Can problems in the androgen receptors explain all of this?

#1

Hi,

First of all, I have to say that during the 8 years I have had PFS I have always defended the AR theory (even when this forum was a crazy battle :joy:)

I still believe the problem probably may be explained in the AR, but can we totally discard other theories? Many of the problems I have may have some relation with the nervous system. Can all of these be explained by awor’s theory? I am not trying to confront anything, I am just worried, and probably someone has more knowledge than me in this regard and can give me an answer.

Also, some of the things I explain below may sound bizarre, but I am a severe case with evidence of fibrosis, atheroesclerosis, calcifications and other small things. What I explain below is on top of that.

I have lots of problems that some doctors say may be caused by problems in the nervous system and others say it’s all in the limbic system (or just caused by the central nervous system).

For example, when I am exposed to cold or hot temperatures, my body has new problems, for example, if I sleep in a room without heating in winter. I can get from skin pains to tingling in genital area and wounds appearing in my genitals.

But the worst problems regarding temperature is when my body is in contact with cold water: If I jump in a cold swimming pool, as strange as it may seem, the next days my body loses muscle and gains fat, and some parts become extremely white with veins very visible, and I get the pains of poor blood circulation (e.g. in legs, arms, head).

My family said this was stupid, and even though, at first I didn’t want to, I decided to prove in front of them the changes: I took photos of all my body. Then I throwed cold water into my breasts and belly in front of them, and two-three days later, my skin became very white and painful in some areas, A LOT of fat appeared, and I immediately got very big stretch marks that haven’t gone away, on both sides of my belly. I have the before and after photos of all of this. But the strangest thing is that despite this cold water only touching my breasts and belly, my penis has been aching and more “fallen” since then.

Other similar problems happen when I smell places that have just been painted. I get nerve pains, and many of the pains are in the area close to the genitals (which get more fallen), I also get extremely real dreams when I smell paint, very painful eyes, and I get sudden increases in fat (something which still amazes me), etc.

Some doctors have diagnosed me with Multiple Chemical Sensitivity because they say that people with MCS are affected by these same things. Others say this may be caused by problems in the limbic system, and others say there may be problems in the peripheral nervous system. Also some say that MCS is caused by both limbic system and the rest of the nervous system.

But what is strange is that some of this things affect traditional “PFS symptoms”: body weight, problems in the genital area, etc.

And every crash I had, I’ve become more affected by these things.

Sometimes for work I visit places which take care of people with mental disabilities, who have problems with their nervous systems, and their bodies are very disproportionate in most cases: some of them are extremely fat with very low hanging breasts, some of them are extremely thin, some of them have very big thigs, and I start to think that my body is becoming very similar to that of some of them. My thigs and breast have become very big and my belly is very big and low.

Also, mentally I have very usually anger, “poor control” in tense situations, chaotic behaviour, anxiety appears very easily in case of small arguments, lack of order, especially mental order, almost no focus.

The most amazing thing is how orgasm brutally affects my mental sides. I should almost never orgasm, as sad as it may seem.

This may seem surreal to some, but at least I now have my family as witnesses of some of the changes.

Can the symptomps of androgen deprivation explain things such anger, all the problems that at least feel related to the with nervous system, etc?
Also, i think in the past it was proven that changes in the limbic system were found in people with PFS, but I cannot find this info, does anyone know about that?

I am a severe case, so this shouldn’t happen to most people here. Other severe cases have had similar (bizarre) experiences as some of the mentioned above:

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#2

Sorry for the long post, I just kept writing and writing without even noticing this may be too long :sweat_smile:

#3

That must be comforting having your family’s acceptance after seeing the evidence themselves. …Seeing is believing I guess.

Before making the connection between taking Accutane and developing “PFS”, I looked all over for answers to explain what happened to me.

At one point an endocrinologist refuted my insistence that my testosterone had to be lower than it should be due to a majority of my symptoms being associated with hypogonadism and she denied my request to begin TRT despite having levels in the 500s ng/dl, which is well into the normal range.

To paraphrase her words, she said “if your testosterone is this high and you’re still having these problems, the only thing I can think of is that you have a problem with your “testosterone receptors”, and that’s just not possible because you have normal body hair, deep voice, and developed normally.”

She finally (reluctantly) prescribed me androderm because I wouldn’t accept no for an answer, and told me that I would just be disappointed when it didn’t do what I was expecting it to do. She was right, unfortunately.

Fast forward to finding this forum and I begin hearing the same thing. That a problem with androgen receptors might explain this condition. As much as I hated to admit this could be true, because of the unbelievable complexity it implies, I could find nothing else to explain symptoms of hypogonadism despite normal (even high on some assays) levels of testosterone.

AR has been found to be expressed all over the body in tissues outside of the reproductive organs, such as the digestive tract, skin, tear ducts, muscle, bone, adipose tissue, central nervous system, and peripheral nervous system. And this is far from a comprehensive list.

Take this all into consideration and make the call.

Hah. Your post isn’t too long, think of it as very detailed.

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#4

Thanks for the answer Dubya, and very interesting that your endo mentioned that.

