My Story (stress-free read / recovering quickly / 8.5yrs on the poison)

Where are you from (country)? Switzerland

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 finastride

What is your current age, height, weight? 33yrs, 185cm, 90kgs

What specific drug did you use (finasteride, dutasteride, saw palmetto, isotretinoin/Accutane, fluoxetine, sertraline, citalopram, leuprorelin, etc…)? 1mg Finasteride, Saw palmetto

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

What condition was being treated with the drug? Hair loss

For how long did you take the drug (weeks/months/years)? 8.5 years

How old were you, and WHEN (date) did you start the drug? Started early April 2011

How old were you when you quit, and WHEN (date) did you quit? 33 yrs, quit 21st September 2019

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

How long into your usage did you notice the onset of side effects? About a week

What side effects did you experience that have yet to resolve since discontinuation? Most of them

Check the boxes that apply. You can save your post first, then interactively check/uncheck the boxes by clicking on them. If your symptoms change, please update your list.

Sexual
[X] Loss of Libido / Sex Drive
Erectile Dysfunction
Complete Impotence
Loss of Morning Erections
Loss of Spontaneous Erections
Loss of Nocturnal Erections
Watery Ejaculate
Reduced Ejaculate
Inability or Difficulty to Ejaculate / Orgasm
Reduced Sperm Count / Motility

Mental
[X] Emotional Blunting / Emotionally Flat
[X] Difficulty Focusing / Concentrating
[X] Confusion
[X] Memory Loss / Forgetfulness
[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
Testicular Pain
Testicular Shrinkage / Loss of Fullness
Genital numbness / sensitivity decrease
[X] Weight Gain
Gynecomastia (male breasts)
Muscle Wastage
Muscle Weakness
Joint Pain
[X] Dry / Dark Circles under eyes

Misc
Prostate pain
[X] Persistent Fatigue / Exhaustion
[X] Stomach Pains / Digestion Problems
Constipation / “Poo Pellets”
[X] Vision - Acuity Decrease / Blurriness
[X] Tinnitus (ringing or high pitched sound in ears)
[X] Hearing loss
[X] Increased hair loss
Frequent urination
Lowered body temperature

[X] Other (please explain)
[X] Nausea
[X] Brain fog
[X] Severe sleep disturbances
[X] Visual Snow
[X] Canker Sores
[X] Usual, uncharacteristic low stress tolerance
[X] Tetany

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

If you have pre or post-drug blood tests, what hormonal changes have you encountered since discontinuing the drug (please post your test results in the “Blood Tests” section and link to them in your post)? Noted for future

Anything not listed in the above questions you’d like to share about your experience? Yes

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


So my story began once stopping Fin 1mg + Saw daily after almost 8.5 years. To add complexity, I stopped during a very difficult and stressful time at work, during a time where I was going to bed at around 3am most nights and also while travellinqg on holidays in Slovenia (heightened lyme disease risk). On top of that I exhibited no apparent symptoms whilst on the medication prior and totally forgot I stopped the meds suddenly. This unfortunate set of events made it very difficult to pin-point what may have been the cause and unfortunately caused a massive delay in starting the healing process and diagnosing myself - almost 4 months to be exact. Also take into account I had never mentioned this important factor to all the medical professionals I saw either…they never asked, it never triggered.

Day 1 to 4 month mark - Un-diagnosed

SYMPTOMS:
During this time I experienced a lot of different symptoms, some came on hard, some slowly and got worse over the weeks / months - see symptoms at top of page. I dont want to go into the physiological symptoms in detail as I really dont want to go back to that dark place and I promised I would write this piece stress-free for the readers. If I was to choose what class of issues I was having the most - physiological would be it. On the other hand, I got very lucky it seems with the sexual side of things, apart from maybe / possibly lowering libido during the meds and severe lowering after stopping I haven’t had any of these symptoms. Many of the other physical and physiological elements continued as I had no idea what I had. I had no diet, kept drinking alcohol and coffee, even thought insomnia was my diagnosis so put in place CBT-I tactics to combat them - BIG MISTAKE! WE DO NOT HAVE INSOMNIA. Continued putting myself in stressful situations at work…etc etc. I even almost quit my job as I thought this was the cause and continuation of my extreme symptoms.

