PFS Sufferer -- help with 23andMe?

[Koni]

Hi. I took finasteride (aka propecia or proscar) medication for years and suffer from persistent, debilitating sexual dyfunction years after discontinuation. There are lots of poor unfortunate young men like me here: www.propeciahelp.com. The condition has been termed PFS (Post Finasteride Syndrome). TRT and hormones and tons of conventional therapies have not worked for us, and recoveries are rare and unclear. Other symptoms include lethargy, brain fog, immune issues, etc.

It's been determined that finasteride is "oxidative stress in a pill" and many of us PFSers are discovering issues with MTHFR, glutathione depletion, etc. Finasteride lowers DHT, a powerful male hormone and antioxidant. This appears to have an effect on our androgen expression / androgen receptors. It's a vicious cycle.

To further elaborate on my symptoms: I am in an impotent state with virtually no brain-to-penis connection, lack of penile sensitivity, lack of butterflies, lack of arousal, lack of lust/libido -- total disconnection from the opposite sex. I find girls beautiful, but something is missing -- this is the common thread with all PFSers.

Any advice on supplements / treatment / approach? Thank you!

Gene & Variation​

​

 

[Koni]

 

[caledonia]

Can you post your detox SNPs too? You can run those through Genetic Genie as well.

 

[Koni]

 

[Valentijn]

Koni - There's really not much going with those SNPs. Methylfolate and MTR recycling might be a little bit slow, but it shouldn't be enough to cause problems. Based on the methylation results, the very most that might be indicated is supplementing normal doses of B6, folate, and B12, basically what you would get in a B-complex or multivitamin.

There are other methylation gene variations which could be relevant listed at:
http://forums.phoenixrising.me/index.php?threads/interesting-mthfr-variations.24543/
http://forums.phoenixrising.me/index.php?threads/interesting-mtr-variations.24572/
http://forums.phoenixrising.me/index.php?threads/interesting-mtrr-variations.24551/
http://forums.phoenixrising.me/index.php?threads/interesting-cbs-variations.24492/
http://forums.phoenixrising.me/index.php?threads/interesting-bhmt-and-bhmt2-variations.24512/
http://forums.phoenixrising.me/index.php?threads/interesting-ahcy-variations.24498/
http://forums.phoenixrising.me/index.php?threads/interesting-acat1-and-acat2-variations.24494/
http://forums.phoenixrising.me/index.php?threads/interesting-vdr-variations.24480/
http://forums.phoenixrising.me/index.php?threads/interesting-comt-variations.24672/

Another option is to "go fishing" for rare SNPs you might have with a rare allele analyzing program. I've got more info about one we put online just yesterday at http://forums.phoenixrising.me/index.php?threads/download-for-rare-snp-analysis.24983/

 

[August59]

Hi. I took finasteride (aka propecia or proscar) medication for years and suffer from persistent, debilitating sexual dyfunction years after discontinuation. There are lots of poor unfortunate young men like me here: www.propeciahelp.com. The condition has been termed PFS (Post Finasteride Syndrome). TRT and hormones and tons of conventional therapies have not worked for us, and recoveries are rare and unclear. Other symptoms include lethargy, brain fog, immune issues, etc.

It's been determined that finasteride is "oxidative stress in a pill" and many of us PFSers are discovering issues with MTHFR, glutathione depletion, etc. Finasteride lowers DHT, a powerful male hormone and antioxidant. This appears to have an effect on our androgen expression / androgen receptors. It's a vicious cycle.

To further elaborate on my symptoms: I am in an impotent state with virtually no brain-to-penis connection, lack of penile sensitivity, lack of butterflies, lack of arousal, lack of lust/libido -- total disconnection from the opposite sex. I find girls beautiful, but something is missing -- this is the common thread with all PFSers.

Any advice on supplements / treatment / approach? Thank you!

Gene & Variation​

​

You may find some helpful advice on this forum as they have been preaching finasteride as having long term side effects for years:

http://www.allthingsmale.com/forum/forum.php?s=d6a27b9e32e0e0ea16b735c1cd2064f7

 

[caledonia]

Your methylation SNPs don't look too bad. There would be some problems with folate and B12, but not horrible. Your BHMT or secondary methylation pathway is fairly gummed up. But the primary pathway should be able to compensate for that. But anyway, this would still cause some reduction in glutathione production, which is the major way the body detoxifies toxins.

For your COMT / VDR combination Yasko suggests hydroxycobalamin, adenosylcobalamin and methylcobalamin, but with less methylcobalamin.

For your detox SNPs, interestingly, your CYP3A4 SNPs which are the ones which would specifically detoxify finasteride, are fine.

