Never took fin I took a shampoo called Regenepure DR which contains both saw palmetto and ketokonzale which are both 5AR inhibitors, I used it for 3 years I noticed I became very tired and had fatigue during year 2 of usage, libido was still great so I never linked it to the shampoo and continued use and crashed very hard the 3rd year biggest mistake of my life, my case is really rare but none the less I share all the same sides as someone who crashed on fin, your sides are identical to mine!
What are the things you are struggling with most now? How did your bloodwork look?
Thank you for this. I have to order these as soon as possible. I would right now but I am in the process of moving. Are there particular brands or qualities I should be on the lookout for?
i buy from bulk supplement because they’re 5 times cheaper and I make my own capsules, but you can also mix Betaine HCL and Choline Bi-Tartratw, half of a quater tsp of each in water. It’s sour…
Otherwise Choline will come with Inusitol as people use both for liver function.
I prefer them separate. Choline is a minor stimulant while taking Inusitol (4 gr) before bedtime helps for sleep.
Amazon offer plenty of choice.
I’ve started the DPT program, and I am progressively getting worse. My skin continues to change in texture and get softer. I am holding subcutaneous fluid all over, and my muscle wastage continues. I’m booked to see an endocrinologist mid-June. Until then, I’m doing a small juice feast and then implementing paleo diet with hormone-balancing herbs. I am getting worse in all aspects.
Constant cognitive change
progressive muscle wastage and weakness
feminine skin changes
altered appearance of veins under the skin, skin is more grayish now
constant cramping and trembling of muscles
exercise intolerance, when I workout, my symptoms get worse
constant stinging in nipples, slight enlargement of nipples and altered appearance
Often bouts of intense depression, crying episodes.
I don’t want to post more negative shit on this forum but I feel as though I need to accurately update my post. I’m in a bad place.
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I tried Betaine HCL to lower my estrogen levels and I believe I’ve had a severe reaction to it. The past 3 days, I felt like I was in a movie, totally outside myself. My gut biome was severely damaged when I took the pill, as I’ve had horrific-smelling, often gas for many months. After taking the supplement, It seems to have completely disturbed my entire system. To @Ozeph, you told me to proceed with caution and I believed I did; it was unforeseeable. Please note during this time I was also trying CDnuts’ protocol with juice feasting in the mornings. The juice was composed of cucumber, celery stalks, red grapes, strawberries, mixed lettuce greens (in the plastic container), and green apples. I am not sure which caused the reaction. I do know that I aggravated a very unstable system, and it is very apparent to me that the condition I have is not reversible. I have put on rapid amounts of pale, fluid-fat like @holyhead describes. I’ve put it on in a layer around my entire body, when I squeeze it together it crunches. I’ve had a total endocrine shutdown. It is especially apparent on the underside of my arms and lower abdomen. I have searched and tried to find the glimmer of hope, that some men with these symptoms do recover, but there are none documented. I believe this will be one of my last posts here, as I will not move forward and live like this. From observing the site, I believe I am a relatively rare case of PFS, as I took a single 1mg pill and within 7 months I have gone from a “spacey feeling” and ball ache, inability to focus eyes or read print, architectural changes in penile tissue, generalized weakness across entire body, and total lack of motivation or caring, to a complete cognitive shift, constant muscle twitches and wasting, aromatization of the entire body, complete intolerance to cold, gynocomastia, completely lost cognitively, and gaining fluid at a rapid rate. I think it is important to note that the slight muscle twitches seem to go along with the fluid accumulation, as the past week I’ve had steady, weak muscle twitches in the backs of my arms where the fluid is accumulating. I’ve also had a steady, weak pulsating twitch in my abdominis for about 3 days; this was from walking up an incline hill and I felt it pull slightly. My muscles have completely wasted. I hope that any other inquiries about my condition can be found among my posts.
