Regrettably joining the club

Member Stories
#1

  1. Where are you from (country)? US

  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? 42, 6’1", 180

  4. Do you excercise regularly? If so, what type of excercise? No

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

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

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

  8. How old were you, and WHEN (date) did you start Finasteride? 41, August 2010

  9. How old were you when you quit, and WHEN (date) did you quit? 41, September 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? 2 - 3 weeks

  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
[x] Reduced Ejaculate
[ ] Inability to Ejaculate / Orgasm
[ ] Reduced Sperm Count / Motility

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

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

Misc
[ ] Prostate pain
[ ] 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

  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)? N/A

  3. Anything not listed in the above questions you’d like to share about your experience with Finasteride? Taking it for cosmetic purposes was the biggest mistake of my life.

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

A lot has happened to me in the 8 months since I started taking Propecia and the 7 months after I stopped. 2 - 3 weeks into taking it the side effects started to creep up on me. By my fourth week, I experienced a host of side effects: complete impotence; loss of libido; pain in my testicles (on two occasions); severe brain fog (one evening); panic attacks (over 2 days); and insomnia (same 2 days). When I started to experience the side effects, I found this site. As you can imagine, I was scared to death about what kind of poison I had put into my body. I quit cold turkey.

Less than 2 weeks after quitting, I started to see steady improvement. Within a month or so, although it is difficult to put a % on it, I would say that I was at 75%+. In fact, 2 months after quitting, my wife became pregnant, although she had a miscarriage (cause unknown). 2 months later, she became pregnant again, and this time with no issues (we have done the regular genetic tests, checkups, etc.). That was 3 - 4 months ago. Unfortunately, that is where the good news in terms of my side effects ends.

The side effects have again begun to creep up on me. I would say that I have reversed course and am now at 50% or less. I can get an erection, but it is difficult and it does not last. I have a fraction of the ejaculate that I had prior to using Propecia and significantly less than just 1 - 2 months ago. My libido is all but gone again. The other mental and physical side effects have never come back with the exception of some forgetfullness, muscle wastage and weight gain, however, the stress of the situation as well as the fact that I stopped exercising all together when the side effects became bad several months ago I imagine have played a significant part.

Honestly, I don’t know what to think. Half of the stories on this site give me hope, the other half resign me to the fact that my situation will likely not improve significantly from where I am today. Should I be encouraged that I quickly improved after quitting or should I be discouraged that I have seemed to reverse course? Did I take 3 steps forward and 1 step back or did I crash? Unfortunately, given how varied others’ experiences are, I do not think that anyone can answer these questions for me.

What am I thinking now? I guess that my only choice is to get back to the gym (cardio and weightlifting), improve my diet, do as much research as possible on the issue, and try to keep an optimistic attitude. I will likely start to make appointments for blood tests now so that I am prepared if my recovery does not take hold again in the next couple of months.

Lastly, I want to say how truly sorry that I am that any of us are part of this forum. With that said, I cannot even imagine how much more difficult this horrible situation would be if the contacts, information, stories, etc. on this site were not available. It would be even more difficult if I thought I were the only one suffering from this. I wish each of us the best in terms of recovering from this and myself with trying to cope with the fact that I put myself in this situation due to vanity. I do not know if I am more angry at Merck for misleading us on the side effects or myself for my misguided priorities.

#2

welcome York,

I have also thought the same many times. I’m just as equally mad at myself, as much I hate that slezzball drug company.

Get blood work done as soon as possible. There is a link to a list on the main page for horomones to include. ALso, join the US class action if you haven’t already done so.

#3

Will do. Thanks for the advice.

#4

I thought that I would update my post. Unfortunately, shortly after my last post, I crashed. I guess that is one of those things that you are not sure of the meaning until you experience it. I hit a very scary low. I experienced a few intense days of brain fog, short-term memory loss, nights sweats, heat flashes, varying body temperature, severe anxiety, severe depression, difficulty sleeping, and complete impotence. Honestly, I was hanging by a thread those few days. I NEVER imagined a scenario where I could feel that desperate.

