I weighed myself for the first time in probably a year today, and I weigh what I would expect to. My question to those of you who say your muscles are wasting away is how much did you previously weigh? surely if the muscle loss is sever you would lose a lot of weight.
Iāve actually put on a good deal of fat and lost muscle. No androgenic benefits from treatment and higher e2 Iād suppose.
Lost a ton of muscle initially, like 10% of body weight. Real AIDS wasting type stuff. Then put weight on in fat. Muscle loss slowed down a lot but is still there I think.
Itās difficult to fathom for someone who hasnāt gone through it, I suppose.
Weight gain is a symptom of androgen deprivation (like some of us who arenāt reacting to testosterone):
Seventy Percent of Prostate Cancer Patients on Androgen-Deprivation Therapy Gain Significant Weight in First Year
sciencedaily.com/releases/2011/03/110311122031.htm
Last week I spoke with a guy who had almost every side I have because he was on ADT (Androgen Deprivation Therapy) for prostate cancer. I was listing mine and he was like āyeah, got that tooā. Probably the nearest experience Iāll get to talking with a PFS sufferer. Except he was blocking testosterone to stop the progression of cancer, not because heād taken a drug to save a few hairs.
The muscle is replaced by fat, I guess it makes sense that you donāt actually lose much weight then.
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At the worst point I lost about 20kg (44lb). That corresponded to about 20% of my body weight (I was at about 11% body fat). I lost about 80% of my weight within 6 months and the wasting started in the second week I was on this shit (quit after 5). I was on TRT all along while this was happening, so T levels had NOTHING to do with this. Increasing T and weightlifting would actually even accelerate the wasting.
Jesus Awor, that sounds rough mate. You went on propecia when you were on TRT?
Same as Luckfax for me. The funny thing is that no one really notices. I was in such perfect shape that even after replacing muscle with fat etc. you canāt really tell from someone looking at me from the outside. I was always 185lbs. Almost no body fat. body builder type build. Slim and ripped. My whole life. After 10 months on the drug. I had moobs, fat on the ass and hips, thighs. Still, because I was in sure good shape, being a little out of shape didnāt really show much and you think its age. Then after I quit I lost 15 lbs and looked like I had AIDS. Now Iāve gained the weight back but the muscle really never came back to where it was. A lot of muscle lost in areas where you wouldnāt think to look. Extremities, fingers, hands, face, neck, forearms, lower leg etc. I saw a picture of myself from a few months ago in a crowd and I was looking kind of out and something. I looked like a swan. I have no more neck.
Proscarred,
LOL, your swan comment is hilarious. My situation mirrored yours almost exactly. I was 185, of lean muscle. A body builder type build. I dropped down to 165 and looked like I star in the Philadelphia movie. I am now 170 and have never been able to get back to where I was. God only knows what portion is muscle or bone.
Iām 192 now. It is completely stabilized there. No matter if I work out or not. I think the biggest difference is muscle tone. If I work out for a week straight it looks like I put muscle on etc., but I weigh the same. If I take a week off, I shrink right down, but I still weigh the same. So it might just be a muscle tone thing also. I can say that I 've definetly stabilized now, which is good. I was deteriorating for almost a year.
I gained about ten percent of my body weight in fat on propecia and lost about 20 percent from this high about 6 months after stopping. Muscle wastage was huge here and at one point I was really scared because I just kept losing weight regardless.
My story is quite similar, Iāve lost muscle from areas of the body I didnāt even know I had muscle. Of course when you stop to think you have muscle everywhere -itās the meat on your bones that allows you to move your joints.
My hands and feet seem smaller, the face less masculine, and so onā¦ And fat has acumulated on the belly and arse, and the body generally seems smoother with much less muscle tone.
(We will crack it one day)
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Yep. I was under close hormonal control even before going onto fin. So I can GUARANTEE you that this problem has NOTHING to do with hormones. It is our body that is not receptive to them anymore.
Same here. My hands, my face and my feet got all thin. Certain people seriously thought I had AIDS. Walking barefoot HURT like HELL because my feet were so bony. Sitting on a hard chair was unbearable because my ass had gotten so skinny.
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Its about 16 months now Iāve been on TRT and Iām getting nowhere fast. The muscle wasting is continuing and Iām thinking about slowly reducing and stopping the treatment entirely. Iāve spent a packet on consultations, blood tests and medications so far and nothing has changed.
I would agree with Awor that it probably isnāt a hormonal problem with respect to the muscle rather that the androgen receptors arenāt responding. However the erections definately respond to arimidex, to testosterone and to growth hormone. So it is just the androgen receptors in muscle that have been affected?
The androgen receptor is only one part in a large puzzle. What is likely playing a central role in this problem is what happens downstream, i.e. in the area of gene regulation (negative autoregulation).[attachment=0]negative_autoregulation.png[/attachment]
Negative autoregulation is determined by genetic factors and is cell specific. That likely explains why we are not all affected in the same way and not all body parts are affected in the same way.
A very interesting fact that speaks for negative autoregulation is that with SOME people (the most badly affected), increasing androgens actually makes things worseā¦
Yup. Iām supposed to take another shot of T and Iām dreading it. Last few weeks Iāve felt terrible. I think Iām just getting the effects of all the extra e2. My e2 has almost doubled on TRT. Iām DEAD tired, muscle aches, neck aches, penis shirveled up and painful. And, they want me to do this for another two weeks before starting arimidex.
