Right, update:
It’s day 21 since I quit the full pill, though I did taper off a little after that (day 11 since my last 1/16). I have basically no libido, and apart from one vivid wet dream I have not masturbated to fruition (though I also haven’t tried, based on what I’ve read here). I went on cialis for a day to see and had a normal erection in the morning, without any sensitivity - but I’ve generally had some sort of erections in the morning (I’ve noticed them more post-fin than pre!). My penile sensitivity is very low, and it’s difficult to compare it over time (especially since touching it more than once tends to make it slightly more sensitive anyway). I’ve started to feel testicular discomfort again.
Last time I checked (4 days after quitting) my testosterone, prolactin, estradiol, FSH, LSH, TSH and vitamin D were all quite normal. FSH and LH slightly higher end of normal, vitamin D slightly lower end perhaps - but not towards the extremes. I haven’t noticed any changes since then and all other basic hormonal responses seem to be the same as usual, so I suspect I’m one of the many cases with mostly normal hormone profiles that doesn’t really change. My DHT is to be tested, and I’m getting a test with Rhein Labs this weekend.
I have seen a GP (Parvaz), a urologist (Dr Dana Ohl, who said he’s seen two cases who didn’t follow up) and two urological assistants (one of whom saw one case she didn’t follow up), Dr Crisler, and sent emails to all the PFS doctors listed on this site.
Dr Goldstein is very negative about all of our outlooks, but mentioned clomid if my DHT . I also contacted some hair transplant surgeons on their committee to . The chair of this committee (Ed Epstein) was contacted by one person with PFS 5 years ago, and he was debating the studies, how widely spread the side effects are, etc. etc. As expected, I suppose. Dr Bernstein of Bernstein Medical, also on the committee, and who recommended propecia to me, phoned me independently and seemed genuinely concerned and confused. He said that he has had around 500 patients with side effects, that around 5% of patients have them, tries hard to follow up (I believe him to a degree) and that maybe 6 might have been PFS cases, but almost all who contacted him again recovered, though it ‘usually takes several weeks or even a couple of months’. Dr Goldstein dismissed this, saying that he gets a biased sample since no-one would want to contact their dermatologist again (which I think one should at least to help others!). I am going to speak to as many dermatologists as possible about my experiences while working on recovery separately.
Looking down the members list here to find people who join within a month after quitting and then stay for a long while after, it seems it really might be a coin toss for natural recovery, so these numbers don’t add up. I believe that Goldstein and Bernstein are extremely competent and honest, but at a guess Goldstein’s sample is heavily weighted to serious, later side effects and Bernstein’s to those who still care about hair loss and can stand to talk to the doctor who prescribed it, thus the ones early on, with perhaps milder side effects… The truth may be somewhere in the middle. I keep being reassured most go away, but looking at the numbers online on side effect databases, even allowing generously for the factor that people with longer and serious sides will have more time and inclination to post about it, this seems very very much like. There are around 2000 cases actually registering on this forum, which can only be a fraction of PFS sufferers - if it’s a few percent of say 1,000,000 users that get these sides at all, it looks like a very large proportion with sides keep them. And it’s week 3 now.
Other thoughts on my own condition: I have no mental side effects - my mind is crisp, I’ve had anxiety attacks and trouble sleeping but only as a result of my condition, I’m fairly sure it’s not inherently neurological. To be honest I was more depressed BEFORE this happened, and since I almost feel I have a new purpose now. I had mild (situational) depression for two years before this, but usually I had a positive bounce to my mind. That’s still in force. I was worried increased urination, gynecomastia and shrinkage, but that was definitely just due to heightened awareness - I have none of these (yet). Of course testicles are oblate, keep moving around and ‘hiding’ in the scrotum, so it’s sometimes difficult to tell what size they are!
I am dieting, working out, and have the world’s most awesome girlfriend - who I’ve spoken to about this fully and who has done nothing but encourage me, help (she’s an expert on nutritional science), and understand. She’s… different! She’s also moving in nearby, which is what I’ve been waiting for, so I want to focus on our relationship instead of this ordeal and stay positive, because I have so many things to be thankful for in life. I’ve now learnt to appreciate that.
I’m the sort of person who cannot be comforted without backup reasons, and my philosophy is that with working out, dieting, careful thinking about treatment and experts, a positive attitude, focusing on work and other things I enjoy, and helping this cause in general, I may be able to recover. It seems that working out and dieting are the main things behind most recoveries here. I would even be ecstatic with most-way improvement!
