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4 & 1/2 years post RP and 1 year of testosterone theropy!

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Posted 12/8/2007 2:07 AM (GMT 0)

Hello to all my old friends and all the new ones. I guess you could call me an expatriated member of the board. I used to post quite a bit a while ago. Some of you may remember me and after reading the all the new names I'm sure most of you don't.

Yes I have been on TRT for a year now and was waiting to get my last test results back before posting. PSA-0, tetsasterone 183. Yes, the first number is good but the second needs some help! I told my Urologist before my last test back in June that I felt I needed a little more Testim gel as I wasn't feeling up to par. When my test came back a little over 300 he said he thought thats right were he wanted me to be. So I stayed on a half tube of testim untill this last appointment when I told him that all my symptoms were coming back. The hot flashes, the total fatigue, the feeling of worthlesness and maybe worst of all the depression! My Doc said well, maybe thats what its going to be from now on if your T test is around 300 again. I told him that I knew in my heart that it would come back low and I wanted him to let me take more. He said not untill your test come back.

Well, its been one of those long weeks we all know about here, waiting for the "Test Results!" When a week went by with no phone call I started to worry. I had always received a call within a week after my blood test. Of course I started thinking it must be my PSA going up or I would have heard something. I called and left a mesage after after 9 days and no call back. I called again after 11 days and low and behold the next day (today) the nurse called! Your testosterone is really low! The Doc wants you to up your dose to 1 & 1/2 tubes a day! YIP-EEE. Remember that feeling Biker?

So Here I am, maybe a lost sheep, dying to tell someone the good news! Mama B. & Swim Mom, maybe thats why you haven't heard from me in such a long time. Its the Testosterone Blues again!!!! I hope this fixes me like it did a year ago. It just all sort of slipped away from me so slowly without any sort of shut off. I let it go too long without saying anything. no one ever accused me of being the sharpest pencil in the pack!

So here I am, back w/ my tail between my legs. I hope everone can forgive my dissaperance and my spelling! God bless all of you! I might have stopped writing but I never stoped praying for you! Jet Guy are you still doing OK? Been flying down to South Florida at all? Well I guess thats enough for now, my higher dose of T hasn't kicked in yet and I'm sitting here crying like a babe!

Your friend always!

Pete     

Posted 12/8/2007 2:47 AM (GMT 0)
Hey Pete!!!

It so good to hear from you again. Yeah, the low T depression is about the worst thing I've ever been through so I hope the new dosage of Testim gets you back to the land of the living again soon.

My T level runs about 530 all the time now with 2 cc shots every two weeks. I recently had a low period and cried on Swim's shoulder about it. She told me about high estrodial (sp) and I started taking some DIM. It fixed things right up. It seems that guys on TRT sometimes develop high estodial. I don't know why but once again, "Swim to the rescue". You know about that too. Where would we be without her?

Anyway buddy, don't let it get low again. Do something about it when you feel the symptoms. After 12 years of TRT I can almost predict my T level. You know what the symptoms are so please stay ahead of the game.

Again Pete, thanks for coming on the forum. It was your experience with low T and your going on TRT that got me back on track.

Lets get well together...

Jim
Posted 12/8/2007 2:51 AM (GMT 0)

Hey Pete!

I'm really glad to hear from you again!  I've been wondering about you.  Glad to hear you are ok.  How is your co-pilot? 

Bunch of new guys here.  Great guys - you need to read some of their stories.  Biker is doing great.  I have met Mika and Les and they are really neat guys - as are their brides.  I have been to Miami only on quick turns.  On the ground about 30 minutes and gone.

My two PSA checks have been very good and I've passed two FAA flight physicals and have been flying since the first of June.  We've bought new airplanes and I am eager to fly 'em.  Jan and I are still taking care of our grandson during the week and it wears us (her) out, but it's a fine thing we are doing. 

I don't participate much and I don't know why.  I find it difficult and as a result I don't know some of the new guys very well.  Their posts are wonderful and they are courageous and determined.  I admire them as I do you and the old hands.

Keep Your Mach Up,

Bill

Posted 12/8/2007 5:04 AM (GMT 0)
Hi Pete!
So good to have you posting again. . . you'd be surprised how many of us do remember you and think of you often, even when you're not posting. We care . . .

Hang in there, learn to recognize the symptoms and act sooner than later . . you know your own body.