Two of the top most disturbing non-physiological symptoms I had at this point:

1. Sleep & Fatigue
Sleep was the first symptom that hit me within a few days after stopping the poison and has been the biggest disrupter in my life since. At this point, my ability to switch-off once head hits the pillow had completely disappeared. Normally falling asleep within 20mins I now couldn’t fall asleep at all. Normally sleeping for 8h, now I couldn’t stay a sleep for longer than 1-2 hours. I started recording my nights in a sleep diary and often go back to those entries to see how far I’ve come. As mentioned below, I started taking sleeping pills to help but often these would only knock me out for max 3 hours or wouldn’t do anything, specially when I took another pill once woken during the night. A typical night without sleeping pills - heavily stressing about the nightmare of sleep before bed, bed at 11pm, take 1+ hour to fall sleep, sleep till 1am say, then go in and out of light sleep for the rest of the night, hot flushes, anxiety, get out of bed completely zonked and sleep deprived = say 3 hours of sleep max. To make matters worse, I put in place CBT-I measures that further fried me, more on that below.

2. Tinnitus
This seemed to come on quite quickly after stopping. A high-pitched buzzing in my head which is still there to this day. Not localised to a specific ear, sometimes lightly pops at night, like the popping you might experience descending for landing on a flight. Manageable but disturbing as my hearing had always been very good with no issues at all. Having this checked out, specialist couldn’t understand how this happened and put it down to the anxiety and panic attacks I had experienced in the first few weeks. Also found some hearing loss, potentially due to it masking certain frequencies. As for my own perception of hearing loss, I dont really notice and my wife has not mentioned or noticed anything.

3. Tetany, Twitching, Shaking
First noticed my left finger involuntarily twitching very early on. Mostly occurring during meditation, when not moving or during heightened periods of stress. It would twitch uncontrollably for about 3-5 seconds then disappear, then re-appear shortly after. Also my right hand shakes mildly uncontrollably, mostly when close to or in a hypoglycemic state - to the point where now I use it to gauge whether I should be preparing to feed or not. My jaw used to shake uncontrollably also, could have been down to the anxiety, not sure. The intensity of these have lessened over time however still present 5 months on, except for the jaw shaking which appears almost completely gone.

4. Hyperglycemia, Blood Sugar
This one is likely due to the damage done to my adrenals / endocrine system. What I hadn’t realised early on is that I should have been eating every 2-3 hours. This doesn’t seem to be spoken about much on this forum so it’s possible it was only me. The longer I fasted, the worse my anxiety, brain fog and shaking got. From what I understand HPA Axis Dysfunction causes the hypoglycemic effect due to emergency cortisol production. At this point I had no idea so was eating 3 / 4 meals a day, this may have possibly been the reason for the lack of sleep, low mood and severe anxiety I experienced.

WESTERN MEDICINE:
The conventional medical world were absolutely no help in this country at this point in my journey, of course the caveat here is that no one asked me had I been on any hormonal medication. I saw four general practitioners, some put me on sleeping pills, others told me I had a reoccurring EBV infection, some tried blood tests to check for lyme disease etc. I even remember one turning around and consulting his books to see what it could have been. I saw three psychiatrists, one put me on Bromazepam which I took to sleep for 2 weeks then weaned myself off as I thought it was a fkin joke to be on. Another put me on Ambien which I took for 2 weeks as well and also weaned myself off for the same reason. I saw two neurologists, one told me I had Insomnia and another recommended I do a sleep study. The equiv. of $4,000 USD later in medical medical bills and I was no closer to figuring out what I had.

