M_C's story - 11 years of PFS

Member Stories
#1

  1. Where are you from (country)? I’m from Norway, but live in the 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 search.

  3. What is your current age, height, weight? 27 years old, 5"11’, 160 lbs.

  4. Do you excercise regularly? If so, what type of excercise? Half hour biking to work, 3 miles of jogging every day. Weight lifting every other day.

  5. What type of diet do you eat (vegetarian, meat eater, raw, fast-food/organic healthy)? Omnivorous, but I’m approaching the “caveman diet” - raw vegetables and fruit, and an assortment of meats. Have cut out coffee completely, and have had less than a dozen alcoholic drinks in three months.

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

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

  8. How old were you, and WHEN (date) did you start Finasteride? 27

  9. How old were you when you quit, and WHEN (date) did you quit? 27

  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.)? 1mg/day

  13. How long into your use of Finasteride did you notice the onset of side effects? A few days.

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

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

Misc
[ ] Prostate pain
[X] 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)
Dry skin, decreased perspiration, less intense body odour, blood in urine

  1. What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug? Mostly dietary changes, rest, and exercise.

  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)? No blood tests yet.

  3. Anything not listed in the above questions you’d like to share about your experience with Finasteride? Finasteride is evidence that true evil exists in the world.

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

Hi everyone,

First, thank you to the organizers of this forum and the members who are working hard to solve this issue. The information provided here has helped me retain some semblance of optimism and hope through this (continuing) ordeal.

Twelve weeks after quitting Propecia, I believe it’s time to admit to myself that I have become yet another sad data point in this community. By writing this, I hope I can contribute information that can confirm and/or corroborate theories about what causes PFS, and how one can go about recovering from it.

I took ten fateful pills of 1mg Propecia for ten days, starting mid-November. On day seven I noticed that my face felt swollen, and after three days I decided to quit. That same night I felt a sharp pain in the lower stomach area, to the point where I had to lay down. The next morning I woke up without feeling in my crotch.

In the two months that followed, I experienced many of the physical and psychological side effects that many members of this forum have vividly described: emotional ‘neutrality’, “brain fog”, apathy (lack of ambition or ‘drive’), extreme fatigue (combined with difficulty falling asleep, paired with disturbing, paranoid dreams), panic attacks, stuttering, concentration problems (just following ordinary conversations required a lot energy), inability to do any kind of complex reasoning or deep thinking, absence of empathy, absence of libido, erectile dysfunction, genital numbness, aching testicles, shrinking penis (riding a bicycle felt bizarre). To summarize, I felt like I had been chemically castrated and undergone a lobotomy in one go.

The bizarre fact of this condition, is that despite the horrifying symptoms, I couldn’t bring myself to care all that much (which can be attributed to my stunted emotional capacity). I spent a lot of time resting, and doing one of the few things that gave me some feeling of control - eating well and exercising. Aerobic exercise would give me a break from my cognitive symptoms for a few hours, sometimes enough to do basic work or correspond with work colleagues and employers.

After about a seven weeks, I noticed an improvement with most of my symptoms. What continues to bother me is the sudden onset of fatigue (physical and cognitive), that I require a lot of sleep, and the sense that I’m emotionally numb. It’s like the world’s pleasures are enveloped in saran wrap - my conscious mind can appreciate events like eating a delicious meal, kissing an attractive girl, being at a good concert, but my body doesn’t seem to understand it, and consequently I don’t get the kind of “primal satisfaction” that usually would occur. Spontaneous erections are a rarity, but I’ve regained feeling at the very tip of my penis. This makes sex possible, but not particularly memorable. To my despair, I’ve experienced a slow waning of the little sensation I have over the last week. I’ve also discovered blood in my urine.

I will post blood work here over the next couple of weeks after I get to a urologist.

To conclude, I’m looking forward to 1) the invention of anti-finasteride or 2) a US lawsuit. (Is it happening? jazlowiecki.com/blog/possible-propecia-class-action-lawsuit/ )

May Merck’s misanthropic project end soon.

1 Like
#2

I forgot to mention the dietary supplements I’m taking daily which are: cod liver oil, 100mg of zinc, and 1000mg of vitamin C.

#3

Check the legal action section of this website. The community here has a major action in progress however it hasn’t filed yet. Propeciahelp.com is gathering names and information for statistics which will be integral to the case. There is a special section listed at the top of the forum. GET ONBOARD NOW!!!

