We are Suffering the side effects of Androgen Deprevation - there is no mystery.

Your link http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1477613/ says that these “Androgen deprivation” side effects go away with discontinuation of therapy (do a search for “discontinuation”). In our case, however, the side effects are present (sometimes they are worse) after discontinuation, and, furthermore, with a very good hormonal profile.

If you say that this is a well known problem, could you please find an article that talks about how these side effects persist after the hormonal therapy is discontinued?

Oscar, if you look hard enough you may find we are deficient in almost all vitamins if not all, and have crazy mineral balances.
People have brief recoveries where they are 100% back to there old self, myself included…off zinc.
There are big holes in this theory and you know it.

Btw if you want your hair to fall out again take a high dose of vitamin e (1500iu p/d).

And lobotomy, perminant brain damage symptoms…gimmie a break
Symptoms are closer to anorexia… nutritional deficiencies, rapid weight loss, cfs, brain fog, poor sexual function, depression and passiveness, lowerd core temp. and just like the lobotomy surgery that atleast i know i havent had i dont think anyone is sticking fingers down their throats, thats how dumb that sounds.

Also the sky is falling, do us all a favour and take the blinkers off oscar

GOOGLE SEARCH - “androgen deprivation therapy side effects”

First Result. supportiveoncology.net/journal/articles/0402097.pdf

Second Result. indianjurol.com/article.asp?issn=0970-1591;year=2009;volume=25;issue=2;spage=169;epage=176;aulast=Bagrodia

Third Result. uptodate.com/patients/content/topic.do?topicKey=~iiQli0uxt94zf6D

Fourth Result. (not particularly relevant? ncbi.nlm.nih.gov/pmc/articles/PMC2213888/ )

Fifth Result. ncbi.nlm.nih.gov/pubmed/12667885

Sixth Result. drprem.com.au/downloads/ADT.pdf

Seventh Result. sciencedaily.com/releases/2006/02/060226114317.htm

Eighth Result. (little info… psa-rising.com/mednews/adt/79-androgen-deprivation-syndrome.html )

Ninth Result. ehow.com/about_5636936_side-effects-androgen-deprivation-therapy.html

Etc. Etc. Etc…

I would believe it myself if i didnt have that 1 day on zinc

Its not a competition by the way.

But I want to get better. If we pretend its something else then I guarantee that will never happen.

The first papers on androgen deprevation I posted are from this website. Whoever set up the site (or mew) must have suspected this long ago.

[Size=4]Why hasnt the focus been on this as the most probable cause?[/size]

If anyone reads my recent posts please do not become depressed/suicidal.

Talk to a doctor about the effects of androgen deprevation therapy (prehaps an oncologist specialising in prostate cancer) and find out what is prescribed to help alleviate the symptoms. It would also be most useful to discover what part of the brain has been damaged. Then we can work on a cure! :smiley:

I think it is unfortunate that this theory has only been put forward by me and only many years after the forum began.

Stop talking crap pal, I posted this six months ago:
viewtopic.php?f=1&t=3771

Then I read mew had posted similar much earlier, it’s in the studies section somewhere.

And yes, a fundamental flaw, the guys who get androgen deprivation therapy return to their previous state in most cases, albeit maybe not sexually. We don’t, as I posted.

No offence, but you’ve just landed here and posted all sorts of doomsday stuff and then have the temerity to suggest it’s all your own brainstorm. The theory of androgen resistance has been around for a while, and is subscribed to by anyone with sense who has the true post-finasteride syndrome.

btw, good luck on finding a neurologist in the UK who will work on you with your ‘nuclear theory’, whatever that is, without laughing you out of the room.

Oh Bloody Hell. You posted that people recover from androgen deprevation therapy. I have now posted numerous studies from a simple google search proving this is incorrect. There are permanant side effects – unbelievably serious side effects. Why did you not read this?

You have posted nothing of that regard whatsoever, just snippets from links which show the effects of anti-androgen therapy, nothing to show that they are permanent. I have read these links before you and posted tham on the site. Read them closely and you wil see that symptoms like anemia and hot flushes disappear when these men are taken off the therapy.

As I said, prostate cancer sufferers undergo these symptoms when placed on hardcore anti-androgens. We undergo these symptoms for the most part when we come off 5AR inhibitors. That is the difference with our condition, we acquire (some of us) androgen resistance when we crash.

As for everyone getting MRIs, if you’d read a bit you’d see many on here have had them and they’ve shown nothing. And the idea that we are suffering the sides of a frontal lobotomy, just because you put it in big, bold capitals doesn’t make it look any less stupid, in fact more so.

Do a bit of reading on here before you type.

