A new member, not sure if my symptoms fit in - help me out here people!

Member Stories
#1

Hey guys, I just came across the forum, and I wanted to tell you my story. I want to see if my problems are like yours, and to find out where I can go from here.

To cut to the chase: I’ve never properly tried propecia. I was prescribed it. I had doubts. I took it for one day, and I hated it. And then I stopped. I knew I didn’t feel right immediately, and when this was going to be a potentially long-term therapy, I didn’t want to “wait it out” to see what happened.

I have, however, taken saw palmetto. I took it in the form of procerin for about 9 months. After that, I took it as capsules, using two different brands, with a gap of 3 weeks inbetween when I didn’t use it (due to lack of money to buy it at the time)

When I was taking procerin, I noticed no change in sex drive - either good or bad. On the capsules, I’d say my drive was probably (almost definitely) increased. On the second brand of capsule, which was actually a lower dose, it was through the roof, and probably greater than it’s ever been - and it felt fantastic. In almost every sense, I felt great on saw palmetto - and it helped my hair as well.

Oddly, though, whenever I came off the saw palmetto I felt a pain in my crotch area. It felt more like my prostate than my scrotum. It was more of a dull ache than anything severe. And, to be perfectly clear, I experienced this when I came off the first brand, and then a few weeks later nevertheless started with the second one - so it couldn’t have put me off too much. About two weeks after being on the new brand, and still feeling some crotch discomfort (despite huge sex drive), I decided to quit saw palmetto for good.

Anyway, now my drive feels like nothing. It’s been three weeks, and it was OK to begin with, I didn’t really think about it. I would masturbate a few times a day without much of a problem, and still seemed to get erections and be attracted to people, or so I thought. But a few days ago it all just seemed to collapse, and it dawned on me, and I panicked, and realised how crazy all this really was. And then boom. I’m just turned 22, and I feel like I have no drive whatsoever, and it scares me to death.

I think I had a below-par sex drive before, so this is just killing me. All I want is to feel a healthy libido, feel attracted to girls again, and get erections again like normal. I don’t even care about the hair anymore! It’s a minor problem in comparison.

What the hell can I do? And where do I go from here?

Anyways, here’s a formal list of problems to give you an idea of where I’m at right now:

  1. Where are you from (country)?

England

  1. 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, I remembered it from when I was researching propecia a while ago.

  1. What is your current age, height, weight?

Age: 22
Height: 5’ 9"
Weight: Around 70kg

  1. Do you excercise regularly? If so, what type of excercise?

Not really, but I do a lot of walking and some running.

  1. What type of diet do you eat (vegetarian, meat eater, raw, fast-food/organic healthy)?

A mixed and pretty well balanced diet.

  1. 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
[X] Watery Ejaculate
[ ] Reduced Ejaculate
[ ] Inability to Ejaculate / Orgasm
[ ] Reduced Sperm Count / Motility

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

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
[ ] Increased hair loss
[ ] Frequent urination
[ ] Lowered body temperature

[ ] Other (please explain)

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

None so far

#2

There are a few others users here who took Saw Palmetto and experienced the issues you describe:

kermangd:
propeciahelp.com/forum/viewtopic.php?t=1398
propeciahelp.com/forum/viewtopic.php?p=10934
propeciahelp.com/forum/viewtopic.php?p=11246

Terp03
propeciahelp.com/forum/viewt … highlight=
propeciahelp.com/forum/viewt … highlight=
propeciahelp.com/forum/viewt … highlight=

Since Saw Palmetto also affects 5AR/DHT binding, it operates in a similar, but different mechanism than Finasteride and in general has been found to have a lower side effects profile.

How long ago did you quit the Propecia before taking Saw Plametto? 1 pill would hopefully not cause any major issues, but then again you never know with this drug.

Not sure what to recommend other than bloodtests at this stage.

#3

Yeah, I had a look at the posts and they same a bit different to myself in two respects. Firstly, they had a wider variety of side-effects. I am essentially experiencing none besides the sexual ones (and the mental knock-on that’s having). And, second, they felt pretty bad while on Saw Palmetto. I actually felt awesome while I was on it, it was merely the coming off of it which caused me problems.

