I’ve filled in the introductory template below:
Where are you from (country)? USA
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?) PFS Foundation and new friends I met through it.
What is your current age, height, weight? 47, 5’10", 140lbs
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.)? Topical on scalp twice a day, 0.5mL: 0.3% finasteride, 8% minoxidil
What condition was being treated with the drug? Hair thinning
For how long did you take the drug (weeks/months/years)? 7.5 weeks
Date when you started the drug? Nov 1, 2023
Date when you quit the drug? Dec 19, 2023
Age when you quit? 47
How did you quit (cold turkey or taper off)? Cold turkey
How long into your usage did you notice the onset of side effects? 3 weeks in had panic attack, resting heart rate 155bpm, waves of numbness in head, tingles through body
What side effects did you experience that have yet to resolve since discontinuation? Fight or flight sensations at night that wake me up after just a few hours sleep, brain fog, memory and cognition impairment, tinnitus, vision degradation, hearing loss, anxiety / somewhat mild panic attacks. Zero sexual side effects.
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
[ ] 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
[ ] Emotional Blunting / Emotionally Flat
[x] Difficulty Focusing / Concentrating
[x] Confusion
[x] Memory Loss / Forgetfulness
[x] Stumbling over Words / Losing Train of Thought
[ ] Slurring of Speech
[ ] Lack of Motivation / Feeling Passive / Complacency
[x] Extreme Anxiety / Panic Attacks
[ ] Severe Depression / Melancholy
[ ] 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
[ ] Weight Gain
[ ] Gynecomastia (male breasts)
[ ] Muscle Wastage
[ ] Muscle Weakness
[ ] Joint Pain
[ ] Dry / Dark Circles under eyes
Misc
[ ] Prostate pain
[ ] Persistent Fatigue / Exhaustion
[ ] Stomach Pains / Digestion Problems
[ ] Constipation / “Poo Pellets”
[x] Vision - Acuity Decrease / Blurriness
[x] Tinnitus (ringing or high pitched sound in ears)
[x] Hearing loss
[ ] Increased hair loss
[x] Frequent urination
[ ] Lowered body temperature
[x] Other (please explain):
- Inability to sleep longer than 2 or 3 hours at night.
- Fight or Flight sensations at night, waking up to panic symptoms
What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug?
I’ve been trying some supplements after blood, urine, saliva tests indicated imbalances. Taking Methyl B Complete (B vitamins), Boron (to reduce SHBG), Magnesium with L-Theanine (for sleep and to modulate my high Dopamine, Epinephrine, and GABA levels)
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)?
Fight or flight sensations in my head almost constant. Most noticeable at night which wakes me up. I can feel the physical sensations in my head almost like tingling or waves of numbness, almost like sinus pressure behind eyes and upper nose. In addition to affecting sleep it affects my thinking during the day, often just because it’s so distracting of a feeling it makes me loose my train of thought. I’ll link to test results but here are notables:
High levels of SHBG (Sex Hormone Binding Globulin) which binds to Free Testosterone not allowing my tissue to use it.
High levels of Cortisol in the morning, night, and through night. Low levels during the day.
Low levels of DHEA.
High levels of Dopamine, Epinephrine and GABA
Anything not listed in the above questions you’d like to share about your experience?
I used a company called Happy Head who prescribed me the topical finasteride online just by sending photos to their dermatologist. After 3 weeks of use I experienced my first every panic attack in my life (no personal or family history of anxiety or mood/mental disorders) and went to urgent care for blood tests and EKG which came back normal. They suggested I was either dehydrated or had a sinus issue causing vertigo and referred me to an ENT. That same day I checked Happy Head’s website for their FAQ page about side effects and the ONLY ones listed were sexual side effects. So I kept applying topical finasteride and made appointment with ENT to check other causes. In the 4 weeks between then and my ENT appointment I had 2 more panic attacks after drinking coffee (which I always did for decades), sleeping issues, brain fog, cognition issues, tinnitus and vision degradation. The ENT tested my hearing and I had 10 decibels of additional loss but he couldn’t find any other cause and had never heard of finasteride. Gave me antibiotic and a steroid for possible sinusitis which we thought could be causing symptoms. Next day I asked Happy Head customer service if any other customers had my symptoms and they sent me a list of 8 side effects that included mine. I asked why they weren’t on their FAQ page about side effects and they told me “We tell customers if they ask.” Then they showed me their “Legal” page which listed more info about my symptoms and also mentioned Post Finasteride Syndrome and the Foundation website. I was livid!!! This was information I needed to know before deciding to use a cosmetic product!!
