New UK member - desperately looking for answers and advice

Member Stories
#1

  1. Where are you from (UK)?

  2. How did you find this forum (Google search )

What is your current age, height, weight? 33, 80 Kg, 6’2

  1. Do you excercise regularly? If so, what type of excercise? Used to swim and Bike regularly but not so much since this event.

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

  3. Why did you take Finasteride (hair loss, BPH, other)? hairloss and Prostate cancer prevention

  4. For how long did you take Finasteride (weeks/months/years)? 1 month then 3 months

  5. How old were you, and WHEN (date) did you start Finasteride? 1/9/2013

  6. How old were you when you quit, and WHEN (date) did you quit? 1/12/2013

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

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

  9. What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)? 0.5 mg

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

  11. 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
[ ] Loss of Morning Erections
[x] Loss of Spontaneous Erections
[ ] Loss of Nocturnal Erections
[X] 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
[ ] Penile Tissue Changes (narrowing, shrinkage, wrinkled)
[ ] Penis curvature / rotation on axis
[X] Testicular Pain
[X] Testicular Shrinkage / Loss of Fullness
[ ] Genital numbness / sensitivity decrease
[ ] Weight Gain
[ ] Gynecomastia (male breasts)
[ ] Muscle Wastage
[X] Muscle Weakness
[X] 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

[X] Other (please explain) Tinnitus, muscle twitching, appetite loss!!!

  1. What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug? none yet

  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.

So I have been dreading doing this but have just about come to the realization that i now suffer from post finasteride syndrome. Going on what others have written I guess I am still in earlyish day at about 3 months out.

After quitting I experienced the recovery and then crash all within a week off the drug. Over the next few weeks i saw the odd few days of improvement but largely very bad symptoms, in particular ED. It was almost impossible to get and keep an erection. I was very fatigued, my muscles were weak - emphasized greatly during a skiing holiday of three days. Sleep was bad and anxiety was heavy. I went to the Doc at the start of January and produced bloods which were in range. It was not the full panel recommended but the ones of interest are:
Testosterone: 20 nmol/l (9.9-27.8)
Prolactin:282 miu/L (86-324)
TSH: 1.52 (0.3-5.5)
After that(10/12014), I began to improve slowly, with the odd set back. By the end of january and my next skiing holiday I was back to myself and remained that way for about 12 days. I thought I was out of the woods and was just slow to recover. Appetite, lobido, erection, anxiety, sleep were all spot on. However, upon returning from the ski slopes I experienced ANOTHER CRASH, WTF!!!?? has this happened to anyone else? an unaided recovery of almost two weeks after 2 months before crashing again?

Since then I have developed a host of new symptoms. Most worringly mental ones. Although they are not constant and I will get long periods during the day when they are not present. I have had confusion, short term memory issues, bouts of depression, pretty much all of the above. A return of anxiety and broken sleep have returned to a varying degree.

Do fellow member symptoms very during the day or are they a constant?

I must include that my ED is not as bad as it was originally and I do get some lobido although this varies greatly. If I look at porn I ll get turned on and with a little stimulation can get a 80-90% erection.

All in all my symptoms fluctuate a lot like my body is trying to get back to where it is supposed to be but comes crashing down every time it tries to correct itself. Does anyone else feel like this? Having tried to go swimming I will feel better afterwards but this is shortlived and has resulted in awful nights where i have to get up and vomit violently alongside heavy anxiety.

The way things are going, if they do not improve, I will have to take sick leave from my job and go home to try and recover using diet and excercise which seems to be the only thing that has any effect from reading here. I feel like such an idiot as I saw this forum but based my choice on clinical trials and firm data from large independent studies (i m a scientist) which always said the same thing. I chose to Ignore the “anecdotal reports” and given that i came off after a month of use due to strange orgasms and ball ache and recovered within a week or so I though, “hey no issue for me.” I am very angry with myself about this and the consequence that I have probably ruined myself for the long term.

In relation to the clinical studies being done on PFS are they anywhere near to getting useful data on what may be used to resolve this syndrome or its cause at the very least?

Also the fact that i recovered for almost two weeks before re-crashing, is that a good sign that I may be able to heal naturally?

Additionally, I have made improvements in sexual function since the initial crash. Some of which I lost during the second crash but not back to my initial crash level. Is this also a good sign? I do get weakish morning wood and also nocturnals some of the time now.

Any general advice that may help?

I will try and get comprehensive blood work done in the next week or so as advised and update. I hold out little hope that it will reveal anything out of range though depite feeling as shit as I do. TBH if there was something out of line I would be rather pleased.

