For those claiming muscle/ bone loss - how much weight have you lost?

Symptoms Physical
#21

He began having what has been labeled complex partial seizures. He took Tegretol while going through puberty, dc’ed at age 15. He was fine for practically 10 years. I believe that it is probable that the elevated estrogen and vitamin deficiencies probably began inducing the seizures again. It may have taken this long for it to manifest. Why else would an otherwise healthy 25 year old young man have these abnormal hormone valves? I have no other explanation other than the medication being the cause.

I don’t know if it will be persistent as yet. He has been prescribed Arimidex (Jacobs) to lower the estradiol. He hasn’t begun taking it yet. TBH, I’m a little worried about putting another strong pharmaceutical on board. I have spoken to the pharmacist who told me that in “low” doses it “should” be safe to take these two drugs together. (apparently at high doses Arimidex is a CYP3A4 inhibitor (same as finasteride) and Tegretol is a CYP3A4 inducer). I’m also having him see a holistic/naturopathic doctor to help get his deficiencies and abnormal RBC (macrocytosis) issues hopefully restored to normal.

My hope is that when the estradiol is lowered, his bioavailabe testosterone will come up and balance can be restored and maintained and maybe he can even get off the drug (Tegretol). But I don’t know. This may be a life-long battle. I have no idea if it will be persistent. Only time will tell.

All of this would have flown under my radar had I not been involved with someone on this forum who is suffering from PFS unfortunately. All the reading I have done here in order to try to help let me to these findings. Actually, I have read that a neurological side effect of having taken Propecia is an increased risk for seizures. This is probably due to the low testosterone (lowered seizure threshold) and neurosteroid disturbances.

I read the link, thank you. It was very interesting and disturbing but perhaps will help point us in the right direction as a whole on how to help people suffering from drug-induced health problems/dysfunction. I applaud you for going back to school and studying molecular biology in order to help facilitate and push this problem forward and bring it to light. That is an extremely admirable thing to do. Again, I wish you all the luck in the world. I’m extremely grateful to you and all those who are working so hard for this cause.

#22

What is not emphasized here is that medications in general (ie Tegretol) may have these epigentic effects etc., but they have been developed to HELP people manage DISEASES!!! Any collateral damage is a bad thing, but most medications are helping to save lives and manage otherwise chronic, problematic, and sometimes morbid situations. Propecia was put on the market for friggin COSMETICS??? cosmetics. Unreal.

So I don’t think we can make a case that pharmacueticals are this big bad monster and treat this as a blanket case. Our situation is WAY beyond anything rational in terms ethics and coruption at the highest levels. My dad was on tegretol for god knows how many years for epilepsy. While I don’t know if he suffered from any side effects, I do know that it enabled him to function without having violent seizures on a daily basis to be there as a father.

#23

This wasn’t my stance either. I also have someone in my family that has epilepsy and know what it means to have these medications available. It is good that we have pharma companies that develop drugs which (mostly) help improve our quality of life. However good this may be, we, as a society, are still accepting too much collateral damage as part of the price to pay for these benefits. Our knowledge about nature and biology is far from complete. Hence, it is reality that a subgroup of patients can potentially develop serious side effects from a drug. The problem is, that the procedures which are in place to deal with these problems are insufficient. In the status quo, basically no one cares (unless the adverse reaction rate is catastrophically high). Not one role in the supply chain (Pharma - FDA - Doctor) has an interest in dealing with rare but serious side effects. Pharma have an interest in keeping things quiet (not just Merck), the FDA is paralyzed by their conflicts of interest, and many doctors have a problem to tarnish the reputation of a medication which mostly works well for them.

If, for example, pharmas were required by law to pay a small percentage of their revenues into a fund dedicated to averse event victims, the picture would look very different for us. And believe me, if you research the Internet with a broader focus than only finasteride, you will find many people who are suffering from various health problems which they got from pharma products. They suffer in silence, no one takes them seriously, or cares about their problem. This is the flip side of what we call “progress”.

#24

Im one of those people with muscle loss and who gets worse with androgen supplementation (tamoxifen and even andractim). Id be interested to know if anyone has explored cachexia as a cause.

awor, I know your not an expert on epigenetics but I’d like to know your thoughts on a couple of points: 1. How can finasteride cause muscle loss when DHT does not interact with the ARs in muscles? 2. Why dont more people have muscle loss or estrogen dominance side effects? (in fact almost noone has grown gyno after stopping fin).

