swelling and fat around midsection.


#21

Well back 2 months later and 1 month on TRT now along with the protocol…Only difference is physical side effects continue to worsen…Up 60lbs now around 220lbs…Seems pretty hopeless now…


#22

To those that keep messaging me below is all I know…This is MY expierince I don’t know what clomid or trt will do for you but it has helped me immensely…Now You can get the same drugs yourself online pretty cheaply…You have to run this stuff for MONTHS…Hormone replacement is not a magic cure because hormones don’t work that way…It is a VERY Slow process over the course of several months to see real improvements…Just like when I crashed it took several months to turn to shit…So you have to stick to the protocol and I actually got worse before improvement began…I have labs again this month and will post results from Gordon then but even with clomid raising my test and free test way up…I have gotten even better on trt so it would appear that u have to get your free test Way high after this shit to feel normal again…

Have improved more this week on than since I have been on trt in 2 months…May feel like death tomorrow but right now I am greatly improved… my “feelings” are improved with well being much improved…Movement is better and more freely…Body is still shitty and watery and mushy…But this works like you improve a little very slowly…Then feel like shit again…The you improve a little more…etc. Its a slow process like 2 steps forward, 3 steps back over and over with gradual improvement…This condition is definelty hormonal and directly releated to testoserone someway or I would not have improved this much on this protocol of Gordon’s…

Thats what Gordon has me on…40mg twice a week…But my nut has shrank already quiet a bit…I am supposed to be on clomid with the trt every third day but stopped the clomid when I started trt but may bring it back next month after my next talk with Gordon…IMO there is about three different aspects to this shit,HPTA disruption and hormonal drop in all hormones and testosterone…Depletion of nuero steriods in the brain and also some type of down regulation of entire system like a slow down and decrease in androgen receptors through the body…Thats why I think you will probably never see a “cure” for this its to varied and complex but maybe a better type of thearpies later if the exact cause is ever discovered…


#23

I tried lasix just for few weeks…Seem to help…I am bigger now than ever but wanted to share this rid bit if info I got today…just wanted to follow up with that lab report from urologist in 2010 I got today…It only had total testosterone and get this it was 376…7 years ago i was at my peak and very active running daily…Very low so that is natural for me so mine didn’t change much through this whole thing it looks like…So problem not low so much but raising it high really helps so seems to me would have to be processing problem…Receptors, brain who knows but I was expecting a much higher test number from 7 years ago…it was actually lower then than when I had pfs or now…Mystery.

Made it a grand 0.8miles in 10mins this morning…If you look back you will see what a decline I have had in ability to perform physically and my body is pretty much gone at this point…TRT has helped with mental energy and sickness of just being so tired I couldn’t get off the couch but my body just doesn’t seem to be responding…I was running 5k in around 20mins…


#24

Well just posting Gordon told me to take 2 to 8 week vacation from the protocol…I told him the 2nd day after injection was a wreck but by third day was a lot better…its now 5 days without shot and haven’t felt this good in a long time…Last couple months on TRT was highly emotional…Panic attacks…but now good don’t know how long it will last may be about dead in a week IDk…But my baseline is way better now than before I started TRT but I was worsning in some aspects on it if that makes any sense…

Feel even better more normal today…Best I have felt in long time…Quite a change from a few days ago after my last shot…Seems pretty obvious varying degree of the bodies ability to metabolise androgens…I felt better the first few months on trt…Then slowly worse until after the last few shots it was horrible…May feel like death next week who knows but If I could maintain this would be greatfull…

Have done nothing but improve feeling wise since stopping…Still look like shit but feel alot better since stopping and also feel way better than before I started TRT…Before I started I felt like total shit…Before that back before I did anything or started clomid I felt like death…So you are maybe upregulating your body slowly? Don’t know what to do thought about going back to clomid taking a wait and see approach…


#25

This is very interesting thanks for posting this


#26

Well guys since folks have asked I will post new years update here…As I mentioned earlier today I have stopped all protocols… I have only improved more since stopping the TRT…Now Gordon’s TRT protocol and supplements helped a lot but as I said had to stop after 5 months 1st vile of testosterone was used…