On April 9th, I had blood tests taken shortly after my first appointment with Dr. Jacobs. The results were as follows with ranges in []:

DHT - 15 [25-75]
T Total - 294 [250-1100]
T Free - 46.2 [46-224]
T Bio Avail - 95 [110-575]
SHBG - 25 [9-45]
Albumin Serum - 4.5 [3.6-5.1]
IGF-1 - 174 [50-303]
TSH - 0.96 [0.4-4.5]
T4 - 1.4 [0.8-1.8]
T3 - 3.7 [2.3-4.2]
FSH - 3.2 [1.6-8.0]
LH - 3.0 [1.5-9.3]
Prolactin - 4.0 [2.0-18.0]
Estradiol - < 32
Cortisol, Total - 17.3 [AM 4-22, PM 3-17]
DHEA Sulfate - 214 [45-345]
Vit D, Total, 25-OH - 28 [30-100]
3A - 187 [260-1500]

Since my crash, I have seen significant improvement in the mental sides (anxiety, brain fog, depression, memory), body temperature stabilization (although recently tested at 97.9 degrees), and sleeping (some nights better than others). I should say that I have to work a lot on managing the anxiety as I have noticed periods of quick heartbeats due to anxiety.

What has not improved is my severe ED, low libido, loss of sensitivity in my penis, lack of high from orgasm, rubber-like and thinner penis, and shrunken testicles. In addition, my semen is much smaller in amount and much less creamy / white.

What has gotten worse is the muscle wastage. This is probably the most difficult side for me as I am losing weight rapidly with most of that being muscle. I was 6’1" and approx. 185 with decent muscle before this started and just weighed myself at 176. My body is much more sore and for much longer after sporting activities that used to not bother me last year. It is EXTREMELY disheartening to see your physical well-being deteriorate so quickly. I am fearfull of how far this will go. I have also noticed a diminished immune system. Things simply take longer to heal, such as a cold sore. My digestive system, which used to work great, is not the same either. I notice that I am not as nearly regular as I was before all of this. I also notice that I do not have the same tolerance for alcohol that I did prior to fin. I am fine if I limit it to 2 - 3 beers, however, anything more than that makes me very tired that night and next morning. In addition, I believe that I have a constant, low tone ringing in my ears (i.e. tinnitus).

For the last month, for what it is worth, I have tried to do everything that I can to help my body somewhat heal naturally: clean diet; no caffeine; little alcohol; supplements (vitamin C, D3/calcium, fish oil, multi); light cardio 3x per week; light weights 2x per week; and a good amount of sleep. I have to admit that the exercise has been critical for me in managing the stress from this situation. Fortunately, thus far anyways, energy has not been a big issue for me.

My next step is to get more blood tests done in the next week or so prior to my visit with Dr. Shippen in mid-June. It is important for me to get another snapshot of where my levels are prior to trying any significant treatments. I want to know as much as I can what my “new” baseline is before I start considering therapies that could potentially harm me further. I am fine with trying treatments that do not work, however, I am fearfull of trying treatments that actually worsen my condition.

I am planning to work with both Jacobs and Shippen prior to any treatment. With that said, and keep in mind that I was a very optimistic person prior to this experience, I am not even thinking about recovery. I am simply thinking about improving my situation as much as I reasonably can and to the point that I can lead a good life until better treatments are available. I think that it is a mistake to put your life on hold waiting for a recovery. Given the enormous complexity and severity of our issues, combined with the fact that we are a relatively small population, it may be many years before anyone has better insights into our condition, let alone more effective treatments. Believe me, noboby hopes that I am more wrong than I do.

With that said, I do think that it is imperative that we keep digging at the problem. Nobody else is going to do it for us. I think that it is important that we collaborate more, push others to collaborate (doctors, research institutions, etc.) and incentivize people to focus on this problem through media and litigation. The fact is that we have to incentivize other people to care about our situation. There has been good progress recently on this front, however, I think that all of us would say that we wished it would move faster.

