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Author Topic: TRT failure - what to do next?  (Read 40959 times)

Kwn

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TRT failure - what to do next?
« on: April 12, 2013, 01:07:46 am »
Hello,
I need an advice from the forum.  This is a long story, but please bear with me, I really need your input.
============================
A year ago I was diagnosed with low T.  A little background about me: at the time of diagnosis I was 40.  About 10-12 years ago I started to develop gynecomastia, which I still have, but aside from cosmetic aspect, it did not bother me much.  So in March 2012 one night I lost an erection right in the middle of intercourse.  For the next several weeks I could not get aroused or achieve erection.  Needless to say, it scared me big time, especially since nothing like that ever happened before.  I always had normal libido, and good erections.

So I went to urologist, and he ordered tests: PSA, serum testosterone, TSH, and prolactin.  The test came back as

PSA: 1.11 (range 0-4.0)
Prolactin: 7.4 (range 4-15.2)
TSH: 1.06 (range 0.45-4.5)
Testosterone: 143 (range 348-1197)

His DX: hypogonadism.  He said that probably my body had low testosterone for some time already.  I asked why T is low - he said we do not know.  Apparently the brain set the 'thermostat' too low, and this is what we observe.  I guess he meant that it is likely secondary hypogonadism.  He gave me options: gel, injections, Testopel.  I said I will think it over.  Then after reading internet I came across references that low T can be corrected by changing lifestyle.  I was 5 foot 6, around 220 lbs (BMI~35, in the obese zone), so I called urologist and asked if it made sense to diet/exercise/get more sleep/stop alcohol.  Surprisingly he said absolutely, cutting on weight can help due to T to E conversion, and I can try it, and I should be patient with the lifestyle adjustment, and I should not get discouraged if results will take some time.  So following his advice I started with Atkins.  In about 1 month I lost close to 15 lbs.  And miraculously, my libido, erections, and sex life returned!  So after that I stopped Adkins, and continued to live my regular life as before.

Then 3 months later at the end of summer 2012 symptoms started to creep up again.  I had a few rather stressful family events, and they might have contributed to the picture.  First I started to notice that penis became ‘numb’ – according to Morgentaler, one of the low T symptoms.  Then GRADUALLY I lost libido, and also gradually I lost orgasmic sensation.  I could maintain erection, have sex, but ejaculation did not result in orgasm.  Plus on the top of that I started to experience premature ejaculation.  The intercourse was under 1 minute – and this is it.  I had no control over it.  I waited until November 2012 and finally decided to go to urologist again.  He measured T – came back at 122.  So I decided to proceed with the T replacement therapy. 

In January 2013 I had 14 Testopel pellets implanted.  According to urologist, the highest dose they ever implant is 16, but they start everybody with 14.  Quite honestly, I was expecting a miraculous transformation to happen overnite (libido back, erections, return of orgasm), but what happened was quite shocking and surrealistic.

On the day 5 after insertion in the evening I suddenly felt an agitated state of mind, and tension.  It almost feel like I have intoxication and high blood pressure.  I woke up at night with heart palpitations, uneasy feeling in heck/head, and feeling of being depersonalized, as if things were happening not in this reality.  I never felt anything like that before.  It was scary/horrifying.  This night I slept maybe 3 hours total.  In the morning I started to feel that it is getting worse.  In fact, symptoms resembled heart attack.  So I went to GP, she measured blood pressure – 122/74, normal.  Pulse rate was elevated to about 100.  So it appeared to be an anxiety/panic attack. 

I called urologist and asked him what is happening.  His reaction was – it cannot be Testopel.  He said it has been less than 10 days, you cannot even feel the effect of it yet.  But I insisted on checking levels of testosterone and estrogen.  The test came back as testosterone – 500, estrogen – 39.  Urologist said, T level is good, and E is in the range.  So everything is going like it should.  But I have experienced during these days series of mood swings, where I go from super-focused, clear-minded to crying spells for no reason, feeling sad and extremely down.  Mind fog, depersonalization/derealization also visited me a few times.  Also, my sleep pattern changed drastically.  I could sleep 4 hours a night, wake up at 5 am, and not be tired all day.  Low T symptoms (no drive, premature ejaculation, anorgasmia) did not resolve one bit.  I became obsessed with finding the reason for my condition.  I read almost everything out there on testosterone therapy, metabolization of testosterone, therapy side effects, e.t.c.  Some people actually described similar scary conditions, and opinions on forums were that they are likely caused by estrogen, elevated from high T.