In a nut shell some improvement on Clomid and supplements, more on TRT but to a point…The high anxiety and emotions were too much all that is gone now since stopping one month ago…I see no point in it and continuing to buy test which was 510 bucks because of Gordon’s outrageous fees…I would say 5 to 6k investment was put in last year, my first year at attempting treatment after suffering a year and half of doing nothing…I was only getting worse not better before contacting Gordon last Febuary…

NOW having said all that it is 1850 for initial labs and consult…plus another 500 or so for the round of supplements he puts you on…Aon…And the follow up labs every 4 to 5 months are another 5 to 600 dollars…And if you go on TRT as I said you looking at anither 500 bucks every 5 months to get the script…So as u see it’s easily 5k or more year investment but my improvements stop after a point…

So now in light of recent studies which will supposedly be made public later this year, wouldn’t get my hopes up have heard that before…It appears as I suspected that the men with these ling long bouts of severe symptoms both physical, like mine and mental which everyone seems to get, plus sexual are actually a much deeper rooted problem that is not currently understood and certainly not curable by modern science yet…But the symptoms can be eased basically by these different types of band aid approaches that appear to trick the body into metabolising a small percent of androgens that are availbe and some seem to not be able to recover or process anymore reguardless of availability or amount in bloid stream…

I found improvements mainly coming in form of mental energy, skin and slight hair dryness improvment…Physical sides remained unchanged and affecting me very bafly…I still think if suicide but because of my limited physical function and tremoundoues strain this weight puts on your back and bidy…Getting in and outta if a car is bothersome if not tiresome and this is from a former distance runner who also worked 10hr days on construction sites driving an hour or more one way to do it…no problem…that seems like anither lifetime now or another pe rson no longer what is left after the effects of th thus syndrime…Alsi the cosmetic changes were horrendous and could drive a healthy person to suicide due to the dramatic changes to body, weight, hair etc…Grey thinning hair, grey facial and body hair severe dry skin and hair…

So I don’t know what this year will bring or what news but I spent thousands in 2017 to get to this point…better in ways, worse in ways now…Maybe it will at least bring some simple answers to us to ease worried minds…


#27

Small update guys…Since mowing season and active lifestyle is back…Same ol same old shit still smaller in the morning, huge in the evening and after mowing for the first time this week its even worse than before…I have not weighed in months but would guess at night so much fluid and water weight I would guess close to 300lbs…Un-real and little energy not much improvement other than mentally but glad I came off trt…It helped after being on for a few months…Waiting on the new studies which are supposedly being published this year but wouldn’t hold my breath…Also those cussing the foundation online and on FB etc…It’s not really the foundtation’s fault but Baylor really has dragged this out as it’s been finished for awhile and the slowness is on their part analyzing the data etc…But I think it’s real low on their priority list and most don’t realise the severity of the situation we are in…I am also seeing alot more paranoid people here confused if they have PFS or not…Evidently the real PFS condition is more rare than most people think and lots just suffer from mild sides or symptoms while others life is destroyed to the ponit of not even being able to lead a normal existence any longer…If its that bad take my word u will know…And I don’t mean just sexually but mentally and physically I am almost crippled from this shit…

So till next time heres to us who continue to suffer…


#28

Talking about your mind, did you recover 100%? If yes, how long did you take?
Have you ever had troubles sleeping?


#29

Another update since summer is here and back outside at it again…Same ol shit I am fucking huge now! So damn big, fat and fluid is awful…I guess this is permenant as time, routine, protocols nothing affects it…Alien hair, and body now…This shit has basically turned me into a mutant people don’t recgonize me now…I would guess around 100bs or so now gained and waist has went from 31 to around 38…I mean I was a fucking toothpick 160lbs, 6 ft tall, now like a whale…I feel a little better and mind is a lot better but I cannot gauge it or say how much better it is…But obvious you have been damaged beyond belief physically now and is not going back…Stamina and energy is a joke as I was runner…Unreal. Also you know u fucked uo when your hair structure is changed which I am told is epigenetic effect and no one re balds which for sure means your not functioning normally I have yet to see anyone say it went back to as before…


#30

Holyhead what does your doc say about this weight gain and change in hair texture??

