How did you do this test, via a neurologist? Very high testosterone and epi-testosterone in the brain is interesting since that also came back in the pfs study. And i would think that that could explain our symptoms. People taking testosterone and feeling nothing would be logical if it basically cannot can get any higher than it is already is. I always have this feeling in my head, I would call it a sort of cramp. I alwasy think this is maybe some kind of flexing in the brain like what muscles would normally do in other places when you have high testosterone. My muscles would be insanely hard and easy to flex before pfs plus I was really strong. So I believe this feeling in my head is just an never ending flex because of the high testosterone in the brain.
I did this test through ZRT lab. All of these values are urine so it’s showing what the body is excreting of each. This is not necessarily showing what these values are in the CNS but they are still useful. I think that we as a community should have this same test done so that we can start collecting large amounts of data so that we can use to classify different cases. You cannot get this test through a doctor. You need to pay out of pocket for it. But at the end of the day it’s worth it.
Epitestosterone is also the bodies “natural” 5 AR inhibitor. This is a clue. Especially when considering that I have high amounts of DHT in my blood. So it appears my endocrine system is trying to reduce the amount of DHT getting produced by releasing high amounts of Epitestosterone and by binding most of the DHT that’s still getting produced evidenced by low DHT in my saliva. Saliva hormone levels show the amount of free hormone not getting bound before it hits the receptors
Could you please post the study that showed high epitestosterone and testosterone in the CNS of the PFS group. I agree with your point about testosterone or DHT not helping if it’s already high. But in those PFS cases where testosterone and DHT is low it could still help. I think that one of the biggest obstacles in finding effective therapeutic treatments is that there are different cases. This high VS low testosterone point is just one way example of having different cases. Our neurosteriod are probable all different as well. Check out my allopregnenolone. Mine is on the higher end of the normal range while yours could be on the lower end. High end allopregnenolone could mean that my GABAa receptors are down regulated or intolerant.
Your testosterone is above range and dht is mid range, Allo is high. Would you say your 5ar enzyme is functioning?
Gaba receptor dysfunction is possible.
Nice post , those are the tests everyone needs to have done.
That’s correct urine Allopregnanolone is high normal and urine testosterone and epiandrosterone is flagged high per these results
My blood DHT also tests in at either flagged high or high normal through different testing not posted here. And my saliva DHT also tests in low through different testing not posted here. Saliva hormone testing is believed to show the amount of free DHT not bound by SHBG. In other words the amount of DHT probable making it to the androgen receptors.
Based on the fact that repeated testing through blood and urine show my DHT either normal, high normal or flagged high I’m going to make an educated guess by assuming that my 5AR enzyme activity is allowing for ample testosterone to DHT conversion even though epitestosterone is high. This would mean my “DHT production” is normal if not high. It’s what’s happening after the DHT “floats” around my system attempting to bind to the androgen receptors that does not appear normal in my case. It appears most of it is getting bound so that it can’t bind to the receptors. It also looks like through high urine epitestosterone my endocrine system is attempting to reduce the actual testosterone to DHT conversion as much as possible even though there is still normal to high 5AR activity occurring.
I also agree with you that I think I may be suffering from GABAa receptor disfunction possibly in result of Allopregnenolone rising and staying high after the 5AR inhibitor left my system. I’m also flagged low in saliva preg sulfate which may further implicate the GABAa receptors.
Your right. Everyone here really should have this test done. Most doctors will not order this test because it goes beyond their scope of knowledge and because most insurances most likely won’t cover it. But that’s ok because we can get it through ZRT lab with out a doctors order. We just need to make an investment and pay for it like I did. In the next few days I’ll make a thread asking for help with organizing a massive collection of Data
I’m on ZRT’s website now. Which test did you do? They have a lot of options.
What will you adjust based on this?
It’s ZRT labs neurotransmitter test as well as the add on urine Allopregnanolone, 3a-diol and Epitestosterone test. Unfortunately ZRT lab will not sell these tests to patients. They require you to go through a provider listed on their website. But don’t do this. I went through a provider on their website and spent a lot by the time everything was done.
I’m developing my own way that will allow us to get the test for much cheaper then the other providers ZRT is contracted with. Without the need to pay to have an initial appointment with a provider on ZRT’s website. We just need the test and the data to decide what we want to do with it. We don’t need to spend thousands to be seen by a functional health doctor.
