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BEFORE POSTING IN THE MEMBERS STORY SECTION, PLEASE COPY/PASTE THE FOLLOWING SYMPTOMS/PROFILE TEMPLATE INTO YOUR POST.

This is so that we can more easily track our symptoms and hopefully find patterns in our syndrome. This will also help others understand your background, and help us try to determine what are the most commonly experienced side effects after discontinuation of Finasteride.

COPY AND PASTE THE FOLLOWING INTO YOUR OWN POST, then answer the questions.

  1. Where are you from (country)?

USA

  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?)

Had testicle pain after taking a propecia- google took me here.

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

5’11", 33, 170-175

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

Yes. Almost every day. Weights, sports. run a 5k 4-5x/week, bike. I compete in tris, active in the mountains.

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

Very little meat, but on occasion. A cheatin’-vegan, I like to say.

  1. Why did you take Finasteride?
    Masochism, vanity, BPH

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

1/2 a pill, one time. ONE-HALF a pill, ONE TIME!

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

  2. What type of Finasteride did you use?
    Propecia

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

About 2 hours

  1. What side effects did you experience while on the drug that have yet to resolve since discontinuation?
    x = current, \ = resolved after initial week
    Sexual
    [ x] Loss of Libido / Sex Drive
    [ x] Erectile Dysfunction
    [ ] Complete Impotence
    [\ ] Loss of Morning Erections
    [\ ] Loss of Spontaneous Erections
    [ ] Watery Ejaculate
    [x ] Reduced Ejaculate

Mental
[] Emotional Blunting / Emotionally Flat
[ ] Difficulty Focusing / Concentrating
[ ] Confusion
[\ ] Memory Loss / Forgetfullness
[\ ] Stumbling over Words / Losing Train of Thought
[x] Extreme Anxiety / Panic Attacks
[x ] Severe Depression / Melancholy

Physical
[x ] Penile Tissue Changes (narrowing, shrinkage, wrinkled)
[ ] Testicular Pain
[ ] Testicular Shrinkage / Loss of Fullness
[ ] Genital numbness / sensitivity decrease
[ x] Muscle Wastage

Misc
[ ] Vision - Acuity Decrease / Blurriness
[ ] Frequent urination
[ X] Lowered body temperature

  1. What treatments have you undertaken to recover from your side effects since discontinuation of the drug?
    Zinc, mgm, vit-d, b-complex, Niacin, Omega 3s after initial crash.

  2. If you have pre or post-Finasteride bloodtests, what hormonal changes have you encountered since discontinuing the drug ?
    First blood tests indicate all T related hormones are low or off the charts low.
    Free T: 60.9 [48.2-169.6]
    T Total: 249 [270-1070]
    Bioavail Testos: 149 [113.1-397.7]

Albumin: 4.5 [3.5-5.0] (Nailed that one baby!)

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

Niacin works great. Zinc too, I think. When I am failing down I take me vit cocktail, usullly washed down with some refreshing coconut water and I feel a little better. Ensures nighttime/am erections.

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

Back in Oct I went to see a dermatologist about a celloid scar on my neck and ended up asking about hair loss, which I was starting to notice when I would brush away hair from my desk area every evening. Two options, I was told. Rogaine or Propecia, they both work. I ask about taking a pill every day, are there any sides, and would he proscribe it to his own son? I got the usually story, safe as a skittle, he would do it himself if he still had hair. One of the cute old nurses tells me, “oh, you’re too young and handsome to lose your hair!” Aww, I think… Doc says he’s prescribed it 100s of times, only had a few reports of sides, usually a slightly decreased libido. I figure I’d give it a try, maybe for a year, but I was nervous about taking a pill on a daily basis.

**Note that I am really sensitive to drugs. Not in a bad way, but I have a very very healthy and probably strong heart. Any drug I take, for rec or med purposes, I feel it within minutes and usually at a much stronger level than anyone else.

So I cut the pill in half and down it before bed.

T+2hrs: My testicles are in a vice, and I ask myself what rabbit hole did I just fall into. Sort of like you’re in a coffin being lowered and lowered and lowered and lowered into a grave with no bottom. My brain FEELS like it’s under attack, and my testicles are killing me. At some point, probably T+3-4hrs I end up in the bathroom maybe wanting to vomit. I can’t say what happened next, but I woke up asking myself “Where the feck am I?” I am freezing cold and naked (sleep nude baby, feels great) and see these wiered things around me. It takes a few mins to realize that I am on the bathroom floor and sort of looking up at the bottom of the tub. But I can’t move and try to wrap myself in a bathmat to try to keep warm. I consider screaming to the neighbor downstairs for help, but decide against it (I recall that it would be embarrassing to be passed out naked on the bathroom floor!).