:o) Linda & Bob
Posted 12/8/2007 9:20 AM (GMT 0)
Hi Pete,

Glad to hear from you, and that you're feeling better. We all missed you; so what else has changed? Have you grown a beard? Bought a Harley? Gotten taller? So keep us posted when ever you can.

Glen

ps. I quite smoking 18 mos ago.
Posted 12/8/2007 11:23 PM (GMT 0)
Hello swimmom'

I read that you had recommended DIM for lowering estradiol after having had testosterone replacement therapy. I have tried lowering by using more soy protein, vitamin b-6. and over 100mg of zinc per day.---Can you tell me if you know if this works,---and what is DIM?-----Thanks,

Siberian
age 68
t1c, gleason 3+3=6
prostate size 66cc
13 biopsies--3 pos.
psa 4.7, 4.0--up from 2.9 in 1 year
Posted 12/8/2007 11:40 PM (GMT 0)
Siberian,

Supposedly there is some validity to using the things you mentioned. I haven't heard too many men say just how successful they have been. Of course, I haven't asked either.

Indole Carbinol 3 with DIM is a product Paul's natrualpath put him on after his surgery. His estradiol dropped from 57 to 34 is in about 30 days. It actually helps balance the good and bad estrogens. It does not get rid of estrogen. Life Extension has some good material on the subject. Please ask what your Physician suggests is best for your situation....as we all should. Never hurts to arm oneself with a little info. in the mean time. Paul and I choose natrualpathy. We mix both traditional medicine/treatment using a Physician as our umbilical cord.

Swim
Posted 12/9/2007 11:11 AM (GMT 0)

Hi again.

Thanks for you suport and nice replies! Jim, I'm so glad you are doing so good, I read your  post about your post about your recient goose egg, congradulations! Sounds like your doing great. Bill, did you ever have any doubts you would pass those pysicals? I know I didn't! It's great to hear you are back in the sky where you belong, be sure to let me know if you ever get held over in S. Fla. on any of your trips down here. Linda and Rob, thanks for your kind words, its folks like you that make this board so special! Glen. you old scallywag! Congrats on quitting smoking, I know thats one of the hardest things to do. For anyone who hasn't smoked, they have no idea how hard it is, keep it up, it sounds like youve got it licked. As for me I already have a beard! I haven't grown any higher just wider which I'm sure is testosterone related. No Harley yet, I think you would have to be crazy to ride one in S. Fla. Too many 100 year olds down here still on the roads runing over bikers every day! Maybe when Lisa & I move to the country which should have happened already except the housing market crashed and there is no way we can sell our house now. So we are stuck here untill things pick up again.

Swim, are you mad at me? No hello? I hope you and Paul are doing well. Is your son swimming again this year? Are you busy as always? I know by letting myself get bad again I let you down. Sorry, If it hadn't been for you and all your help I never would have got right in the first place. I'll never forget it! Moma Blue, I know I've let you down too, doing the dissapearing act, I'll try not to let it happen again. It's early Sunday A.M. and my dog is nipping at my heals to go out, so I'll try to tell you more about my crazy passed year later.

Thanks to all again!

Your friend,

Pete

Posted 12/9/2007 3:11 PM (GMT 0)
Pete,

No Dear, how could I be mad at you?? Just got off track and goofed! HI PETE!!!! Miss your smiling face. Glad to have you back with us.

Of course you didn't let ME down but you did let your health slip again...bad, bad Pete! Ya went to all the trouble of seeking out the help of that Doc only to do what now? What's with that? I don't think I heard you...Speak up a little please. Oh, okay.... did I hear you say you let your T fall and all the side effects that put you in such a bad place before, all came back? AH...that's what I thought I heard. Only got yerself to blame so take this one on the chin and move forward Pete. Can't do anything about what's already happened. Ya just gotta move forward and let this one be a lesson learned. TAKE BETTER CARE OF YOURSELF!!! There, feel the lovin now?

I suspect that shots, not gels, may be in your future. maybe try compounds gel before graduatig to a weekly needle. Yes, I said weekly. I also think you may need to insisit on an estradiol level. Have a suspicion that ester is taking over some of the testosterones space on receptor sites. Kinda like space on the bed! What's yer's is hers kinda thing!!! Wouldn't be at all surprised to find your E2 level up in the 90's instead of down in the 20-30 range. If so, there's a fairly easy remedy that'll help. Your T will work much better if ester is put in her place!! Talk soon.