FUNCTIONAL MEDICINE:
My first sign of relief 3.5 months in was when I went to go see a functional doctor recommended by a family member. Within a 45min Q&A she diagnosed me with potential HPA Axis Dysfunction (Adrenal Fatigue). She also recommended I do gut microbiome, cortisol and melatonin test. Thank F for this, although she had no idea what actual condition I was facing (and neither did I), beginning this protocol really helped almost immediately. I must have been completely Zinc and Magnesium deficient as when I first took these for the first time they absolutely floored me. It was like I had just run a marathon. I also must have been completely GABA deficient as I’ll always remember taking the L-Theanine for the first time…it was like someone hit me with a love truck. I had this giant grin I couldn’t shake and for the first time in 3 months I actually felt like myself again. She also put me on a slew of other supps to repair the Adrenals (listed below).

The gut microbiome test also came back - my gut was all over the place. I had a moderate Candida, Enterococcus and Streptococcus overgrowth. My normal gut flora species were so bad the graph looked like a Christmas tree and the Pathogen Summary / Recommendations at the end of the report was 3 pages long. Having been a very healthy, fit individual before this the report was a bit of a shock. The report was taken at the 3 month mark since stopping the poison.

DIAGNOSIS
The diagnosis / realisation came one night as I thought to myself ‘Why is this adrenal issue taking so long to heal from and why are the symptoms so extreme?’. Then, like a light bulb, I remembered…that hormonal treatment I had taken for so long, which had become such a normal part of my life…was gone. Reading through this forum and symptoms it immediately clicked. Checked my timeline and sleeping records and it all came crashing down. PFS could be the only thing that would have caused all of this within a two week period. Self-diagnosed. I emailed 10 doctors on the PFS Foundation > Medical Professionals page and only 2 responded.

4 month mark till now (5 weeks+) - Self-diagnosed and Recovering:

The last 5+ weeks have been astounding compared to the early days. I’ve gone from extreme fatigue, sleep deprivation and contemplating the relevance of my life to sleeping 6+ hours (broken but I’ll take it) and feeling like myself again. The extreme rate of recovery and healing compared to the first 4 months really shows these measures work. I’m going to continue testing and reporting back as often as I can however please do not forget these are my opinions and recommendations. These are based on you legends and information sharing on this forum, testing on my own body, my own record keeping and a fantastic functional medical doctor.

My Advice / Recommendations (5 weeks in):

My profile: 33 yr old male, lean 90kg’s, very healthy and fit prior, long-time casual (as in not pro) powerlifter and bodybuilder, no known long-term illnesses or conditions, known diabetes and heart conditions in the family.

DIET
Diet appears to be one of the most important factors. Already heavily discussed on this forum. Heal the gut, load up naturally on Selenium, Vitamins, good fats, etc etc. Some of things I incorporated which seemed to rapidly help the healing process:

  • Went completely gluten free
  • Did not stop dairy - controversial I know due to what milk may do to your hormones
  • Completely stopped refined sugars in every form
  • Ate a shit load of fruit, vegetables, beans, non-gluten grains
  • Snacking on celery, carrots, brazil nuts, nuts in general and tuna
  • Load up on Tumeric, Garlic and various other herbs to help the immune system and Serotonin
  • Ate loads of seafood, poultry and reduced red meat slightly
  • Increased healthy breakfast protein intake like chia, hemp & flax
  • Attempted carb back-loading - this is tough so I’m still eating carbs in the morning but upping in the evenings
  • Drank 2-3 litres of water a day
  • Weened myself completely off caffeine (warning: this was not easy as I was a 4 shots a day guy)
  • Started eating small meals every 2-3h to heal the adrenals and void the hypoglycemic affect
  • Snacking before bed - go with warm milk, gluten free bread, cheese, eggs, bananas, turmeric etc for Serotonin
  • Started making Golden Milk before bed - seems to help
  • If I woke during the night, I would get up and eat a small portion of starch-rich foods and protein - no matter how many times it took
  • Didn’t complicate my life with exotic cooked meals taking hours to prepare - pre-cooked batches of everything above and stored them in the fridge to make meals later or made 3 x the amount and froze batches

Of course we could go into great detail as to the WHY for every point above however to keep it short and to the point I wanted to just list them. Do your own research, read more lessons on this forum and if you have intolerance’s, like others seem to have, stay away or modify as needed.