I did take one propecia pill, but even though it didn’t agree with me I’m hesitant to blame my problems on that. It was over a year ago and it was only one pill.

I guess I just don’t really know where to go from here. Do I wait it out? Do I get a blood workout? Do I take supplements? The whole thing just seems mad - at my age, it just feels completely ridiculous to be having these problems. But there you go.

#4

Well at least you’re not alone.

You’d be a fool to not see a doctor. Symptoms of high or low libido point to hormone fluctuations. I’d recommend you have a doc examine your prostate for anything abnormal (b/c of the pain) and, like Mew stated, get blood tests to see where you are.

#5

Better yet, i don’t know how it works in the States (or wherever you are), but if you can get your insurance to cover it, I encourage anyone to get the Rhein Labs panel. It’s $225 USD. For one, it’s a 24 hour urine panel, so you see what’s going on throughout the day rather than just in the morning, it contains an ultrasensitive E2 test, which seems difficult to obtain ordinarily, and it’s also more extensive than what docs will usually order for new patients walkiing through the door. A lot of people (me included) sort of walk in to this forum at first with three or four results, and realize sooner or later that other areas need to be investigated.

There are other comapnies that offer similar panels, like Quest Diagnostics, but as far as I remember they wouldn’t serve me in Canada and they were more expensive.

There are things that the main Rhein profile does not address, like thyroid, so you can have things like that tested independently to fill out the picture. Personally I really wish I had been more thorough from the start with testing. I might be better by now (maybe).

#6

Hey guys, thanks for the good responses. However shit things are, it’s always good to know there are others out there who can sympathize with it all.

I’ve been looking at potential blood tests I could do. There’s one within my price range which would cover the following things:

  • Testosterone
  • Prolactin
  • SHBG
  • Free Androgen Index
  • Glucose
  • HbA1C

Is that a good start? I know I’d want to get more if the problem persists, but this should be a fair beginning I would’ve thought.

As silly as it sounds, I don’t yet want to go and see my doctor to get these initial tests. It’d quite possibly actually take longer to get them done, and I don’t want it affecting future employment if it turns out there’s no physical problem there. While waiting for these results, I’m just going to focus on treating my body right, and hoping my body can ‘reset’ itself and get out of this. Any other ideas about my situation are definitely welcome tho!

#7

Well, that’s the thing I was saying about getting a broader panel done – the first three are useful, but I hardly ever (if ever) hear people discussing Free Androgen Index results (in this or other hormone-related health forums), I’m not sure what glucose levels will teach you, and the last one I’ve never heard of.

Does not mean they’re completely irrelevant – I’m certainly no expert on the topic – but in my opinion you will want to get Testosterone, Free Testosterone, DHT, Estradiol, Prolactin, SHBG tested, as well as have your thyroid and adrenals checked out, since they seem frequently to have some connection to other hormone imbalances and generally feeling like shit. For me my cortisol is lower than average, and DHEA in the stratosphere, therefore I am on hydrocortisone to treat the adrenals.

#8

Well, I finally picked up the phone and called the doctor. I have an appointment next Tuesday.

Although it might take some persuasion, I want to get a full blood panel to see where I stand. I’m also going to try and see if I can get my prostate checked. One of these will hopefully show up something. Has anyone got any tips to get the docs to take us seriously?

#9

Print out materials from the Finasteride Studies section showing the negative effects of 5AR2 inhibition, and highlight the relevant passages for him to read.
[/quote]

#10

SO your problem is low libido ? yes Saw Palmetto can do this.
What type of Saw Palmetto do you take ? the liquid one is the worst
its the standardised extract.

How bad is your libido ? almost non existant ?

Quint is right you should get a blood test that cover : Testosterone, Free Testosterone, DHT, Estradiol, Prolactin, SHBG, thyroid and adrenals tested.

Hoepefully the problem is not major (estrogen elevation maybe)

If your local GP or MD would not help you with the blood work, try
do it privately (pay by your self)

#11

Well my problem is both low libido and ED. The libido is very bad. I have next to zero sex drive right now, and this has been the case pretty much since I stopped saw palmetto. Just no desire whatsoever really, and it’s freaking me out.