Swim
Posted 12/10/2007 7:44 AM (GMT 0)
Thanks swim,

I will research the Dim.  I understand that it is a form of cruciferous extract.  I downloaded "THE ANALYST" to get more info on di-indolmethane/I3c (indole-3-carbinol..  The gist of what it says is,----Dim encourages the conversion of estrogens to safer forms,,---and helps reduce elevated levels.--- Aromatization is the process of converting testosterone to estrogens.  This process increases with age.  Aromatase blockers, such as DIM and Chrysin can reduce estrogen levels and enhance testosterone levels.  If these fail to increase free testosterone and lower excess estradiol then ask your doctor to perscribe the potent aromatase inhibiting drug Arimidex in a very low dose of 0.5mg twice per week.  Arimidex reduced estradiol by approx. 70% within 24 hours and by approx. 80% after 14 days of daily use. The usual dose  range of DIM for men is 200-400 mg per day taken with food.  Your husband must have been on HRT before  finding out about the PC,  just like me, huh.?  I am trying to reduce insulin  and estrogen levels to see if this lowers PSA without testosterone deprivation.  This is the alternate theory on how to reduce PSA.  After my surgery  my Urologist does not want me to restart HRT for at least one year,---if everything goes well.  In the time now,--and after surgery I intend to do everything I can to increase testosterone and lower estrogen and insulin, NATURALLY--to maintain a proper ratio between testosterone/insulin/estrogen/progesterone. AGAIN, THANKS :-)

Siberian

age68

PSA 4.7, 4.0---up from 2.9 in 1 year

T1c

Gleason 3+3=6

prostate 66cc

13 biopsies, 3 pos.

Posted 12/10/2007 4:03 PM (GMT 0)
Siberian,

What is your E2 level? Are you sure it's a problem?

While Indole / DIM may not be harmful to untreated PCa, Arimidex or Chrysin may be. Chill on the idea of using either of the latter until you consult with a professional. I've studied every bit of information out there and consulted with multiple specalists about DIM, Indole and anastrazole etc. My advise..stay away from anastrazole as long as you have PCa still lurking in your body. When those .000 start coming in, then consider it. Oh, and good luck getting a single Dr. to even consider estradiol important to a man's health. Start early! May take a while.

PS: My DH has had 2 hormone related cancers. He is considered higher risk for a 3rd.

Good luck to you,

Swim
Posted 12/10/2007 6:04 PM (GMT 0)

Hi Pete,

I'm sure the housing market will cure itself before too long, then you and Lisa can get that thousand acre spread at the base of the Sierras Nevadas.

Still haven't smoked, but darn it a friend gave me a good cigar and I just keep starring at it wondering how it would taste with a glass of my 12 year old Macallans.

Glen

Posted 12/10/2007 10:18 PM (GMT 0)
Thanks  swim, for the good info,

My estrogen level on the last lab was 25, after 1  month of trying to reduce it--While that may sound low, it is not, relative to the fact that my Testosterone has dropped to 194 since I am off THR.  I think the proper range is this,----2/3 of the testosterone lever in ratio. . to 1/3 the estrogen level.  Male T range 400-900.---I dont know  male range of estrogen. AGAIN THANKS FOR YOUR HELP.

Siberian

Posted 12/10/2007 11:47 PM (GMT 0)
Siberian..and Pete,

The normal range for male estradiol is 10-30 so 25 is right smack in the middle. 10 is low for a lot of men so don't try to bury it. That wouldn't be good for man trying to recover erectile function. A T level 194 isn't terrible. Isn't wonderful but isn't terrible either. Hang in there.

Swim
Posted 12/11/2007 2:25 PM (GMT 0)

Hello Swim,

Its great is geat to get a fix of "Swim's sarcastic lovin" again! I forgot how much I missed it! As usual you are right. But in my defence, as you know I lean twards my self abusive nature sometimes, I love to beat on myself! Truth be known, my Uro had me using 1/2 tube of testin gel a day. When I started feeling yuky again, without asking him, I upped it to 2 tubes every 3 days thinking that would bump me up since my last test was over 300 @ 1/2 a tube. Well, I guess that didn't help much. Welcome back to Pete's world!  

Thanks all!

