Hi @Rb26dett - I think your case is important and I would like to discuss it further with you in pm if you would be willing. Could you please tell me how well documented your situation is in your medical records by the clinicians you have seen, in terms of the symptoms you’re experiencing? Thank you.
Hi @axolotl, I have the feeling that doctors don’t take me seriously. Almost as if I were “imaginary sick”. I want to clarify that I was also given a psychiatric examination which shows that my problem cannot depend on my mood. I have a serious problem of constipation, I make faeces in balls once every 10 days, I do not gain mass, I have muscle weakness and loss of muscles, I have a severe ED, my sweating is very small, I do not respond to alcohol, I no longer remember the dreams that I do, I have serious problems with concentration and brain fog. The outcome of the colonoscopy is: neoformation of the sigma. My Testosterone values tend to be low, DHEA - s values are below average, albumin is high. TRT had no major effects, maybe it worked a little on the response to erection … My penis is getting smaller and cold, my testicles less full.
Around mid-April I had a 50% spontaneous improvement, with greater libido and more consistent erections. It lasted two weeks, then it went away as it had arrived. Around May I had another time when I was better (I had no more suicidal thoughts and I had more energy and desire to work). I have recently returned to the starting line: no libido, severe ED, brain fog, suicidal thoughts. During this time I am slowly removing Clonazepam. I went from 1.5mg a day to 0.3mg a day and I’m going to eliminate it completely. My symptoms continue to get worse. The beard has suddenly stopped growing, my hair is falling very fast, the hair on my body is much thinner. The only positive thing is that I have found that my skin is still able to tan. The other day I was a few hours in the sun and I got tanned, with no sunburn. I can’t understand why my PSSD has so many symptoms in common with PFS, even physical ones.
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Me either. You would think, at least by presumably different anti-androgenic effects on different tissues, that there would be a noticable difference in the symptoms and their severity among PFS, PAS, and PSSD groups.
The survey is indicating that variabllity is more dependent on the individual than the drug they took which caused this condition and that these conditions are practically identical.
It can turn out actually that 5ar has nothing to do with our condition. Or at least is not a key factor. And I wouldnt be surprised. Its just because its one of the most studied direction and everyone picked up this idea, but its a good starting point. I believe serotonin and dopamine dysregulations are also strongly involved in this condition. Especially 5ht1a and 5ht2c receptors. I had amazing improvements with periactin which is antagonis of these receptors. Also Foxo1 idea is somehow dismissed, potentially p53/Foxo1/b-catenin chain reaction.
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Have you considered that systemic dysregulation of multiple pathways could be a result of the root cause of this condition?
It is also very plausible that the increase in FOX-O1 seen during Accutane treatment is responsible for the bulk of its anti-androgenic effect by suppressing AR signalling. This was once the focus of the discussion surrounding FOX-O1 and Accutane:
.
An anti-androgenic effect can result from drugs that increase serotonin:
5-ar inhibition is just another way to achieve the anti-androgenic effect.
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I’m loosing myself. I would just like to be able to train, play sports to distract myself from this horrible situation, but it is not possible, my muscles do not tolerate the slightest effort.
I feel close to the end of my journey. I think I’ll try low doses of antidepressants, hoping they’ll somehow help. I can’t tolerate this hell yet.
Is there nothing else you could distract yourself with?
Only Formula 1, but is once every two weeks… I lost my job, my parent haven’t money, i can’t buy a good Computer to play videogames. I have no hopes. It’s almost one year that I stopped drugs, but I’m still worsening. I haven’t money to pay doctors.
Yes, and downstream downregulation (proved in studies) of b-catenin could also be involved in hair loss in PAS. Wnt/b-catenin pathway is responsible for controlling anagen/catagen phases. Downregulation of b catenin could lead to non androgen related hair loss. Moreover, new generation hair loss treatment is based on that concept, and there are trials going on already.
I found some relatively safe FOXO1 inhibitors and will try them in near future.
Regarding neurotransmitters. Of course this study doesn’t prove much, but can’t be ignored as well. 5ht1a is strongly associated with ED. I will keep exploring this because of the positive result with periactin and just need to find selective antagonist now, because cyproheptadine bombard all receptors.
