Hey guys, I’ve had PFS for the last 2 years.
I finally did my first lot of blood tests.
Everything came back average or high, except:
Free Testosterone: 288 pmol/L
(Reference range: 260-740).
&
S-Testo: 16.5 nmol/L
(Range: 12.0-31.9)
Should I be worried about these results/is this something I should be looking into further and getting treated for?
I’m 27, and feel like these are too low.
My doctor didn’t seem fazed. (Guessing because they were within range?)
Vast majority of PFS sufferers will have normal blood hormone panel ranges. In those cases where there are anomalies, these are usually all over the place. In other words, there’s no indicator for PFS in blood hormone measurements, so there is currently very little benefit in getting them done other than ruling out hypogonadism, which I would say you have effectively ruled out if your hormone levels are within range.
There’s no point in trying to change them either, as there is no proven track record of hormonal treatments being successful with PFS patients. We see people try this all the time and it never works out. Especially if your hormone measurements are within range, there’s no real incentive or benefit to start extensive hormone treatments that are not without risks.
Let’s be honest here, it’s low for a 27 year old man.
Having said that it is not an invitation or suggestment to start testosterone therapy.
I myself am doing TRT, have been on it for over a year now. Other than muscle tone nothing has changed for me.
My original test value was 450ng/dl and now on TRT it is between 1000 and 1200.
My pfs symptoms are purely sexual, I will continue to do TRT for another year before I throw in the towel.
If I were you I would not bank on the fact that TRT will solve your problems (if you have PFS) most of the TRT users (including myself) did not get better.
Our best hope if professional research through the foundation.
Just want throw in my two cents here - I completely agree with the post above about supporting the research. Just want to say a few things about the PFS Foundation’s work vs the PFS Network’s. I have zero bias and personally support the research that I believe will achieve our goal the quickest - ultimately, I support the PFS Network as I believe their work is superior to the Foundation’s.
The biggest flaw I see with Melcangi’s work is that it’s not underpinned by any coherent theory which can account for all of the symptoms. In fact, Melcangi has often ignored certain symptoms simply because they don’t fit into his theory regarding neurosteroids.
For example, severe physical changes, which can’t plausibly be explained by changes to neurosteroids are not accounted for. I have extremely loose skin, muscle loss, facial changes, a redistribution of subcutaneous fat, bone loss, etc. which couldn’t be attributed to just neurosteroid changes.
Also, Melcangi’s work involves feeding rats finasteride rather than studying affected tissue of PFS patients. This is a severely flawed approach as we know on-drug side effects does not equal post-finasteride syndrome.
Melcangi’s explanation that one must first complete a certain amount of work in order to be able to investigate human tissue reads as more of an excuse than a legitimate reason. Due simply to the fact that the PFS Network are currently studying affected patient tissue from the scrotum.
The PFS Network’s research is multidisciplinary, with leading andrologists, prostate cancer researchers, and endocrinologists working in tandem to uncover the driving pathomechanisms of the disease. The one researcher, Dr. Alfonso Urbanucci, is a world class prostate cancer researcher was published in Cell. The other is Dr. Nadine Hornig, who specializes in the androgen receptor. Their work involves the utilization of next generation sequencing, to investigate changes to the chromatin landscape in the androgen receptor region, as well as possible predisposing genetic factors. Their work is also endorsed by Mohit Khera, who published the Baylor study, and is underpinned by a comprehensive theory that can account for all of the symptoms. This, to me, is extremely important when investigating the disease, rather than investigating individual symptoms.
I initially was donating to the foundation. I extensively did research on both organizations when I first got this last year - speaking to both the members of the network and foundation, reviewing their methodologies, understanding their theories and approach, and I personally saw the PFS Network as being superior. Their theory, which is covered in a very thorough scientific review written by one of the members really accounts for the vast range of symptoms.
Here’s the paper - https://paper.pfsnetwork.org/pdf/Post_Androgen_Deprivation_Syndrome.pdf
It might be low among 27 year old men but that doesn’t mean it’s low for this 27 year old man. If we learn one thing from PFS is that what’s ok in one man is not necessarily ok in another. The balance between an individual’s hormone levels and their cell structure is billions of years in the making and not something to trifle with despite the marketing. Might it improve something? Maybe. Might it fuck something up beyond repair that wasn’t worth the improvement? I think we know the answer to that.