My theory on PFS

General Discussion
#1

I believe that our lack of libido is due to shrunken or numb penis for the vast majority with 15% been libido erased mentally

In essence I’m saying that if we cannot feel our penis then we will obviously have no sex drive

My dick has shrunk due to low T and Low DHT and will never be the same again

I don’t have gyno but do have belly fat, also associated with low T

In my case I feel like my crash, resulting in low T and low DHT is responsible for 85% of my ill health and permanent side effects

Fuck you once more Merck, you evil bastards

#2

What I don’t understand is how the drug keeps on damaging our bodies for such a long time after usage

I stopped taking it after 4 weeks use in March last year, yet I’m getting worse

#3

I hear ya man, no one should ever have to live like this. I’m going on 3 years now and I consistently crash every few months. Stopping masturbating has helped a little, but there’s a realisation there that no matter what the treatment, drug or otherwise, I’ll never be the same again.

#4

If low T and DHT is to blame for are sides could anyone attempt to provide me with an explanation as to why my testosterone levels have gone up
To the 700 NG/DL last year and have stayed this was until present day.

In other words almost 4 years ago I crashed. For the first three years my total T never tested above 350 Ng/DL. Last year all of a sudden my total T tested in at 720 NG/DL. My latest set of labs where done two weeks ago and my total T came back as 710 NG/DL.

We don’t even need reference ranges to know natural T levels in the 700’s are normal for a 29 year old.

But yet as far as all my sexual sides go I have experienced no improvement at all when comparing how I felt at 350 ng/Dl to how I feel now in the 700’s. Clearly something about pfs lowers your natural levels and keeps them low for extended periods of time (in my case approx 3 years). However I’m
Afraid something else is going on in our body’s other than low hormone levels.

Oh yea and not to mention raising them unnaturally via TRT or clomid does not work for me or anyone else on here as well.

So yea PFS results in Low hormones is safe statement to make.
But raising them does not solve the problem so there is something else going on.

Last thing about that that’s kinda of interesting to me is fact that my muscle loss, energy levels and a couple of other small PFS related symptoms have all improved sense my T levels stabilized and stayed back up in the 700 range.

This tells me the aspect of PFS that’s causing sexual symptoms is different than the issue that’s causing other symptoms such as muscle loss.

#5

do you know “kennedy disease”? looks like we are suffering some kind of this ilness. guess whats the cause of this? Androgen receptor gene mutation…
en.wikipedia.org/wiki/Spinal_and … ar_atrophy

#6

As far as my opinion goes on any of these gene mutation theories goes I feel like they are easy to rule out or rule on. For example

If a person had Kennedy’s disease they would have high CPK enzymes in the blood.

Also a Kennedy’s disease gene can be found in blood by a genetic laboratory.

After all the blood work us PFS people have had over the year I believe it’s unlikely anything this easy to spot would have been missed. I mean we are talking about pretty clear cut solid markers.

But hey go read about blood tests to test for Kennedy’s disease and go get texted for these tests and report back. cant hurt.

#7

are you sure your lab is reliable? did you try a different lab to confirm the results?What did you do different to bring the number up? any herbs? or especial meds?

#8

5 alpha victim- you feel absolutely no different than you did 4 years ago when you crashed? You have had zero sexual improvement?

#9

I don’t know about CPK but my C-Reactive Protein was very very high and I was feeling pain in every inch of my body like I was melting every day. Doctor called me in his office and told me that my number was too high and I was at the risk of heat attack.
Yes We should not rule out any possibility no matter how far it might look. Please do tests for Kenedy’s .
I read few posts where Accutane sufferers claim to have got gene mutation after sides from Accutane. Now as Accutane is a 5AR inhibitor then why not the same thing can happen to us as now we know very well that all 5AR inhibitors(Fin, DUt, SAw palmetto, ACCai berry extract,Accutane etc) cause the same side effects.

1 Like
#10

Do we know these accutane victims’ claims are real? I mean do we have real proof?

#11

What did the doctor end up doing in response to seeing the test result that made him tell you that you where at risk of having a heart attack? Did he agree that there was any connection between that test result and your symptoms that you have experienced from a DHT inhibiter.

As far as the answer to the question have I not experienced any improvements in sexual sides sense this whole thing started for me. I have not experienced any improvements. The only exception being real recently with in the last month. But the improvements are minor and I don’t know what to contribute them to. It could be l-argine that I started to take every day as of last month or vitamin b-12 that I started to take every day starting about a week and half ago. But the main thing is as soon as I started having normal testosterone readings that jumped from the mid 300 range to The 700’s as of last year I did not notice any improvement at the time my levels went up Or right after.

As far as if I think my last testosterone readings (the one taken a year ago and the one I had a couple of weeks ago) that tested in the 700’s were lab errors or not the only thing I can say is they were both done by quest and done a year apart. Now that that idea is in my head I will have my total t tested one more time in a couple of months. If that’s my 3rd result that shows a reading in the 700’s than I feel comfortable that I am looking at accurate readings and that a lab error is not the reasoning behind why I am seeing a higher T reading.

I contribute my rise of testosterone levels to a year and a half worth of clomid treatment that an endo agreed to put me on in response to my low/normal readings of Total testosterone and symptoms I was getting after my pfs started. I took 50 mg of clomid every other day for 15 months. Than weaned off over three months.