It is incredible that just a 1mg pill has ruined my life. I am so sorry this has happened to all of you, but I am not as strong. I cannot move forward and live my life like this, as just 7 months ago I had an incredible physique, a new job pending acceptance into any PT school of my choosing, and a fully functioning mind - a beautiful mind. I’ve always prided myself on it. I am so heartbroken and destroyed and I’ve asked God for help for the past 7 months with no answer. It’s possible I’ve done things in my life that have led me to this damnation, being obsessive, neurotic, I have no idea. But I have went and destroyed my fucking life. My adolescent and adult dream was being a Doctor of Physical Therapy, to understand the body, assist those with theirs, and maintain a good quality of life for a number of years. I am finally here but so destroyed. It is very apparent to the faculty and students that I am not present, and I cannot continue. I was a hard worker, I clawed my way from government housing throughout high school and into University. I grew up with nothing but a loving Grandfather, who I miss dearly, and who was the best man I’ve ever known. He would be ashamed of what I’ve become. I hope that when I see him, he’ll understand. I have ruined my life by taking this fucking poison and I hope this community continues to grow, thrive, and spread awareness so that men won’t risk losing absolutely everything for something that doesn’t even matter. I am so thankful for @Mcbbould, @cement, and @teddy25 and their support through this. Some of the best guys I’ve ever talked to. Please continue to spread the word about this horrific disease. It is unbelievable that this pill is still being distributed.
I hope you do find a cure.
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Please don’t give up man. You’re 4 days in for now if I see it right. You sounded so full of hope not long ago. I did a 3day waterfast precrash a year ago and I went from healthylooking to totally fucked up and sicklish within 3 days. And it took me almost 2 weeks to get into the same outside look I had pre-fast. And this was while I was healthy af man! I felt the benefits earlier on my gutbiome tho since it was the first time I stopped craving shit(but this was combined with almost a FULL month of IF/OMAD). The 2nd fast 7months later suddenly made me look better and energetic, cuz most of the shit has been filtered out by the first and it took a lot of recovery. It will be an ugly process, but you knew that man! And don’t take fkin Betaine, most of the sides are similar to PFS-symptoms, too high cholesterol, intestines burn, exaggerated histamine raise. Only microdose if reallyy needed :/.
You’ve fought so long, please keep doing it man, keep trying Knighten!
I feel the same of my grandfather. He was selfless, intelligent and kind and I admired him. He was a close friend. He would have been absolutely heartbroken by what has happened to me. What I do know is he would only be ashamed if I didn’t do my best, and do the right thing. I know he would be proud of how I am trying and what I practically do. I don’t presume to know, but perhaps that’s true for you. This is not, by any interpretation, your fault.
Before I rebuilt this site, set up our projects and spent every day working towards help for us all, I had decided the same as you. Most people posting here are simply not in our condition as you know. Far from finding “horror stories” and worrying about it, it took me considerable time to find cases of a comparable severity.
I am sorry these therapeutic ideas have been at best useless - it was the same for me. But I need to make it clear to you that if severe cases give up, the evidence that resides within us goes with us. Our clinical reality goes with us. The full scope and possible extent of this problem then becomes misrepresented, and the progress we all need is at risk. Which means other lives, loves, dreams remain at risk.
We all need you, @Dknighten - everyone, whether the guys with just ed or something know it or not. I can only plead with you to find a strength to put one foot in front of another, as I have to. This isn’t something that can be left to others and what has happened to you should not be ignored. To find a cure you speak of, we need you too.
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Hi @Dknighten
Looks like you’re at the bottom. I almost killed myself some 25 years ago and I discovered that if I was ready to die, I was invulnerable: I could try anything and I could always kill myself anytime I wished.
I really feel for you man. I don’t know how many times the same ideas have crossed my mind after I crashed. I really though it would be better if I would end it. I also prayed for God to give me an answer and he did. But God’s answer don’t come as a voice in your head telling you what to do, it comes as coincidences.