Day 2: I feel messed up in the AM, but OK to drive 3.5hrs to my parents’ place for a long holiday weekend. The
Testicles hurt. I leave the pills in my apartment, and debate taking any more. I said at the least I would take a few days off.
Day 3: Mom and I both kick ass in the local 5k race, damned if I’m going to let my dysfunctional testicles stop me from winning (haha, at least for the age group) this race. I feel impotent. Junk is like rubber. right testicle is super low. ZERO ZERO libido. I also had this nervous energy, couldn’t sleep, kept fidgeting. Couldn’t talk and keep having to go to sleep. Worst part, my dear, dear, great uncle and his wife were the only ones to join my parents and me for thanksgiving. The guy is just the nicest, nicest guy in the world, almost two nice. He and his wife met while working at Merck decades ago (he is like 94 now, his wife may be 91, who knows). She was one of a small group of people there who literally invented cortisone cream. Not sure what he did. Buy he is so touching and wants to talk about all those old family members now forgotten by everyone but him, the last of his generation of mohicans. And he reads out a poem that his older brother once wrote for him, which is really nice and witty and all, but in a sly, this is edgy in a 1964 type of way between brothers.

And there is this line that he reads (referencing his employer, Merck, and their product):
“Keep the stock, but don’t touch the stuff he says!”

I want to vomit. The line, and my forced, incredulous laughter is seared in my brain.

Day 4: testicles still hurt, I google propecia and find a couple of interesting things. Docs say it’s normal, keep taking it and it will go away. I chuckle and decide that my body tells me when it doesn’t like something. I also find this site. Actually pm brainbug who is kind enough to respond and chat onskype (thanks man!).
Day 6: I call my dermatologist who says this all sounds really strange, maybe I should see a urologist lol.
Kind of pisses me off that he doesn’t say sorry, even sound concerned. I realize later after talking to other people that he realizes (quite correctly) that he may have a lawsuit coming.

Week 2:
I start up my supplements and eat a ton of healthy food, lots of spinach. I start to feel better and am recovering. Libido comes back a little, I can make things work down there, and it gets easier.

Week 3: Visit the gf for the weekend and have some good sex. Tell her about what’s up, she is fantastic. After 4 days of sex, some but not much (1-3 drinks per night) drinking I notice a slight decline. Harder to have good sex by that last day, sort of gets soft. She tells me later that she noticed that I lost some size, both in the piece and in the balls. I maybe have a few slight crashes, anxiety attacks that weekend. Go out for a few beers and polish off a healthy dram of whiskey at my apartment and feel awful the next day. Decide I need to cut out the alcohol for a while.

Week 4: Feeling better. I add Niacin to my regime, it seems to work fantastic. Wake up hard sometimes at night, in the AM too after I take it. Good add on there. Around X-mas I am up in the mountains knocking off some of the winter peaks. Includes a 17 mile hike on the 23rd and an 11m hike on the 27th, kick ass on both and feel awesome. I am thinking I am recovered. Lots of super health living, workin’ it at the gym, eating great and healthy food (thanks mom for those frozen meals!)

Week 5: Gf is in town for NYs, we head into the city the wknd before, I have a couple drinks, like one or two scotch (love scotch, that’s a hard thing to give up, I just feel so warm and waspy inside) a night. Sex is great on first couple of nights, on ny eve also, but then declines to wow, not so good.

Jan 4th. I have a crash. I always wondered what this feels like, as I never found a good description of it on here, just things like “you’ll know”. I wasn’t sure at first, but I figured it out pretty quick. It was like someone put a vaccum up to my brain and sucked everything out of it and flipped off the switch. Body had to follow suit. I laid under my desk for a few minutes then manage to drive home, not sure if I would make it. Sleep for an hr, and force myself to go to the gym, where I am afraid I will fall asleep while attempting to run on the treadmill.

Week 6: decreased sexual function, onset of depression. Never will allow this to control me, but I do sort of spontaneously cry a few times. Go back to my Prim Care Dr, a nice guy and willing to help if not sure how. He also doesn’t want to prescribe anything, which is actually is the main reason why I go to him. Still, he has me tested for some of the hormones from your rec list here, all of which come back low. Says he really has no idea on any of this stuff, though so he sends me to an endo, who seems lost and just says that I need my T rested, it was probably just wrong. I will try and get to a neuroendo soon, which seems like the best hope, if there is one, of getting someone interested. Doctor’s certainly don’t get any awards for thinking beyond the textbook. Seems like all the ones I meet are not capable of creative thinking or problem solving.

I told my parents last weekend. Best decision ever. I am assembling a small team, which now consists of gf, mom, and dad. Will add a couple of brothers, close friends who are like brothers, and a wonderful boss to that team in the near future. It feels so great to talk to people who are happy to listen this stuff and who really, really care. Quite a change from those well paid MDs, who seem lost by the facts.

I’ll soon add a lawyer to rain fire on Merck and my beloved dermatologist. Personally, I could care less about the $, especially about the dermo, but if nothing else, this damn-well will hopefully put the fear of God into at least the dermon over prescribing this stuff while telling people its completely safe, and that the side effects consist of “a little less libido”/.

On another note, I’ve been reading this for a while, but didn’t want to sign up til I was ready to do so, which for some reason became tonight. But you guys really rock. You’re down, hell, maybe you’re out, but you sure as hell aren’t taking this laying down. God, you guys are creative people, you learn things that you have no business learning (but you do!) and you work as a group to share ideas and results. You all would be leaders and rock stars in anything you do, and well, now you guys come across like leaders and rock stars and fighters in this horror story of a challenge. And you create your own system where the one there for you failed. Lest it’s not clear, I’m impressed. Add one more to your ranks. Just ordered progesterone from biovea, will let you all know how it goes.

