Certain SNPs in ADAMTSL4 seems to affect the eyes negatively.
But the one you got isnāt linked to any specific disease in the literature that I could find.
1 Like
Thank you for sharing this. I found the eye information as well. You also literally quoted my doctor today āwhat I have is not linked to any specific disease (currently)ā. I was told that Invitae the Company that runs the tests will reach out to me, should it ever be discovered that it is linked to any sort of disease, etc.
For the first seven months of this, the one thing that somehow stayed relatively normal was my erect penis size and strength (certainly not flaccid). Go figure. Unfortunately though, recently when it is erect, while the shaft is hard. The head is not. Itās soft, can be pushed in, pushed together, all sorts of weird ways. If you push down far enough you can feel some harder tissue (which I believe is what normally is there). My concern is the tissue in my penis head has wasted. Or, could it just be the fat that surrounded the tissue is hopefully just temporarily gone? Has this happened to you? Did it come back at anytime? Please let me know. Thank you.
P.S. I notice something sort of similar with the tip of my nose. I can grab the skin and bunch it together and feel the cartilage underneath. Whatever was in between is gone. Again, hopefully temporarily.
Super happy (and horny lol) to finally post some positive news!! First of all, to anyone on the fence about Pelvic Floor Therapyā¦DO IT!!! As mentioned above, my erect penis was finally starting to falterā¦was really worriedā¦well, not anymore. In the middle of my session, she was working my lower abdominal/groin areaā¦I felt the blood flowing thru the lower half of my body again, I felt re-born. Then, suddenly out of nowhere bam, the FULL SIZE FULLY BOOKED plane was ready for takeoff. Little embarrassing, but she was great about it and said itās to be expected. Weāre activating those areas. Anyway, when I got home, I tested things. I couldnāt help myself. Shaft and head were completely hard again and one of the most pleasurable orgasms ever. Iām talking PRE-SAW PALMETTO!! I cannot stress this enough. The belief is because of our muscles falling apart, itās cutting off blood flow and putting pressure on nerves. This can be opened up with internal (yes, you read that right, like a long prostate exam, once initial shock over, not that bad, donāt worry) and external therapy. I even got micro needling therapy in Perineum (this worked wonders). They hurt going in a little bit, then went numb, and so far since then, I feel like my old self down there. Scratch that, better than ever!! Iām seriously tempted to ātest runā things another time, but wonāt push my luck. I have enough Prolactin, thank you very much!
P.S. My flaccid size is constantly fluctuating now between Saw Palmetto small and ānearlyā pre-fin. This is after 3 one hour sessions too (2 days a week). So, looking very good. Also, doing regular physical therapy/workouts with a personal trainer (3 days a week). Tough and very sore each day, but pushing as hard as I can (think Iām getting a little muscle back, again not too many sessions yet, but will keep you posted). Hired diet specialist as well. Testing all sorts of things. Will share everything I learn here. You guys have helped me save some bucks, so let me return the favor 
So, bottom line, donāt give up on sexual symptoms, give Pelvic Floor Therapy a try! I mean even my mood is better
So since I made the plane reference earlier, Iāll leave you with this: Tower, this is Ghost Rider requesting a flyby 
5 Likes
Hey mate, Good stuff! stoked you are doing well! I suggest reading the āheadache in the pelvisā. Just started reading myself, pretty informative.
1 Like
Thanks buddy! Just ordered the book, looking forward to it. Appreciate the tip 
Amazing article about one hell of a son. This should give us all hope: https://www.nytimes.com/2021/11/04/health/sharif-tabebordbar-gene-therapy.html?utm_source=pocket-newtab
1 Like
Hey man, how is the pelvic floor therapy going? I have severe shrinkage as well after saw palmetto and willing to give this another go with a professional.
1 Like
Please do and definitely with a professional. This is not something that you can do on your own. Itās working wonders sexually and with urination/defecation. Bear in mind, Iām not 100%, but definitely a significant improvement. Iām only 3 sessions in, so keep that in mind too.