So far I discovered that I’m low in urinary serotonin through the neurotransmitter test. I used the recommendations that are auto generated in ZRT labs results to increase natural serotonin production which cured my constipation.
I’m looking to try additional recommendations auto generated in the results but I’m hoping other people will get the test done before I do. I need to see if certain patterns seen in my results suggesting GABA/Glutamate receptor imbalance are seen in other people’s before I try other things.
Here is some additional useful info on the subject:
Direct assessment of neurotransmitters levels on the central nervous system is not currently available in the standard clinical setting. However, urinary neurotransmitter level testing provides an overall assessment of the bodies ability to make and break down neurotransmitters representative of whole body levels. Generally, the enzymes, cofactors and precursors involved in neurotransmitters metabolism are the same in the central nervous system as they are peripherally.
Any luck on the cheaper ZRT knockoff test?
What did this urine hormone test cost you through Nutri Path ?
This urine hormone looks possibly better then ZRT’s urine hormone test in the regard that it tests for more urine hormone metabolites.
So I think it’s all useful information. We know that the hormones and metabolites in the urine is what the body does not want so it’s peeing what it does not want out. So for now the main thing I’m curious about is my highish Allopregnanolone in my urine, the flagged high 3a-Androstanediol (3a-diol) in my urine and my flagged low pregnenolone sulfate in my saliva. I’m wondering if these abnormal results in these three specific things are proof of a GABA/NMDA receptor imbalance.
Allopregnanolone and 3a-diol are potent positive allosteric modulators of the GABA receptors. Pregnenolone sulfate is a negative allosteric modulator of the GABA receptive and a positive allosteric modulator of the NMDA receptors.
So after looking at your results I notice that your urine Allopregnanolone is more or less in the middle of the reference range. So your body is not getting rid of high amounts of Allopregnanolone like mine is. So no pattern here.
But your 3a-diol is flagged high like mine is so we are both getting rid of high amounts of 3a-diol which is a positive allosteric modulator of the GABA receptors. So I really want to research this potential lead further and I’m still working at trying to figure out how to get others to get these tests.
My option will cost $99.00 USD for ZRT labs urine hormone test which is not testing for as many urine hormone metabolites that yours tests for. But it still tests for urine Allopregnanolone and 3a-diol which is the point. The bad news is that ZRT lab requires the selling of the $99 urine hormone test as an “add-on” to the $271 urine neurotransmitter test so it will cost $370 plus shipping to have this test done through ZRT. But for that price you do not need a doctors order, you can simply order it on line and you are getting all the urine neurotransmitter data as well.
The urine hormone test you got through Nutri Path does not include urine neurotransmitter data but still may be the better option for other people depending on how much it cost you and if you need a doctors order…
So as of now we both have high 3a-diol in our urine and I wonder if our bodies are getting rid of high amounts of this metabolite so that it will not agonize imbalanced GABA receptor through positive modulation.
What country are you in ?
To fully test my theory you would need this test so that we could know what your pregnenolone sulfate levels are. I can’t find any other lab that tests for pregnenolone sulfate anywhere. ZRT lab is the only one. ZRT lab will not allow Total functional health diagnostics to sell it on their behalf either with out a doctors order. For this particular ZRT test you have to go on ZRT’s website and use their find a provider search feature. I spent hrs of my time doing this and the cheapest ZRT provider I could find is this one:
You could email this company and they will sell you ZRT’s hormone saliva test that tests for pregnenolone sulfate for $389. I tried to find a cheaper way for this test and couldn’t in spite of investing a lot of my time trying to accomplish it.