I have to admit something. I assumed Androgen Deprevation Therapy only lasted a week or two, not months or years. This has skewed my interpretation of the informtion in the links I provided. They do not mention if side effects continue.

So do side effects persist after such treatment? It would appear that even academics are uncertain,

Long-term side effects of androgen deprivation therapy in men with non-metastatic prostate cancer: A systematic literature review (2006)

geriatricmedicine.utoronto.ca/Assets/GM+Digital+Assets/Research/alibhai/ADT+side+effects+CROH+2006.pdf

There are currently 600,00 patients undergoing hormone therapy for prostate cancer in the USA. If side effects do not persist normally it means we are the only men in the world suffering these effects after taking antiandrogens.

[If that is true it means there is something unique about taking 5ar2 inhibitors then having low levels of T as a result of the ‘crash’. Or as a result of our DNA we dont get prostate cancer, but do react this way to antiandrogens]

Those links are all to papers discussing the effects of being on androgen deprivation therapy. We are not on any form of ADT, and have serum testosterone levels in the reference range, but are showing the symptoms of androgen deficiency. Do you see what the mystery is now?

That’s completely untrue. The side effects of androgen deprivation therapy only last for the duration of the therapy. Read the PDF you cited.

See this paragraph on 644-5: “The increasing trend of younger men with prostate cancer potentially leads to the earlier use of ADT if attempts at cure are unsuccessful. This means that increasing numbers of men will be using ADT for longer periods. As a result, potential long term side effects need to be addressed early.” It’s saying that long-term use of ADT raises the issue of managing long-term side effects. How does that make any sense if ADT always causes permanent side effects?

Wrong. TRT has had a significant effect on many PFS sufferers who have tried it. I’m one. It requires a supraphysiological dose, which is probably where others have gone wrong.

This is nonsense. Our symptoms respond to testosterone replacement. If we had permanent brain damage or ‘penis damage’ that would not be the case. I agree there has been permanent damage to our androgen system though.

Wrong again. Androgen deficiency is probably the leading theory on this site. What we don’t understand is the mechanism by which we continue to be androgen deficient despite ceasing finasteride and having normal(ish) levels of serum testosterone. As far as I can tell, you haven’t contributed anything towards our understanding of that.

You are correct, I apologise. I have edited the first post in the thread to reflect this. There is no information of permanant side effects from Androgen Deprevation Therapy (after discontinuation of treatment) in any academic paper I can find. I am sure if such side effects do exist they would be more prominantly mentioned.

I was influenced by ‘Deca-Dick’. :neutral_face:
BB’s get permanent sexual dysfunction (ED and/or low lobido) in a short space of time after their T/DHT levels drop. This is permanant damage to their brain and penis’ - if not, then what else could cause it? So clearly permanant damage can occur, it is not ‘nonesense’.

I suppose there is only one point I wanted to get across. If we have normal hormone levels and our bodies do not respond to those hormones there can only be two reasons;
1. Epigenetic changes to the way our bodies react to hormones at the cellular level.
2. The cells that are supposed to respond to those hormones are no longer there.

Yes, many here spoke of androgen insensitivity. I’ve spoken to three of the PFS doc’s in the last few months and they all say that is possible. But, Its not necesarily a fact that androgen insensitivity is permenant. Dr. Jacobs states that he had a patient who took enough thyroid meds to kill a normal person. Over time she somehow resensitized to thyroid hormones. Some here have had the same outcome with high dose TRT. Super high doses maybe turn back on the androgen receptors? Maybe this is Jacobs line of thinking and why he puts everyone on TRT right off the bat before clomid? Just a guess.

Here is a post from a member that got his T levels to record levels and was/is a patient of Dr Jacobs. viewtopic.php?f=0&t=3757&p=24469#p24469

Actually the idea of using supraphysiological doses of androgens to ‘force’ something to happen has been around for a while viewtopic.php?f=5&t=1417

It depends on what has happened in the first place. Why does Dr Jacobs think using massive levels of thyroid hormones worked? (btw Im not at all a critic of dr jacobs despite the first post in this thread!)

This is from the website of a leading expert of methylation…

medicine.mcgill.ca/pharma/mszyflab/Main.htm

Prehaps our androgen receptors are methylated creating a lack of gene expression. Prehaps this occurs when then stop working due to a percieved massive dose of DHT. Prehaps they just need to be kick-started into working again. Or prehaps we need to lower the levels of androgens in our bodies to resensitise the ARs. Who knows?

By the way, kudos on still working and actually being a manager of other people!

He didnt really theorize why she became androgen sensitive again. I think I was being very negative and saying why bother treatment and he was saying he’s seen alot of things happen. I think the basic idea is bombarding the receptor “might” switch it back on somehow. You’d like Dr. J - very positive, very bright, a bit of a maverick, and I think he honestly wants to help us.