SUPPLEMENTATION
Arguably the second biggest factor to my healing, inherited from that fantastic functional practitioner. Some of these I think aren’t as necessary since my self-diagnosis as the practitioner was healing the HPA Axis issue however I’m continuing them until I finish the bottle and noting down the date to see if anything changes. I’ll try to list the forms of Vitamins as some are better absorbed that others (you dont want to add diarrhea to your laundry list of symptoms) however I won’t list the dosages for various reasons - stay safe, research each supplement, check your tolerance and build yourself a timeline to ween off any if needed. I also wont list the brands…not all supps are created equal so if you’ve got the cash, research the brand and spend it.

  • Zinc Picolinate
  • Magnesium Bisglycinate
  • L-Theanine
  • An Adrenal Optimizer (includes Vit C, B5, Gotu Kola, Rhodiola, Ashwagandha etc)
  • Vitamin C
  • Vitamin B Complex
  • Berberine - a gut super-food which I think really helped and regulated my blood sugar
  • Colostrum
  • The best prebiotic you can get your hands on
  • The best D-lactate-free probiotic you can find
  • Ashwagandha - give it time to set in, will heal adrenals and help with sleep
  • Spirulina

Specifically for sleep

  • PS100 (Phosphatidylserine) - one of those I’ll drop soon as I really dont see any affect, further leading to my belief that the midnight wake-ups are not due to Cortisol dysregulation
  • Glycine - this I’ve started testing and it’s amazing, I’m now back to dreaming again which I haven’t done in over 5 months and I fall asleep almost immediately
  • Tulsi Tea - drinking only 30min before bed otherwise it gives me headaches. I think this really does help relax and ready for sleep.
  • Any other form of known herbal teas that help i.e Chamomile, Lavender etc

Supplements I have not yet tested yet on myself but plan to

  • Reishi Mushrooms
  • Cat’s Claw
  • L-Glutamine
  • Gymnema Sylvestre
  • Silexan 80mg
  • Gotu Kola liquid
  • Selenium - very easy to overdose on if you’re already eating a diet similar to the above so be careful

SLEEP DISRUPTION & FATIGUE
As mentioned above this was my biggest issue in the early days so I have lots of recommendations. Again, remember these are my own and should be taken with a grain of salt. My current nights look something like this - bed at 10pm, like clockwork wake at 3am regardless how tired I was (yeah wtf?) shaking and low blood sugar feeling, get out of bed, eat a starchy meal, back to bed, drift in and out of sleep until 5amish, 5am - 8am I’m probably exhausted and sleep deeply. I really hope these tips help you on your journey:

  • YOU DO NOT HAVE INSOMNIA. Yes you might show related symptoms and insomnia might be the result of physiological effects of this poison however be very careful with treating those with CBT-I (Cognitive Behaviour Therapy Insomnia). The thing about some CBT-I tactics is that they place stress and strain on sleep debt. So I can imagine on a normal functioning endocrine system the debt racks up and the patient’s sleep draw becomes so great they can’t fight against it. I tried this…it fked me up. My damaged endocrine system and adrenals went in to a tail spin digging myself further into severe insomnia. Sleep also tightly regulates blood sugar so during this time my blood sugar was spiking so frequently I was waking 5-6 times a night needing to snack to regulate…borderline diabetes. The Berberine really fought against this however it took time to recover once stopping these measures. CBT-I also has physiological tactics which can definitely help but the physical measures you need to be careful with.