I took periactin about 1 month ago, it made me feel seek and tired for 2 days… I took 2mg, maybe i should try a lower dose
Yes it will make you feel tired as its quite sedative.I took it only before bed. But I see you are not in the best condition at the moment, so I would not recommend taking it until you are more or less stable. If you want to try anti depressants, you can have a look into bupropion it is different from typical tricyclic antidepressants and have less side effects. IT saved some people from depression and improved motivation as well as libido. Search for a bupropion thread.
Apparently, only 141 people are really sick … The rest are just charlatans. I think the survey is one of the most useful things to do to help our community. If you are consulting the forum without doing the survey, you probably don’t deserve to be healed. I don’t say it with malice, but it’s not right to cry on yourself, without helping those few people who try to do something to help the search. If you feel too bad, if the brainfog is too strong, let someone help you, like I did. There is no justification for those who do not take the survey.
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Support from me! We should try to help each other! This survey takes 30 minutes out of our time, everyone can separate 30 minutes to do it, there is no excuse for that!
I will pledge to donate $100 if we can get three more people to take the survey and confirm completion in this thread. Additionally If you are pming with people please help them complete the survey if needed. Be a squeaky wheel and make sure everyone and anyone you are taking to has completed the survey and follow up until you know it’s done.
Edit: I am not trying to be preachy. It took me forever to get it done and I had to be reminded multiple times.
@Greek, @Dubya_B, @awor - does the site offer badging functionality? Could we create a badge or a “membership level” that indicates the community projects that were completed? Not to alienate those who haven’t, but to celebrate those that have?
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When and if you donate, could you update it onto my summer fundraiser topic? I’m trying to raise 2,000 this summer and have members update on the thread when they donate 
Coming soon (ish)!
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I can’t believe, guys. I never had dry skin before. Even after PSSD.
My hair and my skin are dry and my hair changed texture.
I don’t know why it"s happening before 10 months. Only think I used in last two months are NAC and Tribulus
I used NAC 700mg/day
Tribulus 700mg for 3 week (cycling 1 week on and 1 week off).
I doubt NAC can reduce DHT. I think is Tribulus.
Any opinion?
I’ve read a lot of research on Tribulus Terrestris, most of them shown that Tribulus don’t increase levels of Testosterone or DHT. Maybe is just placebo effect.
Little update
I did simple blood work (I’d really like do complete blood work, but is too expensive for me) on July 25th. Yesterday, I had the results:
. Prolactin 10,73ng/ml… Range 4,04-15,2
. Total T 5,93ng/ml… Range 249-836
. Free T 45,00pg/ml… Range 40-200
So far, the Prolactin issues seem fixed after Cabergoline using. But I don’t see improvements.
Total Testosterone and free Testosterone, are litle increased, but are still on low range, especially free T.
I’m still worsening and I never felt so bad before. It’s like my baseline is this.
Bladder pain, frequent urination, testiucular pain, pelvic pain, penis pain, anal pain, dry skin, dry hair, hair easily breack and TOTAL impotence (before, i can easily reach 50% of erection if I was near my girlfriend, now nothing. Even if I try manual stimulation).
I can’t understand why, all this symptoms came later 10 months from the crash.
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My family believes it’s depression, but I’m slowly dying.
I continue to deteriorate drastically. My muscles have totally disappeared, my weight has dropped a lot (I haven’t changed my diet), my hair is falling fast, my skin is dry, my joints are very bad, my fatigue is debilitating, I get injured with extreme ease, my libido is completely non-existent, the tissues of my penis is getting smaller and smaller, my nipples are increasingly swollen. My memory is bad, I forget everything, it’s like memories are dreams. I can not concentrate.
My hands tremble.
I fear that I will soon end up on the “In Memoriam” list too.
I want to live, I want to enjoy the beauty of life, I want to run, laugh, drive, fix cars, play computer games, work, make love. I’m not a depressed, I love life. I want to live!
I love my family, I love my girlfriend, I love my pets.
I don’t want to die.
I repeat:
I WANT TO LIVE.
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