Topical Saw Palmetto

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)? NJ

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 Google search

What is your current age, height, weight? 28, 6’6”, 230lbs

What specific drug did you use (finasteride, dutasteride, saw palmetto, isotretinoin/Accutane, fluoxetine, sertraline, citalopram, leuprorelin, etc…)?
Topical Saw Palmetto 1month (2021), Rogaine (2019).

What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)? I was extremely athletic before and worked out twice a day. I would apply topical Saw Palmetto twice daily.

What condition was being treated with the drug? Hairloss

For how long did you take the drug (weeks/months/years)?
1month

How old were you, and WHEN (date) did you start the drug? 28 (Saw Palmetto), 27 (Rogaine)

How old were you when you quit, and WHEN (date) did you quit? 28, I quote one month after use, approximately November 17th.

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

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

Felt depressed, but didn’t know it was from Saw Palmetto, then got chills, then when I stopped. Two weeks later I crashed…HARD

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

No libido, inability to get an erection (can manual stimulate to Orgasm but it feels like it’s not even my dick anymore)

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
Difficulty Focusing / Concentrating
Confusion
Memory Loss / Forgetfulness
Stumbling over Words / Losing Train of Thought
Slurring of Speech
Lack of Motivation / Feeling Passive / Complacency
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”
Vision - Acuity Decrease / Blurriness
Tinnitus (ringing or high pitched sound in ears)
Hearing loss
Increased hair loss
Frequent urination
Lowered body temperature

Other (please explain) - insomnia

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

Was in the hospital and took several SSRIs which made things waaaay worse. Remoran, Effexor, Gabapentin, Trazadone, and some I don’t remember.

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)?

Lost about 100ng/dl to TT, and 100 point drop on DHEA levels

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

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

Oh jeez, I really wish I hadn’t been so vain and let my hair go. In 2019, I was a 280lb brick shithouse of muscle, with a decent libido to match. I could bench over 300lbs and still run 3 miles at 7.5 minute pace. I took pregnenolone and DHEA at the time because I believed they were hormonal precursors that didn’t have negative feedback (I would much later realize this wasn’t the case). I noticed that my hair was falling out so I used Rogaine to try and hold onto it. I got a slight headache every time I applied it but it went away soon after and I didn’t think much of it. Then I started having panic attacks in my sleep and then had my first crash. I lost a lot of weight and muscle. Dropped down to 215. My gf at the time was very supportive and helped nurture me back to health. We had some issues in the next year and split up, but by then I was back to maybe 60% health. Sex drive was lower but no biggie we can work with what’s left. And I did. Dated a few girls. Then one day I noticed I had DHEA in a box upstairs. Forgot about how it might have contributed to my crash but started taking it. My workouts were getting better, I was gaining more muscle. I was getting back to a respectable fighting shape, and my sex drive ramped up a bunch too. Then, I started having some anxiety and depression and noticed my hair loss was progressing quickly I stopped the DHEA and started applying topical saw palmetto. This is the worst decision I ever made. After about a month of application, my depression was getting bad, like lower than ever. I suspected it was my body readjusting to the low DHEA values (negative feedback?) but I’m now confident looking back that this wasn’t the case. It was the SP. one night my roommate was having a party and I was depressed and went to my room to just be alone. A friend stopped by to check on me and suddenly I started getting a weird chill. Like I’ve just flew through my body. The next day I was just hangin out watching tv and suddenly it was like somebody pressed the flusher on a toilet, my body just went flat, I had diarrhea and was like “okay that was weird, glad that’s over”…it was just the start. When I went to bed that night I woke up to a panic attack. Very unusual for me, I wasn’t stressed at all, and hadn’t had one in years. I also couldn’t really sleep that night. And then my brain just shut the xxxx off. Foods tasted the same, I was severely depressed. I couldn’t think, read, all I could do was cry. I had my ex drive me to the hospital. It was there that I proceeded to endure the “crash” I had insomnia for four days straight, was put on a bunch of different psych meds, drastically lost weight, was exhausted but couldn’t sleep. Had crying episodes, panic attacks and felt jolts of electricity going through my body. It was hard to tell what was the PFS crash and what was the SSRIs at this point but in the hospital, that was when I realized my dick was broken. I might have well been pulling on a limp rope. I did my best to facilitate things, and was able to finish a total of two times in those 10 days. I got cuts on my penis from trying and was scared they wouldn’t heal since I wasn’t sleeping. Finally melatonin helped me get one night of sleep, maybe 6 hrs. The erection I got that morning would be my last. It’s now been about 2 months since onset of symptoms perhaps a bit longer, and the mental side effects have been the worst. very suicidal, depressed, anhedonic. I did hormonal blood work but everything has come back fairly normal. Thyroid, testosterone, and DHEA are within mid-low range. I told my ex and parents I wanted to kill myself today. I’m fighting but really could use some hope. I’ve been working out and doing my best to eat and sleep well, but I’ve lost a lot of muscle, my skin is so dry, my body is freezing, and I’m weak.