At 1 month mark after implant, I went to test T and E levels again.  In urologist notes he said, if T > 800, reimplant after 4 months, if T<800, after 3 months.  I was expecting to see level 700-900, imagine my surprise when it came back at 450!  So I went back to urologist and asked him what is going on.  1)  T level is not even close to where it should be, 2) I anxiety almost every day, my sleep pattern changed, I am pretty depressed, and – most importantly - 3) I have no sex drive, anorgasmia, and premature ejaculation just like before, no change.  He said, yes, hormone level is not quite where we expected, but it is still decent.  He said, since the T hormone is in the normal range, no sex drive and anorgasmia have only psychological explanation at that point.  Plus I probably need to go on antidepressants, because I seem to have anxiety/depression.  I asked if any of that is hormones-related – his response – not likely, it cannot be testosterone effect.  It sounded as if I am a wackadoodle who overanalyzed situation, and drove myself nuts.  “Paralysis by analysis”, he said.  So he advised me to see sex therapist to get psychological help and get a prescription for antidepressants.  At that point I was about 1.5 months into therapy.  On one of the weekends I have experienced series of day/night time anxiety attacks, when they come and go every 3-4 hours for 2 days non-stop.  It was pretty horrifying.

A week after visit to urologist I did another test.  Testosterone came back at 380 (came down ~80 per week), estrogen at 32 (also came down).  Since all symptoms persisted, I went to GP, and got a prescription for Wellbutrin, but I did not start it.  I decided to wait and see if symptoms would change, as I was on declining testosterone at that point.  Taking an antidepressant would probably help with depression, but we would never know if it went away as hormones faded away, or by the act of antidepressant.  At that point my anorgasmia slightly lifted, and I started to experience weak orgasmic sensation, nowhere even close to what it was before it all started.

What happened over next few next – anxiety and tension subsided, my sleep returned  back to old pattern, and I associate it with the drop of testosterone level (I assume it went down ~80 per week).

To summarize: a week after Testopel implant I started to experience mood swings, anxiety/panic  attacks, depression.  They subsided after about 6-7 weeks after implantation, when hormone level returned to old low values.  To me it is a clear indication that onset of panic and dissipation is due to hormonal changes in organism.  Libido never turned back, anorgasmia changed slightly, premature ejaculation never improved.

I am due for reimplantation in April 2013, but I am not going back to this urologist.  He refuses to recognize hormonal nature of my condition.  I cancelled appointment with him, and scheduled a visit to endocrinologist, as I believe a comprehensive hormonal analysis is required.  I hope she will be knowledgeable and open minded, and will not go into denial that hormones play major role in this ordeal, as did urologist.

Right now I went back to Atkins, maybe it will do the same wonderful trick as it did a year ago.

==================================

So, my question is – in your opinion, what exactly went wrong with T therapy?  In my own view, since I have gynecomastia since long time ago, I do suffer from estrogen dominance, or maybe my individual sensitivity to estrogen is high.  So, starting T-therapy threw my estrogen to ~40, which is technically is still in range, but might be too high for me.  If this is the case, estrogen also explains panic attacks and anxiety, as well as no libido.  I still have no explanation for continued anorgasmia and premature ejaculation.

Another alternative explanation might be that rising T cause thyroid to go hyper, and high level of thyroid hormones created panic attacks, and the rest of stuff.
Any other ideas??

ANY INPUT/IDEAS WILL BE MUCH APPRECIATED.  My current situation is literally destroying my life.
« Last Edit: April 12, 2013, 03:55:39 am by PeakT »

PeakT

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Re: TRT failure - what to do next?
« Reply #1 on: April 12, 2013, 04:14:36 am »
Well, sorry to hear about all the troubles.

Now, first of all, I want to be clear that I certainly don't have all the answers to what is going on.  The brain is, needless to say, VERY complex and each person is unique.  In the last 10 years our knowledge of the brain has exploded - it's incredible - but we are still in the infancy of our understanding. 

