I Stopped Taking Propecia And Feel Like I Shouldn't Be Living Anymore

[ataloss]

I wasn't sure where to put this topic since my issues are really broad, but I felt like I should post here and cross my fingers someone can help me. Basically I'm going to run down my health issues to the letter in hopes someone might have any idea as doctors seem to be at a loss.

About 3 years ago I began suffering from pretty severe acid reflux, which is still ongoing, but during the attempts to treat that issue I also began suffering from occasional joint pain as well as very rapid hair loss. Thinking at the age of 30 it couldn't get any worse, I tried to make peace with what was happening. Unfortunately it seemed like every time I looked in the mirror more hair was gone, so I saw a dermatologist and they put me on Propecia at about 1.25mg a day if my memory serves.

Immediately I noticed I had some kind of foggy thing going on with my brain and some headaches but, that subsided pretty fast. Up to this point I had a really high sex drive which got even more amplified initially. After awhile things felt alright. It wasn't until maybe 6 months in I noticed I was gaining very minor breast fat and overall pretty decent gains in weight, as well as a very difficult time getting an erection or even feeling horny. My energy felt low and I just felt really bad, I spoke to my doctor and she advised me to stop taking the Propecia and go from there.

I stopped taking the medication and i'd say within a few days I was overcome with just a ridiculous feeling of happy, I was extremely sexually active, overjoyed and just felt on top of the world. I was going to work like everything was alright, and I felt I made a brave decision to accept my hair would be destroyed but I would rather be me than to become miserable and have hair. Unfortunately this feeling didn't even last a week, I went from feeling amazing to feeling worse than I ever have. There were times where it got so bad that I wanted to die, I wouldn't say suicide was ever contemplated, just a feeling of hoping I die.

From there on, my libido tanked to nothing, I can basically never get a real erection and when I do it requires constant effort, I have days where I feel alright but low energy mentally, and other days like today where I feel like i'm on the brink of a cliff emotionally, wanting to breakdown and just be done with existing. I get moody, irritable, my hair is rapidly falling out, I can't have sex, i'm still overweight somewhat (190 at 5' 10'', not muscle at all) and in general whenever I look back on how my life was just a few years ago I can't believe how much i've fallen.

I've been browsing lots of forums including this one, i've tried so many supplements and weird things due to it. Berberine, Horny goat weed, magnesium, zinc, tribulus (sp?), caffeine, Vitamin A, Vitamin E, Nico, I just have a medicine cabinet of stuff I have tried over the months i've been off this medication (probably 6 months) and I find nothing helps. I haven't tried a lot of dieting yet because I don't know a safe way to approach that, especially when I don't eat it causes me to reflux even worse.

Right now i'm just at the end of my rope, I can't even make love to my extremely loving girlfriend of a decade, and despite that she has been nothing but understanding. I feel like she's the only thing that has kept me hanging on to life at this point and I really just want to be able to be the person she deserves again instead of this miserable, weak pile of flesh.

I live now to see the good days but knowing the bad days will come, I had a good feeling last weekend and a miserable one this one, there seems to be no pattern, my sleep is also not great anymore.

There is nothing within moral reason I would not do if there is any hope I could fix this issue. I'd do any diet and any exercise regimen, anything. It's just so difficult to do things when you feel this way, I tried to run and exercise but I just feel horrific after the fact. I don't know if I should be running or walking, or weight training, or what.

I haven't been able to get anywhere with my current doctor because she doesn't seem to think this can happen after stopping that medication, I had no idea any of this was even plausible until after this all happened, and I just don't know what to do

While nothing I've read here has helped me so far, I appreciate the effort and knowledge people share to give people like myself some shred of hope, you're all a bunch of wonderful people from what I have read. I apologize if this was too long or not informative enough.

Edit: I will add that my diet has never been particularly good, I don't eat a ton but I don't eat well, I have tried cleaning up my diet but it hasn't really worked, but I don't know what I should be doing outside of avoiding the obvious.

