Story by Akshdeep
Syndrome since 2019
I first began losing my hair when I was 16. Like most people at that age would I freaked out. I went to my family doctor and the first thing he recommended was finasteride. He described it as a pill that would pretty much halt my hair loss and that he had personally been on the drug for years. I had done some research prior to coming to the doctor so I knew that finasteride was not recommended for people under the age of 18 as it is a hormone blocker.
I told him my concerns regarding finasteride, and he responds by telling me to not read on the internet and that those people with issues stemming from finasteride were just being overly paranoid. He told me it’s fine for people under the age of 18 but I didn’t feel comfortable, so I asked for a referral to a dermatologist. I still remember him being somewhat irritated at my hesitation to not take finasteride.
After I turned 18, I decided to go back to the dermatologist and got a prescription for finasteride since my hair was still falling out at a pretty fast rate. The first 9 months of finasteride usage were fine I didn’t notice any side effects and my hair loss had slowed down tremendously.
Around the 1-year mark I noticed I was sleeping a lot and I was always tired. I was also dealing with some brain fog which was affecting my summer courses at university. I also had some physical changes which I did not recognize at the time but in retrospect it was obvious what was happening. Around the 2-year mark of being on finasteride I decided to get a referral to an endocrinologist to see if my hormones could be the issue.
After a long wait I finally got an appointment with the endo in spring of 2017 almost 3 years after I began using finasteride. He had me try clomid/HCG/TRT and told me how the finasteride probably caused these issues. He told me I could stay on the finasteride if I wanted to keep my hair. I ended up on HRT which made me feel like a brand-new person and it showed me just how much of an impact hormones can have. I felt amazing from that point forward. I even started to use dutasteride once a week on top of the finasteride because the HRT increased my DHT and caused my hair loss to ramp back up.
I felt invincible from that point forward and my hair loss was greatly slowed. In March 2019 I got a little lazy with re-filling my finasteride prescription which caused me to basically quit finasteride cold turkey and that was when I had my initial “crash” as they call it. Many PFS patients crash after quitting the drug which is what happened with me. I had a 1-week period of hyper androgenicity where I had insanely high libido, great mood, increased muscle, and increased hair loss. I remember playing basketball during that period and I was more athletic than I had ever been in my entire life. My brain was also very sharp during this time and I felt amazing. After 1 week of this I had a crash and all of a sudden, I was hit with the full laundry list of PFS symptoms including: insomnia, erectile dysfunction, fatigue, brain fog, muscle wastage, cold hands/feet, changing of fat deposits, depression, flattened emotions etc. Mind you I had not stopped taking the dutasteride as I was still using that once a week.
The post finasteride crash in March 2019 was bad but life was still liveable at that point. I still had some response to hormones and drugs/alcohol still worked for me (although I had to drink more than before). Over the months I noticed myself deteriorating mentally/physically. In summer of 2019 I remember wondering what was going on with me and being so confused. I eventually decided to give finasteride another try since I figured that was the only difference in my lifestyle. Shockingly going back on the finasteride worked and as soon as I took it, I noticed a scalp tingle, my muscles got pumped up and my mood was better.
I noticed though that although the finasteride would give me symptom relief, I was nowhere close to the person I was before the initial crash. I cycled the finasteride for a few months because I noticed its positive effects would die down a bit after a week or so. The finasteride was helping temporarily for some relief, but I knew it wasn’t the cure. In fall of 2019 I got desperate so I tried to see if this was a hormonal issue and experimented with a high dose of testosterone to see if it would do anything. I didn’t feel all that much from the increased hormones. I gave that up after a couple months.
By December 2019 I knew this was something serious as my condition continued to deteriorate. I could barely even work out at this point as my joints would start to hurt if I lifted weights. I was also barely able to get out of bed and my brain fog was so extreme I was only able to finish 1 of my university courses. I ended up dropping the rest of my courses. I had also stopped going to work in September of 2019 and stopped driving in November 2019.
In January 2020 I finally accepted it was post finasteride syndrome and I stopped my cycling of finasteride and I finally stopped my dutasteride usage (which I had still been using even through my initial crash in March 2019). This is where the nightmare truly begins. I had my dutasteride crash in March 2020 (I’m assuming due to the longer half-life the crash from dutasteride takes longer to occur after cessation of the drug). This crash was far worse than the PFS crash a year earlier. I basically had insane fully body muscle twitches for weeks this time. It felt like a switch inside my body had been flipped and my body was killing off its muscles. Very scary stuff. I also stopped getting deep sleep at this point and the HRT (HCG/TRT) completely stopped working for me. The brain fog/depression also became far more extreme this time. It felt like my brain’s capacity dropped 80%. Before this experience with PFS I had never really experience true depression or mental health problems, so this was like torture.
My full list of symptoms is so long. I basically ended up with 95% of all possible symptoms. I even ended up with facial demasculinzation which is a rare symptom most won’t have to deal with. To most PFS is just a sexual problem. People don’t understand how debilitating the neurological/mental/physical sides can be. Since my dutasteride crash in March 2020 I tried lots of different treatments. I had a temporary one-week recovery by using DHEA/pregnenolone and T3 (thyroid hormone). All symptoms improved and I was back to normal for a week and then sadly the regimen stopped working. This is a common theme with PFS patients where we will temporarily recover with certain substances, but it never lasts.
I also tried GHB (Gamma-hydroxybutyrate) which some PFS people have had success with in the past. I used 7.5ML to sleep for 3-4 hours and then I would wake up and re-dose again with 7.5ML and sleep another 3-4 hours. This is a very high dose normal people only use like 2.5ML from what I read. My brain is not normal though since I don’t respond to drugs/coffee/stimulants like Adderall or modafinil like normal people. Anyways this GHB trial worked for about a week and then the positive effects wore off. I kept at it for another couple of weeks, but I knew this was just temporary like the pregnenolone/DHEA/T3 experiment I tried earlier.
I’m now 24 years old and it’s been almost 2 full years since this nightmare began in March 2019. Not a day goes by where I don’t wish I could go back in time. My life was great just 2 short years ago. PFS has taken so much from my life. Every single day is a struggle. There’s nowhere to turn we are just left behind by most of the medical community. PFS is growing with the increase in internet prescriptions from places like Hims. I hope one day we can have some sort of treatment. Living the rest of my life like this is a very tough pill to swallow. I just want my life back. There are thousands of people like me on forums such as Propecia Help. All we want is some sort of treatment. We all just want to back to our normal lives and put this nightmare behind us.