I want to let you know something and that is that I have no doubt that you can get your life and emotions back on track.  But you have got to try to relax a little as it is going to take some time.  This board is filled with people, including myself, that took literally years to find the root causes to their underlying health issues.  So I hope you find a miraculous silver bullet, but you're probably going to have to be a normal Joe like the rest of us and work it out over time.

Anyway, here are a few comments:

There haven't been that many guys on Testopel on the board.  However, I can tell you that several men on injections, who have had their testosterone boosted substantially, have reported that the first night or two was mind blowing.  Testosterone, especially if you are low T and suddenly going high, dramatically alters the brain.  I can't prove what it is doing, but enough guys have reported this affect that I know it is generally true.  And we do know from the studies that testosterone improves mood, decreases depression and helps in cognition. 

The description that men have given is that it is like their brains are being rewired. 

In addition, if you have overly high testosterone levels from HRT, you can get some of those effects that you were describing, an "over alertness" if you will.

But here is what does not make sense in your story to me at least:  your testosterone levels do not seem to have gone that high.  Usually, at least from what I've seen on the forum, these experiences come from men who are 800+ in testosterone.

One last comment and then I've got to run:

Some men seem very sensitive to estradiol.  Your E2 is pretty high and you can just browse through the steroid forums to find out what high estrogens can do to a guy:  mood swings, loss of libido, erectile issues and so forth.  So this is probably something to discuss with your doctor.  I am seeing many of the HRT docs trying to get men into the 20-30 range for these reasons plus the fact there is some study work showing this is heart healthy:

http://www.lef.org/magazine/mag2010/may2010_Why-Estrogen-Balance-is-Critical-to-Aging-Men_01.htm

http://www.lef.org/magazine/mag2008/nov2008_Dangers-of-Excess-Estrogen-in-the-Aging-Male_01.htm

One last thing.  I'm not a big fan of Atkins myself.  Other guys on the board have used it successfully for losing weight and I do admit it's a great way to drop the pounds quickly.  But I personally do not think it's a natural way of eating and could lead to issues.  Here is my take on it if you are interested:

http://www.peaktestosterone.com/Atkins_Low_Carb_Diet

http://www.peaktestosterone.com/Why_Is_Saturated_Fat_Bad_For_You


THE MOST COMPREHENSIVE BOOK ON TRT/TESTOSTERONE:
https://www.amazon.com/Natural-Versus-Testosterone-Therapy-Myer/dp/1523210532/ref=sr_1_1?ie=UTF8&qid=1499116128&sr=8-1&keywords=natural+versus+testosterone+therapy
And check out my New Peak Testosterone Program: http://www.peaktestosterone.com/peak_testosterone_program
If you are on medications or have a medical condition, always check with your doctor first before making any lifestyle changes or taking new supplements.  And low testosterone is a medical condition.

Peak Testosterone Forum

Re: TRT failure - what to do next?
« Reply #1 on: April 12, 2013, 04:14:36 am »


Prsartist

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Re: TRT failure - what to do next?
« Reply #2 on: April 12, 2013, 12:00:08 pm »
Sorry your having these problems, unfortunately
I can't address "all" the problems your having, however
I am one of those guys who is VERY sensitive to estradol!

Yours is TOO high!!!
I'm sure you can find stories of people not having any problems
With estradol readings of 39. (They likely don't "think" their having
Any problems), but I would challenge them to knock that level down
To the low 20's then tell be if things aren't ALOT better!!

Since you've had Gyno issues in the past that just screams out to
Me that your body is sensitive to Estrogen!

I certainly felt really bad when my E shot up to 57 (doc's did nothing!!)
Then to 88!! (Before I started an AI). Strangely enough I don't recall feeling worse at 88 than I did at 77??  But I really felt bad! And total ED to boot!!

Just one question, are you expierencing morning erections?
If your not, you should be!

My last E reading was 28,  but even at that some mornings I don't have them!
But I can go on streaks that last a few days...
That's telling me Im getting close to my optimal E level.
I even told the Dr. I wanted to bet him I could guess my E levels within 3 points.
I guessed 26 (it was 28) he would have lost!!

Sorry I tend to go on rants about estrogen, but it just as, if not more
Important than T levels! 

I've also read a few places that with gels and implants
You T levels will not as high as with the injections.
Don't be afraid if the needle, there is nothing too it!
And it will boost you significantly higher than 500!

