PFS Research

General Discussion Media & Awareness
#1

Hi Everyone,

As mentioned in previous posts I am off in a couple of days to be researched by a melbourne university and hospital team(Hospital is connected to medical unversity facility) (endocrinolgist, immunology researchers). I was wondering if you guys could help me out with some information, rather than scurrying through every thread on the forum (which i’ve probably done anyway).

Can you guys help me out with a couple of these questions, to keep me up to date i’ve read the FAQ.

What are the most consistant problems with blood work? (i.ie low test, 3-adiol-g)
What are the most sucessful treatment options? What treatments don’t work?
What treatments provided a short-lived recovery?
What is the most up to date theory?
Has anyone restored androgen levels?
What would you expect to see in blood work once recovered?

Any possible paper work or research would be greatly appreciated, As I wanted to present the team with updated information so we are not going over old grounds.

Any questions you’d like me to bring forward to the researchers, Please take the opportunity to do so.

Any questions regarding doctors/hosptials/universitys. PM Me.

Cheers,

#2

imao everything is very confused and uncertain since now. researchers r still exploring

maybe u coul ask to mew if is possible to get contacts between university hospitals and researchers.

but i guess that now the research has to be finished and published before any new cooperation

#3

All the information you are asking is readily available on this site. Take a few moments, use the search function and print it out/take notes. Mew or Awor are best equipped to answer these questions but of course none of the information regarding the Italian study can be made public until it is published.

–Most all sufferers seem to have out of range low 3 a-diol G and barely in range vit D.

–PFS is NOT a matter of balancing hormone values. Matter of fact for most us the values are almost meaningless.

–Most “up to date” theory would be that there is some issue with gene expression pathway for the AR gene and it’s dependent genes. Since it has been proved time and time again that epigenetics can be effected by changes in the environment this seems plausable. Which genes are effected and where along the pathway is the problem. Methyation? Hypo or Hyper? Is the AR producing a working protein?

–It’s difficult to say what to expect to see on bloodwork if someone was treated succesfully since many of us had no health issues prior to Fin and therefore little or no lab record. But, I think you’d want to see a normalization of 3 adiol-G that would make sense with T levels and an in range vit D level.

I would imagine if they are seriously considering a research program Mew or Awor would allow them memeber access to the website to search for these things and view these theories as long as it doesn’t interfere with the research team they are already working with.

#4

What are the most consistant problems with blood work? Low 3-Adiol-G, Low Vitamin D, Low 5-Alpha Reductase Type 2 Urine metabolites, maybe abnormalities with liver tests as well (bilirubin)

What are the most sucessful treatment options? What treatments don’t work? Nothing really.

What treatments provided a short-lived recovery? Some people have short recoveries with everything from TRT/clomid to fasting.

What is the most up to date theory? See Awor.

Has anyone restored androgen levels? ??? Restored what? You are assuming that ALL of us here have low testosterone? My testosterone is 866 (250-1100).

What would you expect to see in blood work once recovered? Normal/high 3-adiol-g, normal vitamin D and 5AR2 urine metabolites.

#5

@ Pecker:

Well said!

#6

I can just second this: Read awor’s posts. He outlines the current main theory about PFS.

#7

I’m glad you mentioned there is an immunologist taking part in this research. I’m not confident that we have ruled out any auto-immune type disease brought on by the drug. Remember, many of us had a rash develop as some point.

Also, imo it may be best to not collaborate with Awor’s research team. They are looking at the androgen insensitivity angle, it may be best to approach this without any bias. The people in melbourne may find something new that the people in italy missed.

Also, maybe you can send a message or write a post to get all the members in Australia involved.

#8

Propeciashiz, please share this information on PFSers with your research team:

  • The very different recoveries of IHP (Ihatepropecia 702), muscleman, worried + “functional recoveries” of golf, quint and enden (TRT)

• Ihatepropecia702 - Nystatin first and foremost + anti-pathogenic herbs, enzymes, & prostate/lower-body cleansing herbs Caveat: he is 100% recovered sexually, but still suffers from brain fog.

• Muscleman - ayuverdic liver and prostate herbs and close to zero masturbation. Caveat: he took Ganoderma, Saw palmetto + other 5ar inhibitors, not finasteride[Size=4]
Yeah, I know he’s controversial, but I’ve exchanged tons of emails with him offline where he did not plug anything, just explained in great detail what’s been going on. He is currently on no herbs and maintains his sexual recovery[/size]

• Golf, Quint & Enden - TRT with dialed-in T to E ratios. Caveat: all report no return of semen/ejaculate volume.

• Worried - porn/fantasy abstinence or “reboot” of dopamine pathways per yourbrainonporn.com/erectile-dysfunction-question

• JG - recovered after 8 weeks of Tamoxifen. Stayed recovered for 3 years until taking an ACTH provocation test with Dexamethasone. Then completely crashed. Also has diagnosed protatitis and pudendal neuropathy as outlined below.