I stopped finasteride topical immediately. I spoke to the dermatologist who prescribed finasteride to me and he said my side effects should go away after stopping, usually a couple weeks. Two weeks later I spoke to him again telling him they hadn’t gone away and he said after 30 days it should clear up. He also told me he Happy Head has 100,000 annual customers and he deals with 4,000 of them every month. He said he’s prescribed finasteride to patients for 20 years and could count on one hand the number of patients who’s side effects persisted after stopping. And of those he said side effects subsided after 30 days. Yesterday, 3 months and a week from stopping finasteride, I asked him again if I’m miraculously the only patient he’s had of tens or hundreds of thousands in 20 years who’s side effects persisted this long and he said “Yes, you’re the only one.” Whatever helps him sleep at night. smh
Had MRI to rule out Acoustic Neuroma. Came back normal.
Saw an Endocrinologist who said he had experience with PFS. First appointment he tried to sell me a device you wear on your head that shines a red light on the scalp that blocks DHT. Is he tone deaf??? Aside from this he seems to want to help and ordered tests. Had full blood panel with hormones check. Did Adrenal/Neurotransmitter urine/saliva test as well.
I have high GABA, high Dopamine and high Epinephrine, all in the red above normal range. In the yellow, slightly under normal range I have low Seratonine, Phenethylamine, and Creatinine.
Results also showed high Cortisol at night, above normal range, in the morning and before bed with low Cortisol during the day (HPA dysfunction?). And results show very low DHEA at 29, well below normal range (137-336)
This mixed with my high SHBG results. Normal Testosterone levels though. I’m now taking 4-6mg of Boron daily to try to bring that down. I’m eating greens, proteins, fats, and exercising.
Things that seem to make my symptoms worse:
Sugar and junk food.
Coffee/caffeine.
Allegra, Cough/Cold medication.
Things that seem to make my symptoms better:
Magnesium powder with L-Theanine.
Prednisone (took steroid for sinuses and helped PFS).
Exercise.
Tell us your story, in your own words, about your usage and side effects experienced while on/off the drug:
Same side effects while on and off the drug. Side effects started 3 weeks into topical treatments:
- feeling like I might pass out
- headache
- confusion
- slowed thought processes
- Impaired problem solving, decreased comprehension
- brain fog / fogginess of the head
- trouble concentrating
- dizziness?, light-headedness, vertigo?
- sinus inflammation? / pressure behind eyes/nose
- fatigue, listlessness
- waking up after only 2/3 hours sleep
- numbness / tingling in hands
- difficulty breathing (holding breath used to trigger the weird brain numbness immediately)
- rapid heartbeat (on several occasions it was 155+bpm accompanied by difficulty breathing and went to urgent care for tests)
- anxiety / panic attack (I had 3 severe ones while on finasteride, rapid heartbeat and vertigo(?), which was my first experiences with anxiety/panic attack in my life)
- respiratory infection
- tinnitus now constant (I’ve had before over the years as a musician for brief periods, a couple weeks at a time.)
- vision decline right eye astigmatism. Used to be blurry up to 16 inches away. Now blurry up to 3 feet away.
Update Mar 30, 2024
I feel 95% my normal self now when it comes to cognition, memory, sleep, anxiety symptoms. Although my vision and hearing seems permanently degraded still. I’m 3.5 months post stopping topical finasteride (0.3% in 0.5ml 2xs daily for 7.5 weeks.) So, anxiety, panic attacks, distracting brain weirdness/numbness, cognition and memory impairment, fight or flight sensations throughout night interrupting sleep after only 2 hour segments, etc all are 95% better now. The last couple weeks of targeting discrepancies and abundances in my body with natural supplements seem to really be helping. Here’s what I’m doing that is having the most positive effects that are targeting my specific blood, urine and saliva tests including hormone and neurotransmitter tests. I’m 5’10” and 140lbs.
Boron 6mg (2mg 3xs daily) Blood tests 3 weeks ago showed I have high SHBG levels and normal free Testosterone. This means my body has probably less free T than the test shows that my tissues can use due to too much SHBG.
L-Theanine 300mg (100mg 3xs daily) Urine test 2 weeks ago shows I have very high Dopamine, Epenephrine, and GABA levels. Theanine supposedly helps balance all of those.
Vitamin C and D daily, B complex (as Methyl B Complete nightly before bed) Urine test showed low levels of Seratonine. Vitamin D essential there although I tried 5-HTP and felt super weird. Vitamin B also essential for sleep?/cortisol? I know blood test showed I have high Homostyceine levels which means a B12 deficiency.
Also taking daily multivitamin and daily probiotic just as a fail safe.
Will update with further progress or changes.