This isnāt from e2 and one of the biggest mistakes that people on this forum (and also many doctors) are making. You are unlikely to get any improvement in the symptoms you mentioned through āe2 managementā. The problem is that by increasing androgens, you are actually decreasing your bodies sensitivity to them. I agree, this sounds hard to understand (check out the negative autoregulation slide I posted earlier). But that is what is happening and it manifests most clearly with guys who are seriously affected (the less affected can benefit from TRT, although Iām still waiting for a guy to tell me that he has improved long term on it). Thatās the big sh** about this problem, if you arenāt reacting well to androgens any longer, there is no way that you can āforceā the body into accepting them, no matter how high you go in dosage or manipulate other hormonesā¦ Increasing androgens will make the situation worse for some guys.
And what about all those people who never took any DHT inhibitor (or SSRI or any other drug) but for whom TRT does not work? Are they androgen insensitive too?
Your question hits the nail right on the head. The answer is most definitely: YES. I actually spend a lot of time liaising and researching other patient groups with similar problems. From this I can say, without the smallest trace of doubt: YES. The seriously affected SSRI people (both men and woman) are also androgen resistant, just like we are (both men AND woman!!). Some more some less, but nobody walks away from this by doing a little TRT. Same goes for Accutane and some more exotic stuff like estrogen therapies, birth control pills and GnRH antagonists (Lupron, etc.). All of these substances, including SSRIās, reduce androgens at the cellular level. SSRIās do this inducing (enhancing) the activity of 3a-HSD, which increases neurosteroid levels. The byproduct of this effect is a reduction in cellular androgen levels. The problem is actually not limited to SSRIās, but is a common denominator between most antidepressants (except Wellbutrin to my knowledge). Thatās why people on antidepressants gain weight, loose libido and some get the same problems we do.
There is good news and bad news with this. First the bad news: Even though the basic facts that I am talking about are documented in scientific literature, there are practically no people around that are prepared to take a holistic viewpoint on this problem. In other words, it is VERY hard for people to believe this, even though the evidence is strikingly clear. I am practically fighting on my own to get people to understand this.
The good news is that this is provable and I know how to do it. I am in contact with some scientists that are showing interest in following me down this path. If I succeed, we will be light years ahead from where we are today. Because this problem is much, much larger than only finasteride. It can potentially affect almost every single person living on this planet: Weāre talking about all classes of 5ARIās, GnRH antagonists, antidepressants, hormonal birth control pills, specialty hormonal treatments for woman, etc. It is very likely that almost every person in the industrialized world will be taking one of these substances once in their life. So many people are currently getting hurt by them, all getting the same problem, and no one is making the connection. Once we can succeed at this, we are talking about a rare but still potentially huge medical problem. Accordingly, it will be much easier to get research funded.
Weāre still a LONG shot from getting there, but that is my mission in life at the moment. I am hopeful that I will eventually succeed.
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Can you add Tegretol (carbamazepine) and probably all antiepileptic drugs (AEDs) to your drug research list. My son is 25 years old. He was on Tegretol for 3 years from age 11-15. He began having trouble recently and was put back on the med. I did some research, and found medical literature that states this drug increases estrogen and SHBG and decreases testosterone. Estrogen is seizure-inducing, testosterone is seizure suppressing. Did some labs on my son, sure enough his bioavailable testosterone is 68.4 (range 34-246) and his is estradiol is 42.5, the upper limit. Not to mention it also caused macrocytosis, B12, B6 and folate deficiencies. Isnāt it great that doctors donāt even tell you these drugs cause these things. I think the liver is a key player. The liver metabolizes hormones. When you add these toxic drugs that have to be metabolized by the liver, specifically the P450, CYP3A4 enzyme, I believe it causes sub-clinical liver dysfunction. Iāve come to the conclusion that our current medical understanding of drug metabolism must be in itās infancy. Either that or no one really cares because big pharma is big business. I know some drugs do things we need, but there has to be a way to prevent them from destroying us in the process. Thank you if you can give this attention along with accutane and SSRIs, etc. Youāre doing good work, I wish you all the best in your pursuit of a cure. Thank you.
What kind of trouble?
Yes, this is well documented. The question which is of relevance to me and the problem that I am looking into is, if this state has become persistent once your son stops taking the medication. That is the problem that the people here are dealing with, along with a whole range of side effects including mental, physical and sexual one. Are we talking about the same thing?
Since getting this problem myself and not getting any help, I have taken up studies in molecular biology at a well known university since two years. I now know enough to appreciate how little we understand about how our body works at the molecular level. We are getting fairly good at identifying targets in the drug discovery process, but we often have little to no understanding how these targets function in our body at large. This is where all the collateral damage is coming from. Disciplines like system biology, where an attempt is made to start modeling molecular systems, are still in their very infancy. Meanwhile, developing a drug costs billions of dollars. The move from animal models to humans happens only at the very end of the development process. By then, billions have already been committed. Once that kind of money has been spent, there is practically no way back. Canceling an R&D project at the clinical trial stage will put some very senior people inside the company out of a job. The industry is small, well networked and that kind of reputation will likely keep these people out of a job. So the motivation is incredibly high to do anything it takes to get that medication on the market. On the other hand the FDA, who is supposed to protect us, is more concerned with getting new medications on the market than dealing with post marketing safety issues. Additionally, there are some very serious conflicts of interest inside that organization which hinders them in being more on the side of the consumer. This is a political problem and can only be solved through a political process.
Btw, you may want to look at this paper from Csoka, a major publication in the area of persistent side effects arising from common pharmaceuticals ncbi.nlm.nih.gov/pubmed/19501473