Welcome to our community. Please fill in the following template as a way of introducing yourself, and helping others to understand your background and situation.
Where are you from (country)?
Austria
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 - Post Finasteride Syndrome
What is your current age, height, weight?
37, 182cm, 64kg
What specific drug did you use (finasteride, dutasteride, saw palmetto, isotretinoin/Accutane, fluoxetine, sertraline, citalopram, leuprorelin, etc…)?
Finasteride
What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)?
1.25 mg/day every day
What condition was being treated with the drug?
Hairloss (in retrospect likely caused by having taken Accutane prior) - it didn’t actually help my hairloss
For how long did you take the drug (weeks/months/years)?
6 months
Date when you started the drug?
19.04.2017
Date when you quit the drug?
22.10.2017
Age when you quit?
29
How did you quit (cold turkey or taper off)?
Cold Turkey
How long into your usage did you notice the onset of side effects?
On the first days, massive pain in my testicles for a day or so.
After 5 months undeniable Gynecomastia and secretion of fluids out of my nipples which made me stop.
What side effects did you experience that have yet to resolve since discontinuation?
During the treatment: Erectile Dysfunction, Gynecomastia - but many more have started since
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
[X] Erectile Dysfunction
[ ] Complete Impotence
[X] Loss of Morning Erections
[X] Loss of Spontaneous Erections
[X] Loss of Nocturnal Erections
[X] Watery Ejaculate
[X] Reduced Ejaculate
[ ] Inability or Difficulty to Ejaculate / Orgasm
[X] Reduced Sperm Count / Motility
Mental
[X] Emotional Blunting / Emotionally Flat
[X] Difficulty Focusing / Concentrating
[ ] Confusion
[X] Memory Loss / Forgetfulness
[X] Stumbling over Words / Losing Train of Thought
[ ] 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)
[X] Penis curvature / rotation on axis
[X] Testicular Pain
[ ] Testicular Shrinkage / Loss of Fullness
[X] Genital numbness / sensitivity decrease
[ ] Weight Gain
[X] Gynecomastia (male breasts)
[ ] Muscle Wastage
[X] Muscle Weakness
[ ] Joint Pain
[ ] Dry / Dark Circles under eyes
Misc
[X] Prostate pain
[X] Persistent Fatigue / Exhaustion
[ ] Stomach Pains / Digestion Problems
[ ] Constipation / “Poo Pellets”
[X] Vision - Acuity Decrease / Blurriness
[X] Tinnitus (ringing or high pitched sound in ears)
[ ] Hearing loss
[ ] Increased hair loss
[ ] Frequent urination
[X] Lowered body temperature
[ ] Other (please explain)
What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug?
Various behavioral changes (5+ years of Psychotherapy, trying to work out more).
Menagerie of Supplements (ALCAR has made the biggest difference but the positive effects seem to have gone away).
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)?
I have a single CBC blood test pre-finasteride, which clearly shows that my lymphocytes have permanently dropped by 10% (moving to ~22%, below range) and my Neutrophiles have permanently been raised by 15%. - Moving my NLR from 1.40~ to 2.80~. Absolute counts for both remain within range.
This holds for every single blood test I have taken directly after I stopped finasteride until today.
Hormon-wise I have no pre-drug hormone panel, however post-drug it persistently shows (multiple hormone panels):
High Testosterone (8.89 ng/ml (+) [2.50 - 8.40])
High SHBG (61.7 nmol/l (+) [18.3 - 54.1])
Anything not listed in the above questions you’d like to share about your experience?
No
Tell us your story, in your own words, about your usage and side effects experienced while on/off the drug.
On the first few days I had massive testicles pain which subsided afterwards.
I was told by my Dermatologist that this is likely due to a Varicocele, so I visited an Urologist who claimed to find one (my dad also had one, however none of the symptoms I ever had) - 8 years later Urologists claim I don’t have a Varicocele.
Eventually I developed Gynecomastia, but I was in denial about it until I started excreting a fluid out of my nipples. I also lost the ability to have erections. My Dermatologist ignored all of these side effects and did nothing, I then stopped cold turkey myself.
My erections came back stronger for a bit then mellowed out, the first years after Finasteride, as far as I remember, I still had good penile sensitivity and pleasurable orgasms.
From there on over years many psychological symptoms would arise, that I predominantly misattributed to ADHD (since I was born with ADHD).
Quite soon after Finasteride I had suicidal thoughts for the first time in my life and sleep issues.
My condition just gradually has been worsening ever since, especially since having had COVID19 for the first time.
I now suffer from:
-
Almost permanent brain fog, I struggle to do simple math calculations in my
head. -
Starting 2 years ago (since I first had COVID19) parasthesias (tingling) in
both my hands and feet that came and went -
Over the last 3 years or so reduced bodily sensation (not only penile
sensitivity) - reduced smell/taste. -
Unrefreshing sleep (I can sleep 8-10 hours since optimizing my sleep routine
and I always wake up unrefreshed and “hung over” - I’ve stopped dreaming) -
Tinnitus on both ears, which gets louder during stress/overstimulation
-
Extremely low stress tolerance
-
Emotional blunting
-
Hypersensitivity to stimuli - noise and too many audio/visual input “lock me
down” and I become unable to do much of anything -
Vision changes (Dry Eyes, Blurry Vision) - I have been using Hylo Gel for my
eyes regularly -
Dry upper lip
-
My beard has thinned
-
My ADHD medication (low-dose Vyvanse) has stopped working
-
Itchy forehead under stress
After Finasteride I had mostly sexual and depression-like symptoms that were manageable, I mostly focused on working instead of relationships.
Along with COVID19, I now seem to have Dysautonomia/Neuropathic issues including brain fog that severely limit my ability to be productive.
I stronly suspect a link between my PFS having been worsened by COVID19 - Doctors don’t see a “classic” Long-COVID19 progression and all the symptoms I now have seem to also be linked to PFS.
Self-reporting template - ONLY USE FOR FUTURE POSTS TO REPORT ANY TRIALS OF TREATMENTS, NOT YOUR INITIAL MEMBER STORY
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Name of the therapy/substance:
- Dosage:
- How often you took it:
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Status
- Still using [ ]
- Stopped with no lasting change to initial symptoms [ ]
- Stopped with persistent change to symptoms [ ]
- Duration of use: Days [ ] Months [ ] Years [ ]
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Response when you started:
- Greatly improved [ ]
- Slightly improved [ ]
- Stayed the same [ ]
- Slightly worsened [ ]
- Greatly worsened [ ]
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Current response (if you’re still using the therapy/substance) OR Response in the time before you stopped the treatment
- Greatly improved [ ]
- Slightly improved [ ]
- Stayed the same [ ]
- Slightly worsened [ ]
- Greatly worsened [ ]
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Lasting changes to initial symptoms after cessation (if you have stopped for more than 3 weeks)
- Greatly improved [ ]
- Slightly improved [ ]
- Stayed the same [ ]
- Slightly worsened [ ]
- Greatly worsened [ ]