As I posted elsewhere: " … And by a series of coincidence, I had a friend that told me you can heal anything with diet. He didn’t tell what to eat though. Then I watched a video of someone curing his complete insomnia, anxiety and depression by going on a carnivore diet. For some reason, I didn’t connect to the idea. The next day, another friend told me about the same guy and how amazing he recovered just by changing this diet. I was intrigued. To topple that, when i came home, late that night, the only thing I had in the fridge was a whole chicken breast I cooked the day before. I microwaved it and that’s all I had that evening for dinner.
I didn’t know at the time, but that was the first day of a carnivore / ketogenic diet that lasted more than 10 months now. Three days later the headaches, the stomach ache and gastric reflux stopped, along with most of the neurological symptoms. The sexual symptoms took longer to dissipate. A few month in the diet, my sperm became thick again, my balls were hurting less, sex drive was slowly getting back.
At this point, I am mostly symptom free; I’m not cured ! If I quite the diet I’m back on the boat, but I honestly think if I keep at it long enough, I will be cured. I’m expecting this to happen within one to four years. (I’m an optimistic)
Meanwhile the diet has done wonder to my body and I feel more in shape than I have been for decades.
So that’s the diet story."
I tried juicing and paleo with no results.
Why don’t you give this diet a chance: Rib eye steaks with salt only, lots of animal saturated fat (Ghee, butter, lard, tallow, up to 200 gr a day). You can also eat two of the following, spinach 200 gr a day, half a cucumbers, a dozen leaves of romaine lettuce or a zucchinis. You can only drink water. This solved 80% of all my symptoms.
Looks to me like you have nothing to lose ! Try it for a week !
If you feel better, contact me, I will tell you some extra food items you can eat.
Saturated fat is the prime ingredients for hormones. The brain works better on it. The extra proteins and saturated fat enables your body to fix itself. But especially, NOT eating carbs really helps people with pfs.
The flame is still burning. If you give it a chance, it can turn into a raging fire. This experience and all you went through before can make you unstoppable. You can achieve more than you dreamed for !
You do what you want and I’m so sorry you’re at that cross road. But I’m telling you: great men have been forged out of pain and misery. And as you have a sharp mind to begin with, I think you have all the ingredients to be one of those men we read about in books ! Give it a try ! What do you have to lose ?
Or send God your best prayers and look for coincidences that can lead you to solutions !
You have my best thoughts.
Ozeph
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Hi,
I hope you’re okay… I just wanted to say you’re not alone, I’m in a similar place to you right now after discontinuing an antidepressant 7 months ago. Similar symptoms, muscle and tissue wasting, loss of muscle control, problems with executive cognitive function and concentration, skin & vision changes etc. I’m also acutely suicidal. Used to be pretty intelligent too and funny, creative etc. I understand its so insanely difficult to process this loss but you don’t know what you can recover in time. There is a chance some or all of this could improve. You’re still managing to study, even if you’re struggling, just try to put one foot in front of the other and try to get through it for now. NONE of this is your fault. I know its difficult and I’m doing the same, obsessing over how the f**** this can happen and where I went wrong, everyone is guilty of obsessions and neuroses to some extent, everyone makes mistakes. Trusting a doctor shouldn’t fall into that category! It sounds like you’ve achieved a lot in your life under difficult circumstances and your Grandfather would not be ashamed of you seeking medical help and being just incredibly, incredibly unlucky. I’m sure he would be proud of everything you’ve achieved & the way you’re handling such difficult circumstances. You are young - even if it takes years for you to improve, its still a win if and when it happens. Somebody could find a cure or a means of symptomatic relief tomorrow. It sounds like you had a recent destabilisation with the betaine and I get how disappointing it is when something you’re expecting to help does the opposite. Its not forever though and it will get better! & yes it sucks that you’re going through this after just one pill. Its incredibly unfair and I hate the fact that this has happened to anyone. Think about what you do have - you still have higher order cognitive function left intact & an opportunity to complete your degree, as well as your young age and the hope for a future cure. There must be something left that you enjoy - music, food, time with family? You could stick around and help to spread awareness so nobody else has to go through this in the future.Things could easily get better. You’ll never know if you check out now.