I want to give a quick update and post some of my test results. Overall I am feeling better mentally and more or less physically, though I can feel my body becoming softer, particularly in the chest and around the waist where my former small gut/belly has gone from a solid core to sort-of-jiggly. This despite a super healthy diet and working out every day. I should also note that this AM at the gym I almost passed out while on the bike, which is something new to me. But other than that, I feel good mentally. Can’t say for sure that its related, but I have felt much better since I started rubbing my palms with a bit of the progesterone cream in evening.

Test results from 1/8/13

One sig off result from the Full Metabolic Panel:

Bili T(total Bilirubin) 1.5 (0.2-1.3)
*Bili T indicates red blood cell health. An off score for Bili T indicates a possible liver disease.
CBC Blood tests returned all normal.

Vit D 36.7 (30-100)
Looks like for VD you want to be in the low-mid 30s. I am taking vit D but stopped a couple of days before having blood drawn for this test.

Test Total 243 (270-1070)
Sex Horm Bind Glob 20.7 (17.3-65.8)
Free T 61.6 (48.2-169.6
Bioavil Testos 137.9 (113.1-397.7)

Total T is out of range low, all the other indicators are at the low end of the scale, and probably off the range low for my age and normal health level.

eGFR is in range

The regular endocrinologist sent me back for yet another round of tests (I asked her to test for progesterone in addition to what she wanted to go with) and possibly an MRI on the pituitary, I think. Said something also about Iron. She couldn’t fathom a reason to test for 3-adiol-G, so I may have to do that myself. I have an appointment with the clinical research reproductive endocrinology group in a couple of weeks.

Hi all,

I check the board less and less, but I wanted to make sure to come back and post a note note that I’ve passed my first year anniversary on the forum. Anyhow, I took an extremely limited dose of propecia in 2013, had immediate and horrible testicle pain and most of the rest, including mood swings and some major depression, and had many of the usual problems down below. I lived pretty healthy before, but after things went bad I really turned up the healthy living. The gym became a major, everyday hobby, I started taking on tough physical challenges (completed a half iron-man this past summer and have my sites set on a full next year) and I started eating really, really healthy. I also replaced gulping down my drinks with tiny sips from beers that I would nurse for hours. And I’ve seen tons of doctors. I told some close friends and family and got some fantastic support when I needed it.

One year later: My blood levels are still a mess, and have shown no improvement. My last ones were the most depressing. On a positive, not that I care so much anymore, hair loss, which was rampant prior to taking propecia, has completely ceased. In general, I can perform pretty well, if hardly up to my old standards. But now I am a little more relaxed on what I eat, and when I go out I might even grab a few drinks and enjoy myself. On the whole, life is pretty good, and I no longer have the mood swings and panics. While I don’t consider this a full recovery (due to the blood levels, etc), I have come a long ways. My fiance moved in, I’ve got a demanding job that I really enjoy, and I am have met some physical challenges (bench pressing, race times, trimming back the last of my post-college belly) that I’ve had for years.

In look at my experiences with propecia as a real wake up call to live healthy, eat healthy, and be super skeptical of doctors, medicines, and the pharmaceutical industry. In some ways, I think the challenge and the lifestyle changes have reshaped me into a better person.

My best advice is to stay positive, really, really, commit to living and eating healthy, and whatever you do, don’t stop living. Avoid the downward spiral.

1 Like

What specifically bothers you about your blood results?

Test = 130 (249-835)
LH 1.2 (1.5-12.4)
FSH 1.3 (1.7-8.6)
Free T 2.3 (13.5-39.1)

you are out of range low, are you on TRT? any think like VitD3? I mean how are you managing your life at such low T.

I’d say I manage things pretty well and live a pretty good life. You can’t control what you can’t control, but the rest is pretty damn good. But I am probably going to try trt sometime next year, just waiting until I want to have kids.

I’d say I manage things pretty well and live a pretty good life. You can’t control what you can’t control, but the rest is pretty damn good. But I am probably going to try trt sometime next year, just waiting until I want to have kids.[/quote
are you married? or have girlfriend? have you checked your sperms? I highly doubt with such low T you will be able to become father. Please don’t take my comments as offence I am just talking from medical point of view.

[/quote are you married? or have girlfriend? have you checked your sperms? I highly doubt with such low T you will be able to become father. Please don’t take my comments as offence I am just talking from medical point of view.[/quote]
I did have a sperm test (that was an interesting experience) and volume was low, but things were otherwise pretty good. Obviously, I am trying to think positive. And my understanding is that gonadotropin treatments (which I will probably start this summer) should increase fertility as well as increase, which give me a little more confidence. Also, I am engaged, and will marry early this summer. Hopefully this time next year I can report on whether or not this worked!

This makes me so enraged I want to punch a hole in my monitor. (Not directed at you. Glad you’re doing well!)