Jacobs also said he had someone with a total Testosterone of 4000 and they felt nothing. Dont know how long they kept up that level though. I think high dose TRT/ Wellbutrin is gonna be the next thing I give a shot. Not looking forward to the shrunken up nuts.

I guess all we can do is try a treatment and share the results, Googling things will only get us so far.
I’m in the wrong country to see Dr Jacobs, but I’ve managed get an appointment to see the top endocrinologist in England, he is a Professor with over 400 publications on PubMed and has an excellent international reputation. Ill report back what happens.

who is this guy?

could you pm me any details

thanks

Oscar could it not just be be that the resultant effects of fin (elevated estrogen, androgen depriviation etc) has upset an extremely delicate balance in our hormones?

I truly believe this.

This explains everything in my opinion.

It explains why some people suffer more than others and why some people have different complications that others. Because our bodies experience a massive chain of reactions to this imbalanced hormones.

Our hormonal balances have been evolutionarily perfected over millions of years. Its no surprise that many of us experience havoc when we’ve distorted them. Most of us have no baselines. Most of us also have experienced a long term chain reaction which is always going ot be difficult to reverse.

You mention JN (or whoever that guy is that has tried everything) but this only testifies what im saying.

It also explains why people have “ups and downs”. Its because their levels just arent right so they’re erratic.

My personal opinion? Is that alot of us have suffered damage over a sustained period of time (either by being on fin for many months or years or since going of it). The body is a great healer but it would take a long period of time for it to fix itself.

This also explains why people naturally heal

Of course, many don’t naturally heal.

IMO here - these people need drug assistance. I know i am simplifying this because everyone’s levels are going to be different as a result, but my E2 levels are high - something that causes everything really.

What do i need to do? Use arimidex is mega-small doses for a long period of time to drive down my E2 levels (very carefully) and condition my body towards it T/E sweet spot. When i can reach this (give or take), from here my body will slowly and surely undo most of the damage that will have happened.

The problem is most of us have went down extremely complicated paths in that their hormones are now so over the place its almost impossible to tell what kind of “conditioning” one needs. I do think however, even in the most complicated of instances, if a PFS sufferer can try attain good T/E levels over a prolonged period of time they will see their system slowly recuperate naturally. I mean, how many people on here have actually taken a systematic approach of trying to maintain a stable perceived T/E sweet/spot (and hopefully optimum DHT, SHBG levels) for a sustained period of time mapping this out with say, biweekly bloods? No one? Isn’t that strange considering most of our HARM has came from a sustained amount of time with unbalanced hormones? How are we really giving our bodies a chance to heal if we either leave our hormones in their messed up state or, almost worse, just mess about with them? The body needs stability to self-correct.

What JN does is has things coming from all angles in his body… What are the chances of him getting all these levels right by this cocktail of drugs? Remote at best. And even more remote that he will have any realistic chance of maintaining any desirable levels. Indeed, alot of these drugs have made the likes of him experience short term “recovery” but in reality they’ve just compensated for the problems via artifically elevated/downregulating something that was potentially unconnected to fin in the first place. Which is why a long term recovery is unlikely

I suppose this approach is outside the realms of people who have developed thyroid problems of course although they would also do well in correcting levels as well as address their thyroid

Over all, sounds simplistic but our bodies are smarter than us we need to help it with a basic approach and condition and tweak where necessary. Longevity might just be the key.

I’ll be keeping everyone updated on my journey.

I wish it was as simple as playing the balancing act with hormones. I’m afraid it’s probably is far from what we can understand now. And, androgen insensitivity caused by epigentic change plays at least one role. How else do you explain Dr. Jacobs patient with 4000 total T and feeling no effects? Or, others here with hormones in range, including myself and hypogonadal?

For sure effects all of us differently and playing with our hormones might make life a little more bearable but androgen insensitivity has to be a factor.

As i said, very few actually get a sustained reset. Most people just jump from theory to theory.

And the people with secondary hypo are a different breed again, but ironically this is all triggered by imbalance.

Just because one’s hormones appear in “range” doesnt necessarily mean shit esp if they are secondary hypo sufferers.

HOW one’s hormones happen to fall in range is what matters. So one’s hormones might appear perfect but they in reality they’re completed fucked up, so fuked up that they actually balance each other out. They’re all interrelated so this is very plausible and imo likely.

Not to mention “in range” is only an indication. Without comparing them to base levels you might have no idea how far off your really are. Your hormones, although in range, may be all completely varied from your base lines. If so, surely your body will be fucked, right?