Phoenix Rising tells QMUL: release the PACE trial data
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for the boys, if testosterone hasnt worked for you? or adreanl fatigue?

Discussion in 'General Treatment' started by heapsreal, Dec 24, 2010.

  1. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    hi, Im going through the paces of sorting out my hormones and treating adrenal fatigue with some good results, but in the past have seen guys say they havent had much luck with testosterone. After all the research i have been doing i think i know why. WHen it comes to hormone modulation, many docs are out of touch just like cfs and finding a good doc can be hard.

    Initially guys say that testosterone helps then stops working and they feel like crap again. Theres a reason for this, as we age our body increases an enzyme called aromatising enzyme and its function is to alter our testosterone to estrogen and this is a good thing but age seems to increase this which isnt good. WHen estrogen(E2) gets higher it reduces our free testosterone levels which is the stuff we want high. When the doc gives us testosterone, this increases our total T levels but because of this aromatising enzyme much is converted to E2 as our T go's up and freeT go's down. We can fix this, arimidex. ITs a drug used in breast cancer for women and used in lower doses for men to reduce the function of aromatising enzymes, this causes E2 to drop and we have an increase in freeT and we feel 25 again, hopefully and not like a 16 y/o girl with c-cups, lol

    Another thing that can happen with testosterone therapy is that TRT suppresses our testicles and other organs in making hormones like dhea, pregnenolone, cortisol etc and if u have cfs theres a good chance your adrenals are knackered too and suppressing these hormones isnt a good idea. Now adding transdremal pregnenolone which absorbed alot slower and better then pills, has a down stream balancing effect on all other hormones and can replace those missing like dhea which are suppressed from TRT.

    ONe more thing and this is my situation, i have good total T but bad freeT and high E2 and low dhea levels and cortisol levels, so adrenal fatigue is upsetting my hormonal balance. Now testosterone has to be down regulated by something or else our T levels would be off the chart. A healthy person has good adrenals and cortisol production and this is the way to go to down regulate T levels, but with adrenal Fatigue(AF) our cortisol levels are too low to do this, so E2 levels rise to down regulate my Testosterone which it has by dropping my freeT to below normal range and symptoms of estrogen dominance appear which is not good for us males. This is were low doses of hydrocortisone can help or better and safer pregnenolone. Preg can help raise low cortisol and dhea to healthy levels which then has an effect on lowering E2 as now our T is controlled by cortisol and we have good FRee T levels and feel as flash as a rat with a gold tooth. Why not supplement dhea, well my experience and others i have heard of is that dhea just increases their E2 levels which isnt what we are looking for. we do need good dhea levels but supplementing pregnenolone can increase dhea levels like we need but without raising E2 hopefully.

    Now im just starting this hormone modulation and im feeling alot better on pregnenolone cream 50mg. Its not something u can do on your own but need to work with a good intergrative doc who can do all the right tests and monitor the effects. I will report back in a few weeks to talk about my blood tests after using pregnenolone but so far im feeling quite good.

    cheers!!!
     
  2. August59

    August59 Daughters High School Graduation

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    I will certainly agree with this. My only comment is that eveybody probably varies in where their hormones are off or abnormal. I hope people will not treat without labs to show where the problem lies. It is a balancing act to say the least and the healthy body does a great job of balancing. It's our unhealthy bodies where the problems occur and you may have a specific problem, but that one problem could be the results of three different hormones.

    Heaps has done a great job explaining this and illustates how complex it is. Someone has to get all the proper labs done to embark on balancing these out.
     
  3. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I have written this as i have found a few guys who did poorly from testosterone, but there is so much more to geting it right and most arent on the right path with their docs and probably need to find a doc knowledgable in hormones, like an intergrative practioner someone who works like a regular doc but has the knowledge of these alternative type treatments that a normal run of the mill doc wouldnt have. Also to encourage some of these guys to google what i have said and find more info out there. Hormone therapy done right can keep us strong and healthy and to cope better with cfs from any cause. I do believe the longer u have this illness the more dysfunctional your hormones will be, maybe this is the reason why the longer u have it the less chance u have of recovery.

    I get blood tests done in early much so will post on how pregnenolone has effected my hormonal picture as well as my immune system, as im still on cycliferon and antiviral-famvir. And u know what Im starting to get on top of this monster, i have that odd day where i think what the hell is going but generally im going forward.

    cheers!!!
     