While unrelated, I also want to mention that my gum loss appears to have stopped. All my gum loss was on the right side of the mouth. Iām curious if that has any significance. In terms of brushing my teeth, Iām actually celebrating my first week of no blood. All knock on wood.
Unfortunately, my ever growing skin suit continues unabated. Very similar to @Dknighten.
4 Likes
More excellent news! Earlier this year, I introduced myself to Dr. Michael S. Irwig (who of course needs no introduction here!). He has been incredibly kind, helpful and responsive. In our most recent discussion, he shared with me his latest medical journal publication: āHow routine pharmacovigilance failed to identify finasterideās persistent sexual side effects.ā
While technically not finished yet, this is where it will appear, so please keep an eye on the following link: https://pubmed.ncbi.nlm.nih.gov/34713622/
I neglected to mention, I expect results for my latest tests this week:
3 Alpha Androstenediol Glucuronide
DHT
Estradiol (E2) Sensitive
Prolactin
Vitamin D
Iām also scheduled to take these tests later today:
Growth Hormone (Serum)
IGF-1 (Insulin-like Growth Factor 1)
I will of course post these results as well. The second I have them.
My best to you all! Stay strong!
1 Like
@Fighter1 thanks for the updates buddy. The following articles are extremely relevant to our plight:
Basically, what the studies have concluded is that there is no issue with hormones, it lies with the neurosteroids in the brain as 5AR is also required to synthesize progesterone to dihydroprogesterone which is then converted to allopregnanolone
2 Likes
Very interesting. Thanks for sharing and your support, pal!
Ok, I got two of my results in today. Oddly enough, they were the most recent tests. My assumption is, that since the others were bundled together, until the last oneās analysis is complete, I wonāt be sent anything. Iām told 3-Alpha can take 14-16 days. So, betting itās that one holding things up.
So, without further adieu, here are todayās numbers:
And hereās what Iām waiting on:
3 Alpha Androstenediol Glucuronide
DHT
Estradiol (E2) Sensitive
Prolactin
Vitamin D
Eager to hear your thoughts. Especially yours, @Cbrandel, I think you missed your calling
1 Like
Not much to be said really, you have a very healthy IGF-1 level which is generelly good (donāt know about itās role in PFS but Iād say itās positive).
As I posted recently in some other thread here, GH is secreted in a pulsative manner during sleep.
So itās normal to have low levels while awake. But your IGF-1 tells us your GH secretion is healthy.
Iāll check in here again when more results are in 
.
1 Like
@Fighter1 the lab that is doing your testing - do they offer blood tests for the following:
Pregnenolone
Progesterone
Dihydro-progesterone
Tetrahydro-progesterone (aka Allopregnanolone)
Another major function of the 5 Alpha Reductase enzyme is to catalyze the conversion of progesterone to Dihydro-progesterone and if there is an imbalance it could explain why we feel so down. This may be worth investigatingā¦ I would do it but none of my local labs perform those tests
1 Like
Thank you very much for this information, @SawPalmHater . My tests are a combination of LabCorp and a University Lab. I will ask my doctors to order all of these and will keep you posted. In the meantime, here are my latest results, @Cbrandel
3 Likes
Hey @Fighter1, Iāll try to make a post but I donāt know if it will be helpful as everything except prolactin is technically āin rangeā and we donāt have much knowledge about whatās causing our issues.
So to start with your DHT and 3a-diol g theyāre all within range, but on the lower 1/3 of the range.
However itās really hard to assess this values without before blood since theyāre all very poorly understood.
Itās been shown that DHT levels indeed is very important for men.
This basically says that when T is above 350 ng/dL, DHT will matter more when it comes to having less symptoms according to AMS (aging male symptoms). If T is under 350 ng/dL itās more important than DHT.