 

[Dhair]

There are some people on hackstasis.com who are making great strides with post finasteride syndrome. It's a closed forum, so you'll have to register.
I have been dealing with PFS for about 3 years now. It ruined my life, but I did have some great experiences with certain things that I experimented with. I just couldn't sustain anything.
Haven't you gotten labs done? If your doctor is being uncooperative, order labs yourself.
Everyone can recover, but you need to have the appropriate tests done before you can make any decisions about treatment. For what it's worth, I don't think there is any one way out of this problem. Everyone takes a different path.
I haven't fixed my problems, but understand that I was probably hit harder than most.
Step 1 should be to get labs done.

 

[ataloss]

There are some people on hackstasis.com who are making great strides with post finasteride syndrome. It's a closed forum, so you'll have to register.
I have been dealing with PFS for about 3 years now. It ruined my life, but I did have some great experiences with certain things that I experimented with. I just couldn't sustain anything.
Haven't you gotten labs done? If your doctor is being uncooperative, order labs yourself.
Everyone can recover, but you need to have the appropriate tests done before you can make any decisions about treatment. For what it's worth, I don't think there is any one way out of this problem. Everyone takes a different path.
I haven't fixed my problems, but understand that I was probably hit harder than most.
Step 1 should be to get labs done.

Hello, thank you for your response. What kind of issues did you have and what have you done to get relief if you don't mind me asking? I'm curious to see how other people pattern versus myself, unfortunately i'm not educated enough to make good guesswork out of it, but maybe someone else could. As for labs, I haven't done any labs since I went off the medication, just right before. I don't really know what labs I need to be asking about, maybe if I did I could put in a request that way..

 

[Dhair]

Hello, thank you for your response. What kind of issues did you have and what have you done to get relief if you don't mind me asking? I'm curious to see how other people pattern versus myself, unfortunately i'm not educated enough to make good guesswork out of it, but maybe someone else could. As for labs, I haven't done any labs since I went off the medication, just right before. I don't really know what labs I need to be asking about, maybe if I did I could put in a request that way..

Most of this is mental for me. When I first crashed, I had racing thoughts and a dramatic change in perception. I thought I was developing multiple sclerosis, schizophrenia, or a brain tumor. No doctors helped me. I don't know how I survived the first couple months. It was only later that I realized it didn't feel like my penis was attached to my body.
I felt so insane that any sexual problems were secondary. After a few months, the anxiety became manageable. It took me a year to get blood tests done because I was pretty sure my brain was permanently damaged. I had very low testosterone. I used tyromix (Idealabs T3/T4 in DMSO) on the testes, and that was the only thing that completely fixed my mental and sexual problems for a week or two. Unfortunately, I completely lost my sensitivity to thyroid, so that stopped working. Pregnenolone helped with a lot of the mental problems, but it had no androgenic effect, so I stopped using it. I tried testosterone for 2 months and didn't notice much, but I don't think I was doing it right, so I'm going to revisit that soon. My baseline really hasn't improved much at all since about 5 months post crash, and sometimes my anxiety is worse than it was then.
As far as labs go, I would request total and free testosterone, DHT, TSH, T3, T4, prolactin, vitamin D, estradiol, lipid panel, CBC. If your insurance or physician deem any of these tests to be "esoteric," you should be able to pay for them yourself. But you need to know what exactly is going on.

 

[ataloss]

Your initial situation sounds so similar to mine. I remember feeling total despair, having to pretend to be who I was. I still have issues with slurred speech at times.

Are those test generally pretty expensive? I have insurance but it doesn't cover anything until I spend 2k. That's assuming they cover it at all. I've never dealt with doctors until these recent years

I feel like I'm 70 at 32 years old.

 

[lampofred]

Has anyone tried high dose aspirin (5-6 grams a day, along with Vit K of course) for PFS?

 

[ataloss]

I have tried taking low dose of Aspirin as someone suggested here but haven't noticed anything different. I tried to sign up for Hackstasis but it also seems to not be working? Is there some kind of payment I have to do? Was hoping to just look around since it was mentioned.

