Spent a number of hours surfing the net reading research papers on all things related to KD. One observation that I have concerning gynecomastia thus far (and perhaps this is over simplifying it), but if testosterone has no way of binding with androgen receptors, due to an insensitivity or mutation, does the resulting elevated level of estrogen contribute to gynecomastia? As a result, the excess unbound testosterone builds up in the cells causing the neurotoxicity condition of KD. Is that correct?

If that is correct then it would stand to reason, short of a cure, there must be certain lifestyle choices one could make to reduce excess testosterone by way of nutrition, supplementation, or avoidance of certain drugs.

Along that line of thought I’ve came across several articles that discuss how certain OTC drugs may contribute to gynecomastia. What caught my attention within these articles is that the anti-inflammatory OTC drug Motrin can contribute to gynecomastia. Not sure ‘if’ or ‘in what way’ these OTC drugs may contribute to the progression of KD related gynecomastia but it is worth noting.

This is a drug that I’ve used for years exclusively for pain management when I was running races. Thinking I’ll make a switch in this area of my life to a different OTC drug for pain management. Although this one choice will not stop the progression of KD related gynecomastia it is one small incremental set of changes that seem reasonable with little detriment.

Here are the links to the articles http://www.cosmetic-md.com/art...res-increase/; http://www.plasticsurgery4u.co...ia_causes.html

Fisher, thanks for the links. I'll read them when I have the chance.

My DR. prescribed testosterone to improve my energy and endurance; however, insurance will not cover as my testosterone levels are normal. From what You have indicated, testosterone is toxic. Would like more information about this.

Randy, it is my understanding that because our mutated genes the Androgen Receptors (AR) no longer does its day job. How our body handles testosterone sometime after puberty is the trigger that brings on onset of KD. The AR can no longer rid itself of the garbage that is clogging it up (cannot enter the nucleus for cleaning). Because of that it eventually dies. I hope someone has a better explanation for you.

This explains why excessive exercise or overdoing can cause more harm than good. The more one exercises the greater the muscle waste that needs to be cleaned up by the AR.

A 1990's clinical trial at the University of Ohio showed no improvement when patients took testosterone supplements. There was some speculation for years that increased testosterone was more harmful to those of us with the defective gene. I believe now the thought process is that it doesn't do any good, but also might not do any harm.

In other words, we don't know for sure. Does anyone else have any knowledge about this?

Randy

I too had concerns about the "toxic" comment since my primary care doctor put me on a testosterone supplement prior to my KD diagnosis. My testosterone level were and at times continue to be abnormally low even with a daily supplement.

I continue to take the supplement because for me it seems to have reduced my episodes of laryngospasms. They used to wake me up almost every night in addition to an occasional daytime episodes. Shortly after staring the testosterone supplement the nightly episodes of laryngospasms stopped.

I think it is important for us to always work with/thorugh our doctors since as mentioned there are risks. I have decided that taking the supplement is worth the risks. However I have asks my doctor, neurologist, and physical therapist to monitor my muscle strength and stability since I may not notice a gradual change that could be a sign that it is time to reconsider that decision.

David

Hey, for me the best works against Gyno is Vit.B6
You can try 100mg daily, if this doesnt work, you can try 100mg in the morning and 100mg in the evening.

IT lowers a bit Prolactin and helps to prevent a gyno.

Testosterone appears to exacerbate symptoms of KD. One observation noted by NIH researchers was when they found a woman who had the KD gene on BOTH X chromosomes. Did she have symptoms? NO. One explanation for this is that her testosterone level was not high enough to cause the symptoms.
A similar "experiment" is ongoing. One of the KD subjects in a clinical trial has a brother with KD who has changed his gender (removing his genitals) and is now living as a woman. If, indeed, the brother has the KD gene, and his symptoms are greatly reduced compared to the brother, that would indicate that testosterone is an aggravating factor. But there is no evidence of this yet.
I would steer clear of testosterone -- it might be better to put up with enlarged breasts (which I have had my entire adult life) than exacerbating the inevitable weakness of your muscles.