I m greatly hoping to hear from those of you who have seen many guys on this forum in my position.
Thanks!

#2

I have had two severe crashes last October (9 and 21 days from stopping), and noticed that the crashlike symptoms usually happen after aerobic sports, sex or eating fast carbohydrates. I am currently 75% recovered (still have insomnia and dark eyebags) and have found the following instructions by “gefinauser” beneficial:

#3

Thanks for that.

So does anyone, in particular the guys who may be participating in the clinical studies of PFS or those in contact with the foundation, know what the current understanding of the syndrome currently is? Do they know what the route cause may be or at least is there any hope of them finding out?

thanks

#4

That is the point of the studies currently underway, to hopefully shed light on these areas.

#5

Wow. I feel horrendous today. I have not been able to eat for 48 hours. Threw up my dinner last night. Impossible to sleep. Right now I d love to be put into an induced coma for a month and awake to find this nightmare is over. I had almost no sides on the medication. Just a hint of libido loss. This is insane. A month ago I was fully recovered after my crash. But what I am experiencing now is the worst I have ever felt.

#6

4 months off and I though I d just update my situation as I have recently got bloods back and have started a few “treatments.”
My side effect profile looks like this now:
Sexual
[x] Loss of Libido / Sex Drive
[x] Erectile Dysfunction
[ ] Complete Impotence
[x] Loss of Morning Erections
[x] Loss of Spontaneous Erections
[ ] Loss of Nocturnal Erections
[X] Watery Ejaculate
[x] 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
[X] Testicular Pain
[X] Testicular Shrinkage / Loss of Fullness
[ ] Genital numbness / sensitivity decrease
[ ] Weight Gain
[ ] Gynecomastia (male breasts)
[X] Muscle Wastage
[X] Muscle Weakness
[X] Joint Pain
[X] Dry / Dark Circles under eyes - sunken eyes and wrinkles.

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

[X] Other (please explain) Tinnitus, muscle twitching, insomnia

SO i have basically gained quite a few side effects. While losing some of the more severe depressive sympotms. Although congnitive sides presist.

All in all a pretty dire situation considering I was very healthy just 4 months ago. I have managed to get the crippling bouts of depression under control, this may be the mirtizapine, but i suspect not as I have only been on that for a week or so. I do get periods when my head will clear, particularly after excercise - so I will maintain a daily excercise regime. My cognitive sides are not quite as severe as they were after my second crash, two months ago, but i still struggle at work and do fear for the future of my career. My superiors have noticed a decline and did suggest taking time off, although I have not done so.

Getting good sleep is almost impossible. Constant awakening throughout the night.

My face has aged about 10 years in the last two months. Wrinkles have developed around my eyes which have sunken into my head and I now have dark circles under them too. I have rapidly lost fat (perhaps why my face looks so depleted) and muscle and my atheltic ability has been sersiously compromised. I have been taking remeron for sleep/depression which has restored my appetite and this seems to have helped with the weight loss. Anothter physical change: Veins have emerged on my penis, which i assume is something to do with blood flow further upstream, possibly the prostate which does seem more uncomfortable so perhaps swollen and trapping blood?

Athletically, I have rapidly declined from a high level competitor to a struggling beginner in the sports I play. Over-exertion leaves me nauseated and weak. I had to take a month completely away from physical activity after the february crash but now I am beginning to introduce some light exercise. This has helped!

My sexual function has improved some (i think), although this fluctuates a lot and is backed up by almost no lobido. The whole syndrome seems to be tied together, in my case at least. When my cognitive sides clear for a bit the function improves and the opposite is of course true. I m still hugely compromised in this area compared to my pre-crash state but I think I can percieve some slight improvement.

In regard to a sex/love life - forget about it. I feel like I m completely done for in that department at the ripe old age of 33. I look like shit, feel intellectually dull and am pretty dysfunctional even by myself and have no drive to pursue a woman. Right now, if you offered me my old self back with the exception of sexual function I d bite your hand clean off. I never thought i would bargain off my manhood or my potential future with a woman but that’s where i am at.

I got off the phone this evening with my endo and he at least took the time to do a bit of research on the condition. He was not prepared to offer anything other than a prescritpion for VitD. He says that judging by his reading a “wait and see” approach is the only thing to do. At this point he is not prepared to try any drug therapy in relation to T levels.