If it turns out you are low in pregnenolone sulfate like me and because we already know you are peeing out high amounts of 3a-diol like me I would say we are onto something. Pregnenolone sulfate is a negative allosteric modulator of the GABA receptors and a positive allosteric modulator of the NMDA receptors. I believe I have a GABA/NMDA receptor imbalance which makes sense if I’m low in pregnenolone sulfate and pregnenolone sulfate is required for the bodies main inhibitory and excitatory system to function properly. So maybe my NMDA receptors are not performing their function properly for me because of lack of pregnenolone sulfates positive modulation and then my body needs the main inhibitory neurotransmitter GABA to match so it gets rid of high amounts of GABA’s positive allosteric modulator 3a-diol in the urine
Obviously if high 3a-diol in the urine is a not a common occurrence then it decreases the likelihood that I’m onto something here… but out of the two 3a-diol results we have yours and mine we are both flagged high. It’s a lot to ask for but If you could dig deeper and get ZRT’s saliva test done so we could see your pregnenolone sulfate levels it would be awesome
So yes I’m still at it
I found a way for it to only cost $99.00 USD for the urine Allopregnanolone and 3a-diol test. So that’s like absolute best case scenario price wise for getting this test done through ZRT lab. Anyone of the providers on ZRT’s website is going to charge some type of mark up on the urine hormone test so getting that for $99.00 is great. But the catch 22 is that ZRT does not let any of their resellers sell the hormone test solo. You need to get it with ZRT’s urine neurotransmitter test. So it still ends up being $370. But no doctors order and no functional health doctors appointment required. So it’s still substantially less then going through a doctor to get the tests ordered for you. And obviously as I’m sure you already know from reading my posts you can’t buy the urine neurotransmitter and the urine hormone test add on through ZRT directly off of their website. You have to go through one of their resellers most of which our functional health doctors who don’t just want to sell you a test kit. They want to “treat you” with out it going through insurance. So my option is the cheapest option for obtaining ZRT’s urine hormone test.
Then there is ZRT’s Saliva pregnenolone test
This test is even more difficult to obtain. Like ZRT’s urine hormone test you have to go through a ZRT reseller by using the find a provider link on ZRT’s website. But I found another ZRT lab reseller company that will sell ZRT’s Saliva pregnenolone sulfate test without a doctors appointment. But it’s not cheep. It’s $389. This is the company:
So here are the options with the way things stand:
Go through Ronnie’s company and get their urine hormone metabolite test which will include the urine Allopregnanolone and
3a-diol. We need to wait until Ronnie tells us how much this costs to know if this is the better option
Or use my option and get ZRT’s urine Allopregnanolone and urine
3a-diol test which is only $99 but requires the $271 urine neurotransmitter test totaling $370.
Again we need ronnies price he paid before we know if this is the better option.
Then for the pregnenolone sulfate test ZRT is the only lab that currently offers this test. So we have to go through them for it. And we as patients can’t buy it directly from ZRT. We have to go through a provider contracted with ZRT and the https://letourneaus.net](https://letourneaus.net/) provider is the only provider I can find that will sell it to us with out a BS expansive doctors appointment. I paid $500 for my initial appointment with the ZRT provider who ordered me this test which I paid $600 for. So what I have come up with although not as cheep as I wanted it’s still much cheeper then what I had to pay. By the time I had ZRT’s saliva test and ZRT’s urine hormone test done I had paid upwards to about $2800. So I don’t know i hope someone makes the investment and does this so we can see if I’m into anything that could further our understanding of WTF happened to us
Between my recent experience playing around with neurotransmitters by taking amino acids, thisisarealbummers recent recovery thread and silentpains sexual sides getting worse after taking an NMDA receptor antagonist this seems like the most promising path. I hope we can replicate abnormal pregnenolone sulfate In someone else especially in Ronnie seeing that like me we already know he has high urine 3a-diol
Ronnie got his urine hormone metabolite test from this Nutripath company in Australia . Nutria path is a ZRT lab reseller and they use ZRT lab to do the test. So Ronnie’s urine hormone metabolite test is the same one I had. Both are ZRT lab.
@Ronnie99 how much did the ZRT lab urine hormone metabolite test cost you through Nutripath? Did you need to get a doctors order ? Or were you able to simply order the test off of Nutripath’s website with out seeing a doctor? Are you from Australia? How much did the test cost you? Sorry for all the questions. I’m trying to figure out if the Nutripath company is the best option …
I noticed you haven’t completed the patient survey. When you have 30 minutes, could you please do so via the link at the top of the forum? It would be deeply appreciated and helpful for our research efforts.
I plan on getting it done soon
Ok. so anyone who is willing to test my theory by checking their urine allopregnanolone and
3a-diol can order the ZRT’s urine hormone test that tests for both of these. Click on test specialities, optional urine hormone ADD-ons and it’s the urine hormone ADD-on that tests for E2, Pregnanediol, Allopregnanolone, Androstenedione, Testosterone, Epitestosterone, DHT, DHEA & 5a, 3a-Androstanediol for $99.00 USD. Note that 5a, 3a-Androstanediol is what I mean when I say “3a-diol”.