Since your T was around 650 ng/dL last time you checked, and if we assume itās the same now, that would mean your T to DHT ratio is almost 6%, which is considered normal. But again on the lower side of things (normal 5-10% in serum).
I donāt see your SHBG anywhere but Iād guess itās on the higher side since your last lab showed lower range free + weakly bound T and this lab shows lower range free DHT.
This is not uncommon in PFS, even though not everyone show this hormone profile either.
This article linked high SHBG to feminization of men with liver cirrhosis.
Itās not stated in the abstract but I downloaded the full article and controls had a SHBG of 25 nmol/L, while the liver patients had 50 nmol/L on average. On the other hand my SHBG was 23 nmol/L and I still have PFS so it canāt be the sole reason.
Your vitamin D is totally fine, 30+ is from my understanding sufficient (maybe even optimal). [The experts disagree somewhat, but around 30 ng/dL should be enough to not cause trouble.](https://www.health.harvard.edu/blog/vitamin-d-whats-right-level-2016121910893
High prolactin, probably is due to either low dopaminergic activity or not enough androgenic activity in the pituitary.
Maybe even a mix of both, as we know from rat studies that fin indeed dull the dopaminergic system, and we know from human studies that low DHT in CSF is pretty much uniform between PFS cases.
Would a dopamine agonist help? Maybe.
If it does indeed help, the conclusion would probably be that thereās enough dopamine receptors, but maybe downregulated dopamine synthesis is the cause. Estrogens are very protective of the dopaminergic neurons and estradiol is linked to alcohol consumption due to increase in dopamine, and alcohol consumption is decreased in PFS. Could be totally unrelated though, just an observation I made.
Iām guessing you will do the scan now and decide what to do after? Many people have had high prolactin and the trend is that it usually goes back to baseline after some time, but something like Cabergoline might speed up the process. Youāll need a very, very small dose and the side effects seems rare in these cases. But be careful and make sure your doc know what heās doing if you chose this path.
Prolactin has indeed been linked to low libido.
But this is worth noting:
-
None of these patients with a high PL level had a pituitary pathology and 5 of these 16 patients had a low tT (31.3%).
-
only 42 patients had decreased libido and none of them had any type of endocrinopathy. Moreover, most of these patients had normal values of tT (80.5%) and PL (76%).
So itās indeed also possible to have normal prolactin and still have libido issues. Yours are obviously way higher than the participants in this study (avg low libido 16.5 ng/mL, avg normal libido 10 ng/mL).
When it comes to E2 I note that itās on the lower side of things. Actually your T and E2 almost match my own. I would be very careful about doing anything to lower it.
This is a interesting read about ED and E2/T ratios.
They noticed how T/E2 ratio can influence how oneās penis behaves, as presented in this diagramā¦
As you can see the group with the least E2 suffered from delayed ejaculation (numb penis anyone)? Just to give you an idea your value would be about 3.20, to get the same ratio that the control group had youād need to raise your E2 to about 38 pg/mL if your T is stable.
Estrogens are indeed very important for male libido.
-
āWhat will surprise many people is that loss of sexual desire in men with low testosterone is due to lack of estrogen," Finkelstein said. āPeople think estrogen in men makes them very effeminate; they think of it as a female hormone, they think it is testosterone that gives men their sexual desire."
-
āIt is amazing what we donāt know," said Finkelstein. āEven the most basic things we donāt understand about this drug that has been around for almost 80 years."
This are some good quotes from the article, and I totally agree with him. We have very little understanding on how things actually work.
Itās not uncommon that people get less sex drive with TRT (without PFS) for example. Even though some people think more T = more sexual appetite, itās not really the case.
-
They found that the administration of testosterone with and without aromatase inhibitors markedly impaired sexual function when aromatization was inhibited.
-
Ramasamy et al. in 2014 showed that libido was increased in men receiving TST when testosterone levels were >300 ng dl-1 and estradiol levels were >5 ng dl-1. Most compelling is the fact that in men with serum testosterone <300 ng dl-1, sexual drive was seen to be markedly higher when estradiol levels were >5 ng dl-1.