I am very concerned about my future. I am recently married with a baby on the way. This is supposed to be a very happy time in a new parent’s life. My situation has stolen most of that from me. I am trying to stay positive and involved, but 50% of my thoughts are related to my health issues. There is only so much that I can share with my wife. I refuse to “drag” her down with me. There is no need for her to feel the same despair that I do. Before all of this, a baby only made me excited. Now, I feel anxiety about how I will deal with the constant attention, crying, lack of sleep, etc. Given our situation, I realize that I should feel lucky about being married and expecting a baby. However, it is difficult for me to feel lucky about anything these days. Between my current side effects and worrying about potential future side effects from all of this, I don’t know how I will ever be able manage my life as well let alone as happily as I did before this. I HATE what this drug did to me.

Lastly, I have to say this again, I cannot believe the amount of damage this drug can do to a man’s body. Between the mental sides, physical sides, and sexual sides, this is literally the most damaging thing that I could have dreamt of to put into my body. Adding “persisent ED” to the label does not even come close to describing what this drug has done to those people who, as a result, now have secondary hypogonadism. I feel like I dropped a bomb into my body and am now trying to piece it back together without even knowing what it exactly looked like prior to the bomb exploding. How the FDA approved this drug for anything but advanced prostate cancer is mind-boggling and simply takes away any faith that I naively had in drug regulation.

Thanks for letting me vent - york

#5

Here are my updated blood tests from May 31st (9:30 am):

DHT - 20 [25-75]
T Total - 275 [250-1100]
SHBG - 27 [9-45]
TSH - 1.80 [0.4-4.5]
T4 - 1.0 [0.8-1.8]
T3 - 3.1 [2.3-4.2]
FSH - 3.0 [1.6-8.0]
LH - 3.9 [1.5-9.3]
Prolactin - 5.7 [2.0-18.0]
Estradiol - < 32
Cortisol, Total - 10.8 [AM 4-22, PM 3-17]
DHEA Sulfate - 160 [45-345]
Vit D, Total, 25-OH - 30 [30-100]

Unfortunately, not only did my T levels not rise, they fell a bit further. I have to say that I was very surprised and disheartened by this. Given my improvements in side effects, I would have bet that my T levels rose significantly.

As of today, my mental sides are essentially gone (anxiety, brain fog, depression, difficulty concentrating, memory loss), with only anxiety occasionally reappearing on a minor scale. My sleep is almost back to normal, only waking up 1 or 2 times throughout the night.

My physical sides have also improved significantly. I no longer get sore from sport (softball, tennis, etc.) or working out (2x per week medium weights and 2x per week cardio). My muscle wastage and weight, although not back to normal, have stabilized recently. I just weighed myself at 178 lbs with 19% body fat. However, I do not build muscle or get that pumped feeling after lifting like I used to. I feel like I am working out to simply maintain.

My sexual sides have also improved significantly. ED is less common and severe, the sensitivity in my penis has increased, penis is no longer rubber-like and thinner, and testicles are close to normal. I have also consistently been getting morning wood the last few weeks. What has not improved much is my low libido, lack of high from orgasm, semen quantity (my semen is much smaller in amount, maybe 50%), and semen just dribbles out as opposed to shoot out.

The one bright spot from my recent blood tests are the improvement in my cortisol levels. I attribute the majority of my improvements to reducing stress and just time. In addition to working out regularly, I have been getting massages every 2 weeks and doing a little meditation. I am surprised by how few people give stress the appropriate credit for contributing to many of their symptoms as well as their improvements. For example, I sleep every night with a humidifier in the bedroom. This has never bothered me in the past. For the few weeks immediately after my crash when I was the most stressed, I was congested for the first 1 or 2 hours of the morning. It went away by lunch but that had never happened to me before. I can see how stress can significantly reduce our immune systems.

I have an appointment with Dr. Shippen later this week so it will be interesting to see what he says. Up to now, I have simply been doing the common sense things that I mentioned in my last post and what most people in this forum tend to now live by. I am obviously keen to increase my T levels (I am at about 50% where I should be at my age), however, I am hesitant to jeopardize the progress that I have made thus far.

Has anyone who has taken clomid feel that, whether it temporarily rose their T levels or not, that their T levels fell below their starting levels after quitting it? In other words, do you feel that there is a risk that clomid can ultimately lower our new baseline T levels even further?