Wow, I'm confused! Is it better to take Testosterone or lower it?

It would be interesting to hear if the sex change stopped KD. I doubt any you guys would be game for something so drastic but interesting none the less.

There are two (at least) types: Testosterone and Dihydrotestosterone Dihydrotestosterone (DHT)

Lowering DHT seems to have a beneficial effect on us. Dutasteride lowers DHT hence it being a drug of interest.

I suggest you check out Bruce's blog entries on Avodart/Dutasteride.

As far as I can tell raising or lowering testosterone does not address KD symptoms directly, but I would guess it may affect muscle mass which may or may not be beneficial over the long term.

I would suppose a sex change would lower DHT, but really... Castration (chemical) has been tried too (in Japan I believe), and I would guess it too would lower DHT, maybe not? Avodart seems to be a much better option to me!

I've been taking it for years and I can recommend it as I had effects similar to Bruce. Due to the nature of KD I wouldn't put too much stock in the recent clinical trial that were inconclusive. Mouse model results looked good.

Dutaseride is popular in hair loss remedy circles as lowering DHT is also suppose to address hair loss - the regular 10mg dose I take didn't fix my baldness! Side effects on sexual function are the same as KD - I take Ginkgo biloba to counter those.

A good mini-research topic would be what is the proper dose to lower DHT in the KD context. That is, would lowering DHT even further (if possible) than the 10mg BHP (typical use for dutasteride) dose be beneficial for KD?

I would guess there is at least anecdotal information in the hair loss treatment area as I would guess they take a larger dose. There may be some long term info available there too. Since there is real money to be made in hair loss treatment we may benefit from research in that area for treatments that lower DHT - I think the Androscience ASCJ-9 line may go that way and we may benefit from a pill form that lowers DHT better than dutasteride.

I remember this discussion (from 2008) where Dr Lieberman commented on the use of testosterone:
RAILBLAZER : "Dr. Lieberman, why is it that if our testosterone level is below normal can we not take testosterone to build us back up too have more energy?"
liebermn : "[i]Our strategy is activate the cell's own protein quality control pathways. The idea is to rid cells of the toxic, mutant AR by promoting itss degradation."
Bruce : And how will you accomplish that ... in theory?
mgshidler : i know testoterone is the enemy but what about hgh?
liebermn : "So, trailblazer, testosterone is harmful to KD patients because when it interacts with the mutant AR protein it causes it to become toxic. And this toxicity far outweighs the helpful effects of testosterone on muscle."

Gynecomastia is all about sex hormone control and coordination. If male gonadotropin shows some change, it will alter the level of testosterone hormone.But manually injecting testosterone in body is toxic.

This message has been edited. Last edited by: Bruce,

Bob Heitzman wrote above:

quote:

I think the Androscience ASCJ-9 line may go that way and we may benefit from a pill form that lowers DHT better than dutasteride.

Bob, ASC-J9 doesn't change testosterone nor DHT. Instead, it modifies the androgen receptor, which is the part of the cell that interacts with testosterone and DHT.

Good news! I thought this was just another way to do what Avodart does. Any idea of the time to market or a widespread trial we could jump on?

Hi Bob,
A quick look at clinicaltrials.gov reveals that Androscience Corp., the developer of ASC-J9, has done two studies of ASC-J9 in acne, and none in Kennedy's disease.

At last year's KDA conference, I asked some of the key reseachers if they were stuyding ASC-J9. The answer was, they were testing it in the mouse model, but weren't ready to test it in humans yet.

Obviously, I find both of these answers disappointing.

We hope to hear more at the conference on ASC-J9. The last word we had is that it is being tested on mouse models to determine the proper dosage and the best way to administer it. ASC-J9 and IGF-1 for muscles appears to have the best potential right now.