You have some CYP1B1 SNPs which would suggest problems detoxifying estrogen, i.e. estrogen dominance. This is applicable to both males and females, and can cause estrogen related cancers such as breast, uterine, or prostate.

CYP1A1 detoxifies smoke. Detoxigenomics doesn't show CYP1A2, so I'm thinking this might be an error in Genetic Genie, and it was actually meant to be CYP1A1.

You have a couple of GSTP SNPs which means you would require more glutathione than the average person.

The CYP2C19 and CYP2D6's detoxify other medicines.

=-=-=-==-=-
So based on this, I'm thinking that glutathione depletion is your major problem. Glutathione is required by the HPA axis organs/glands for signalling. This would impact hormones. Around here we usually see this as thyroid and adrenal problems, but why not other organs/glands? DHEA is required for sexual functioning/libido and lack of it kills libido. DHEA is produced by the adrenals. Lethargy, brain fog, and immune issues would fit right in with this.

I've personally had a 50% improvement in thyroid and adrenals from doing methylation, which corroborates this hypothesis. So I'm thinking a straight up methylation program to increase glutathione would be the thing to do.

I'm also seeing some google hits on finasteride and leaky gut. Immune problems would go along with this as most of the immune system resides in the gut. If you do have leaky gut, you need to treat that before doing methylation or your magnesium and/or potassium will start leaking out at a high rate and this can become dangerous (this is where I'm at in my treatment right now).
=-=-==-=-=-

So a complete program would be something like this - check for leaky gut with an intestinal permeability test or do a stool test to see if you have any gut pathogens or imbalances. If so, then do a 4R gut rebuilding program.

Then you can do a pretty straightforward methylation program such as Rich Vank's or Yasko's simplified methylation protocols. Or you can simply do a good B complex with methylfolate and not folic acid, some TMG for the BHMT pathway and then a sublingual B12 of the forms I mentioned above. The B12 has to be sublingual or an injection to bypass the gut. The B12 contained in the B complex or multivitamin will only absorb about 2% so it's almost worthless.
Ben Lynch via Seekinghealth.com makes some good vitamins with active ingredients and the least amount of cheap fillers.

I like liquid B12 drops because I often need to subdivide things into very tiny amounts, so that works better for me than a lozenge you suck on. Yasko sells liquid B12 drops in all three forms on her website holisticheal.com.

=-==-=-=
For the detox SNPs, the general recommendation is to eat your veggies and fruits and avoid toxins. For CYP1B1 you can do DIM or IC3 to help with the estrogen dominance.

Doing methylation will help with creating more glutathione for those GST SNPs. Taking glutathione as a supplement may or may not be helpful, and may not be tolerated.
=-==-=-=

There may be other environmental things in the mix such as toxic metals. Mercury and lead are very common ones to have due to mercury fillings and general pollution (or leaded gasoline and paints if you're old enough). These can gum up methylation even if you don't have MTHFR type SNPs. Gut pathogens can also hold onto metals, which is another reason to look at the gut. When you start doing methylation supps any metals that you have will start to detox, and you may start to feel worse. If this happens reduce the supps to a level you can tolerate.

Watch the Methylation Made Easy videos for more info. I also have a bunch of links in my signature which should be helpful.

 

[Koni]

Thank you all for your comments. Really quick, as I digest all this material:

-I was negative for leaky gut when tested.
-I do have positive tests for elevated mercury and lead (Genova NutrEval and Hair Analysis). No current mercury fillings.
-I'm awaiting Methylation Pathways testing results (which I'll post) to evaluate what performance actually is
-My serum B12 has been quite high the last several years. Serum MMA is low, indicating that B12 is likely OK.
-I have high DHEA. Chronically low T, low DHT --- none of the propecia / hormone - related boards can really help here, we've all been around in circles a million times. (on this note, the google results for finasteride and leaky gut are likely just one of the zillion theories PFSers have posted)

So...in essence, you're suggestion is to do basic methylation....I've already acquired Solgar Folate and Enzymatic Therapy B12 (methyl). I'm contemplating doing a Wilson (Mineral/Nutritional Balancing) program, complete with coffee enemas and sauna therapy which has helped a couple of PFSers. I'm looking to support the program with methylation as dictated by the results.

Thanks!

 

[futuritycarpaccio]

Hi Koni, any news?

I also took finasteride once.

 

[Outlaw]

@caledonia

Your advice to this gentleman is spot on, big respect to you. I have read your guides and they have had a tremendous impact on my health.

I have been hit with severe Post Finasteride from a single pill, and it's exactly the plan I have settled on:
1) Treat the gut
2) Adress methylation
3) Once adrenals are stronger, chelate metals with the Cutler protocol


My gut tests showed Streptococcus overgrowth, H-pylori, leaky gut, H2S Sibo and lack of beneficial strains. Those issues can absolutely hinder mitochondrial health, methylation function stimulate the immune systeme and silence androgen receptors.

