally Flat
[x] Difficulty Focusing / Concentrating
[x] Confusion
[x ] Memory Loss / Forgetfullness
[x ] Stumbling over Words / Losing Train of Thought
[x] 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)
[ ] Penis curvature / rotation on axis
[x ] Testicular Pain
[ ] Testicular Shrinkage / Loss of Fullness
[ ] Genital numbness / sensitivity decrease
[x ] Weight Gain
[x ] Gynecomastia (male breasts)
[ ] Muscle Wastage
[x ] Muscle Weakness
[x ] Joint Pain
[x ] Dry / Dark Circles under eyes

Misc
[ ] Prostate pain
[x ] Persistent Fatigue / Exhaustion
[x ] 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)
TMJ, joint pain, fatigue, word finding, muscle weakness, fasciculations, pain on tops of feet, loss of nocturnal erections, difficulty typing and reading, trouble concentrating, trouble speaking/stuttering, blurry vision on one/both eyes, nighttime hallucinations (I would wake up but still be seeing something that wasn’t there), pins and needles, shooting pains, depression, anxiety, thoughts about harming myself and others, general left side of body weakness, goosebumps on right side of body only (unless a strong emotion/temperature then both sides), swollen legs, diarrhea/incontinence, eye pain / headaches, extreme hunger, loss of libido, general malaise, shaking, fast heartbeat, lower temperature, difficulty sleeping / wakeful nights, reading out loud (i.e…reading a book to my kids)

  1. What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug?
    50,000 IU Vitamin D3 – 2 months
    2,000 IU Vitamin D3 – daily
    B12 Vitamin – daily
    L-Tyrosine – daily for 3 months; since stopped no effect

  2. 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 didn’t really have any pre-fin tests however I did have low vitamin D (26; range 30-80) and low Testosterone (280; range 300-1080).
    I also had Epstein-Barr at some point…my current infection numbers were low however my historical numbers were quite high (outside the ranges provided).
    I’m working on putting together all of my labs for folks to look at.

  3. Anything not listed in the above questions you’d like to share about your experience with Finasteride?
    I’m past the point of pitying myself for taking the fool drug; I want to figure out what happened / is happening to our bodies as a result and FIX IT or stop the progression. Some things seem to have gotten better (transitorily) but it seems to be a real rollercoaster of symptoms that will clear up for a while but then come back. I find that some of my symptoms flare up if I push my body too hard physically as well.

  4. Tell us your story, in your own words, about your Finasteride usage and side effects experienced while on/off the drug.
    I started losing my hair at an early age…even in high school. I was a smart, funny, and popular kid who played sports but also enjoyed hanging out with all groups of kids. Didn’t do drugs, didn’t drink. This was the same during college however at this point in my life I became more concerned about the hair loss and I was determined to do something about it and set up an appointment with my dermatologist to get a prescription to propecia. I took it for a number of years (7 years though not sure exactly, I’m requesting my medical records to get actual dates) and experienced a few oddities (more awkward in social situations, weight gain, puffy nipples, anxiety, weird pain after ejaculating when drinking) but I didn’t chalk any up to propecia and instead assumed I was getting older, my metabolism was slowing down, etc.

I finally quit taking the drug (2007) a little over a year before my first child was born (2008). Although I had been taking the drug for quite some time I remembered back in the day reading about a precaution to make sure pregnant women do not come into contact with the pills. I didn’t want to risk any accidental exposures as my wife and I were going to try to get pregnant so I figured I’d stop taking the pills and give myself a little time to get all of the drug out of my system (I believe the labeling said it would clear out of my system in a month). Plus I was married and cared much less about physical appearances (not sure if that’s good or bad)…

I continued to experience the same initial symptoms off the drug as I did on the drug when I first stopped taking it. Nothing so big that I couldn’t deal with it in my every day routine though…and I really didn’t give it a lot of thought. I just chalked it up to all the reasons I listed initially. So in August of 2008 our first child was born, our second in 2010. Right around the time of our second child being born I had what is referred to on this site as a “crash.”

From 2008 – 10 there were several things going on in my life that preceded the crash. After starting to have children we had one then two terrible sleepers. I would get between 4-6 hours of sleep each night which was interrupted often. Not fun. I was also going through an extremely stressful time at work. I remember a meeting in late 2010 where I was hearing one thing but I was spelling the words in a dyslexic way on my notepad. I remember looking down and thinking WTF??? I remember making the “I didn’t get enough sleep excuses” when I couldn’t follow a train a thought and stopped speaking mid sentence. I found I wasn’t able to concentrate as well and get in the “flow” state much anymore either (especially when programming). I rarely exercised and ate whenever I was hungry (which was a lot). I ended up taking a new job in January of 2011. Then in February 2011 I “crashed.” I had no energy, extreme brain fog, anxiety, depression. It lasted solid for 3 months with recurring bouts thereafter. I was tired, extremely so, even after a good nights sleep.

I had no idea what was wrong with me…I went to doctors for blood panels, sleep studies, MRI’s, psychiatry, etc. I was diagnosed with sleep apnea in July 2011 (my dad has it) and thought “I’ve found it” however after 2+ years on the CPAP and there hasn’t been much change to any of my symptoms. Most of the time the MD’s made me feel like a hypochondriac and I heard more than once that I needed to lose weight and that the issue is stress related. I had low vitamin D and low testosterone otherwise everything else came back fine including the MRI (brain with contrast, no spinal cord).

I’ve had the following symptoms during and since my “crash”:
TMJ, joint pain, fatigue, word finding, muscle weakness, fasciculations, pain on tops of feet, loss of nocturnal erections, difficulty typing and reading, trouble concentrating, trouble speaking/stuttering, blurry vision on one/both eyes, nighttime hallucinations (I would wake up but still be seeing something that wasn’t there), pins and needles, shooting pains, depression, anxiety, thoughts about harming myself and others, general left side of body weakness, goosebumps on right side of body only (unless a strong emotion/temperature then both sides), swollen legs, diarrhea/incontinence, eye pain / headaches, extreme hunger, loss of libido, general malaise, shaking, fast heartbeat, lower temperature, difficulty sleeping / wakeful nights, reading out loud (i.e…reading a book to my kids)
(I’m sure there have been more symptoms I just can’t remember them all).

As for family history - all four of my grandparents are still alive ~90 years old and both my grandmothers have Type II diabetes however this didn’t develop until much later in life…otherwise everyone is happy and healthy including my parents.

In all honesty my cognitive and physical sides are terrible and I am convinced this is a neuro issue. My symptoms could be overlaid on quite a few central nervous system diseases. I’ve had tests for other maladies that can cause some of the symptoms I have (i.e…Lyme, Syphilis, HIV/Aids, you name it – all negative). I have better days and worse days however there is a typical baseline of symptoms every single day. My current days are a mix of fasciculations, a little blurry vision, anxiety, pins and needles in fingers and toes, trouble concentrating, some muscle weakness when tired or just waking up, trouble speaking.

1 Like

Hey man,

Your testosterone is super low. This will cause all the symptoms you are having.

What is your e1,e2 and e3 at?