#25

While on fin (no other meds) I had muscle wastage on the backs of my hands (especially outboard, towards/behind the ring and pinky fingers) and forearms. Docs thought I had carpal tunnel but the diagnosis never quite fit or was backed up by diagnostic scans (and no response to carpal tunnel treatments). I remember the physical therapist saying look, you are in your 30s this should not be happening to you, start exersizing. Thing was I was far from sedentary. Just came accross one of the docs reports who noted that I was taking finasteride at the time (guess he didn’t think it was affecting my condition).

During this time I gained weight substantially. coming off 9 months of fin I was over 20 lbs heavier than I am today (and today I’m within 7 lbs of my high school wrestling weight, and getting pretty fit).

#26

Oscar, good observation. I am sure that you are aware that I am one of the strongest proponents of the “silenced AR signal” theory (I specifically don’t like calling androgen insensitivity because then eveybody starts mixing it up with AIS, which is a completely different animal). One of the strongest pieces of evidence to support this is in fact muscle wasting. As you correctly pointed out, a problem with 5AR/DHT could not cause to muscle wasting. It is sufficiently well documented that AIS patients don’t have a problem with muscle wasting. DHT is simply not a requirement for muscle growth, only testosterone is. Of course, in the end it is AR signaling (expression of certain proteins), that cause muscle fibers to grown. If this signaling is not intact (i.e. the proteins are not expressed in the right quantity or form), then muscle fibres can’t grow and will eventually start dying (apoptosis). This is what we then perceive as muscle wasting.

So why doesn’t everybody around here have this problem? What we are clearly seeing in the forum is that our members are all pretty much affected in different ways. Some people get depression, others don’t. Some get gyno, others don’t. Same goes for anxiety, degree of ED and all the other parameters of this disease. Muscle wastage is just another one of those parameters. This variability is actually a vital clue to solving this problem.

What is the main regulatory parameter that is significantly variable between cell types and persons? It’s autoregulation (see previous post on this). Autoregulation is cell specific and is genetically determined. Negative autoregulation is capable of completely silencing the AR signal, rendering us partially or even completely insensitive androgens. So why are we running into (negative) autoregulation? The only sensible answer that I can come up with, and that has substantial scientific backing, is AR hypersensitivity. By depriving our cells of androgens we most likely made them hypersensitive to androgens. For some reason (and this is where epigenetics come into play), we have become “stuck” in this hypersensitive position. AR hypersensitivity would cause an overexpression of ARG’s (androgen regulated genes), which in turn WILL trigger negative autoregulation. This is why the most severely affected amongst us will experience an increase in side effects if they do anything to increase androgen levels (supplementation, orgasm, heavy exercise). Those individuals (to which I also belong), will find that increasing testosterone, exercising heavily, will actually increase their muscle wasting. As an interesting note from my own experience: I do my TRT injections every two weeks. Interestingly, my weight goes down for a number of days and then starts increasing again to baseline in the second week (I’m talking about a 1-1.5 kg. variance). It’s not fat and doesn’t seem to be liquid either (I am actually more bloated in the first than the second week).

Maybe some other people can share their experience in this regard.

1 Like
#27

Did a google search on autoregulation and erectile dysfunction and found this book on google books that talks about a link between the two. It’s pretty far over my head but thought awor might be able to understand it. Hear is short quote:
books.google.com/books?id=VXPxffpHiXMC&pg=PA34&lpg=PA34&dq=autoregulation+erectile+dysfunction&source=bl&ots=OV-QkFpTh-&sig=sCBtBvnaICGfQfxsCCd70Y9nMV0&hl=en&ei=PfzgTaXLBMqbtwfo5sj_Bg&sa=X&oi=book_result&ct=result&resnum=3&sqi=2&ved=0CEgQ6AEwAg#v=onepage&q=autoregulation%20erectile%20dysfunction&f=false

#28

Hmmm, let’s see… What I was referring to is more along these lines:

AR hypersensitivity will lead exactly to the above described result: functional inactivation of the androgen receptor. The more androgens you throw at the problem, the worse it will get (again, for those who are badly affected).

I’m glad to discuss this subject in further detail, but we should do it in another thread.