With erections, it’s very hard to get one, I don’t get any spontaneous ones, and I haven’t had a morning wood since this started. So they’re both pretty bad. I don’t really have any non-sexual symptoms, though.

I took two types of saw palmetto. They were both soft gell type supplements. The first was 320mg, and the second was 160mg. I’m going to try my best to get the doctor to order the blood tests next week. Can’t afford to do it privately, so I’ll just have to be very determined!

As for what’s causing it, well I really have no idea. At first I thought it could all be in my head, but when you’ve got no morning or nocturnal erections that looks a lot less likely. One theory I do have is that I have high estrogen. I know saw palmetto interferes with estrogen in some way, and may well have been blocking it when I was on it, only for it now to rebound. One thing I do know is that on saw palmetto I was horny as hell. I’ve never had that much drive before, even as a teenager. I do wonder if to some extent I had an imbalance before all this, and that saw palmetto merely revealed it.

The only way to tell I guess is to get the tests. I just can’t wait to get to the doctor, which is a very weird feeling!

#12

To give a bit more background as well, I also had pain in the prostate area when I came off saw palmetto. It lasted perhaps a week, and was noticeable but not something that stopped me going about my life. In the last few weeks since then, the pain has returned occasionally also.

So right now, I suppose my avenues of inquiry are twofold: 1) see whether it’s a hormonal problem, and 2) see if I’ve affected my prospect. I suppose it could even be both, but there’s no way to tell until I get the tests.

#13

Zero Libido and ED, i have been there so dont worry you can get better.
I am a testemant for that. For your information i took 320 mg of standardised extract two (2) times a day for six months before any side
effect hit me.

Saw Palmetto work in inhibiting both type 1 and type 2 of Enzyme Alpha
Reductase 5, although the mechanism of how it works is still a mystery.
It basically work differently from Finasteride.

I however never experience pain in my prostate.

When you see your doctor if he/she does not want to do the full blood test
at least push for Testosterone, free testosterone, estradiol and
prostate test (for any infection/inflamation).

And if your doctor is unwilling to help you, try taking DIM (it help your
liver to clear estrogen hormones) and zinc supplement (it work as
a mild anti aromatase enzymes). Why this kind of supplement because i
suspect the problem may be estrogen related.

#14

Hi Kemangd, good to hear from you. I’ve been kicking myself for taking this stuff, as at least the first supplement I tried (320mg) was quite high. At the same time, there are thousands of people taking this with no problems, not just people with hair loss but even people experimenting to stop their acne, and I’d never stumbled across it causing problems like this.

I guess my problems are similar to yours, but different in a couple of ways. I actually felt GREAT when I was on saw palmetto. I felt hornier than I’ve ever felt, and it was amazing. It was only when I stopped that I had a problem. It was so good, that I’ve even been tempted to take it again just to get out of this mess for a while.

Second, the prostate pain. It comes and goes at times as well. I had it last night, for example. This is another worrying aspect of all of this, and something I want to get checked out.

So I’m going to get a prostate check, and get all the major hormones checked if I can. I’ll try some of those supplements eventually, but I want to keep things ‘pure’ at first in order to make sure the blood tests come out accurately for my probems.

It’s been a few weeks now, and I’m still experiencing really bad problems. I was in a club last night, and there were plenty of good looking girls there, but I didn’t feel the drive to go and get any of them - I just felt apathetic. It’s so strange!

EDIT: Something else that might be worth mentioning is that my hair loss has calmed down somewhat, and right now there isn’t really much. Before I’d have been overjoyed by this, but now bizarrely it worries me.

#15

As a brief update, while I’ve not yet visited my doctor I have been thinking quite a lot about my situation over the past couple of days, and I’ve had some interesting ideas.

I’ve come to the tentative conclusion that I may not be in the same diagnostic category as most of you guys with these problems.

This is partly because I didn’t take finasteride (although, of course, some people have had problems with saw palmetto use as well). But it’s more because I believe I had these problems, at least to some extent, before starting saw palmetto.