PeakT

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Re: TRT failure - what to do next?
« Reply #3 on: April 12, 2013, 01:56:26 pm »
Also, kwn:  where did you read about depersonalization?  I'm asking for a number of reasons.
THE MOST COMPREHENSIVE BOOK ON TRT/TESTOSTERONE:
https://www.amazon.com/Natural-Versus-Testosterone-Therapy-Myer/dp/1523210532/ref=sr_1_1?ie=UTF8&qid=1499116128&sr=8-1&keywords=natural+versus+testosterone+therapy
And check out my New Peak Testosterone Program: http://www.peaktestosterone.com/peak_testosterone_program
If you are on medications or have a medical condition, always check with your doctor first before making any lifestyle changes or taking new supplements.  And low testosterone is a medical condition.

Peak Testosterone Forum

Re: TRT failure - what to do next?
« Reply #3 on: April 12, 2013, 01:56:26 pm »


Kwn

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Re: TRT failure - what to do next?
« Reply #4 on: April 12, 2013, 04:38:56 pm »
Thank you, guys for your responses!  I do appreciate your input.  My feeling was that all this nightmare was induced by estrogen.  When I talked to urologist he said nope estradiol is fine, you need to have your head fixed by psychology doctor.  Now, whether or not it is estrogen, still remains to be seen, but at least I will insist on checking this version when I talk to endocrinologist.  This time I will probably do shots, because the shot wears off much quicker than Testopel.  I had to suffer through about 6-7 weeks, it was the worst time of my life so far.  Plus I will insist that she will give me Arimidex samples to see if this is really an estrogen issue.  Alternatively I plan to ask for a round of Clomid.  This way I know that testosterone that I am getting is my own, and this is not a reaction to the medicine.  Plus there is hope to ‘restart’ the HPT axis (even though the chances are slim).
Regarding ‘depersonalization’: when I had a first onset of this scary condition 5 days after implantation I could not even describe it to my wife.  It is like – how you describe color blue??  I felt strangely disconnected from the reality.  It was like I do not care about events and people around me.  I remember watching TV, one of my favorite programs at that point, and I do not get it at all.  It is as if I am indifferent, no emotions at all.  Then after this scary condition went away, I started to search internet.  Here is where I got the term:
http://panicdisorder.about.com/od/symptoms/a/DeperDereal.htm
http://www.calmclinic.com/anxiety/symptoms/depersonalization
Here is another story of a man on TRT who experienced similar things (maybe even worse):
http://www.dpselfhelp.com/forum/index.php?/topic/31675-testosterone-replacement-therapy-caused-dp/

Prsartist

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Re: TRT failure - what to do next?
« Reply #5 on: April 12, 2013, 05:02:42 pm »
Well......
I certainly hope you have better luck than I did convincing Dr's
About appropriate estrogen levels..
The labs list too big of a range (like T levels ) as "normal"

Many will tell you......well the same crap they have been telling you!
(Unfortunately I listened to them  and wasted 2 years trying anti depressants
Which did NOTHING!)

Arimidex is not a "sample" type medicine.  You need to be tested regularly
As E levels too low are not good either!

Remember!!!!! (Too many people forget this)
Dr's work for you!!!!!
You do not work for them!!!!

PeakT

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Re: TRT failure - what to do next?
« Reply #6 on: April 12, 2013, 05:39:40 pm »
Thank you, guys for your responses!  I do appreciate your input.  My feeling was that all this nightmare was induced by estrogen.  When I talked to urologist he said nope estradiol is fine, you need to have your head fixed by psychology doctor.  Now, whether or not it is estrogen, still remains to be seen, but at least I will insist on checking this version when I talk to endocrinologist.  This time I will probably do shots, because the shot wears off much quicker than Testopel.  I had to suffer through about 6-7 weeks, it was the worst time of my life so far.  Plus I will insist that she will give me Arimidex samples to see if this is really an estrogen issue.  Alternatively I plan to ask for a round of Clomid.  This way I know that testosterone that I am getting is my own, and this is not a reaction to the medicine.  Plus there is hope to ‘restart’ the HPT axis (even though the chances are slim).
Regarding ‘depersonalization’: when I had a first onset of this scary condition 5 days after implantation I could not even describe it to my wife.  It is like – how you describe color blue??  I felt strangely disconnected from the reality.  It was like I do not care about events and people around me.  I remember watching TV, one of my favorite programs at that point, and I do not get it at all.  It is as if I am indifferent, no emotions at all.  Then after this scary condition went away, I started to search internet.  Here is where I got the term:
http://panicdisorder.about.com/od/symptoms/a/DeperDereal.htm
http://www.calmclinic.com/anxiety/symptoms/depersonalization
Here is another story of a man on TRT who experienced similar things (maybe even worse):
http://www.dpselfhelp.com/forum/index.php?/topic/31675-testosterone-replacement-therapy-caused-dp/