#29

One question about the androgen hypersensitivity theory. For simplicity, let us define “androgen receptor” as the “black box” that, given a molecule of T or DHT as input, produces an output in terms of androgenetic effect. It seems that some of our androgen receptors behave as hypersensitive, while others as hyposensitive. I was wondering how it is possible under this theory.

Androgen receptors that behave as hypersensitive:
-receptors in the pituitary gland: they behave as hypersensitive in that the pituitary gland detects too much T, even if this is low. And try to keep it low
-body hair androgen receptors: they behave as hypersensitive in that many of our members experience an increase in body hair

Androgen receptors that behave as hyposensitive:
-libido androgen receptors

#30

Well same here, I get Testo jabs every 2 weeks and I’ve been feeling bloated since the last 3 or 4 jabs and it won’t go down.
Again I think all I get from the TRT is more body hair and none of the positive effects.

#31

It would be great if you could post your experience with TRT to this thread: viewtopic.php?f=4&p=18718#p18718

I would like to compile some statistics on this and present them to some doctors that I am in contact with. The more responses, the better.

#32

Great question…

#33

This is a really good thread about both muscle loss and the wider problem of FDA corruption and the wider hegemony of Big Pharma in the medical community and society in general.

awor-

how do you explain the case of someone like aeroengr who said he had very bad muscle loss, but then claims clomid and exercise enabled him to almost recover his physique? Is that cell death? There are other cases of men who have recovered muscle mass, although I don’t know if they lost it in their face etc. In fact, spstriken regained muscle when he first went on trt.

#34

Luckfax initially I thought I got some muscles, but later on it truned out it was water retension.I had become unable to walk or move after 6 weeks of TRT (very painful condition). My body, especailly my chest and thighs accumulated huge amount of water. It took me almost 3 - 4 months after stopping Gel to clear our that water. Just initially I got some strength and libido but later on I became weaker. My ejeculation was completely water.

#35

I believe that negative autoregulation, combined with AR hypersensitivity, is the key to explaining our problem:

pnas.org/content/99/23/15018.full

Depending on our individual genetics (autoregulation is itself determined by genetics), and how severely a person is affected, he may or may not respond to certain methods of increasing androgens. I would really love to run a formal survey on this, to get some better hard fact statistics on how people are reacting to increasing androgens. It seems from this thread, and the few responses that this one got viewtopic.php?f=4&t=3250, that people are mostly not reacting well to methods that increase androgens.

I really wish more people would respond to this thread and post their TRT experiences here: viewtopic.php?f=4&t=3250

#36

awor,

I understand that, according to this theory, hypersensitive androgen receptors get downregulated and then behave as “functionally hyposensitive” (that’s how you explain our low libido). But then, why do other ARs behave as “functionally hypersensitive”? (Our pituitary gland downregulated LH and FSH, as if there were too many androgens; same thing applies to hair follicles, which in most cases over-respond to androgens)

#37

awor - This sounds like a plausible, but demoralizing explanation.
Is there any way (using current methods) to test it?
Even if we could prove it is the cause is there a way to change autoregulation? Obviously, if it is true, we succeeded in changing autoregulation in one direction, but how to change it back is the million dollar question. I’m so uneducated on things like this. Where is the control center for autoregulation, or is it some vague control loop that runs asyncronously in the body? I (we) really appreciate all the efforts you have put into this. Wish there was something I could add to the discussion other than my confusion.

#38

I don’t want to sidetrack this thread by starting a theory discussion. As soon as I find some time, I will lay out my thoughts about this in a dedicated thread in the theory section. Let me just say that it is testable, I know how, and we could fund it with our own money if required. I am working on getting an university to do it as a research project. If this fails, I will call on people in this forum to assist in funding and will get it done commercially. Let me also say that there theoretically are treatment options, if my assumptions are correct. If they would work or not, is another question that no one can answer at this point. We can only start effectively zooming in on treatments once we understand the problem better. This is the difficulty that all PFS doctors face, they are basically treating a problem that no one understands. You only solve a problem once you understand it. And that takes more than guesswork and tons of senseless hormonal assays.

#39

Count me in…

#40

I lost 25 to 30 lbs and it was pure muscles as there is no fat guy in my family. All brothers either skiny and muscular. I was crazy for body building and jogging/walking so no question of fat. Interestingly I lost all muscles within 1-2 months. The loss was so obvious that my body and face became puffy.