New Member - Recent Crash

Member Stories
#1

  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 search. It was 3 years ago so I’m not sure of the exact terms, but something like “propecia side effects”

  3. What is your current age, height, weight? 25, 5’10", 175 pounds

  4. Do you excercise regularly? If so, what type of excercise? Yes, weightlifting 3-4 times a week, occasional jog with my dog, basketball on the weekends (weather permitting)

  5. What type of diet do you eat (vegetarian, meat eater, raw, fast-food/organic healthy)? Meat eater, very rarely have fast food.

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

  7. For how long did you take Finasteride (weeks/months/years)? About 4 years

  8. How old were you, and WHEN (date) did you start Finasteride? I believe I was 17, not sure of the exact date. I would find out from my dermatologist but I haven’t spoken with them since I flipped out after first experiencing my side effects/learned of PFS.

  9. How old were you when you quit, and WHEN (date) did you quit? I was 21 when I quit, it was in October/November of 2010.

  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? Propecia

  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? I didn’t notice many side effects while on the drug, but when I had a bad sexual episode I thought it could be the drug, which is why I quit and found other symptoms of PFS.

  14. 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
[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
[ ] Extreme Anxiety / Panic Attacks
[ ] Severe Depression / Melancholy
[ ] Suicidal Thoughts

Physical
[X] Penile Tissue Changes (narrowing, shrinkage, wrinkled)
[ ] Penis curvature / rotation on axis
[ ] Testicular Pain
[ ] Testicular Shrinkage / Loss of Fullness
[ ] Genital numbness / sensitivity decrease
[ ] Weight Gain
[ ] Gynecomastia (male breasts)
[X] Muscle Wastage
[ ] 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
[ ] Frequent urination
[ ] Lowered body temperature

[ ] Other (please explain)

  1. What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug? None, I try to eat a lot of fruit and vegetables, exercise regularly and although this doesn’t really count I quit smoking.

  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)?

  3. Anything not listed in the above questions you’d like to share about your experience with Finasteride?

  4. Tell us your story, in your own words, about your Finasteride usage and side effects experienced while on/off the drug.

I’ll do my best to keep this short and sweet, I know background stories are important but a majority of members are looking for important details/anything that can help. However there are only a handful of people that are aware of the issues I’m having, and after reading this forum for so long it’s going to be tough for me to hold back. I’m finally posting to get this off my chest, contribute to the research, and maybe find some answers. I appreciate any/all advice from you guys.

I started Propecia when I realized I was losing my hair at an early age, my father is bald so I realized I would be too, I just didn’t want it to be so early. While on the drug I never really noticed any side effects, but when I had a bad sexual episode in college I remembered the prescribing Dr. said the only known side effects were sexual and would diminish after quitting the drug. So, I attributed the episode to the Propecia, did some research and after finding this website and the damage drug has done to so many others I decided to quit (cold turkey). I went through the usual initial recovery phase, and had a crash soon there after. I was referred to a urologist, who told me it was all in my head, and gave me some Cialis. He did some blood tests, I don’t remember exactly which ones, but I do remember that he said my testosterone was above normal levels. At this point most of my side effects were just sexual, and the only mental effects were a direct result of having the sexual sides. As time went on I thought I was getting better, but I guess it has been so long that I don’t really know what “normal” feels like. After college I went to the Boston Medical Group, since my problems were still mainly sexual. The Dr.'s there told me they thought I had a “venous leak” because of my inability to maintain an erection, has anyone else been given this diagnosis?

Since quitting Propecia I’ve struggled able to manage my life. My lack of energy, low libido, erectile dysfunction and “mental fog” have been my biggest issues and in the last year I’ve tried to live a healthier lifestyle with the hopes that this would help offset some of my symptoms. I quit smoking cigarettes 11 months ago, quit smoking pot 2 and a half months ago, have been eating better and exercising more.

On to the crash. Since quitting pot my mental side effects have gradually gotten worse. I find it extremely difficult to focus and am constantly fatigue. Like others have reported, I feel less intelligent than I did 6 months ago. Could the pot have been a mask for these side effects? I do not want to go back to smoking, and the only other lifestyle change I’ve made since then is that I go to the gym more often. I’ve been hesitant to go back to the Dr., I thought that I would be able to beat this on my own.

