I can relate to some of your symptoms man. I hope that with time you can improve. And like @Erik says don’t hesitate to reach out to other patients!
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At the end of the article, it is mentioned that there is a group with normal 5 alpha reductase and androgen receptors, possibly referring to a disruption in signal transmission. In my opinion, finasteride creates an acquired androgen resistance. In partial androgen insensitivity syndromes, although the hormone levels are normal, even though the hormone binds to the receptor as it should, it cannot generate the necessary stimulus in the cell, the cell does not react to it. There are two types of diseases in general, the first is genetic, the second is environmental, the second is acquired, for example type1. and type 2 diabetes. Of course, we are not intersex by birth, but we have androgen resistance just like them. There are much more comprehensive studies in this area. I think we should research them.
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Androgen resistance and androgen insensitivity syndromes are different diseases. In androgen resistance, the hormone enzyme and receptor are normal, but the cell does not respond. Secondly, in androgen insensitivity syndromes, the receptor is probably defective and even if the hormone binds, the receptor does not function. The drugs used in these diseases are quite cytotoxic and distressing drugs.
Let’s keep looking, I think we can find a way 
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I’m so sorry to read you’re experiencing these problems. Like @Erik has said, it is good that you seem to have a positive attitude to what everyone here knows is a horrible situation to find yourself in.
This, broadly speaking, is a hypothesis which has been proposed on the forum for a long time. The good news is that the PFS Network have found the scientists with the relevant expertise to investigate this approach and they are interested in devoting some of their precious time to our condition. If we support these experts with the time and funding that they need, then there is some hope for us all to find a way out of this mess in the future. As others have mentioned, don’t hesitate to reach out. We all need to stick together if we’re to find our way out of this situation. 
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What drugs? The only thing I found about it is that one causes the other and doesn’t appear to be a condition that’s treated.
I attended the council today with my teachers. There are some children who enter puberty late. They discussed their treatment plans. There were professors from pediatric endocrinology and urology. I disclosed my own illness and some already knew that I had it. they listened to me and said that they can also have androgen resistance in children who entered late puberty. They said they could try this. I need to sign certain signatures and it will be a treatment for about 6 months or even a year. I will post the progress.
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Try what?
Did they tell you how androgen resistance could be tested before getting a treatment? Maybe some additional signs in the organism? Any ways to check the hypothesis?
I guess, the treatment must include some very potent drugs and could have some possible adverse effects.
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doctors suspected a hypogonadism in me, but my hormone tests were always within the normal range. some psychological tests were done and it was checked whether I had any trauma-induced sexual dysfunction. They eliminated this possibility as well, even the psychiatrist I went to said that he believed in me a lot, and he was absolutely sure that these changes in my brain and body were not in my head. some possibilities remain: loss of libido due to prostate atrophy, 5 alpha reductase deficiency androgen resistance, or an acquired androgen insensitivity syndrome.
Some stimulation tests were done. because dht measurement makes no sense without stimulation tests. dht release is also normal, so my 5 alpha reductase levels are normal. The only remaining possibility is that the cell is not responding to androgens or that the androgen receptor is not working. For this, they will initiate a virtual adolescence.
I will not tell the names of the drugs and the treatment protocol here, but dht and testosterone preparations are not used, some non-aromatized anabolic synthetic substances are used. And that’s very, very risky. I need to put certain signatures. The treatment will not be an aggressive treatment. I will be constantly followed. I hope it helps.
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actually some of the signs i saw in myself were very thinning of body hair. My hair is still bushy and there is not much shedding. loss of libido penile tissue was normal up to 6 months after stopping the drug but now appears to have thinned or the tissue has changed.
maybe this is actually a good thing because hair follicles in the body are very small. And that actually shows that the root cause is at the cellular level, if we can get the cells to respond again, everything will be fine. so we need to understand cells.
I was considering androgen insensitivity too. But there’re too many signs of androgens affecting my body like muscle development, return of acne and hair loss. My hormone tests were in the normal range too. And the endocrinologist said she could tell at the first sight that I didn’t have hyponogonadism.
Despite all of that I still have persisting symptoms, typical for PFS.
Could it be some partial insensitivity? I don’t have a clue.
I hope your doctors know what they’re doing. And I do hope you’ll find some helping treatment. Let’s keep our fingers crossed.
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How long ago did you experience hair loss?
The working principle of androgen receptors is not actually working or not working. Our bodies don’t work on a yes or no response most of the time. There is a spectrum that we can call healthy, normal and unhealthy abnormal.
When I searched the literature, I searched maybe hundreds of books. İt says that the androgen receptor will give certain signals to the cell incorrectly, in fact, it seems like it gives a pear signal instead of an apple signal, that is, apples and pears have similarities in shape and taste, but if we take the apple as normal, the pear will be wrong. This may actually explain your hair loss but your lack of libido and other symptoms (emotional breakdown, loss of reward sense, genital anhedonia).
I’m curious, could you explain these tests a bit more? Were they serum blood tests? My understanding is that DHT is made within the tissue it’s then used in, so measuring the tissue hormone level is difficult.
Man, this sounds like it could be quite dangerous… Remember that no Doctor fully understands what PFS is yet. Obviously it is your choice, but I don’t think it’s a good idea to rush into doing anything too crazy to try and treat this after less than a year of problems.
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DHT is measured after hcg injection. It is used in the diagnosis of male pseudohermaphrosis. hcg actually mimics lh.
DHT has a very short half-life, so direct blood measurements are wrong.
I really think you should wait longer before you do anything.
I’ve read 67 healing stories out of 1.7 thousand member stories, and I feel so hopeless. I don’t know what it means to feel better, I can’t understand the sentence I will feel better in a few years
A lot of people who heal move on with their lives and don’t come back. It happens. If you proceed with this there’s a very real chance you become much, much worse. Also, we are making progress with scientific research to uncover more about this condition.
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I’ve had the same thought. If there is some problem with the AR it sure we hell isn’t systemic. If it were we would be able to catch it on blood tests for sure.
But I don’t think it’s a coincidence that almost all the tissues that are affected in us happened to be tissues high in 5AR (muscle, penis, prostate, skin, brain etc).
Yeah it’s only 1 hour IIRC, and 99.9% of the serum level is bound to SHBG as DHT is not supposed to be a systemic hormone, but rather a paracrine one.
I really wonder how accurate a HCG stimulation test for DHT would be. It’s been shown that serum and intra-prostatic levels have zero correlation in several publications.
I really think one would need a tissue sample to draw any conclusions.
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I wish I had to sign a waiver before being given finasteride. Never would have fucking taken it.
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In a weird way it makes me feel slightly better about my situation that a simple plant based product sold over the counter could have done this to me. It’s weird Denmark banned saw but not fin. Go figure.
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