How I over came my sleep disturbances was just to tell myself ‘It’s fine, you can’t sleep but rest counts towards recovery (which is true)…it’s not REM or Deep phase but it’s good enough’. This helps you stay in bed giving you as many chances as possible to drift off to sleep. I never formed a negative association with bed by remaining in it post-self diagnosis, negative association is why you’re told to get out of bed after 20min if you can’t fall asleep.

  • Go to bed at 10pm every night, without fail weekdays and weekends. This will give you the maximum amount of time to attempt sleep and if fractured, will increase possible total sleep
  • Limit your artificial light exposure 2-3 hours before going to bed. This will affect your pineal’s ability to excrete Melatonin
  • Schedule to enable blue-light filters on your devices 2 hours before bed - or just dont use your devices at all at that point
  • Melatonin is not a cure but can help in certain cases. You dont need to OD on this, micro-dosing on 1mg or less is as effective as high doses. I found taking this during a night wake-up can help you drift back to sleep
  • A few drops of concentrated lavender on your pillow before bed can help and has research to back it
  • Glycine as mention above really helped me for various reasons. Look it up and give it a go
  • For me, due to the Tinnitus, I listen to sleep stories found in abundance on the app Calm - these really help me drift off to sleep
  • Follow all the standard sleep hygene measures, clean room, complete darkness, only use bed for sleep and sex etc etc
  • Ensure your room is cool, the Glycine will reduce your body temperature to help but sleeping in a stuffy, hot room wont help
  • Don’t worry about wake time for now, once you start getting solid sleep then you can start training your circadian rhythm to naturally wake up

From what I understand everyone’s sleep disturbances are different. If you see any similarities above or have advice please share them or point me in the right direction, thanks you bunch of legends.

GENERAL RECOMMENDATIONS

  • Meditate in the morning. Meditate a minimum of 10 minutes per day. Meditation took me a while to learn and finally clicked so keep at it.

  • Reduce stress as much as possible, I’m lucky enough I could convince my doctor to put me on 40% which really helps with bad nights and general work stress

  • Try to relax as much as possible at night before bed, Epsom salt baths, turning off the TV and reading a good book (not in bed as advised above)

  • Remain as consistent as possible in everything from taking your supps to your diet. Try not to modify

  • I seem to be uncharacteristically susceptible to stress attacks for no apparent reason. If this is also you try to limit your news intake, any negative environments and even negative films or visual stimulation.

  • Return to fitness and exercise as soon as you can. This may seem counter-intuitive but cardio really helped in the early days. I started jogging for a maximum of 20 minutes lightly to start off with. I would feel amazing after it and continued every two days. It also helped me sleep better that night. Now i’m back at the gym lifting weights and doing cardio workouts that last much longer periods.

  • My final recommendation relates to this forum. This forum can be both a highly collaborative, informative space or a dark abyss of negativity and stress. I found this very difficult to manage with my symptoms, if you’re lucky enough to have a family member or friend along with you during your journey go through them by-proxy. I had my wife read through recovery stories and search keywords whilst I sat next to her doing something else. If it wasn’t for this tactic I wouldn’t have been able to go through this forum on my own - that’s how bad I was.

  • STOPPING: If you’re going to stop Fin dont do it during a string of other events in your life that may mask the affects / confuse the diagnosis. You’ll waste time trying to figure out what was the root cause. If you’re on this forum however you’re likely in good hands anyway.

I’m not going to sign-off here as my journey has just begun. I want to thank all of my fellow brothers and sisters affected by this fkin b#$%&@t poison who have posted here in a positive way to help others. It’s because of you that I felt compelled to come back and post this saga. I’m committed to a complete recovery however will not be a regular visitor to this forum. I feel certain negative aspects of this forum can really stunt recovery which is why I’ll be limiting it. If you have any questions please do not hesitate however dont expect an immediate response.

Stay strong my brothers and sisters, we’re on this journey together.