  • high incidence of testicle and prostate pain/discomfort + diagnosed prostatitis, diagnosed/cultured infections

  • 12+ PFSers with diagnosed pudendal neuropathy (tissue inflammation and edema of branches of the pudendal nerve or nerve compression). Including: Blasé, Venceremos, JG, Claro by a neurological team in France. Neuropathy diagnosed in Tlecum and Voice by another, U.S. doctor. And similar diagnosis by a different doctor for Frustrated.

  • prevalence of skin and bowel issues + infections found in stool

  • insomnia / sleep issues are common

  • frequent subpar adrenal / thyroid values

  • anecdotal improvements or mini-recoveries on antifungals, anti-estrogens, cipro/cortef combos, etc.

#9

I agree with much of what xhorndog said except I am extremely skeptical of the supposed recoveries.

#10

Tell them to review the Finasteride studies section:

viewforum.php?f=8

Forward them copies of Dr. Traish and Dr. Irwig’s papers.
onlinelibrary.wiley.com/doi/10.1111/j.1743-6109.2011.02255.x/abstract
onlinelibrary.wiley.com/doi/10.1111/j.1743-6109.2010.02157.x/abstract
onlinelibrary.wiley.com/doi/10.1111/j.1743-6109.2012.02846.x/abstract

Note comments by other professionals dealing with the issue:

Dr. Alan Jacobs
blog.alanjacobsmd.com/alan-jacobs-mds-blog/2010/04/a-neuroendocrine-approach-to-finasteride-side-effects-in-men.html
blog.alanjacobsmd.com/alan-jacobs-mds-blog/2010/06/the-plot-thickens-along-with-the-hair-when-you-mess-with-dihydrotestosterone.html
blog.alanjacobsmd.com/alan-jacobs-mds-blog/2010/06/a-proposed-mechanism-for-prolonged-sexual-side-effects-from-finasteride.html

Dr. Irwig:
"Further valuable research could determine who would be susceptible to finasteride through genetic studies of polymorphisms of 5a reductase and the androgen receptor. "

Dr. Crisler:
viewtopic.php?f=27&t=6746&p=58832&hilit=crisler+resistance#p58832
viewtopic.php?f=22&t=2551

The below is on homepage of Propeciahelp.com

Dr. Traish:
"In a 2011 study review in the Journal of Sexual Medicine, lead researcher Abdulmaged Traish, Ph.D., and his colleagues outlined extensive cause for concern. They concluded that animal and human studies strongly suggest that finasteride isn’t limited to its target tissues but in fact can reduce DHT in many tissues, potentially affecting not only nerve-signaling pathways in the penis but also the ratio of male-to-female hormone levels circulating through a user’s body. One study Traish cites found that men taking 1 milligram of finasteride daily had significantly higher levels of estradiol—the predominant female sex hormone—than men taking a placebo. Just as worrisome as the possible effects in body tissue is the growing evidence that finasteride can enter a man’s brain and disrupt key chemicals therein.

As Traish’s study review details, once finasteride reaches brain tissue it affects the production of more hormones than just DHT. At particular risk, Traish believes, are neurosteroids—brain chemicals that play a role in reducing anxiety, enhancing memory, regrowing brain cells, and helping us sleep.

There’s yet another issue for men who already find themselves battling feelings of despair over their dissipated sex lives: At least two studies have shown that finasteride may cause the onset of depressive symptoms. And last year, researchers in Germany found that the drug inhibits the growth of new neurons in the brain’s hippocampus ; this type of neurological “failure to thrive” has also been documented in people who suffer from clinical depression.

“The percentage of affected men may be small,” acknowledges Traish, a researcher in the biochemistry and urology departments at Boston University’s school of medicine, “but our research definitely concludes that PFS is real. For a subset of these men, the damage persists—maybe forever—even after they go off the drug. We don’t fully understand why, but it is as if something shuts off biologically, and stays that way.”

Dr. Goldstein:
“At the end of the day, because sex steroid hormones are critical for genital organ structure and function, depriving young men of a critical sex steroid — dihydrotestosterone — affects sexual function.”