Strange thing about my experience with clomid was that right after my weaning off period was done my T levels dropped below what they where before going on clomid but than went up And stayed in the 700’s. I’m basing this off of assuming my 700 readings are not lab errors

#12

I remember few weeks back there someone posted here but Mew told him this is not accutane forum.I can not searh it now may be you can try it should be here on the forum.

#13

what is your free and bio available T? this is what matter most for us.

#14

I will post my free and bio testosterone results from right after my pfs started and my free and bio testosterone results from my more recent blood labs tomorrow!

To tired to dig through my huge pile of med records right now. But thanks for pointing that out

#15

also did you have any shrinkage? if yes did that reverse too with T increase?

#16

(Approx 8 months after pfs started and before clomid blood work results)
LH: 3.3 mIU/mL (1.7-8.6)
FSH: 2.5 mIU/mL (1.5-12.4)
Estradiol: 21.1 pg/ml (7.6-42.6)
SHBG: 24 NMOL/L (13-90)
total testosterone: 366 Ng/Dl (450-1000)
Free testosterone: 9.9 pg/ml (9.3-26.5)

(Blood work results approx two years after pfs started and approx a year and a half after taking clomid. Note these labs we’re take the day after I was finished weaning off the clomid)

Total testosterone: 279 ng/Dl (240-950)
Free testosterone: 8.1 ng/Dl (9-30)
Nothing else tested at that time. Pretty much looked at it like I was fucked because I’m
Lower than I was before clomid treatment. Same endo that put me on clomid now puts me on TRT and I stayed on TRT for about 4 months. After seeing no improvement in sexual sides on TRT I stopped cold Turkey no pct at all. (at this time I know something is just not right because I did not notice any improvements In sexual sides on clomid or TRT)

(Blood work results approx 8 months after I stopped TRT cold turkey. Which is also approx one year after coming off clomid. Which is also approx 3 years after pfs started) of course I was expecting the worst from these results. However was really surprised.

total testosterone: 761 ng/Dl (250-1100)
Free testosterone: 164.4 pg/ml (35.0-155.0)
Nothing else tested at that time. Again very surprised by these results seeing that these results were from after it seemed the clomid failed it’s intended purpose and after I was on TRT for a short period.

(Blood work results from 04/15/2014. Five more months after my good testosterone readings.)
Total testosterone: 712 ng/Dl (250-1100)
Free testosterone: 103.7 pg/ml (46.0-224.0)
Bioavailable testosterone: 208.7 ng/Dl (110.0-575.0)
LH serum: 6.0 mIU/ml (1.5-9.3)
FSH serum: 2.5 mIU/ml (1.6-8.0)
SHBG: 33 NMOl (10-50)
Estradiol ultra sensitive: 19 pg/ml (less than or equal to 29)

So as you can see my hormones 3 and a half years after PFS onset all went back to normal. Maybe it was the the after effects of all the clomid I took that resulted in my hormones stabilizing or maybe it was my endocrine system starting the process of fixing it self!

As far as the shrinkage question goes. When this whole thing started I noticed shrinkage in the dick when soft and when having an erection. Also noticed testicles shrunk and where more saggy than usually. Around the time my hormones started to test in higher I did notice that when it’s just hanging there normally not having erection that it does look more normal As far as how I remember it would look hanging in place before pfs. Like not retracted up. Also noticed improvement in testicle size sack not being as saggy around the time my hormones started to test in higher.

#17

But still no improvements in ability to get and keep Erection. Erections are still a lot weaker and about inch to inch and half shorter than before pfs started. Sperm still watery. Weak orgasm. So all the shitty sexual sides are still just as bad for me as when this whole thing started.

My good endo (one that put me on clomid) told me there is chance my now good Natural T levels need a chance to “activate the cells” in which case all my sexual sides could go away or improve. He said this concept is the same as when people who had low T for a while go on TRT and it takes up to a year of having good T levels to see improvement in ED for some guys.

#18

5 alpha victim
what about you DHT? did it increase too? Can you put values before and after (when your T increased.).

#19

I don’t have any DHT results. Not once have I been able to get an endo or urologist to test my DHT. I always get the standard bs response like DHT levels are not important as far as testing you for hypogonadism. It’s to bad because like you are thinking it would have been interesting to have seen if my DHT levels went up with my increase in testosterone. That would have given me important info I feel like I need.

But at the end of the day as I’m sure you already know to be able to accurately Interpret are DHT levels as they relate to being used to rule in or rule out explanations for PFS symptoms we would need to know whether or not the rise in DHT came from 5ar1 or 5ar2.

In other words lets pretend I did notice a rise in my DHT levels with the above mentioned results. If my symptoms did not improve even though we seen a rise in my DHT levels it’s not like that rules out the low DHT being the cause of my symptoms that are continuing because that extra or rise in DHT could just be coming from 5ar1.

In other words we can’t say hey look this guy had increased amounts of DHT but see he still gets symptoms so we now know extra DHT is not the answer. The only way to rule out extra DHT being the answer is if we can find a way to confirm it’s being produced in places in are body where 5ar2 is present.