He says my blood work is pretty much fine and judging by myself I can’t say that he is wrong (comments welcome).
Value (range)
VitD-hydroxy = 60 (>63)
cortisol = 545 (171-536)
DHEA = 9.6 (0.7 - 11.5)
FSH = 5.4 (1.5 - 12.4)
LH = 6.5 (1.7 -8.6)
prolactin = 253 (86 - 324)
testosterone = 17.7 (9.9 - 27.8) converts to 510 ng/dl
SHBG = 24 (16-55)
17beta estradiol= 34 (44 - 146)
FT = 21.8 (12 - 22)
free testosterone (calculated) = 11.7 ng/dl (good from what i gather)
liver function tests all good.
TSH = 1.52 (0.3 - 5.5)

So cortisol is a little high (am reading) while estradiol and VitD hydroxy are a bit low.

I noticed my testosterone level has dropped a bit since i had it tested after my first crash (december 2013). It was 20 in january but is now 17.7. Both taken at the same time at 9.30 Am. Can’t imagine that is the reason for such sides but may contribute some.

As for treatments:
I have been supplementing with omega 3, 5htp, L arginine, A multivitamin.

Diet has not been strict but has been cleaned up a lot with much more fruit. I ve lost so much weight I need some highly calorific food hence I have not gone for any of the suggested diets yet. This should change if I can stabilize.

Daily excercise with the hope of building myself back up physically while not inducing further crashes.

Absolutely no alcohol!!! I had one HALF pint, thats right gents, 250 ml of a 3.6% ale which sent me straight to a full body and mind torture chamber for two days about 3 weeks ago.

Psychiatrist has prescribed me with mirtazapine: i think this has helped more for its off label uses (appetite/sleep) than depression, but i may be wrong. 15 mg/day.

Anyway thats that. Just trying to come to terms with it as this whole business has really stripped me of the existance i loved to live. I see my parents next week and I look like i am dying slowly since the february crash. Not sure what i m going to say to them. Any positive comments or advice on bloods or treatments is of course welcome.

Cheers.

#7

Hi,

My story is quite similar to yours, although I took the poison for years. I crashed twice last October, and have most of your symptoms excluding the mental ones. Currently I am fortunately doing better.

If I were you I would do the following:

  • Try to get vitamin D from the midday sun. I went to Spain twice after the crashes and improved both times.

  • Try to lower your cortisol, since cortisol decreases testosterone. Green tea contains L-theanine which is supposed to do that (I drink 4 cups a day). Taking long slow walks and holding your breath after nightly awakenings also have a calming effect.

  • And as I said earlier avoid fast carbohydrates, competitive sports and having sex too often.

Good luck with the recovery!

#8

I feel for you, all your symptoms I had and had no way of getting better. As you are just at the of start of your symptoms I would check out light at the ends progesterone thread. I have been like this for 5 years with no improvement, but since I have been on this protocol I can see definite improvements and can understand the theory of why it works. Its your best bet there 's nothing I have not tried to do and I mean nothing.

#9

Hi Mate

I think you reached out to me in relation to the mental side effects. As you mentioned above, time and eating healthy are the two biggest things that lead to recovery for me.

If you are getting periods of recovery then that is a good sign - most of the guys who have really long term sides have flatlining symptoms for a long period. I think this is where progesterone is necessary to set your body on the road to recovery.

I think what I was going to say has already been said. I haven’t seen that post from finauser above before but that all seems spot on. One caveat though - I found that a number of times during my recovery that certain food types went from being beneficial to being damaging on my body. For example, dairy was fine for the first 12 months, but then started having an extremely negative effect on me.

I really empathise with your statement regarding being brain dead - previously any sort of stress would send my depression and brain fog sky high. While at almost two years off this has improved 70-80% (and some days I feel like my brilliant self again) the best tools I have against this at the moment are a protein rich breakfast (usually a fried or boiled egg), lunch (chicken fillet with boiled vegetables) and dinner (usually red meat and more vegetables), lots of weightlifting and regular but llimited moderate cardio (followed by large amounts of protein after), sun, giving up sugar and dairy completely, lots of water and spending as much time as you can around people.

That being said, gains are slow and work is going to be extremely hard. If there is anything you can do to take some stress off and just plug away for a while (I took on a large job with a higher amount of simpler repetitive tasks for a while) the better you will be.

First 6 months will be hell, second 6 months will be cycling hell and ok times, third 6 months will be more ok times with occasional bad times and fourth 6 months will be almost all better times with periods where you will feel the bad times coming on. 12 months is clearly the turning point, so please focus on that.

Good luck!

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