"… The 5 alpha reductase enzyme ALSO metabolizes progesterone to 5 alpha-dihydroprogesterone and deoxycorticosterone to 5 alpha-dihydrodeoxycorticosterone. And in the brain, the products of 5 alpha reductase inhibitors are transformed by another group of specific enzymes known as 3 alpha-hydroxysteroid dehydrogenases, which reduces 5 alpha-dihydrotestosterone to 3 alpha, 5 alpha-androstane 17b-diol (3a-diol), and 5 alpha-dihydroprogesterone to 3 alpha, 5 alpha-tetrahydroprogesterone (allopregnanolone). Similarly, 5 alpha-dihydrodeoxycorticosterone is further reduced to 3 alpha, 5 alpha-tetrahydrodeoxycorticosterone. " [THDOC]

"Theoretically, these important neurosteroid derivatives are UNNECESSARILY LOWERED (collateral damage) by 5 alpha reductase inhibitors for hair loss. These reduced important neurosteroid derivatives are thought to function in the central nervous system with important physiological functions including modulation of gamma aminobutyric acid type A receptor, sigma receptor function, nicotinic acetylcholine receptor, voltage gated calcium channels, and synaptic and brain plasticity.

“To translate into clinical terms, these physiological functions may impact mood, rhythm, stress, sleep, memory, anxiety, and sexual function.”

#11

I would say, by all means, give them objective information like the pathways that finaseride affected such as:

…but I agree that they should draw their own conclusions rather than being biased by other scientists’ suppositions. We need qualified professionals looking at this problem with fresh pairs of eyes. Explain the symptoms, the wide range of variable details and supposed recovery pathways, and see what they come up with on their own.

#12

This guy (muscleman/musulman/saladin) is a famous self-confessed internet troll. A true freak. Avoid at all costs. (for a disturbing read see: musclechatroom.com/forum/showthread.php?17870-Confessions-of-a-Troll) You also mention ‘Worried’ who is another odd-ball who never used Finasteride and is just posting all over the internet about masterbating.

#13

Thanks everyone for providing me with this information. For any more info on studies shoot me a pm. These paper provide awareness and “discussion” but don’t support much scientific evidence. Though Dr. Alan Jacobs seems to have a more educational approach rather than “discussion and surveys”. I look forward to letting everyone know’s how it goes. Further more i’d like everyone to remain open minded because though these doctors are reptuable there are only few listed that have taken the time to write about this, there has really been no scientific studies posted on PFS and it’s action. I think there is one problem causing a chain reaction to us, so we are starting off with the action of inhibiting 5AR2 and why we got messed up to begin with and comparing my blood results and extensive testing. I’m working with some high up pro’s here, so very luck to have my hands on an immuologist and endocrinolgist, mind you who have done some pretty big studies, will give you some more info further down the track.

Fingers crossed.

#14

Wow, what a pathetic weirdo. Ok, scratch that one. For what it’s worth, I’ve met IHP and JG in person, and they’re legit dudes. Guess I can’t vouch for anyone else, although I’ve been talking to Golf for a long while and don’t think he’s a troll either. lol

#15

Sorry, but something is a bit unclear to me. Are they talking about setting up an actual research project or is this just a group of doctors getting together to discuss your particular case? I’m not trying to be sarcastic. It’s pretty standard procedure at hospitals for department heads to get together when they are having difficulty diagnosing a problem to bounce ideas off eachother. If they were interested in a actual research project I’d guess they would have contacted Mew or Awor for all the basic info so far, possible patient recruitment, etc. Sorry if you already clarified this and I missed it.

Thanks

#16

Yes it’s a research project. Obviously they have bigger projects they are working on at the moment. I am luckily enough to have the connections to get this rolling. Without being offensive yes Mew and Awor are highly educated and have the connections regarding PFS but no medical professional would go “Yes lets contact those guys from the forums” they are the professionals and are highly aware there is a problem.

I will post you more information once i’m done on the first day of being a guinea pig. I knew there would be neyseyers, but if i have missed anything it’s because i won’t know till the day.

Having an extensive team of doctors to meet me at the best facilities in my state is something pretty special. They are researchers. I will link you all there details at a later date.

#17

I think cortisol related theories are interesting too:

  • Some problem with the glucocorticoid receptor, so we end up not using the thyroid hormones properly and end up with hypothyroid symptoms, even though our thyroid tests are normal.

  • If the androgen insensitivity proves right, then it affected cortisol management in our bodies because testosterone helps regulate cortisol in men. If we became insensitive to testosterone, we have women’s cortisol levels now.

At least they seem to make sense in my case. I improved tremendously after i used glucocorticoids for alergies. I even had two periods of total recovery, but they gradually ended.

Good luck!

#18

I guess I meant if this would be a full fledged project they will need a large sample size and the forum is the only place I know where you’d be able contact enough patients to have a workable sample. Of course Mew and Awor would also be able to provide a huge amount of background info since they’ve been involved with PFS more than anyone else hands down. If this gets underway hopefully all the guys down there can participate. As we’ve all found out such projects take months and maybe years of organizational work to get underway. So, I guess I’m surprised this popped up out of the blue and maybe a bit leary to get my hopes up. Of course any interest like this is great news. Looking forward to hearing all the details when you get back.

#19

Friend you dropped your hair while taking this glucoesteroides?

#20

Yes, even my hairloss got faster.