#4

Update:

Compared to many on this forum, I’m probably doing well - I’m able to think straight, just started a new job, maintaining relationships with friends and family, and I’m in better physical shape than I’ve been in a decade. Nobody around me would guess that I’m ill (although a sudden dedication to healthy eating and exercise have some people wondering :wink:.

BUT - it’s incredibly frustrating to be stuck in a body that no longer feels like my own. It’s been almost 7 months since I quit.

What is bothering me the most (apart from the sexual sides), is a persistent ‘throat tightening’ feeling that makes it difficult to talk. I’m suspecting it is related to sexual function in a way, because last month the ‘tightening’ gradually subsided, but was followed by a reduction in libido and penile sensation. Now the tightening feeling is back, stronger than ever, but the sexual side effects are not improving. Have any of you had anything similar? Is this a thyroid issue?

I’ve had some blood tests taken, and they were declared normal (by people on this forum and dr. Goldstein).
http://www.propeciahelp.com/forum/viewtopic.php?f=4&t=4933

What’s the next step?

#5

I have had the same thing but I havent been able to ascertain the cause. Thyroid is everyone’s first guess. I believe something else is going on though.

#6

I thought it might be useful to post on my progress so far, both as a sort of diary entry for myself, and for those of you who might be interested in a point of comparison.

It’s becoming increasingly clear to me that the 10 mg I took of this drug has altered the course of my life, and its effects, physical and psychological, will stay with me for years. Over the last months, I’ve collected quite a few sentences that start with “if it hadn’t been for fin I would’ve…” . For instance, I probably would not have lived where I live or work at the company I work for now if I it hadn’t been for PFS. (I also most likely would’ve had a girlfriend.) These a major life decisions that I wish I could’ve taken based on what my larger goals are (were) - not what my health dictated.

What’s on my mind these days is that I feel like time has stopped. Past and future has ceased to matter. I’m living in a joyless present without a sense of direction, ambition, or purpose. I have the life outlook of somebody three times my age. I’m simply waiting for everything to pass.

A lonely, zen-like attitude pervades everything I do. At work I’ve started preferring repetitive, solitary tasks over creative, collaborative tasks (which used to be my strength). When it comes to physical exercise, I’ve taken up running, an activity I used to hate (I used to be a team sports type).

None of these things are necessarily bad by themselves - I’m less stressed, rarely nervous, and worry less about people think about me and my work. I feel like I have nothing to prove. (Put together, these things might be interpreted as confidence.) But put together, I’m seeing a terrifying change in personality that I can’t control. I’ve turned into a different person.

The trajectory of my PFS symptoms have been pretty stable - I had about two months of ‘zombie mode’ (lobotomy and castration put together), which have resolved into a state with slightly less intense symptoms that seem to improve slowly over time. I say “seem to”, because sometimes I wonder if progress is happening because I’m coping better with my situation, or if things are actually improving.

‘Tangible’ symptoms I feel have improved, very slowly, over the last few months:
I’m thinking clearer.
My need for sleep is normal (I rarely get tired, actually. Yay for healthy habits).
Pornography arouses me (to a point)
I can hold an erection longer.
I feel my penis in my pants when I’m walking around.

The stubbornly persistent symptoms:
Penile sensitivity is very low. Perhaps 50% of the sensitivity on my thigh.
Libido is still very low.
A ‘tightening’ feeling in my throat makes it tiring to talk and swallow.
Personality changes and emotional blunting described above.
Strange digestion issues. (I didn’t feel hunger for a while, and have the feeling that food passed straight through me).

I’ve done some more hormone testing recently and will post those when the results arrive.

What I’m doing to improve:
I take cod liver oil and zinc daily, and exercise 4-7 times a week (running, cycling, weightlifting, and yoga). Of the few things I’ve tried, large amounts of raw fruit and vegetables seem to have the best effect on my mood and well-being (unsurprisingly). I had one of my best periods of improvement after spending a weekend hanging out by a pool reading, swimming, and just relaxing.

I should thank the board administrators and the members who are tirelessly researching the condition and working with the scientific community to get some answers. Hats off to you.

2 Likes
#7

Update - I attempted to lower SHBG and raise bioavailable testosterone with Danazol, but I got terribly brainfogged pretty much instantly and stopped taking it after two days.

I’ve added Vitamin D3 to my daily supplements.