  4. August59

    August59 Daughters High School Graduation

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    heaps - Have you had your DHT levels checked? If so, ? Thanks
     
  5. FunkOdyssey

    FunkOdyssey Senior Member

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    In my opinion, this is the reason testosterone replacement makes CFS'ers crash with some reliability:

     
  6. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    august59 no i havent had dht tested. Funkodyssey i have seen where hormones negatively effect xmrv but we are going to secrete hormones no matter what and if we stop our hormones, we are going to feel worse then having xmrv, im theorizing that we are better off to have our hormones in a balanced way like a healthy person, not left out of balance like many of us are now. I know it is said that testosterone and dht have a negative impact of prostate health but i know of other studies showing excess estrogen ie E2 in men cause increased risk of prostate cancer and prostate hypertrophy. Prostate problems seem to occurr more regularly in aging men, but if u look at most aging men, their testosterone levels actually decline and dht probably would also as its converted from testosterone and at the same time estrogen rises. Im currently in the process of trying to lower my estrogen levels and improve my testosterone to a healthy level, not a level above normal. Im not saying your wrong but aging men who use testosterone replacement therapy on their own will make more estrogen as testosterone is converted to estrogen in aging men through aromatize enzymes. Men on TRT need to control there estrogen levels through using anti-aromatise inhibitors. Alot of men giving TRT by docs not well informed feel worse after a few weeks because of this increase in estrogen. If the person on TRT can find a smart doc who can put them on medication to control estrogen and bring it back to a normal level, generally they feel better, if this occurs in males with cfs, im not sure, but if their estrogen levels are elevated from aging there going to feel crappy.
     
  7. FunkOdyssey

    FunkOdyssey Senior Member

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    While testosterone does fall with aging in men, DHT tends to increase because the activity of the 5-alpha reductase enzyme which forms DHT from testosterone increases. So, aging men tend to have reduced testosterone, elevated DHT and elevated E2.

    Reducing excess E2 seems like a good idea, however any action you take to raise testosterone levels will produce additional DHT. In the case of CFS, you have some guys who are relatively young with low testosterone levels, not due to aging, but due to the illness. When these younger guys replace testosterone (androgel, depot shots) they don't tend to do very well, and I think the XMRV link explains why.

    To take the hypothesis a bit further, if your disease state (presumably an XMRV infection) is advanced enough that you have developed secondary hypogonadism, you're already losing the battle against XMRV and opportunistic infections, and then if you turbocharge XMRV with additional androgens, now you're REALLY sucking swampwater.

    Controlling excess estrogen with a bit of aromatase inhibition is a great idea though, no doubt. 5-alpha reductase inhibitors might also be useful to keep DHT under control.
     
  8. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    sounds reasonable, i have heard of guys using proscar for dht control, lose their ability to get erections as dht is an important hormone for men, obviously too much is no good, sawpalmetto is sometimes used but not sure how effective it is though. ANy tips for controlling dht??? or maybe its just the ratio of dht to testosterone that important. we need to google some more info.

    cheers!!!
     
  9. FunkOdyssey

    FunkOdyssey Senior Member

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    I think herbal 5-ar inhibitors are less likely to cause negative side effects (although this may be an indication that they are ineffective). Maybe smaller-than-typical doses of proscar could be used to reduce DHT to a healthy low-ish values, still within the normal range, without causing sides.
     
  10. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    The main things im trying to do is increase my dhea levels which are extremely low without increasing E2 levels, which happened when i supplemented with dhea. SO hopefully the pregnenolone increases dhea without increases in E2. Second is to lower my high E2 levels to normal and three is to increase free testosterone levels to normal as they are currently below normal range. In reguarsd to xmrv and hormones, its just not black and white but what i do know is low hormones reduce the effects of our immune system. I do remember reading an article on HIV patients using anabolic steriods to reduce muscle wasting which comes with HIV and it helped them with muscle wasting but it also improved immune function. But new studies keep coming out contradicting each other, i think it comes down to an individual thing and what u and your doc decide.

    cheers!!!
    keep the hormone stuff coming, its all interesting
     
  11. Smarty

    Smarty

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    Heaps - I live in Hobart and am using Testosterone but I am having conversion problems to Estrogen also. Can you tell me which Dr you see for prescribing Arimidex - my Dr said she isn't prepared to prescribe it off label for cfs.
    Cheers
     
  12. Well I've been on testosterone injections, nebido, for 3+ years, think nearly 4 now?
    until near end of 2009 I was a lot better due to this, had maybe 1 "very good day" a month where I could go into town, walk a mile or such (still took day or two to recover from that but hey, was huge improvement)

    dunno if it was the hellish weather (cold/damp weather makes me worse, UK's had evil evil weather!) or something else, by end of 2009 until now I've not been as good, still better than without the testosterone, though
    showing again, how damn variable this illness is betwen each of us, sigh.
     
  13. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Guys that have initial improvement on testosterone and then go backwards this can be because testosterone can aromatise to estrogen, high estrogen in men can make u feel aweful as well. Treatment for this is to use an aromatise inhibitor like arimidex which helps lower estrogen, but will need to find a switched on doc for this. I would ask your doc to test for testosterone toal and free levels as well as E2(estrogen)
     

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