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#5

Yeah. Looking back on it, she was one of the few doctors I saw who had some common sense and didn’t immediately dismiss me. She even briefly mentioned that Accutane was found to lower AR levels, and said she would write-up a case study on me if I wanted. I didn’t believe an acne drug would be allowed to be marketed to children if it could do exactly what it did to me and she didn’t really push the issue for long. She also said something about all my cells turning over after 5-7 years and reassured me it wouldn’t be permenent if the drug caused my illness. This was way back in 2003. I wonder what difference this could have made for PAS and my life if I would have accepted her proposal. I think my believing this was a simple hormonal problem that could be easily fixed someday kept me sane.

Acutally forgot about that moment until finding other PAS stories like mine in 2010 and putting the pieces from my memory back together. What stuck out about that visit was her laughing about me writing in my medical history paperwork that I took Accutane for “Ichtyosis” because I read that in the pamphlet that came with the drug and somehow misconstrued it with the scientific term for acne. Hah.

Sent her a hand-written letter in 2013 outlining PAS, PFS, and PSSD, but she never responded.

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#6

I do not want to argue with no body, bit if really is the AR why we get spontaneous recovery, how is possible that the AR have a problem today and a few days later is fine.? It is just a question, I don’t mean that there is no a problem with the AR.

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#7

I don’t write much but I want to tell you my opinion. I read your posts and you know more than me. any way.
I experienced recovery after I had my blood test done in February in 2-3 days I felt more libido than I had pre SP. this lasted about 5-6 days. I mean I would have boners just out random like eating food at night 11 PM after work this wasn’t normal for me. I didn’t take any supplements or anything no vitamins no pills. I didn’t recreate this because of my insurance and ill go and get blood test done in 4-5 days.
I think I was related to blood that was taken out of me this some how caused my temporary recovery.
I donk give a shit if no one believes this I believe it 90%+ and I will recreate this.
Other very big improvement that I had was eating raw honey its funny because I didn’t realize that it was honey after I ate it and felt really good sexual improvements.
Also stress has very good sexual affects on me just like raw honey does.
I think it could be related to liver problems in our body some kind of a problem I don’t know and this is what causes endocrine disbalance. remember we all are 40-50 % okay some are 70-80% so something is not working properly and that is why some people get better and some don’t. over time or by supplements or exercise. people that don’t get better over time are taking something supplement/vitamins that delay the bodies ability to get better or push it back. I believe that our problem is endocrine related some have mild some have endocrine disruption at different levels that is why protocols can’t be replicated. different guys have different endocrine issues some are comman symptoms and some are so different.

I don’t know guys how normal or strange my comment sounds but I believe it I have tested everything that I wrote above accept blood lose theory, I will go to the doctor and have my blood taken and I will make a post and write about it. 2018 December 2 my om my moms birthday I was going to go out and buy my mom flowers and I went in the bat room I got a nose bleed from blowing my nose. I was bleeding for 30 minutes and I lost blood and I recovered that week partially for first time 6-7 months I had morning wood weak but wood and it lasted for a week.

my symptoms where feeling cold, bools close to my body shriveled up 0 brain to penis connection I had to touch my self even watching porn to get it up after abstaining from (sex) over week. I had anxiety. I was like tis for 6-7 months occasionally getting morning wood once in a blue moon. and that occasionally I think was because of raw honey.

I get better over time fore sure every month I have better recoveries sexually and my sleep is getting better. I can get boner by thinking about women without touching my self or watching porn. I got better because I stopped eating sugar and junk foods I did fasting and most of all I never took any supplements or any vitamins. ill make a tread here after I recreate my blood theory if it works I am sure it will improve my sexual symptoms and ill let you know.

don’t worry guys we will figure this out nothing is impossible we will fix this fore sure. stay healthy and eat healthy and most important of all we are 1.5% or so who took this drug and got this side affects. we will figure it out

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#8

I was reading something the other day and a Dr mentioned that deficiencies in one part of the body can lead to problems in other parts of the body. Maybe for some of us we are seeing a domino effect that is causing issues elsewhere on different time scales.

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#9

We may have androgen insensitivity due a desensitized AR.

#10

I don’t mean this literally, but time moves extremely fast on such a small scale as cellular processes. For example, a rapidly-proliferating human cell can make a copy of itself in 24 hours.

Significant changes are observed in a matter of hours in some of the in-vitro studies about genomic regulation of AR target genes. Not specific to AR, but this discusses significant changes in gene expression happening in a matter of 8-16 minutes.

Changes in non-genomic AR signalling can occur over a time scale of seconds. An example:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2386261/

Perhaps the most conserved cellular response to steroid hormones indicating a non-genomic action is the rapid rise of intracellular calcium concentration ([Ca2+]i), observed in a variety of cell types These effects appear within seconds to minutes and have been described for all classes of steroids

Considering this, it also makes sense how some of us went from completely fine one day, to crashed-out shells of our former selves the next.

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#11

Just in case, I hope Melcangi’s research continues and I hope it is really taken into account. It is always a wise option not to put all the eggs in one basket.