New member - Strong Theory!!

  1. Where are you from (country)?

US

  1. 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

  1. What is your current age, height, weight?

38, 6 foot 1 inches

  1. Do you excercise regularly? If so, what type of excercise?

Yes, weight lifting

  1. What type of diet do you eat (vegetarian, meat eater, raw, fast-food/organic healthy)?

no diet, eat what I like

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

Hairloss

  1. For how long did you take Finasteride (weeks/months/years)?

9 years

  1. How old were you, and WHEN (date) did you start Finasteride?

29

  1. How old were you when you quit, and WHEN (date) did you quit?

38

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

Cold turkey

  1. What type of Finasteride did you use – Propecia, Proscar, Fincar or other generic?

Propecia

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

1mg/day

  1. How long into your use of Finasteride did you notice the onset of side effects?

9 years

  1. 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
[X] Reduced Ejaculate
[ ] Inability to Ejaculate / Orgasm
[X] Reduced Sperm Count / Motility

Mental
[X] Emotional Blunting / Emotionally Flat
[X] Difficulty Focusing / Concentrating
[ ] Confusion
[X] Memory Loss / Forgetfullness
[X] Stumbling over Words / Losing Train of Thought
[ ] Slurring of Speech
[ ] Lack of Motivation / Feeling Passive / Complacency
[ ] Extreme Anxiety / Panic Attacks
[ ] Depression / Melancholy

Physical
[X] Penile Tissue Changes (narrowing, shrinkage, wrinkled)
[X] Penis curvature / rotation on axis
[X] Testicular Pain
[X] Testicular Shrinkage / Loss of Fullness
[X] Genital numbness / sensitivity decrease
[X] Weight Gain
[ ] Gynecomastia (male breasts)
[X] Muscle Wastage
[X] Muscle Weakness
[X] Joint Pain
[X] Dry / Dark Circles under eyes

Misc
[ ] Prostate pain
[ ] Persistent Fatigue / Exhaustion
[X] Stomach Pains / Digestion Problems
[X] Constipation / “Poo Pellets”
[ ] Vision - Acuity Decrease / Blurriness
[ ] Increased hair loss
[ ] Frequent urination
[X] Lowered body temperature

[ ] Other (please explain)

Tintinus, dry skin, red flushing face and skin, decrease in pleasure from orgasms

  1. What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug?

No treatment but taking Fish Oil, Zinc, 4000 Vitamin D, 3000 Vitamin C

  1. 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)?

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

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

Hi everyone. First of all let me say thanks to everyone that has ever posted or replied to a post with their treatment/symptomology. It has been extremely helpful to me as I have spent countless hours researching and comparing symptoms and treatments of hundreds of members. I have a very plausible working theory that I would like to share. I took propecia for almost 9 years symptom free until I decided to stop taking it. Once I stop taking it all of the symptoms we talk about happened to me, dry red face, chest, and arms, legs and forearms got thinner (also stated previously as muscle wasting, but as I share my theory I dont beleive it is muscle wasting at all), lost 25 pounds in 3 weeks, digestive problems, liver pain, lowered body temp, brain fog, etc and of course ALL of the sexual dysfunction side effects. This was roughly 5 months ago. I have an incredible working theory on all this which I believe encompasses and adequately explains all the symptomalogy we are exeperiencing. I can’t post it tonight because it is very long, but I will post it tomorrow night and the real science guys can use it as a frame work. I also believe I know why we are all in the same boat, what in particular unites our specific subset group. After reading countless posts, we all share a very unqiue personailty trait which is reflective of a specific body chemistry. Answer this, how many of you were outgoing, extremely energetic, talkative, passionate, goal oriented, politician like, before all of this happened? I am also willing to go out on a limb and suggest that those most adversley affected by finasteride (like myself) still have their hair, or mildy diffused thinning. Also, have you experienced (now and in the past) a phenomenon known as telogen effluvium or a diffuse form of hair thinning. Did anyone see massive thinning after a stressful change such as college stress or a bad breakup? Did you see yourself thinning (and understandably so) and others tell you that you were crazy for taking this or that you hair was fine? It had been mentioned before on this sight that this drug was tested on men with male pattern baldness, but not men with a natural receding hairline or perhaps a difuse hair thinning pattern. I have so much more to post and I will do so tomorrow, try to explain the pattern or cycle we are all caught up in. These side effects are horrible, I know first hand. It is devastating and transforms our personality types, but there is hope comming I truly beleive. I am located with NY city and I have a ton of doctors working on this such as Jacobs and Mulhall, as well as other endocronologists in the city.