I really wish I had the answer to the following:
Why do I have “throat tightness”? Do I have an overactive thyroid?
Could an autoimmune response account for my symptoms? I haven’t had a cold, flu, a runny nose, or a cough since I got off fin (11 months).
My blood tests show I have a lot of testosterone precursors and metabolites (like DHT), but very low testosterone. Why does my body “waste” T?

Blood tests - viewtopic.php?f=4&t=4933

#8

Check your iodine levels, it plays a role in the thyroid.
I had this throat tightness for months, it was sometimes even painful, supplementing with vit D and iodine did help.

#9

I get a neck tightness almost like im wearing a tie that’s on too tight. Somethings left neck throbbing too.

How do you supplement with iodine? Kelp? I heard there’s something called ioderal (sp) which can help.

#10

I have that when my thyroid hormones and cortisol are both high.

#11

I have very high cortisol - 238 (35-168).

TSH is 1.670 (0.450-4.500). If I’ve understood this correctly, it means I have relatively high thyroid hormone levels. TSH signals the thyroid to make more thyroid hormones, and since it is low it must mean I already have plenty.

More detailed testing must be done here.

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#12

1 year fin anniversary today! What a pile of horseshit.

I got some thyroid tests done - the results look all right. I was suspecting I was hyperthyroid (I have throat tightness and sometimes it feels like my eyes are about to pop out of their sockets).

TSH - 2.0 (0.45-4.5)
T4 - 1.35 (0.82-1.77)
T3 - 102 (71-180)

I don’t feel like I’m much closer to finding out what’s wrong with me. Low testosterone can explain some of the symptoms, but not all.

My next step is to investigate potential prostate issues. I’ve had a lot of the ‘muscle spasms’ that other people have mentioned.

Wish me luck!

1 Like
#13

Short update - the “throat tightness” is less intense than before. Very happy about that. It could be due to the zinc supplement I’m taking that contains iodine from kelp, but I’m taking a bunch of other things as well. (Thank you for the recommendation, JG and visionquest).

Erections were getting pretty good around January, but then had a pretty dramatic setback that involved shrinkage. Not great. Sensitivity shows marginal improvement.

I have more episodes of anxiety now, but they don’t last as long as they used to. Around 10-30 minutes. Other psychological issues bother me more, but are less tangible than these fits.

Currently taking:
-DIM Avail
-liquid vitamin B12
-zinc (with kelp/iodine)
-cod liver oil
-a product called ‘Nitric Balance’ from Apex energetics
-a product called ‘Neuro O2’, also from Apex

Considering an experiment with Naltrexone also.

1 Like
#14

how are you progressing if I may ask?
I feel i’ve had very similar experiences as you. I took finasteride for about 18 days and am 28 yrs old.

#15

It’s up and down. Mentally I’ve been improving steadily. I don’t have basic cognitive problems anymore, but I struggle with a lack of drive/motivation/desire/libido and some memory problems. Erection quality has gotten better. I’m noticing some improvement with penile sensitivity, but there’s a long way to go - when I came off fin I felt pretty much nothing. Now I’ve recovered about 10-15% sensitivity (it varies on the different parts of the penis).

Throat tightness has gotten better, but it can still ruin days.

I was diagnosed with asthma last Monday (I think it’s unrelated to fin, but who gets asthma when they’re 28???) and I’m worried that it’ll affect my exercise regimen. I think it’s very important to do light exercise daily.

I took an organic acids test which showed a severe lack of basic amino acids, which indicates that food isn’t being digested properly. I’m taking a mix of custom amino acids from Metabolic Maintenance to rectify the issue. It’ll take a while before any results become apparent.

I’m waiting for a supply of Naltrexone as well. If this “supplement tactic” isn’t successful, I’ll have a go at Danazol or look into some other thyroid/hormone modification.

1 Like
#16

Today is my 2 year finasteride anniversary.

What can I say that hasn’t been repeated dozens of times on this forum already? How did this happen? How did I end up trapped in this sick joke?

Frustrations aside, I’ve definitely improved quite a bit in the last year. I got my mind back (minus libido and motivation) and can for the most part think and reason with relative clarity.

Armour Thyroid (60mg/day) and Naltrexone (3mg/day) has helped. My overall mood has improved, and so has mental clarity, and “presence”. I’m able to have decent sex. The throat tightness doesn’t bother me as much. My last testosterone test shows I have plenty of the stuff. Same with DHT. My doctor was actually worried that my estradiol was too low, if you can believe that.