As I previously mentioned any ZRT provider/reseller can only order this test for you though ZRT lab if you also purchase the urine neurotransmitter test. This is ZRT labs policy. ZRT lab will not run a dried urine sample for just the hormone metabolites because of their costs associated with running the sample. So the total cost is $371 plus shipping for both the urine hormone metabolites test and the urine neurotransmitter test. ZRT lab will use the same dried urine samples (4 through out the course of the day) to test both your urine hormone metabolites and your urine neurotransmitter levels.
Coordinating all of this was more or less a full time job but at least I successfully brought it to life. The opportunity to have ZRT’s urine hormone metabolite test without a doctors order, without completely breaking the bank and by simply placing an order on line. If anyone wishes to do this please keep this thread updated so that we can talk through supplying the urine sample per the kits instructions. It comes with detailed instructions but the instructions need to be followed to the T before, during and after supplying the dried urine sample so that we can trust the results.
It is my theory that if we could establish that peeing out high amounts of these things is common among PFS patients it could possibly change the way PFS is looked at and researched. Maybe it’s not the case that we just lack production of these things. Maybe we get rid of higher amounts of these things in our urine compared to non PFS patients for a reason. So for now I am not focusing on how to correct this if it’s true. I am focusing on finding out if it is true. We know it’s true in my own case and in Ronnie99’s case. Myself and Ronnie both pee out flagged high amounts of testosterone and epitestosterone. Generally speaking if testosterone is high in the urine or in the blood epitestosterone is also high. We know that Ronnie pee’s out flagged high 3a-diol. We know that I pee out top of the range 3a-diol and allopregnenolone. Ronnie’s urine allopregnenolone is normal but everything else I am focusing in on is matching up with my own and Ronnie’s.
@Ronnie99 seeing that we know your urine hormone metabolite levels already to fully test my theory we would need to know your pregnenolone sulfate level. The pregnenolone sulfate test is only available through ZRT lab in the form of a salvia test. Generally speaking saliva hormones levels are believed to show the amount of a free hormone not bound. So in this case I would rather have a blood pregenolone sulfate reading but no such test is available that I can find. I had ZRT’s salvia pregenenolone sulfate test done and I am flagged low in it. If you are also flagged low in pregnenolone sulfate this would be very interesting and may be proof of a GABA/NMDA receptor imbalance.
So its $99 for each test or total for the tests you listed?
Im interested in doing this
It’s $99.00 for ZRT labs urine hormone metabolite test that tests for the following urine hormone metabolites that Ronnie99 and I were tested for:
It’s $99 USD. The bad news is that you are required to purchase a $271 urine neurotransmitter test with it per ZRT labs policy. ZRT lab is the company/lab that actually receives the dried urine sample from you that you supply packaged up per the instructions, tests it and sends you your results. It would be nice to only need to spend $99.00 for what we mainly need to test this theory and to see if Ronnie and my own results can be replicated in someone else. But ZRT lab won’t allow it and they require this urine metabolite test to be purchased as an “add-on” to their urine neurotransmitter test. So it’s $99.00 for ZRT’s urine hormone metabolite test and $271 for ZRT’s urine neurotransmitter test totaling $370. It’s a pay pal transaction so you are protected from fraud.
Ronnie99 did purchase ZRT’s urine metabolite test through another company called “Nutri Path” which is a company that based on their website appears to be from Australia. So maybe wait to see if Ronnie99 responds telling us how much he paid to get the ZRT lab urine metabolite test through Nutria Path and If you need a doctors order to purchase it through Nutria Path. Or just simply order it with the neurotransmitter test for $370 plus shipping. If you are in the US it’s like 8 dollars for shipping and the box will include a pre paid shipping label to send your completed kit to ZRT lab
Thank you so much for getting the survey done, it’s very helpful for our research efforts.
I also just want to note I can’t participate in any self-experimentation as I recently had a major downturn I’ve just bounced back from.
I also note the total cost for this is $370. I’ll never tell fellow patients what to do - ultimately it is your money - but I would encourage you all to please read this thread first. It’s hard for any patient to fix something that we have little understanding of.