  1. Where are you from (country)?

US

  1. 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

  1. What is your current age, height, weight?

38, 6 foot 1 inches

  1. Do you excercise regularly? If so, what type of excercise?

Yes, weight lifting

  1. What type of diet do you eat (vegetarian, meat eater, raw, fast-food/organic healthy)?

no diet, eat what I like

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

Hairloss

  1. For how long did you take Finasteride (weeks/months/years)?

9 years

  1. How old were you, and WHEN (date) did you start Finasteride?

29

  1. How old were you when you quit, and WHEN (date) did you quit?

38

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

Cold turkey

  1. What type of Finasteride did you use – Propecia, Proscar, Fincar or other generic?

Propecia

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

1mg/day

  1. How long into your use of Finasteride did you notice the onset of side effects?

9 years

  1. 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
[X] Reduced Ejaculate
[ ] Inability to Ejaculate / Orgasm
[X] Reduced Sperm Count / Motility

Mental
[X] Emotional Blunting / Emotionally Flat
[X] Difficulty Focusing / Concentrating
[ ] Confusion
[X] Memory Loss / Forgetfullness
[X] Stumbling over Words / Losing Train of Thought
[ ] Slurring of Speech
[ ] Lack of Motivation / Feeling Passive / Complacency
[ ] Extreme Anxiety / Panic Attacks
[ ] Depression / Melancholy

Physical
[X] Penile Tissue Changes (narrowing, shrinkage, wrinkled)
[X] Penis curvature / rotation on axis
[X] Testicular Pain
[X] Testicular Shrinkage / Loss of Fullness
[X] Genital numbness / sensitivity decrease
[X] Weight Gain
[ ] Gynecomastia (male breasts)
[X] Muscle Wastage
[X] Muscle Weakness
[X] Joint Pain
[X] Dry / Dark Circles under eyes

Misc
[ ] Prostate pain
[ ] Persistent Fatigue / Exhaustion
[X] Stomach Pains / Digestion Problems
[X] Constipation / “Poo Pellets”
[ ] Vision - Acuity Decrease / Blurriness
[ ] Increased hair loss
[ ] Frequent urination
[X] Lowered body temperature

[ ] Other (please explain)

Tintinus, non-allergic sinusitus, Eustachian Tube Dysfunction, dry skin, red flushing face and skin, decrease in pleasure from orgasms

  1. What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug?

No treatment but taking Fish Oil, Zinc, 4000 Vitamin D, 3000 Vitamin C

  1. 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)?

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

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

Hi everyone. First of all let me say thanks to everyone that has ever posted or replied to a post with their treatment/symptomology. It has been extremely helpful to me as I have spent countless hours researching and comparing symptoms and treatments of hundreds of members. I took propecia for almost 9 years symptom free until I decided to stop taking it. Once I stop taking it all of the symptoms talked about here happened to me, dry red face, chest, and arms, legs and forearms got thinner, lost 25 pounds in 3 weeks, digestive problems, liver pain, lowered body temp, brain fog, etc and of course ALL of the sexual dysfunction side effects. This was roughly 5 months ago, some of the symptoms have decreased in severity such as brain fog, muscle twitching of lower legs, testicle pain and others remain. Currently under the care of Dr. Alan Jacobs in the city. Without a doubt I feel the cyclic nature of the symtoms as I have almost all of them. Bloodtests revealed, extremely low range testosterone, low vitamin D, and most notably high cortisol. I Have not tried any real treatment plans, I am not a big fan of Testosterone injections as I dont believe that is the root cause or our probelms but merely a symptom. This is the first time I have ever posted anything on-line and I would encourage all the lurkers out there to come forward with your story as it adds to the general awareness and understanding of this syndrome.

I also want to add that I am in the NY city area. I would like to get a group together to talk about our symptoms and potential treatments, as well as any advice we have received from doctors or the medical community in general. PM if you are interested in meeting.

I am not in NY, but would certainly like to get together as a group. I wish this was easier. Hell, I wish there were doctors who were interested in getting groups of us together to assess our collective symptoms and experiences…

hey finatruth, welcome to theforums! have u presented your theory u wrote to dr jacobs?

Vittujoo- yes I spoke with Dr. Jacobs for about an hour. He likes it and was very interested. The problem was he said he really didn’t understand the affects of histamine on the overall body, he said it wasn’t really his area of expertise. Unfortunately he believes this site is the subset of the subset that is affected. That we are the ones that didn’t get better after elevating our testosterone levels higher. His method of treatment is to do just that, while balancing estrogen. He commented that although my estrogen was low, my testosterone was extremely low so estrogen dominance was very plausible. And what is estrogen dominance?? It’s really progesterone deficiency.

finatruth you have talked about penile shrinkage reversal… do yoi also suffer facial bone wastage and if so did it reverse at least a bit?

Yes, it’s not bone loss, even yours, bone loss doesn’t occur overnight, collageen loss can.

I see this was 2 years ago on this post… Are u able to screw now or are u still having erectile dysfunction??

it didnt occur overnight… it took over 12 weeks to lose the amount of bone until now. I know this with absolute certainty, because i can feel my bone structure is smaller. Im not stupid and i dont have a distorted perception. This is real.

When I stopped fin I got real weak and skinny… Looked like I had a disease or something… When I got on TRT I put on weight and muscle pretty fast… Hope this helps

What was your experience with Dr. Mulhall like? I saw him around the same time you did and found him to be very dismissive.