I donāt know why, but for some men it seems like finasteride actually decrease their E2 for some reason. This is a good case study, on someone who got blood while on fin.
If you read through the thread youāll notice how his T plummets and his E2 follows. At some point he have <10 pg/mL E2.
This is while on the drug. While the general consensus is that total T and E2 should raise while taking fin, as you can see itās not always the case.
I have no theory on why this would happen, but it is interesting nevertheless. In my own experience, lowering E2 is really bad for me. Muscle loss, aching joints and tendons with diminishing sensitivity in penis was my experience. Oh and also very, very dry skin + pain in hands while holding onto stuff.
I have no idea what to do about all these issues, but one thing is painfully clear and that is that decreasing enzyme activity is way easier than to increase it. Which is unfortunate because the metabolites of T is more important than T itself.
Also fin can change receptor density and it seems to not be only AR, but ERs as well. And without receptors, you could have all the hormones in the world and it wouldnāt do anything. On the other hand, if you have to high density itās also bad. Very complex and canāt be measured very easily. Some hormones also regulate the expression of other hormone receptors. For example estrogen regulate progesterone receptor expression and progesterone regulate estrogen receptor expression.
I hope you got something out of this post, although itās not much help when it comes to understanding PFS or deciding what treatment to pursue. Just some of my observations/thoughts on the matter.
2 Likes
WOW! I do not even know where to begin. Thank YOU very much, @Cbrandel!
I guess for starters, I should tell you that I just requested an SHBG blood test, thanks for the suggestion. Seeing as how our results are similar, Iām eager to compare.
I find it interesting that my E2 might actually be low. For what itās worth, my E2 doubled the past few months (not the sensitive test though). Maybe I should get another sensitive test next month? Just hoping thatās a good sign.
With regards to Vitamin D, for what itās worth, I think I should be higher. I live close to the equator and get a lot of sun. Despite the pain, I continue to walk my dog or bike pretty much every day. Not hard biking mind you, I used to race semi-professionally, but nice casual rides. I actually wear a hat less too, as stupid as it sounds, to get more scalp sun!
It does appear my Prolactin is going down. Roughly 41 to roughly 37. Hopefully that will continue. You are correct, the plan is to continue the Prolactin blood tests as well as the Pituitary MRI (Dec. 1). Afterwards, weāll make a decision. A very very low dose of Cabergoline is exactly what has been suggested. They are hesitant, as you are, and only want to do it IF a tumor is found. Which as we discussed is unlikely. I must say Iām eager to find out though, especially with my continued skin suit growth. Iām more Ehlers Danlos everyday. How about you?
My T (and E2 as mentioned previously) do seem to be rising. I feel better in some ways, worse in others. I went from 395 T (April) to 654 T (November) and 17 E2 (April) to 33.2 (November). My White Blood Cell count remains low at 3.5. Whatās interesting is that post Tretinoin Cream, but prior to Saw Palmetto Extract (March 10th), I was 6.6 WBC. So, I donāt know if I was even higher before that. Either way, Iām curious how to raise that too. Itās almost out of range and I know for a fact it was higher on March 10th/pre-Saw Palmetto. I took Saw Palmetto April 3rd/4th.
All the symptoms you describe when you lowered E2 is exactly what I have now: Muscle loss, aching/popping joints/tendons, less penis sensitivity (in fact the underside of my penis is soft and spongy when erect sometimes, while the rest is hard, when this happens, ejaculations donāt give me much pleasure at all, I might as well be urinating, but not even that pleasurable, if that makes sense). Last but not least, I have VERY DRY skin and dry mouth. So, I really am starting to wonder if I should look into raising E2. What do you think? Preferably naturally of course, if thatās even possible.
Thank you again for all your information, @Cbrandel . This is INCREDIBLE!