Was dexamethasone suppression test ok?


#31

Well as stated here Gordon who is supposedly the best in USA has told me he does not know my labs are perfect now and it is not estrogen it is great he said…Then said it was all symptoms of thyroid issue but once again my test are perfect he said all hormones are normal and it’s up to mother nature if your body goes back or not.

Imo as said before it’s neurological as finasteride starting stopping appears to cause remodeling of androgen receptors in the brain…Altering gene expression and also affects other hormone receptors there are estrogen receptors in the brain that control how and where the body stores fat…

It’s obvious the varied symptoms come from where and how areas of each individuals brain and genes are affected…

I think it’s safe to say already that 5ar inhibitors are dangerous and can cause brain alterations that can be catastrophic in some people it should be removed from sale…


#32

What I am noting now is an improvement in some ways and this began with using organic baking soda which I have poted about here before…Just wanted to update everything else is same or worse except mentally…In the mornings I am much better still than the nights…I am also noticing a more profound muscle weakness along with the fluid and fat…I mean simple tasks like holding your arms out or above your head seems exhaustive to the muscles and also having more problems breathing correctly…


#33

Still suffering like a dog for years now and still no answers other than theories all over the place…Most have come from self experientation…


#34

Hey Holy, out of curiosity what is the fat your have like? Is it hard, soft, lumpy or a mixture? Hows the skin above it, is it stretchy, tight or loose? Has any other parts of your body changed in composition?


#35

It started out as like hard dead rubber and has now changed to like water filled squishy balloon…More and more and is always bigger at night…


#36

Its all changed all over torso even bicep and arm area are huge with this shit now…Like another user here posted pics anything you lay down on leaves imprints in the skin…Deep imprints in areas where this does not normally happen and where there is no body fat like lower arm, wrist, and ankle areas…

Extremely dry hair and thinning hair and dry skin, Huge fat and water increase all over body, body and facial hair turned white and grey…Energy gone and labored breathing at times…Headaches, anxiety etc…


#38

I too have the same types of imprints, and after 10+ years of pfs, never suspected anything, and had it so long, I assumed it was normal. Has anyone seen a dermatologist about this?


#39

Well guys about the same for me except physically I keep getting worse…Up to about 260lbs and no change…Muscles are getting weaker and more and more water around waist has caused me to have bad back injury because the weak muscles and weight are huge factors injuring your back muscles…

Also I am still using baking soda but not TRT or Clomid…I have been off trt a year this month…My symptoms, Huge weight gain, weak twitchy muscles, dry damaged hair, no energy and dry skin…Also almost all my body hair on chest has turned white and on my face as well…Also my armpit hair keeps getting less and less…

Menntally I have improved some and the baking soda helped with that…Physically I could not work on labor postion any longer like I did years before in construction work its almost like you are a fat winded invalid…I could run 5ks in around 21mins before this and look back on my journal here and see the slow decline to this state…Something fundementally is different about our bodies now than before…Just isn’t the same…Most are speculating an epigentic alteration affecting AR or genes controlling AR are methlayted…All hormones are normal or they were last labs I had but the tissue changes to your body are disturbing and scary…Like above poster I get the imprints too even on areas where there is no fat like forearm, thumb and hand areas etc…Also my circulation is terrible or my limbs go numb/sleep at nothing…


#40

Just noticed I started this thread 3 years ago this month and have had this for 3 and half years…Hard to believe some have lived 15 plus years with this dragging yourself one day at a time through this hell trying every substance known to man…Spending thousands of dollars of Drs and labs and someting as simple as baking soda providing as much relief as anything the Drs gave me…

Imagine dragging yourself 100lbs heavier through each day, not recognizing yourself anymore appearing as an entirely different person…So much more prone to injuries, weak…


#41

That’s rough, but I’d rather gain weight and still have my brain. I live in complete derealization and my head is constantly in pain. It’s as if I’m living in a video game constantly observing myself from the outside. I guess everyone’s struggle feels like it’s the worst.