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  1. Name of the therapy/substance:
    • Dosage:
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2 Likes

Hi @Tud50316,

I’m so sorry to hear about your story. 280lb is huge! Were you training for anything in particular, or were you just a big guy? There have been other members experience severe muscle wastage, myself included, albeit not to the same degree. I can’t imagine how strange it must feel.

It may sound cliche, but the only thing you can do right now is live one day at a time. Many patients experience natural improvements over time to varying degrees. You really don’t know what life might look like in 3 months, 6 months, etc. Try to avoid anything anti-androgenic and if you aren’t sure, feel free to post here and ask.

There is also a lot of progress being made on both the awareness and research fronts. Fundraising for our upcoming study is going very well and you can learn more about it here: pfsnetwork.org/donate

Please reach out if you need to talk.

I just really was passionate about exercise. If I wasn’t working, I was spending time with friends or working out. Now I feel like my mind and body have been taken from me. I apologize for the hopeless attitude, there’s a lot of people who report little to no improvement years after cessation of the drugs.

No need to apologise, I understand. I’ve had PFS a long time personally and I’ve been through every stage of the journey there is.

Update 01/22/2021

Woke up with an erection for the first time since the initial crash. My sleep quality has been getting somewhat better. Not consistent, but maybe like 50%. Unfortunately the worst of my symptoms was cognitive and has yet to resolve. I haven’t been having as many panic attacks in the night, and crying episodes are down quite a bit but are still occasional. No change to brain fog and emotional blunting. I should add, I have had a number of crashes, past the original crash. They have been rough to say the least, but it seems like I crash up. Like every sub-crash is followed by a slight improvement in symptoms, and doesn’t seem to have any specific triggers.

Maybe you got pssd too because of the antidepressants. This brutal. Doctors gave you poisons in the hospital.
Be very strong dude this shit the most cruel condition in earth.

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Update 01/29/2022;

Armpits starting to get musky again, and face feeling a bit more oily, though it’s been hit or miss because I’ve experienced some days where the dryness is just next level. Cognition is still not spectacular but I’ve been going to work consistently and re-picked back up my side hustle just a day or two ago (hope I have a good weekend here because I don’t want to lose my clients), continuing to push on even when I feel awful some days. Have been waking up intermittently at night but with less panic attacks, melatonin seems to put me back down. No labido as of yet, but I’ve had a few random morning erections. Overall anxiety is a lot better but still having rough days and setbacks. Will continue to report.

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A lot of your experience mirrors mine. DHEA made my hair disappear and I used both topical minoxidil and finasteride and had identical symptoms. I remember the stage that you’re in currently. Suicidal thoughts, panic attacks, extreme anxiety and depression, constant suicidal ideation a, broken/altered sex drive. Lost a relationship. It truly is the worst condition a man can go through short of losing a limb or just dying. DM me if you ever want to vent or have any questions. Best of luck.

Yeah man, I’m sorry you are familiar with the experience. How are you feeling these days and what did the progression of your recovery look like time wise if you did get better?

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I’ve been on this journey for about 16 months or so now. I’ve kind of gotten used to it. Sleep is always inconsistent and I crash occasionally when I take a weird vitamin or do something different. However, the crashes usually only last a couple weeks and then I get back to my post-PFS baseline. It’s fucked up but you just kind of get used to it. You just try to find things that make you happy and trudge through life the best you can. I know it’s cliche, but it does get better as relativity sets in.