However, with each improvement, I’m realizing how sick I actually was and how long the road to recovery actually is. So many systems seem to have been affected. We all know that the endocrine system has been damaged somehow, but I think the PFS state also involves problems with the immune system, the gastrointestinal system, lower abdominal soft tissue inflammation, brain inflammation, and possibly brain damage. It’s can seem overwhelming at times.

What makes me hopeful is that I still have many avenues to try - I’ve been very conservative in my approach to pharmaceuticals so far, so many options are still available. I’ve mentioned sulfasalazine in a different post. I might give that a try.

Wish me luck!

2 Likes
#17

It’s been a while since I posted any updates to this thread, so I thought I’d give you a progress report.

Has my situation changed since 2012? Yes, and in familiar PFS fashion, I’ve seen progress in some areas and setbacks in others.

In the last nine months or so, I’ve seen that
-my thinking ability has improved
-penile sensitivity is a little better
-morning erections at least once a week
-I can feel hunger pretty consistently and have a pretty good appetite
-my “throat tightness” is not as debilitating as before

Worsening symptoms include
-libido. Probably due to elevated SHBG because I’m taking thyroid medications.
-lack of motivation, interest in things (you know the feeling)
-poor memory (forgetting common words and names of good friends)
-dizziness, being “spaced out”
-anxiety (more about this below)

In addition, I tried several different forms of probiotics/prebiotics/fiber to improve my gut environment. (It seemed like food was passing straight through me without being digested). However, this lead to constipation (that has not resolved itself completely), and a really bad mixture of anxiety and fatalistic thoughts. I’m not going to belabor what that felt like - suffice to to say it was awful and probably the worst of the symptoms I’ve experienced in my almost three year long PFS “career”. If I wasn’t convinced about a link between the gut and the brain before, I certainly am now.

What might be useful to know is that my mood got a lot better when I started taking b12 (methylcobalamin) and got back on Naltrexone (I had run out, and took a few months off to see if it made any did any difference). The effect was apparent within days.

Right now I’m pursuing the methylation angle pretty hard, after discovering that I have a homozygous MTHFR 1298C mutation, which in turn reduces the effect of the methylation process (involved in neurotransmitter production and detoxification). B12 is a very important component in methylation, and that may have played a part in my mental symptoms improving.

Droit has been a huge help and resource here, and I’d encourage you to test your methylation capacity in some way (either through 23andme or with a methylation panel from Metametrix) so we can discern genetic patterns or methylation problems shared among PFSers. The initial comparisons have shown interesting similarities.

Of course we can’t know for sure if impaired methylation is a cause of PFS, but we do know that if your methylation cycle is not working properly, you will have a hard time trying to recover.

Here’s a few links I’ve found interesting:

Ben Lynch’s talk on MTHFR mutations: http://www.youtube.com/watch?v=QRHif2aVPvw
Robert Sapolsky’s talk on depression: http://www.youtube.com/watch?v=NOAgplgTxfc
“Neurosteroid Biosynthesis Upregulation: A Novel Promising Therapy for Anxiety Disorders and PTSD”
http://www.intechopen.com/books/anxiety-disorders/neurosteroid-biosynthesis-upregulation-a-novel-promising-therapy-for-anxiety-disorders-and-ptsd
Dr. Mark Hyman speaks at Google: http://www.youtube.com/watch?v=zAZVpsd2Nao

The clinical studies that are underway are really encouraging. It makes me feel like I’m apart of something that can actually advance science, instead of a discarded lab rat. And it makes the donations seem worthwhile too. You guys are heroes.

#18

I have a few updates.

Executive summary:
– Recent test results indicate serious gut problems (amoebic parasites, small intestine bacterial overgrowth, h.pylori infection) and low methylation.
– I tried to reduce bacterial load with a custom, liquid diet with whey protein isolate and maltodextrin as the main protein/carbohydrate. This failed completely and made my sexual symptoms way worse.
– I used an antimicrobial herb called Goldenseal. This made my situation worse still. (Perhaps because it’s a very potent CYP3A4 inhibitor).

If you care, here is the longer story:

I’ve done a few tests recently – a stool test, a urine test, and a blood test measuring substances related to methylation activity. From these tests, I’ve received three new “diagnoses” (I think it’s better to think of them as leads - the diagnoses doesn’t provide explanations for all my symptoms): amoebic parasites, small intestine bacterial overgrowth, lack of methylation. After a brief talk with a doctor, it appears that each of these can be the cause of another, but it’s fruitless to speculate what drives what - the fact is that really fundamental processes are broken. What these conditions can explain is why my condition is chronic (methylation and gut issues are notoriously hard to treat). A methylation “block”, as it’s called, prevents adequate detoxification, which increases the demand for antioxidants, which puts further pressure on the detoxification system, reinforcing the block. SIBO and amoebas might also play a role here, possibly interfering with the absorption of nutrients needed for proper methylation, like B12.