 

[Dobbler]

I have tried taking low dose of Aspirin as someone suggested here but haven't noticed anything different. I tried to sign up for Hackstasis but it also seems to not be working? Is there some kind of payment I have to do? Was hoping to just look around since it was mentioned.

Hackstasis went private after gbolduev threw another hissy fit ... that place is so crazy ... once it was "supplements are bad" now you must have 500 dollars to spend on supps every month ... its just crazy theory and gbolduevs main purpose is to disagree with Ray Peat about everything lol.. its just guessing and crazy theories

 

[ataloss]

Guess that means i'll have to rely on you guys. I had to call into work sick today because I only slept about 2 hours last night, hoping to have one of the better days tomorrow cause I don't want to lose my job

 

[Dhair]

Hackstasis went private after gbolduev threw another hissy fit ... that place is so crazy ... once it was "supplements are bad" now you must have 500 dollars to spend on supps every month ... its just crazy theory and gbolduevs main purpose is to disagree with Ray Peat about everything lol.. its just guessing and crazy theories

I agree with you about gbold and the crazy theories and useless supps, but the fact is that many people there have made significant improvements. If nothing else, it's a very supportive community. If you can think critically, you can determine what's worth trying and what isn't. It's better than the other PFS "communities," which should honestly be shut down permanently. Things can get so horrible with this condition that sometimes it's helpful just to know that there's light at the end of the tunnel, and the forum provides that.

 

[Dhair]

I have tried taking low dose of Aspirin as someone suggested here but haven't noticed anything different. I tried to sign up for Hackstasis but it also seems to not be working? Is there some kind of payment I have to do? Was hoping to just look around since it was mentioned.

You don't have to pay to join. You should be able to just create an account. I'll ask the moderators if there's a problem.

 

[Dobbler]

I agree with you about gbold and the crazy theories and useless supps, but the fact is that many people there have made significant improvements. If nothing else, it's a very supportive community. If you can think critically, you can determine what's worth trying and what isn't. It's better than the other PFS "communities," which should honestly be shut down permanently. Things can get so horrible with this condition that sometimes it's helpful just to know that there's light at the end of the tunnel, and the forum provides that.

I'll agree with you on that. Its definitely better than all other PFS forums. But it's a rough place for someone who has no idea about anything. Im not saying OP is like that. But you really must take everything with grain of salt. If you jump there and take everything in without any question, you can basicly scratch all Ray Peats teachings.
Im sure they have alot of truth in there, but you gotta admit, RP is ALOT more beginnger friendly.
Who is right or wrong, i don't know.

 

[ataloss]

I definitely don't know much, I just follow advice and hope people can check my symptoms and perhaps enlighten me as to what is going on

 

[brix]

You don't have to pay to join. You should be able to just create an account. I'll ask the moderators if there's a problem.

Someone needs to vouch for you to become a member. Message a mod and tell them who is trying to join and they will approve.

 

[mayweatherking]

you're going to want to make your own gelatin with a broth, try a slow cooker with beef oxtail added and a whole chicken added in there with vegetables and water that's filtered like you buy from the store. that's probably the most helpful thing you can do as we seem to have some kind of immune reaction to a lot of food. if you can eat the ray peat diet, just watch danny roddys videos and follow the diet, if you run into problems, you have to circle back and make gelatin a larger part of the diet. no, dont buy the gelatin that comes in the tube or knox gelatin at the store, make it yourself.

you can read more about gelatin here and how it is probably one of the most important foods if you are in bad shape Gelatin, stress, longevity

 

[ataloss]

you're going to want to make your own gelatin with a broth, try a slow cooker with beef oxtail added and a whole chicken added in there with vegetables and water that's filtered like you buy from the store. that's probably the most helpful thing you can do as we seem to have some kind of immune reaction to a lot of food. if you can eat the ray peat diet, just watch danny roddys videos and follow the diet, if you run into problems, you have to circle back and make gelatin a larger part of the diet.

you can read more about gelatin here and how it is probably one of the most important foods if you are in bad shape Gelatin, stress, longevity

Being fairly new here, i've done some reading on a lot of this stuff but, I really haven't been able to piece it together. I have seen a lot of people reference Ray Peat as a diet regimen but, it seems to me there isn't a version for dummies so to speak. As someone who isn't a particularly picky eater, is there a simple way to follow the intent of the diet without it being very complex?