02/02/2022

Update this probably more than most. I guess I just can’t stop thinking about how much this has devastated my life. I crashed again pretty hard, had insomnia and kept waking up every hour. I have muscle twitches on my left arm and I’m exhausted. Also my face has changed quite dramatically, I’d post a picture but the forum says the size is too large.

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Update 02/05/2022,

I’m not sure much has really changed. I don’t have panic attack crashes as much of late, but depression and anhedonia has still been pretty rough. I live everyday just going through the motions, sometimes getting glimpses of enjoyment here and there. I listened to a podcast that made me chuckle yesterday which has been rare. My sexual function is still shutdown pretty much entirely. My memory and focus is awful, and tbh my mind is pretty much blank 24/7. I have to think to think and even then it’s really slow and quiet. Hoping for a better baseline the next few months.

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Update 02/08/2022:

So oddly enough I’ve been getting more daytime erections, but my brain is still pretty blank. I was able to get an erection without physical stimulus for the first time about 2 days ago since the crash began in early December. Cognitively I’m still fairly useless, and I’m always tired. I’m wondering if my particular experience here has been auto-immune effected or even Covid related, but it’s really hard to tell. Covid is a vascular disease so it could be related. Idk just guessing.

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Update 02/10/2022

Was really hoping I was coming out of this, but I’ve crashed again. Barely slept last night, panic attacks and night sweats, feeling very dehydrated and my body just won’t hold onto water any more. I’m so upset about this whole situation, and I’m basically brain dead. I’ve lost the respect of my work colleagues who can’t understand what I’m going through. My sex life is over, I don’t even care. I can’t care about anything. Just two years ago I finished my master’s degree in engineering, I was gearing up to finally take on the world on my own terms, and everything has been taken from me. How does anybody reconcile with that. The saw palmetto labotimized me. I’m dead my body is just still here and it’s not even remotely better.

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I appreciate you updating us. These journals will continue to be valuable as time goes on.

Update 02/22/2022

Still feel lobotomized and castrated unfortunately. I’m grateful that the anxiety isn’t all still constant panic attacks. My sleep has been hit or miss, I can usually sleep but it’s not deep. I’ve been making myself go out and do things. I’m in Hawaii right now because I’ve been so suicidal I figured, why not? Used my vacation leave and just went to stay with a friend. Memory and cognition issues have always been the hardest for me to deal with here, and there doesn’t seem to be a lot of posts on here about people improving which is disheartening. Also my metabolism has slowed down tremendously by this whole ordeal and I’m now pretty skinny fat. My gums have receded pretty aggressively on the left side of my jaw which is odd but makes sense since my bones have been feeling weak. I talked to my endocrinologist and she said she couldn’t quite believe this was all from Saw Palmetto. Im going to try and meet with a neurologist, and I also have some cognitive testing coming up in case I need to apply for disability since work is not happy with me. Most days I wish I had cancer because this syndrome is embarrassing to explain and even then it’s unbelievable to most.

Edit: I want to make sure for anybody who reads this that this does not mean that I’ve given up. I’m still hopeful that things can get better. I still suffer a lot, but I’m already light years past where I was at the beginning of all of this three months ago. I have been able to stay out of bed for most if not all of the day for the last couple weeks. Panic attacks have decreased, I can masterbate (although it’s purely mechanical and more like just keeping the pipes clean type of thing), the neurological stuff is really what I need to recover most, so please hang in there. If you’re going through this, you’re going to be suicidal, ALOT. But that doesn’t mean you can’t occasionally experience joy or improvements.

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Please, share with us your experience with a neurologists and test results. I’m currently going through almost the same as you and it has already wrecked my life a lot. But I share your hope things’re gonna be better and I also want to know what exactly happened to us.
Best of luck, mate

I can tell you that as of right now, my DHEA came back normalized, and same with my testosterone. My cbc and metabolic blood work is normal Didn’t get dht or estrogen tested, but my gut intuition leads me to believe it’s less a hormone problem and more of a receptor problem in the body and brain. The androgens are there they just aren’t doing much.

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Same with me, only progesterone seems to be low, but I don’t know if it really means something. DHEA, Test, DHT, estrogen, LH, FSH etc were OK on all tests. Yet I’m still where I am.

Seems to be the case with most people. So the methods of treatment usually revolve around upregulation of receptors and resensitization, if the genes aren’t fully silenced that is.