No he had PFS. Stop dismissing people’s experience because they do not fit your false narrative that PFS is some uncurable disease.
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My hormones were normal until fin
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PFS is when people have symptoms despite normal hormone levels. You were a lucky one. You could have had PFS but instead only had hypogonadism, for which a relatively simple treatment was available. Correlation does not imply causation.
Are you serious? He took fina and had the typical side effects, he had PFS no questions about it. And hypogonadism in most cases is caused by steroid abuse.
The irony in all this is that you’re the one who does not have PFS, you took accutane.
What he is trying to say is people who take fin end up getting PFS symptoms but ultimately are able to treat it with TRT if you look into my experience with TRT it did nothing but make me feel like crap. Most of us on this forum don’t respond to any type of hormone treatment and were labeled as hypochondriacs, but there’s somthing seriously wrong with our endocrine systems as opposed to the guys that are responding to hormone treatment. Plus look at other guys on the forum that were already on TRT and notice how after they took Fin none of them respond to their treatments anymore.
I somewhat agree … there is no true diagnosis of pfs. Half the people in here may not hace true pfs. I know many never even get true bloodwork. I do know I had a lot of problems after I stopped fin. I also saw a chronic fatigue specialist. I will say my endocrinologist in Manhattan believed it was fin and he has successfully treated pfs sufferers with hormones. Is there proof? Nope! I have chatted a lot of guys on here over 8 years and an enormous amount have low estrogen issues which ultimately was my problem. Increasing T increased my estrogen and resolved my problem
Yes, in my opinion everyone here should have their hormones tested. If any are off, that may be their problem rather than PFS. It’s sad to think how many people might go for years assuming they have PFS/PAS/PSSD when in fact, had they bothered to do blood tests, they might have discovered they rather have something eminently treatable.
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@Cornwellsb, did you experience anhedonia/emotional blunting before starting TRT? If so, did it resolve upon starting TRT?
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Yes 100% but my estrogen was low teens. That’s all a side effect of low estrogen. Literally almost all of the pfs symptoms listed here are all low estrogen symptoms. My penis was tiny and cold. Horrible ED. My cock didn’t feel real. Night sweats but Iwas sensitive to cold as well. Bright lights killed me. Horrible vision issues. Brain fog … I’m an engineer and it was a nightmare.
Strangely, the normal estrogen test showed as normal but I had a doctor run an ultra sensitive e2 test and it was always low. I’ve written about this many times. My testosterone was technically in the acceptable limit. Most doctors would not give me T. I finally went to an online clinic called Defy medical which will prescribe T if you are under 450
Im curious what your testosterone protocol was? How much were you injecting and how often? We’re you using an anti estrogen? HCG? It took me over a year to get my testosterone correct until I felt good. It’s not a magic pill that works overnight. It was a ton of tests and a ton of changes. My biggest problem was adding in HCG and anti estrogens like aromasin
I have some questions. @Cornwellsb, you wrote previously
Seriously, how bad were things for you if you were that blase about throwing another pill of finasteride down your neck again? From my perspective, that is an insane thing to do. I only took 1 mg total of the drug and developed extreme symptoms in PFS.
You wrote
which doesn’t sound untypical of PFS. Of course, one of the unknowns of the syndrome is why some use a tiny amount and experience the “crash”, immediately developing a severe phenotype thereafter while others can use the drug for years, apparently without ill-effect, only to then eventually develop symptoms. Did you experience a crash or was it a frog-boiling-in-the-water-slowly type scenario? Considering what you wrote here
do you think long term use of finasteride caused damage to your endocrine system, perhaps in a different way to typical PFS patients here? The reason I ask is because, from my extensive reading of the forum, many PFS patients over the years tried TRT in various forms, most to no avail. I believe it’s cited in some of the PFS literature and case studies too (don’t have the citations to hand currently). You’ve written things like
Which is in stark contrast to the reports of PFS patients when trying TRT, some here for example
There’s also @AaronF in this thread
and there are of course others. You also wrote of proviron
which doesn’t sound like the experience of a lot of the members here who have tried that, at varying doses. Anyway, hope it doesn’t feel like an interrogation, you of course don’t have to answer, just some questions I have on your experiences.