My tests also showed CBS upregulation. I suppose this is caused by the dysbiosis, the gluthatione depletion or heavy metals. I had: high ammonia, high taurine, high B6, low homocystein, elevated liver enzymes. I have followed your posts and Yasko, and I followed a sulfur free diet, while supplementing with ornithine and molybdenum.

3 months later, my ammonia is 50% reduced (now in range), my homocystein went up (now a bit high), and my B12 lowered. I think this is amazing news, as it proves the CBS is being relieved! I am now starting a gut healing protocol for my SIBO.

Anyway, I just wanted to say you were spot on, and I wanted to leave that trail in case it could help some people.

I was also wondering:
1)
Do you think it's normal that my B12 lowered a bit after relieving the CBS? I'm going to take Hydroxy for that

2)
My serum B6 is still 3x over range, and keeps increasing. I am suspecting a functional deficiency, since my OAT markers show low B6. However, my doctor told me that the accumulated B6 can still be toxic despite the deficiency, so I would like to adress that. Dr. Rostenberg says high B6 can be caused by bacterial overgrowth or lysine deficiency. It could also be caused by low cofactors (B1, B2, Zinc). Do you have any other ideas why that would be the case, and how to treat it?

 

[caledonia]

@caledonia

I was also wondering:
1)
Do you think it's normal that my B12 lowered a bit after relieving the CBS? I'm going to take Hydroxy for that

2)
My serum B6 is still 3x over range, and keeps increasing. I am suspecting a functional deficiency, since my OAT markers show low B6. However, my doctor told me that the accumulated B6 can still be toxic despite the deficiency, so I would like to adress that. Dr. Rostenberg says high B6 can be caused by bacterial overgrowth or lysine deficiency. It could also be caused by low cofactors (B1, B2, Zinc). Do you have any other ideas why that would be the case, and how to treat it?

Hi @Outlaw,

I'm glad you've found my guides helpful. I wrote them so long ago, that I don't remember the details any more.

This page suggests that high B6 is ok as long as it's from the diet, and not from supplements.
https://healthmatters.io/understand-blood-test-results/vitamin-b6
You could go by symptoms to help determine if it's actually high or low. For example, you have many gut issues, so that would suggest your B6 could actually be low.

Make sure you're not taking a supplement that has B6 in the ingredients.

For SIBO, taking phosphatidylcholine is supposed to help. The bacterial overgrowth is supposed to be caused by a low bile situation. I use Seeking Health brand phosphatidylcholine. I have biliary dyskinesia (very low bile flow) and was getting gallbladder symptoms. That has been a great supplement for me. I'm PEMT +/+ and gallbladder stuff runs in my family, so that all makes sense.

Also, check on what Cutler has to say about how to supplement for the various issues you're having. His suggestions have been pretty spot on for me. Check his Amalgam Illness book or ask on one of the Cutler forums.

Just getting in the Core Four (magnesium, zinc, vitamin E, and vitamin C) might be helpful as those are all inhibited by mercury and run so many processes in the body.

In general, the Cutler groups encourage people to not mess around too much with propping things up with supplements, as that can be a never-ending battle, and to get on with chelation.

For example, I never was able to take traditional adrenal supps, so I just concentrated on replacing electrolytes that were leaking out. Now after 56 rounds, I finally need and can tolerate a bit of adrenal cortex (1/32 of one pill every other day).

 

[Outlaw]

Thank you very much @caledonia , I will look into that!!

Indeed I have many B6 deficiency symptoms so that's probably what's going on. However, I don't understand why you say diet is fine but supplements aren't. In both cases, it leads to high serum B6 which could be toxic no? On the flipside, it's true that I have no neuropathy symptoms despite my high levels.

And as for my 1st question, do you know if those reactions are normal when CBS slows down. I think it's the case, which would be great news since this was the goal, but I'd like to have some confirmation.

Hopefully I don't bother you too much! Thanks a lot

 

[caledonia]

@Outlaw

#2 - google "does dietary B6 cause neuropathy?" and you'll see lots of articles from authoritative sources that supplemental B6 can cause neuropathy, but dietary B6 doesn't. Supplemental B6 is a mega dose compared to what you can get from your diet. So I think the issue is not the source of the B6 per se, but the amount of the dose.

#1 - I did some more googling and couldn't get anywhere with it. My suggestion would be to ask Ben Lynch, if you can figure out a way to reach him. Like maybe on his Strategene or Dirty Genes groups on Facebook. There may some more knowledgeable people on there too.