After months of reading I'm finally posting....

Member Stories
#21

do you have the results from the urine panel in front of you?
calculate the ratios as in the paper Diagnosis of 5aRII deficiency. See where you are.
otherwise i relate to some points you said. i also start to assoiate things o my condition since i found this forum. staying objective is important.
however, getting the tests done, to confirm on to not cofirm is important too. we sit in the same shit and need to pull the same string.
take a break from all this but think about the testing.

good luck to you

#22

annonnn1, I got it tested. It was low. The thing is there is not a scientific consensus on the significance of it.

nature.com/jid/journal/v119/ … 1659a.html

“Clinically, it is still controversial if serum levels of 3alpha-Adiol conjugates (3alpha-Adiol glucuronide or 3alpha-Adiol sulfate) serve as reliable indicator for cutaneous 5alpha-DHT formation (see later,Lookingbillet al, 1988a;Horton, 1992;Vogt et al, 1992), or are just a marker of adrenal steroid production and metabolism”

I calculated the ratios. The problem is with the paper is that the limits and ranges and methods that they used probably don’t correspond to our lab results. You have to remember that all of these things are different from lab to lab. Based on the ranges that they used, I was a little low on one ratio. Again, I don’t think I can apply their results to my lab data.

If you guys are interested here are my labs and such: propeciahelp.com/forum/viewtopic.php?t=2859

I don’t think there is anything else I can do with tests. I just did another urine profile for Dr. Crisler, since he wanted to monitor my cortisol levels. I’ll post it once I get the results.

One thing that I have been thinking about is that all of us are too emotional and close to the problem in order to try to treat ourselves. It is easy to jump to conclusions, make associations, obsess, when looking at data or info. I think it might actually be worse in trying to treat ourselves rather than waiting and raising awareness. Of course we should all get labs done just to see, but I don’t think we are in a position to interpret the data. Have to trump up support from 3rd parties that can look at our problem objectively.

#23

I agree mystory. Myself, I’m going to see an neuroencrinologist and Dr. Crisler. I think it’s important that he has as many sufferers on paper as possible, since he is one of the best who can try to help us.

He seems like a very caring man who wants to do good for us.

Stay strong, we will get better…this may take 6-12 months or a couple more years, but we are making progress…Stay STRONG and LIVE HEALTHY…

After we get better, then we can focus on the compensational damage this drug has done to us, and maybe if we all work together…pitch in some money, we can muster enough funds to take this to court, have some lawyers on our side, and civilly sue Merck. All I want back is the amount of capital I invested into trying to get better. That’s all. Just think, if we could get 100 individuals to donate $1000 a piece, that is a 100,000 we can use for legal costs…Think about that for a minute…

Stay strong!

#24

Hey guys sorry if i offend anyone but i have to disagree,

Are we too close to this problem? possibly. Do we have a choice? no.

I’m not saying that doctors can’t help us, i think the input of experts into this problem is invaluable but i am not gonna sit back and wait for someone to cure me. I know it’s far from ideal but i think we have to do this ourselves. waiting… why? as far as i’m concerned we need to get this sorted NOW i don’t want to miss another moment to this fucked up illness.

No disrespect to Crisler, i’m sure he is an expert in his field and as you say a caring man. but does that mean he has the answers?

The one question i would like to ask Dr. Crisler if i saw him was, “You have alot of propecia patients, how much research have you done into this specific condition? i’m not talking about using the knowledge you already have in treating steroid users and low testosterone males, how much have you looked into the issues and causes of this specific condition?”

#25

Hey,

There is no ‘cure’ to the problem. I accepted 5 years ago that I’d be on drugs for life.

I think some people here haven’t accepted this yet.

Can someone play Devil’s Advocate and respond to this statement…

" It makes sense that Drostanolone (Masteron) is the basis to a ‘cure’ to the underlying hormonal discrepancies, specifically low Adiol G"

JN

#26

What?

Man, why are you trying to destroy everyones hope? Alot of people get better from this with out any sort of intervention at all, so why do you say that it can’t be cured?

Look, i know that you have been hit harder by this than just about anyone on this forum, but that doesn’t mean that everyone should just accept that they’re never going to get better, how is that going to help anyone?

We need to keep researching, keep looking, and find the solution. The truth is we aren’t even entirely sure where the problem is, so how can you be so quick to say it can’t be fixed?

If (as Adiol G test results seems to suggest) the problem lies with 5 alpha reductase activity isn’t that where we should be focusing our efforts?

#27

It’s not, at all.

If I were to accept that, I would not have made the huge strides I have made in the last two and a half years. I was really bad too, especially neurologically, but my sexual problems were still probably just as bad. And now, today, at any given time, I’m around 85-95% better. I am a better and healthier person because of what I’ve done.

I feel bad that sufferer2001recovered2009 has to be on drugs for life. But still, you can’t knock peoples hope. Well, I mean, you can if you want, but it is a major component of being able to move on and have a life. Without it, man, it’s rough a road.

I’m happy every day that I’m not on TRT or ANY drugs for that matter. It is possible, you just have to DO IT. Not talk about it, not think about, Do it. Your body will eventually heal, either a little, or alot, but it will get much better. There are variables that make each person different, but not trying when results are being had by more then one person, is just crazy to me. Some people would call 95% a cure. I’m just glad to be alive again and if I wouldn’t have persevered who knows what would have happened to me.

We don’t know that there is not a cure. Obviously I have had quite a different outcome than sufferer2001recovered2009. So to say this, just isn’t true.

#28

Mystory, hang in there.

One minor point - the ratios of the 5a to 5b metabolites are just that - ratios. It does not matter at all what units the concentrations were reported in as they cancel out. Therefore the ratios are valid no matter what.

The debate on the signficance of adiol-G has to do with the location of 5AR2 activity (skin vs testis for example), not whether the basic reaction and resultant metabolite form or not. At least, that is what I gather from it.

Have you had IGF-1 tested?

#29

Mystory, why did you “just stop” taking DHEA because you got breast pain? Did you ask your doctor why you got this before you stopped? This could have simply been your estrogen going up due to the DHEA.

#30

Hey guys,
just wanted to post an update and state that I’ve finally recovered after about three years of stopping. The testicular pain is gone, I can have sex several times a day, and I’m doing really well academically in my field. I’m really healthy and the leanest I’ve ever been in my life.

I just want to tell everyone to stay positive through this. I know I had some major downs and it’s easy to get hung up on that. Once you get hung up it’s really hard to come out of it mentally to get your confidence and life back but it’s doable.

i won’t be checking in often so if you ask any questions don’t expect quick responses.
good luck everyone!

#31

congrats …

any tips!!!

#32

staying positive and not letting this take a psychological toll is probably the most important thing. You don’t want to let it consume you.
Other than that, just try to live a healthy lifestyle and eat well balanced meals. I find that exercise, running and, strength training have a positive effect on the way I feel.

#33

Absolute nonesense.

#34

Awsome!!! I´m very very happy for you! Now enjoy you life again and do everthing that you have missed!!

#35

I am wondering … did you ever have gyno, genital shrinkage, genital numbess, fat redistribution etc. ?

#36

I guess no shrinkage, lucky one

#37

mystory - 3 years to recover from mild erectile dysfunction and low desire by the looks of it. Well done, but that’s a pretty devastating benchmark for many of us with 20x more symptoms than yourself.

#38

any recovery is a recovery! And it shows recovery is possible!!! Im realy sick of reading, how people makes everything down. Im happy for him!