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Dude. Betaine hcl is a methyl donor. U should avoid those at all cost. I have pssd, took betaine hcl 4 weeks ago and i crashed so fucking hard. I am still not back to prior pssd baseline after a month. People on the forum here say it may take 5 months to feel a bit normal after a methyl donor, if it makes u crash. U respond so badly to a methyl donor because ur genes are probably silenced because of the shit u took. A methyl donor contributes to this and u crash hard. Check out this thread: A warning about SAMe, methylcobalamin, and high-dose B vitamins
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I wasn’t aware of the methyl donor issue. According to a search, cauliflower, flax seeds eggs, and spinach are methyl donors also?? I don’t understand. Do I just eat grass all day
Methyl donors in food is different, u can handle it i think. I do avoid eggs. After raw eggs i feel shitty too. But nothing compared to a betaine crash. Taking a supplement is a different story. How are u doing now since the betaine?
My mental state seems to have stabilized somewhat, my body is completely fucked though. Complete rubbery skin, total changes in skin texture, nipples, my nipples burn constantly and are somewhat deformed. Rubbery, flabby skin that you can take and pull and push together. Extreme sensitivity to cold. Chronic, steady twitch in abdominal muscles for almost 2 weeks now, small little lumps underneath the skin you can see in the backs of my arms, you can feel almost a crunching when you push the skin together. Even at rest, my muscles in my shoulders, arms will steadily tremble. I can do about 5 pushups and be sore within a few hours and it hurts to bend the joints. Very poor bloodflow to limbs, It is completely bizarre. I also have burning/tingling across my entire skin, usually around the insides of my arms and my back. Complete change in texture of armpit and pubic hair. Had my bloodwork come in and
Estrone is 92 (15-65 pg/nL)
Estradiol is 12.7 (7.6 - 42.6)
SHBG is 120 (16.5 - 55.9)
Total Test is 540 now,
Free test is like 7.8 (below normal range).
High morning cortisol too.
I saw the endocrinologist, she had 4 options:
- try amridex/tamoxifen 10mg per day
- Clomid, 25mg per day
- watchful waiting and do nothing but try and live healthy
- see holistic MD near the area
Gordon put me on clomid 50mg every other day…Idk…I wouldn’t try the arimdex estrogen inhibitors have had devastating results for some…Not our problem anyway imo these physical symptoms seem to arise with this condition with hormones that are normal or no pattern to their embalance…
Don’t try armidex especially with the sides you already have. That stuff is no joke I was getting shooting pain in my bones with just .25mg twice a week.
I personally never tried clomid only hcg and trt which had no effect on me. Clomid might be worth a try if she’s willing to work with you.
Did the doctor also believe what happened to you on Finasteride?
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What would Clomid do to my elevated Estrogen?
Hell no she thought it was absolutely ridiculous…Until I pulled up the Baylor study on my phone. She did her residency at Baylor and got very interested. Then I showed her PFSfoundation website. Then I showed her the 1 minute video from John Crisler. She was in disbelief and didn’t know what to believe honestly. I told her that there is a small community of men who have had their lives absolutely ruined by this shit, there’s cases of less than a pill doing it. She agreed it was very abnormal for my hormones to be this way at my age and I showed her my stretchy rubbery skin, loss of muscle and she gave me those 4 options
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in that case never mind then might make you even worse if your estrogen is high. So clomid most likely isn’t an option.
What would the holistic doctor do if you went to one of them? Sounds like a waste of money I heard they are expensive.
These are my most recent labs. Is there fucking anything I can do besides hope
and I’m not sure about the holistic doctor. Probably look at my adrenals, thyroid, digestive health