…oh and if there’s any class action law suit going let me know…someone needs to pay for this.

Regards,
Jezza from Switzerland

8 Likes

@Jezza could you please pm me the brand of adrenal optimizer you take? I’ve been having some mild success with one but it has a few ingredients I’m not a fan of that may be causing me anxiety so I’d like to switch to another one

What does this exactly mean? Which medicine are you referring to?

Thank you @Jezza for your story and details. Your sharing of information means so much. Let us know if you like, of both positive and other changes.

3 Likes

Hi @Lostinaustin, so i’m taking Jarrow’s Adrenal Optimizer. Worked well for me but hard to know if it was really the determining factor. Is there anything else you’ve introduced that could be causing the anxiety? Are you on L-Theanine? What about any nootropics like Gotu or Ash?

Keep fighting and stay strong my friend!

Hi @Crossroads, this means that I was lucky enough to have a primary care doctor that wanted to help. Together we put in place a plan to reduce stress and ensure I wasn’t going to loose my job over this. He put my on 40% (meaning 2 days a week) at work, the other 60% (3 days) I would not work and would try to rest and recover. Obviously this wont help people on a wage, I’m on a salary and well protected in Switzerland. Trying to maintain a regular 100% schedule at work was incredibly difficult for me so this tactic really helped in the early months.

Hope that helps answer your question?

Thanks @Akiyah! Happy to know its helping!

Yes i’ll absolutely be posting an update soon, i’ve been trying a few things lately that might help others.

Speak soon!

1 Like

@Jezza Did you ever have any problems or changes with your muscles, skin or hair? Any kind of changes in muscle density or how your skin looked and felt? Any dryness of the hair?

I think it was specifically forskolin that was in my adrenal supplement that was the issue

Oh ok interesting. Have you given that Jarrow one a go, how has it been?

Hi @Dknighten,

No I didn’t actually, not that I noticed. I may have though right after stopping however these things would have been the least of my worries.

The only changes I may have had would have been with my muscles - loss in muscle strength and size for sure. Could be due to a miriade of other things though, no longer excersising, no longer eating well etc.

and about sexual probs?

As mentioned above, not many apart from libido but not sure if this is linked to fatigue or not. Test results came back in the normal range.

I already have Anxiety and am very prone to attacks. I should stay away from forsolin i guess? Did you stop using it?

I don’t want to give medical advice but in my opinion I really think forskolin made my anxiety and panic way worse. I tried it by itself and then weeks later as part of a adrenal supplement and both times felt similar effects.

Thank you! You prob saved me from a panic attack i will be returning it

Yes I agree with @Lostinaustin above, stop taking it and gauge how you feel. Based on some quick reading about forskolin it’s predominantly a weight loss supplement so my first reaction is what the f@#k is it doing in an adrenal optimizer? Just goes to show spent the extra cash on quality brands I guess.

I’m happy for you! I see you put going strictly gluten free in the first thing that helped you. What a coincidence because that’s exactly what cured me after suffering for 7 years. You can use everything else you listed but without going gluten free nothing will work. Those other things are complementary to a recovery but gluten free is the foundation. I also saw the protocol of cdnuts…he also went gluten free. Again, what a coincidence. And an italian guy from the italian forum which I spoke also got cured from PFS after going strictly gluten free. Those can’t be coincidences anymore. If I eat gluten, even a super small amount my symptoms come back.

2 Likes

Would gluten free cure the ED???

Thanks for the comment @glutenfog, very interesting. Once I progress a bit further I’m going to try and reintroduce gluten slowly into my diet to see what effect it has, same with alcohol. I’ll do it slowly changing nothing else to see if it’s indeed these elements that have had such a profound effect.

Funny enough my wife is 31 weeks pregnant, has been following my diet from the beginning and has had a dream pregnancy up until this point. No bloating, hormonal issues, problems sleeping, nausea, vomiting etc. Again it could be anything, interesting nonetheless.