Okay, well here is the deal: 

I like well-managed HRT for men with low testosterone as you can tell from my site.  That said, one potential issue that I think they need to do more research on is the testosterone oxytocin connection.  Testosterone tends to lower oxytocin and this can lead to a certain sense of depersonalization if it were extreme enough.  Again, I have never really heard anyone on HRT describe this extreme of feelings, so I don't know:  this is just speculation on my part.  But it might be something to discuss with an expert.
THE MOST COMPREHENSIVE BOOK ON TRT/TESTOSTERONE:
https://www.amazon.com/Natural-Versus-Testosterone-Therapy-Myer/dp/1523210532/ref=sr_1_1?ie=UTF8&qid=1499116128&sr=8-1&keywords=natural+versus+testosterone+therapy
And check out my New Peak Testosterone Program: http://www.peaktestosterone.com/peak_testosterone_program
If you are on medications or have a medical condition, always check with your doctor first before making any lifestyle changes or taking new supplements.  And low testosterone is a medical condition.

Kwn

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Re: TRT failure - what to do next?
« Reply #7 on: April 12, 2013, 06:49:39 pm »
Well......
I certainly hope you have better luck than I did convincing Dr's
About appropriate estrogen levels..
The labs list too big of a range (like T levels ) as "normal"

Many will tell you......well the same crap they have been telling you!
(Unfortunately I listened to them  and wasted 2 years trying anti depressants
Which did NOTHING!)

Arimidex is not a "sample" type medicine.  You need to be tested regularly
As E levels too low are not good either!

Remember!!!!! (Too many people forget this)
Dr's work for you!!!!!
You do not work for them!!!!

Prsartist, you were dealing with the T/E issue, how did you find the solution?  How did you convince your doctor that E was at the source of the issue?  Were they oblivious to that until numbers started to go really high?  Did you switch doctors on the way?

I understand that Arimidex is a women drug, and its use for men is off-label.  But if your patient comes to you and feels like crap, then obviously something is going on.  You would think that a doctor who is really in the business of helping people would go off symptoms. 

Prsartist

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Re: TRT failure - what to do next?
« Reply #8 on: April 12, 2013, 08:31:10 pm »
I suffered for years with the low T symptoms,  (and low T!), I had seen urologists, a couple endo's, family Dr., a cancer specialist, psychiatrist  and a few others...
All of them saw the lab results!  Not one recognized a T reading of 280 WAY to low for a 45 Y.O.
(Because it didnt register on the lab results as being abnormal). They kept telling me everything is normal come back in 6 months and we will recheck....

I STILL don't think the hormone clinic I'm going to believes what I tell them!!
Your actually very lucky!  You found your way here long before I did!!

I'm still not sure I found the solution!  However I feel ALOT better, and things are "working" most of the time!  I had suffered constant aches in every major muscle group constantly for years!
After my 1st shot of T (in the Dr's office) I didn't feel any different for a day or 2...
Then I suddenly realized my whole body ached....except for my right arm!!!!
No aches at all!!!!  That's when I knew I was on to something....

I learned about estradol here from peak and others on this forum, and how important that number is!
(At least it is to my body!).  These raised E levels caused me TOTAL ED. For the 1st 5 months or HRT!
Just trying to save you from suffering the way I did..

Arimidex is actually a breast cancer medication from what I understand..

You will likely have to be your own "expert" in treating this problem, as even my HRT clinic
Is clueless about most of this stuff! (But at least they test what I tell them) and write the scripts!

Read over this site, a more detailed thread of my expierence  is here somewhere.
There is a TON of valuable info here!

God knows where I would be right now without Peak and this site!
As there aren't ANY other forums quite like this!