I'd be fine with eating nothing but carrots if it would help me in life, I would be willing to put work in too but my time is limited since my job is.. demanding to say the least, it's taken its own toll on me that i'm trying to cope with as well. Since I do have a lot of issues with acid reflux and such, I always wondered if a specific clean and consistent way of eating could help, but I struggle to find guidance that won't take me a year just to figure out :P

I appreciate all the responses i've gotten so far, I really hope to start paving the road towards being healthier. I did buy Glycine on the suggestion of someone here, was that a mistake?

 

[mayweatherking]

Being fairly new here, i've done some reading on a lot of this stuff but, I really haven't been able to piece it together. I have seen a lot of people reference Ray Peat as a diet regimen but, it seems to me there isn't a version for dummies so to speak. As someone who isn't a particularly picky eater, is there a simple way to follow the intent of the diet without it being very complex?

I'd be fine with eating nothing but carrots if it would help me in life, I would be willing to put work in too but my time is limited since my job is.. demanding to say the least, it's taken its own toll on me that i'm trying to cope with as well. Since I do have a lot of issues with acid reflux and such, I always wondered if a specific clean and consistent way of eating could help, but I struggle to find guidance that won't take me a year just to figure out :P

I appreciate all the responses i've gotten so far, I really hope to start paving the road towards being healthier. I did buy Glycine on the suggestion of someone here, was that a mistake?

this video goes over the diet:


just watch every video in that series, i think it's a 4 part series, but it goes over the diet. if you can eat all the food in the diet and digest it well, you fixed your problem.

but how pfs is, maybe you cant, the gelatin broth gets rid of the allergies or can help if you "crash". glycine you don't need, the broth is high in glycine. a lot of supplements people react negative to with pfs.

 

[Ashoka]

Hey man. I just wanted to say I also suffered from very similar things from what you went through. It’s very hard in the beginning, because it’s a sudden change that you didn’t expect to happen to you. But you have a lot of resources open to you about how to get better, and there’s a lot of stories on this site that have people making significant progress. I would consider getting the calories up if you don’t eat much. I would try mixing some of Ray Peat’s ideas with some more conventional ones. I kind of like that book Ancestral Traditions, which has a Weston A. Price perspective. Also Matt Stone, Paul Jaminet, Chris Masterjohn. I don’t have any great immediate suggestions except try to eat in a ways that seems sane and agrees with you, and incorporate some Ray Peat ideas like liver, oysters, gelatin, and grass-fed milk occasionally. Don’t just eat pure sugar and drink milk and OJ lol.

I believe you’re going to have to be patient though. There’s no point doing everything at once because it will be confusing. Improve your diet and metabolism and give things actual time to sink in and repair, and try enjoy things about your life even if things feel stupid and shitty. Because ultimately your mental pain will lessen, you will still have intimacy with your partner (you may just need some time to calm down), and will find your own way of dealing with this after finding what you think will work for you.

Be easy on yourself because this is not your fault. Don’t panic. You can overcome this. You have the support of your wife who loves you. Just show her you’re going to do everything you can to get better, and that you’ll be a better person because of it because you’re going to understand how your body works. You may even be able to help her one day with what you find.

Also, about the acid reflux symptoms: do you feel like you have trouble taking a belly breath or like there’s a knot in your stomach? That could be a hiatal hernia. I had an issue with acid reflux like that after finasteride. If the issue is just acid reflux, you could try betaine hcl and digestive enzymes with food.