#6

It sounds like your doing exactly the right thing, talk to Shippen about clomid. Good luck mate. I’m going to try and focus more on relieving stress, because I believe it brought my sleep problems back which in turn make my side effects worse, I noticed the first time I slipped into real meditation I felt a lot better for some time afterwards.

#7

I believe all research shows that low dose clomid over time raises serum T levels. I do not believe there is any evidence that it drop lower than baseline after quitting. Again, from what I can remember.

#8

I know exactly how you feel. I’m a year older than you with a 4 year old boy and I would like another child but I don’t know if I can either have one now or cope with another. It’s seems so unfair burdening our families and friend with this. In fact my wife doesn’t know why I’m having these problems so I feel bad about lying. All of this shit is on my mind constantly and all the other stuff I used to love has been put to one side. I think about it all day, when I go to bed, when I dream and when I wake up. It’s truly a living nightmare.

#9

You should be honest with your wife and show her the BBC report, MSN story or anything from here. I am only 20 and the minute this happened I told my girlfriend. I can totally relate to this taking over your life. All day I go through the motions of wondering when I might next feel good, or when I might end my life if I don’t improve.

#10

interesting you note that your cortisol has increased and as a result you are feeling better. Well in fact this makes perfect sence. You are pretty much guaranteed to have anxiety if you have low cortisol output. Your body simply can not deal with even a small amount of stress. Blood test cortisol is not a very good measure. Get a 4 times a day silivary. You can normaly order this yourself.

Measure your temps before you get up in the morning, while laying in bed. Again +3 hours +3hrs and once more at +3hrs. Please report back here with your findings. I am guess your temp will not be 37c. In fact I would put a large wager on it.

Please report back.

#11

I thought that I would give an update of my current health given the fact that it has been more than 2 years since I have posted to this site.

As a bit of background, Dr. Shippen prescribed 15 mg of clomiphene citrate 3x per week to me in mid-2011. After a few months, tests showed that it only minimally increased my T (from 275 to 312). Per Dr. Shippen’s guidance, I increased the dosage to 35 mg 3x per week. This is the maximum that he will prescribe as he believes that any more than that likely clouds the receptors in the body. After a few months, this materially increased my T (to 476) although not to a “normal” level for someone my age. However, I was relatively happy with the positive effects on my energy level, for example. Unfortunately, I developed eye floaters in mid-2012 and immediately stopped taking it. Needless to say, I was upset that I now had a new health issue as an indirect result of Propecia. In late 2012, a few months after stopping clomiphene citrate, my T went down to where it was before I started taking it.

For the last 1 ½ years, I have not been taking anything. In addition to the newly acquired eye floaters, which have only marginally improved, I have the classic symptoms of secondary hypogonadism (loss of muscle, increase in fat, lower energy, low libido, lower ejaculate volume, etc.) and some more unique to Propecia use (genital shrinkage, penis curvature, etc.). In an effort to again increase my T back to more “normal” levels, I again met with Dr. Shippen who prescribed low dose HCG starting at 500 IU 3x per week. Although certainly not a cure all, I am keen to get my T levels up again but I am afraid of new permanent side effects of ANY magnitude (although I believe the eye floaters will improve over time, I doubt that they will ever totally go away).

I have done a fair amount of research on my own on HCG which is FDA approved for secondary hypogonadism, however, I wanted to ask if anyone on this site has any comments/concerns of taking low dose HCG long-term given their personal experience or factual research. Your comments would be much appreciated.

York

#12

I do. When I took T with HCG I never felt the T. When I took T without HCG I felt the T for the first week and it felt good. HCG had no real benefits for me. It is unlikely to help you. If you want to increase testosterone inject testosterone. Keep it simple. It probably wont work because the problem is elsewhere. Have you tested all your estogens and progesterne / hydroxy progesterone? We need to find out what is stopping testosterone from working.

I would much rather take T over HCG. You can trial it for a few weeks.

#13

Any improvements with the eye floaters? In fact how are you doing overall? How was life with your newborn? What has improved and what has not? I am very similar to you. Thank you