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I know a lot of guys don’t immediately respond to typical hormonal treatments. I’m in that boat.
But I’ve seen people who tried TRT, hcg mono therapy,… and didn’t recover immediately but some did recover when they tried it again or cycled these regimens.
You are making your own point. Did you take the pfs test and did it come back positive? Oh wait there is no test. How do you know that those who are responding to testosterone are true PFS sufferers and you hace a strange virus? I don’t believe that but I’m making the same point you are. I had all the pfs symptoms everyone else did but I don’t know what the hell it was. I’ve been on this board for probably 8 years. I saw probably 8 different doctors, sleep doctors, allergists, various endocrinologists. I have a drawer of 1000 supplements. I eventually went to a famous chronic fatigue specialist in nyc dr Susan Levin who put me on antivirals but this was also the doctor who noticed my odd hormone levels. She referred me to an endocrinologist who specializes in weird cases who I see from time to time. There was a 6 month wait for him so in that time I got fed up and joined a mail order testosterone and from that moment I’ve been working with my endo to refine my testosterone. It took over a year to feel normal so anyone that injects testosterone for 3 months and says they didn’t feel good really didn’t use it correctly as it takes time to dial it in. I’m not going to sit here and argue wether you have pfs or I have pfs or anyone has pfs on this site because there is no test for pfs. I just know this all started in my 30s which is unusual and my issues were more estrogen related than testosterone which is also very unusual. My cfs doctor theorized my low estrogen messed up my immune system but who knows. I’m back to normal now. I personally believe everyone should give testosterone injections a try and not just come here and read everyone else’s experiences. I’ve since stopped Proviron as it swings my hormones too much. I have a day or 2 of great feeling but I seem to swing the other way after. The only thing I rarely inject is HCG and only to keep my balls healthy and only about 1 or 2 months intervals but it makes me very warm for a few days which is probably a spike in estrogen
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I wonder, who really has done NOTHING hormonal over the years, and how have they progressed?
No, you’re not. You’ve reacted in a quarrelsome, offended manner to a post which in large part was just quoting your own words back to you and asked a few questions. I asked you, given your positive response to TRT, if
I also asked you
I didn’t say you don’t have PFS. I’m quite reticent to say that to anyone on this forum, given the disbelief many of us have encountered when explaining what has happened to us. However, when it comes to those who state they’ve recovered, particularly when they then seek to proselytise others to what they say led to their recovery, instructively (as you’ve done in posts which I then had to delete), their cases do warrant more scrutiny. And, in scrutinising the things you’ve written here, I think one can be forgiven for finding some of your story somewhat puzzling. You describe symptoms which are thoroughly unpleasant but you also state things like
Those last two posts were made in January 2019. If you’ve been on this board for 8 years, why would posts made then be the deciders in not taking finasteride again when the whole forum has been full of despairing posts since its inception, much further back than 8 years? And again, can you explain how you would ever countenance even thinking of using finasteride again when you were confident it had caused the terrible symptoms you described? I’d fight until the skin was stripped from my knuckles before I’d let another pill of that poison down my neck and I imagine that’s the case for everyone else here too.
Im not angry haha … I just pointed out that there is no test for PFS … we are all linking taking a pill (or stopping) to issues that occur around that time
I do think long term fin caused my issues. Most fit people don’t have testosterone or estrogen issues in their 30s. My symptoms were quite similar to everyone else’s here and my theory is it’s estrogen related as fixing my estrogen fixed me. I’m not so sure I’m that atypical as I have had a bunch of people with similar estrogen experiences. I do know after crashing my estrogen on pills that low estrogen symptoms are SPOT ON scary similar for PFS symptoms. Go to any trt forum and read people’s experiences after the screw up their estrogen. It sounds like this forum. I also did not crash but I went down hill super fast in months. Could it have been something in my food? Sure could have.
“how bad were things for you if you were that blase about throwing another pill of finasteride down your neck again?”