I’ve been off Propecia for over three years, I thought this would have all been behind me by now. Suicide was on my mind for a long time, but I can’t do that to my family. Am I going to be like this for the rest of my life? Please guys, I really need some guidance.

#2

Are you doing any exercise?

#3

Yes, I do weightlifting at the gym about 3-4 times a week, walk/jog with my dog 2-3 times a week, and play basketball occasionally.

I’d like to think that eventually things will even out, but I haven’t seen many full recovery stories which is making me think that either things will be like this forever, or we will need help from doctors to get better from PFS. Does anyone have any updates from studies that are in the works? What has been happening with the class action suits?

#4

UPDATE:

I went to the doctor recently, just a normal physician, to get a physical and his take on my condition. He took blood tests and reported that my Thyroid was low (I will be getting copies of the blood tests and post official results). He prescribed me a low dose (25 MCG) of Levothyroxine, which I have been on for about 2 weeks now. Since then I’ve noticed some improvements in my sides including: less brain fog, more energy, decreased dry mouth, increased gum health and oral hygiene, and increased blood flow to my penis. Has anyone else been diagnosed with an underactive thyroid? He also referred me to an endocrinologist which I will be seeing soon.

My apologies if this has already been covered. This forum has a lot of information and it’s not as easy for me to read as it used to be.

#5

UPDATE:

After taking Levothyroxine for about 4 weeks, I discontinued due to the following side effects: headache, shortness of breath, irregular heartbeat, and back acne which was the least of my concerns.

POSITIVES:

The medication did make me feel somewhat better for about a week (see previous update), and for the duration I was on it my penis returned to its normal size while in a flaccid state, and my erections were much better and sustained for much longer. I think that this is a significant finding since I hadn’t had erections like that for quite some time. Although I would like to get better naturally, it’s too bad I had to stop taking the medication because it was a good feeling to have bloodflow back down there.

BLOOD TESTS:

My primary care physician did some basic blood work, probably not everything that I need, so the only relevant numbers are as follows:

TSH - 5.59
FREE T4 - 1.23
TESTOSTERONE - 823

The rest of the blood results are mainly vitamins, blood cell counts, lipid profiles, etc.

After following up with two other endocrinologists, one seemed to think that my thyroid gland is damaged beyond the point to where it can produce hormones naturally, and the other is convinced that I’m depressed, this is all in my head, and that according to my blood tests (aside from the TSH levels) I should be “as healthy as a horse.” Both ordered more blood work to be done, and one also recommended that I see a neurologist.

I’d like to find one doctor and stick with him/her, instead of going back and forth to multiple. I heard that there is a good doctor in Manhattan, Alan Jacobs, who deals with PFS. Can anyone recommend him?

Any other suggestions on how I can optimize my health and work towards recovery is greatly appreciated.

I do hope that we can all get better from this and that permanent damage has not been done to prevent a recovery, please shed some optimism on this situation, I could really use it.

#6

UPDATE:

After going back to my PCP, he recommended that I go back on Levothyroxin, but at a lower dose (half a pill = 12.5 mcg). I’ve been on it for about a week and although it does help somewhat, I still get shortness of breathe and an irregular heart beat. So, I definitely don’t see this being a long term solution.

QUESTION:

Since crashing in February, I have had increasingly worse joint pain and cracking, mostly in my knees. I can barely get up after bending down, and can no longer run without pain. What is the cause of this? It feels like my cartilage has been deteriorating. Any advice on how to manage/improve this? Or is my cartilage gone for good?

It’s clear that all of my symptoms have been increasingly getting worse since quitting pot (the beginning of my crash). The only other lifestyle changes I’ve made since then include going to the gym more and masturbating more. Recently I’ve been having a lot of sex with the help of the thyroid medication.

I’d like to try abstaining from sex, maybe for a month or so, to give my endocrine system some relief. Has anyone had any positive experiences with this? The longest I’ve gone without ejaculating since the crash was 2 weeks and although I did feel a little better, shortly after my next ejaculation I felt completely wiped out.