Scientific effort for treatment

I currently take transdermal DHT, which helps my joint pain tremendously. I have other positive effects from it as I have described elsewhere.

My longer term hope is that the epigenetic changes in PFS can be reversed by strenuous exercise. There is evidence this might be possible, as showcased in this thread: Exercise and Epigenetic Regulation

I have already begun my exercise program but have suffered a temporary set-back due to injury. I will resume shortly and hope to accelerate fast.

I also can’t exercise because of joint pain. Are there any safety concerns with transdermal DHT?

Of course. It is a very imperfect method of replenishing lack of tissue production of DHT, which I believe I have.

You have to dose it right, at a minimum. I would say you have to be within the normal serum ranges to make sure the effect on non-affected organs and tissues is somewhat limited.

It increases hair loss tremendously. It also affects my mind in a negative way - makes me more impulsive, aggressive, and a less deep and creative thinker.

Also, if you put it on genital skin, which I do, it may increase cancer risk.

Still, the benefits outweigh the costs for me for now, as I literally can’t walk or do anything with my hands without it.

Aren’t you concerned that most DHT is produced and consumed locally (so high serum levels aren’t helpful but rather mostly just cause disregulation of other hormones via the HPA)? I experienced zero benefit whatsoever from TRT.

If it’s really helping your joints then fair enough, but I personally would not be interested in disrupting my hormones without good reason.

I am concerned but I think the tissues do get some DHT from serum, especially if starved completely. Some tissues need less DHT than others and these can benefit more from systemic supplementation.

I had the following changes after I started taking DHT:

Progesterone has dropped from 0.805 nmol/l to 0.541 (up to 0.474) and is almost in range now. This is a 33% reduction!

Estradiol has also dropped from 95 to 72 pmol/l (41.4 - 159.0), which is a 25% reduction.

DHT went up from 175 pg/ml to 605 pg/ml (300-850).

Free Testosterone went up from 29.27 to 32.32 pm/ml (7.0 - 22.7).

Total Testosterone stayed the same at 23 nmol/l (9.9 - 27.8).

SHBG went up from 33.4 to 56.08 nmol/l (18.00 - 54.00).

The Free Testosterone measure seems paradoxical and might have been a fluke. Need to repeat all these at some point.

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Is your libido any better?

It is only better when I apply the DHT cream locally on target tissues - i.e. the genital area.

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Interesting that it is apparently affecting your brain (libido) only when you put it on your dick? Does it help with genital numbness?

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Hi @vkg1, thanks very much, I’m sure that will be a big help. @Northern_Star had some success doing so. We have an internal literature review that does cover this in detail, but A) it is huge and B) we need further feedback from scientists who have indicated they may be able to help advise us on how to best use parts of it for more effective dissemination, possibly via a journal, so it isn’t shareable at this time.

Regardless of any scientific justification, I think the case for “how they may be related” at the level of patients taking a survey (which is really quite a low bar of effort to clear) should be a case that can be simply made by demonstrating the persistent symptom profile in the literature reviews of PFS in line with what many pssd patients and post accutaners plainly describe. Healy et al. (2017) already have published results of a far more limited survey in medical literature drawing attention to a symptomatic and behavioural overlap across the 3 groups. Like post-finasteride patients, post-accutane and post-ssri patients are a heterogeneous group in symptoms and severity. Establishing the existence of the clinical profile and, secondarily, analysing the significance of overlap in the data should be a priority before needing a clear explanation of why. After all, although many users have their idea of what the symptom profile is, it would be wrong to assume the scope is adequately acknowledged either broadly within the patient community or in wider appreciation of the condition - it isn’t. This is a priority before any explanations, and the survey has been designed by complete review of related literature, complete review of cases on this site, and collaboration with other patient communities to achieve that aim as best possible (with acknowledgment of the problems of any such surveying, e.g. recall bias). It is purely to establish the clinical situation.

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Sibelio, I don’t want to get you down or demotivate you, but just in case it is useful, I “lifted heavy” at least 4 times a week, basically the most that any non-PED taker can do, for about 10 years without any improvement in my symptoms. In order to have more time to move forward in the other areas of life, and generally put my resources toward things that have permanent rather than temporary effects, I stopped lifting about a year ago and have been the same. Neither better nor worse, just with the time spent on things that you don’t lose quickly if you stop. Make that of what you will.

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Thank you for this detailed explanation of things. I guess I’ll primarily link the Healy paper. For what it is worth, as long as we are on the topic, I think it’s worth pointing out that there may be communities of asexual people who have taken these drugs without making a connection. For example, people who took Accutane when they were going through puberty and got the effects might be expected to assume they are Asexual by nature since the medical community tell people Accutane doesn’t cause asexuality.

So I think members of the community (including myself of course) should by engaging this 3rd community as well, in addition to the PSSD and PAS communities.

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I entirely agree with the possibility of that theory holding true.

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Any links to these asexual communities?

I remember years ago viewing a flame war between someone insisting drugs can cause asexuality and an asexual person claiming that it’s a perfectly natural state of being.

Just saying, tread carefully if you venture into these other communities.