PeakT

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Re: TRT failure - what to do next?
« Reply #9 on: April 12, 2013, 08:34:01 pm »

God knows where I would be right now without Peak and this site!
As there aren't ANY other forums quite like this!

Glad something is helping...
THE MOST COMPREHENSIVE BOOK ON TRT/TESTOSTERONE:
https://www.amazon.com/Natural-Versus-Testosterone-Therapy-Myer/dp/1523210532/ref=sr_1_1?ie=UTF8&qid=1499116128&sr=8-1&keywords=natural+versus+testosterone+therapy
And check out my New Peak Testosterone Program: http://www.peaktestosterone.com/peak_testosterone_program
If you are on medications or have a medical condition, always check with your doctor first before making any lifestyle changes or taking new supplements.  And low testosterone is a medical condition.

Prsartist

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Re: TRT failure - what to do next?
« Reply #10 on: April 12, 2013, 08:52:04 pm »
I largely credit you and this site for literally saving my life.
I feel ALOT than when I started down this road. (It's a long road)

So I try to drop by from time to hopefully help someone else..
Even though my expierence may not be "Typical"
I usually have 1st had exp. for any strange symptom or side effect!
I seem to get ALL of those! Lol....

Kwn

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Re: TRT failure - what to do next?
« Reply #11 on: April 12, 2013, 09:33:13 pm »
Another interesting observation - I actually went to my GP before starting the therapy, and I asked specifically about estrogen in men, and if I can get test done.  She said - there are no guidelines for E in men, since it is considered to be a women hormone.  She said same relates to testosterone in women, no real medical guidelines, and for that matter if I do the estrogen test, insurance will not cover it, as it as useless for men.
Boy was she wrong.

PeakT

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Re: TRT failure - what to do next?
« Reply #12 on: April 12, 2013, 09:40:17 pm »
Another interesting observation - I actually went to my GP before starting the therapy, and I asked specifically about estrogen in men, and if I can get test done.  She said - there are no guidelines for E in men, since it is considered to be a women hormone.  She said same relates to testosterone in women, no real medical guidelines, and for that matter if I do the estrogen test, insurance will not cover it, as it as useless for men.
Boy was she wrong.

Wow.  Well, I try not to slam the docs.  Most of them are doing their best. 

But these statements are just sheer ignorance.  If her hubbie was suffering from high estradiol and lost all interest in sex, she'd probably be doing some additional research!
THE MOST COMPREHENSIVE BOOK ON TRT/TESTOSTERONE:
https://www.amazon.com/Natural-Versus-Testosterone-Therapy-Myer/dp/1523210532/ref=sr_1_1?ie=UTF8&qid=1499116128&sr=8-1&keywords=natural+versus+testosterone+therapy
And check out my New Peak Testosterone Program: http://www.peaktestosterone.com/peak_testosterone_program
If you are on medications or have a medical condition, always check with your doctor first before making any lifestyle changes or taking new supplements.  And low testosterone is a medical condition.

Prsartist

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Re: TRT failure - what to do next?
« Reply #13 on: April 12, 2013, 09:41:12 pm »
That's nonsense!  Not one part of that statement is true! ( of course it comes from an MD!)
My insurance pays for it, and I get it tested with every blood draw.

I'm starting to believe this is a conspiracy with drug companies!
ED drugs are HUGE moneymakers for these companies
As you have to take them the rest if your life.

They certainly don't want a treatment or cure to take those$$
Out of their pockets!  It's the only explanation for this "ignorant"
Behavior????

Kwn

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Re: TRT failure - what to do next?
« Reply #14 on: April 15, 2013, 02:50:12 am »
Returning to my original question - why going on TRT drove me crazy?  My symptoms were - heart palpitations, sometimes - anxiety/panic attacks, at some point I believe I was pretty severely depressed.  It all subsided as T level dropped when Testopel pellets mostly dissipated.

I was thinking that aside from Estrogen, these symptoms may be brought by thyroid hormones rising for some reason from testosterone therapy.  It is known that high thyroid causes similar reactions.  Here is the post I found:

http://answers.yahoo.com/question/index?qid=20081129004616AAMJhT6

What do you think about possible effect of testosterone on thyroid?
Also, Tapazole cited in the post - anyone used it while on T therapy?

Peak Testosterone Forum

Re: TRT failure - what to do next?
« Reply #14 on: April 15, 2013, 02:50:12 am »