I’ve always had a pretty low sex drive, and even to some extent difficulty in getting erections. For a long period of time, I’d assumed this was just me having not finished puberty yet - I thought my hormones were soon to properly balance out. Then I assumed it was probably psychological, and that I was depressed or had some ‘issues’ I wasn’t aware of.

But I’m pretty sure now all these explanations are wrong. For the months I was taking saw palmetto, I finally felt much better than I’d ever done before. I’d never felt such a high sex drive, or been able to get erections with the same ease and frequency that I did then. I finally spent a lot more time thinking about girls. Mentally, I was much happier, had much more energy, had much more passion for life. I just felt more on the same ‘wavelength’ as most people, in a way that I somehow hadn’t before. Although it never did much for my hair, I think part of the reason why I stayed on it so long was because I realized this. And it was, funnily enough, only when I came off saw palmetto that I noticed a problem again.

So I’m considering the possibility that I had some pre-existing hormonal imbalance that saw palmetto managed to temporarily correct. I could be wrong, of course, but this is one theory I’m entertaining in my mind right now. I’m going to be laying off these supplements for the time being anyway, and when I get my hormones checked I should have a better idea of what’s going on.

#16

did u check ur hormones before saw palmeto use?..

#17

Hi Italy, the answer I suppose is yes and no. I didn’t have anything checked completely before trying saw palmetto, although I did consider it.

However, while I was trying the procerin form of saw palmetto - which had pretty much zero influence on my drive and general sexual function (unlike the berry extract) - I did get a check of my total testosterone. I did this privately, because I thought I was probably worrying about nothing and didn’t want to get doctors involved if that was the case.

The test actually came back quite high. I don’t have the figures with me, but it was in the 780s I think (with 800 being the top of the range I was given). So at that point I thought “well, it’s probably just me worrying about nothing”, and put up with the problem. Bear in mind at this stage I had no idea about free testosterone or anything else, so I figured that if I had high T, I had nothing to worry about.

When I started taking the berry extract, that was when I realised how high my drive could get (and I felt a lot better overall). I was happy with this, and felt great, and carried on without thinking much about it. Then I came off it, and wasn’t so good, and after a month went back on at a lower dose, and felt great again. And now, having come off of it again, I feel probably even less drive than before, don’t really get morning erections, and generally have a much harder time sustaining an erection and reaching orgasm.

Having read a bit more about the hormonal system, I want to go and get things checked properly again. I think it’s likely I’ll be producing fairly normal T, but my free testosterone I expect will still be low. It could be converting into DHT, estrogen, or binding onto SHBG, or it could be counteracted by prolactin…I just don’t know until I get this stuff tested. What I DO know is that I felt great on saw palmetto, and not so great when I stopped it, then great when I started again, and now not so great again. Clearly something in that berry tilted my hormones in the right direction, it’s just a case of figuring out what it was and replicating that effect.

I’m fairly optimistic that once I find out what the problem is, I can correct it somehow. I don’t believe my androgen receptors are permanently fried, and I don’t believe the prostate’s the problem (I just don’t see how it could affect libido this much). So it has to be hormonal - or at least that’s my thinking right now. Once I’ve found out what’s going on I’ll decide on a treatment and take it from there.

#18

HI …This is not an instigation,cause I wouldn’t do it,but logically,it seems a good thinking to have bloodtests using sawpalmetto and having bloodtest without sawpalmetto…I repeat,I dn’t want to push u to try that shit again,but for sure doing like this is teh way to understand what’s going on hormonally …

#19

Hi Italy, yeah it could work. Right now though my focus is just to get my initial bloods taken without supplements in order to get a baseline. I have no idea right now what’s causing going on hormone-wise, so I’m just going to get some tests and then wait and see.

#20

I’ve just got back from the Doctor. It went OK. Although he seemed to be quite dismissive, I did get him to book me in for a series of blood tests. I think I’m getting my total testosterone, free testosterone, prolactin, and total oestrogen levels checked. I’m also having thyroid and liver checked at the same time.

In a bizarre way, I actually hope something comes back unusual. I don’t care if I have to take supplements, medications, or even TRT to cure this. I just don’t want to be sent away with no idea what’s wrong.