Now, how should I treat this? Apparently with a barrage of antimicrobial plant extracts, in addition to B12 and SAM-e supplementation. My doctor also tipped me off about the “low FODMAP” diet, which set off an intense flurry of research about restoring proper gut function. It turns out that the paleo diet is just the beginner’s introduction. These diets are intense. There is the “elemental diet”, the “SCD diet”, the “low FODMAP” diet, the “break the vicious circle” diet and many variations on these. The development of these protocols have been largely pioneered by the IBS (irritable bowel syndrome) community. What these have in common is that they exclude complex carbohydrates from the diet, denying gut bacteria their nutrition.

I was interested in trying Soylent, a meal replacement containing mostly synthetic nutrients, I thought this could be an opportunity to create a custom, homemade Soylent-formula that would also be “elemental”, meaning, without any complex carbohydrates. I replaced the carbohydrate component in a DIY Soylent recipe I found online with maltodextrin, and the protein with whey isolate. Apart from that, my mix contained almond meal, coconut oil, olive oil, magnesium, calcium, salt, and choline bitartrate. It was supposed to contain around 2000 calories, which is close to the recommended range for men.

I was a little nervous when I first mixed the ingredients, not quite knowing if the components would interact in some harmful way. My fears were unfounded, but the first batch was way too salty, so I had to try again. After I added half a banana, the recipe tasted suitably bland. The drink had a strange consistency, with some parts not quite mixed in. It had an off-white color. To my surprise, it was very filling and quite satisfying when I first drank it.

I actually never got really hungry during the five days I was on the stuff, but I did feel a craving for actual, solid food. Apart from hunger satisfaction, the project was a complete failure. On the last day, after I had feeling my crotch less and less, I could not even get an erection. It was a terrifying return to how I felt when I first acquired PFS. To make the situation even more tragic was that this happened exactly three years after the onset. So there i was, hoping to report some big progress after years of work, only to find myself in the same position as when I started, at least in terms of sexual symptoms. (Luckily, the progress made on the cognitive front has for the most part remained). To make matters worse, my digestion had completely stopped. I had to buy laxatives to have bowel movements again. One positive learning coming from this was that reintroducing Naltrexone seemed to help digestion.

After this fiasco, I began taking an antibacterial herb extract called goldenseal, together with another supplement with antimicrobial substance called monolaurin, as I was recommended. After a week, I began having short bursts of pain in my lower abdomen, which was similar to how I felt when I first got PFS. It was really scary. As I was noticing this, I began feeling spaced out and apathetic. It was like I could sense that circuits were blowing out in my brain. Later, when I was reading up on goldenseal, I found that it is a very potent CYP3A4 enzyme inhibitor http://www.ncbi.nlm.nih.gov/pubmed/15900287. It’s speculation of course, but perhaps mariovitali is on to something with his investigation into the P450 system?
http://propeciahelp.com/forum/viewtopic.php?f=27&t=8592

The last few weeks have been a roller coaster - expectation and high hopes followed by crushing setbacks. Cognitively, I’m a little worse than I was, but I’m still fit to work. Sexually I’ve taken several steps back. My libido used to be very low, but now it’s pretty much gone. Penile sensitivity is worse. Getting erections takes much longer.

So what have I learned?

  • the presence of gut bacteria and other microscopic nastiness might explain why people get better when doing water fasts.
  • naltrexone definitely helps with digestion.
  • diet can have a big influence on sexual function in a short amount of time. (I believe that if the impact can be this negative, it can also be positive).
    – maltodextrin could be to blame (plosone.org/article/info%3Ad … ne.0052132)
#19

May I ask how is your cortisol level nowadays? I noticed my food was not getting digested during crashes, when my cortisol was super high. Here is an article about chronically elevated cortisol: todaysdietitian.com/newarchi … 9p38.shtml

#20

Thank you for the article (and for asking). I’ve tested cortisol in a few different ways before, and although many of my symptoms can be explained by chronically high cortisol, I haven’t gotten any results that support that. (See image.)

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