I have a great endocrinologist who believes in PFS but also thinks that various forms of trt are the answer. This is his belief and I know trt does not fix everyone but I’m always curious what protocol people were on before they claim that trt did not work. My DR doesn’t always use testosterone and starts younger patients on other things like clomid or HCG only. I absolutely did think about taking fin again as trt fixed me and his belief is that I now have nothing to worry about. I wrote that statement during a hair transplant and seriously considered taking it as it is really beneficial during the healing process. I opted to not risk it but I was bored in a hotel and came back to this site around that time. I felt great at the time of writing that. It’s quite possible I’m now immune to the bad effects of fin but who knows …
“Did you experience a crash or was it a frog-boiling-in-the-water-slowly type scenario?”
No crash that I remember but I didn’t know was PFS was and my life spun out of control fairly quickly. I visited a doctor way before I knew what PFS was because I felt strange and sick. Bright lights were problems. I went from being able to sleep until 2 in the afternoon if I wanted to not sleeping at all. Brain fog … I had a few sleep studies, saw 2 endos, allergists. I spent a long time seeing doctors. I don’t know how I stumbled onto PFS and I literally thought I had some weird disease from mold or rodents (I live in nyc and thought maybe a rat gave me something) my allergist recommended a famous CFS doctor and that began a year of more crazy testing, blood infusions and antivirals. I also started PreP around this time and also wrote somewhere in here how it made me feel better. The CFS specialist added in 2 more antivirals but I never really got much better. I knew about PFS by this point and that was my theory but I also had 1 million tests and I had elevated markers of CMV, Epstein Barr and some hhv6, all of these are common in all humans. (This is why I received antivirals but they didn’t do much except the PreP). I had mono when I was a child (which is EB.) They theorized it somehow reactivated. Cmv almost everyone has.
Testosterone had dropped rapidly from maybe 600 to 340ish (don’t remember exact numbers) in maybe 2 to 3 years but before fin it was ok and after fin I had a 40-50% drop. I didn’t have hormones tested every year so I only had a baseline from a few years earlier but it’s clear that this all happened at the same time as quitting fin. (Months … Less than a year)
Eventually the cfs Dr noted issues with estrogen after running a test and referred me to an endo doctor who had a long waiting list. I didn’t wait and said screw it and immediately joined a mail order online clinic for legal hormones which accepts 340 t as low and started injecting. I started visiting the new endo roughly 4 months later who basically just gives me advice and let’s me let’s me adjust my T to how I feel. The whole trt process took years to get correct and I’m still tweaking it. It wasn’t a magic pill. I learned the hard way that AIs make me worse and HCG causes me issues.
Now after all this, being on trt has fixed irregularities in my blood with viruses and I feel great except I still take some cialis and I still take sleeping pills but I think that’s just because I’ve been on them for years. Was that PFS??? I don’t know. Did having my endocrine system screwed up mess up my immune system or did my immune system mess up my endocrine system. All I know is I had classic PFS symptoms. Most doctors told me my hormones were ok but running ultra sensitive estrogen tests spotted a problem. I believe the fin screwed something up and sent me spiraling down a hole as it all happened at the same time but I have no proof. For all we know, everyone here has a crewed up immune system and suffering from the same viral overload I had or I had some issue that just randomly occurred around the same time I quit fin. I seriously doubt most here have even run these tests and I’m fortunate that I had great insurance and the means to spend a lot of money testing my way through this which sadly is difficult for some.
Thanks for the detailed reply @Cornwellsb.
Just on this part, that’s a very misguided position your Dr has taken and could put PFS patients at risk. If you see him again, please let him know that, though he may have seen some success in treating some patients with hormonal therapies, there is currently no known cure for PFS and re-exposure to the drug has resulted in catastrophic consequences for a number of PFS patients. Under no circumstances should anybody who’s had a notably bad reaction to fin, or persistent symptoms from its use, re-expose themselves to it.
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go do some reading. you’re very wrong
i’ve been here a very, very long time… check this out http://raypeat.com/articles/aging/aging-estrogen-progesterone.shtml but feel free to educate me… i can see how having ‘some estrogen’ is OK, like it can’t be at zero, but i don’t think supplementing estrogen is OK, i don’t think you should artificially get rid of estrogen if that is what you are saying
dude ray peat is a literal meme
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