Your friend Pete

Posted 12/11/2007 6:54 PM (GMT 0)
Pete,

I knew you'd appreciate the abuse :>) Seriously though, have the Doc test your estradiol. Pesky E2 loves the same receptor site that T likes. Gotta move it over to make room.

Another thing to seriously consider is the way your skin absorbs gel. Paul went to a compound prescription gel and does soooo much better. His is compounded 10mg/gm of gel so he's using a far smaller application area. His skin hasn't the problems absorbing the testosterone on a much smaller area. Paul also splits his dose into 2 daily applications. Whatever works, eh?

If these tricks fail at some point, we figure he can move on to weekly shots. For now, he manages his estrogen conversion and seems to be doing well. Remember, more is not better if the problem isn't the T dose to begin with. Look for the cause! Good luck and have Blessed Christmas Season!

Swim
Posted 12/12/2007 2:22 AM (GMT 0)

Swim,

I have tried to covince my Uro to check my estradiol more than once as you suggested long ago. His reply is No, you don't need it. Unfortunatly it took me a long time to find a doc who would even consider giving me T and to argue w/ him may not be in my best intrust. I also asked that endo I went to last summer about my thyroid, the guy who told me I'm out of my mind using T w/ my PC history and he also sayed no! That was the one and only time I saw him! I once a long time ago I went to a "you pay" testing lab where they just tested your blood w/o a doctors prescribed sheet, the kind of place employers pay to do drug tests and you paid them cash. Maybe I can try that if they even know what estradiol is? Is there any other way you can think of? Can you get this stuff in a supliment? I know you think it should be done under a doctor's supervision but I'm kind of stuck there. I know, I'm a hopeless case. I still don't even know whats going on w/ my thyroid or lack of one. (To anyone reading this and wondering what I'm talking about, I had my thyroid removed about 10 years ago.) I just wish I could find a doctor who isn't a big head, arragant, better than thou know~it~all!!! One who would realize I'm not as dumb as I look. Most see a 6'3 ~ 300+lb broken down guy w/ a medical history the size of a novel looking down at them. I don't know if its me acting like I know more that the average broken down old redneck (I'm not) they usually see here in S. Florida because of my appearance or just a case of Nepolian complex, but they just don't seem take me seriously. Oh poor pitiful me! Just kidding, I kind of like myself these days! Ahyhow, 4:00 AM comes early so I'm off to bed.

Goodnight all,

Your friend,

Pete

Posted 12/12/2007 2:41 AM (GMT 0)
Hey Pete old buddy,

Pardon me for butting in here but I've found the same reaction from uros who won't even listen to me when I try to talk to them about balancing hormones. Happily I did find one who prescribed my T shots. His only concern is that my PSA doesn't rise, and this is a good thing.

So I try supplements. And while I agree that it is best to have a doc in on what you are doing, sometimes they don't want to do it or just don't care. My outlook on physians has radically changed since getting cancer. I used to think they could do no wrong and knew everything. Not any more. I take control (and responsibility) for my own life and will do whatever and take whatever it takes to keep myself livable. My quality of life is really good now and had I believed what my original uro said, I would either be a zombie on Prozac or dead from a bullet wound.

I really hope you find a solution Pete. Please don't give up because of a couple of bonehead docs. Your story here on the forum saved my life and you and I need to be here to spread the word to other guys that there is life after low testosterone...

Jim
Posted 12/12/2007 4:42 AM (GMT 0)
Pete,

It isn't enough to have PCa to deal with is it? All the other things you've had to cope with and endure come with so much baggage as well. I've heard the same stories over and over again. What a shame we can't just drop a set of vitals ot symptoms into a machine and out pop a simple cure. Star Trek makes it look so simple! Hang in there Pete. Yahoo has a very useful hypogonadism forum. If you find time, you may wish to seek some ideas from some of the guys there.

Swim
Posted 12/13/2007 5:37 PM (GMT 0)
Hey Jim,
If you don't mind me asking, what supplements do you take, what for and what are they suposed to do for you? If something is working for you, maybe it will work for me?
Beam me up Swim! I'm ready for the Star Trek cure! Thanks agai for your help. I'll try Yahoo when I get some free time, Mmmm, free time?? what's that?? Residential building is dead in Florida like everywhere I guess but commercial building is going through the roof! We have so many jobs going I can't breath, 12 hour days, no lunch, no breaks & then a nice 11/2 hour commute home in the wonderful in-season Rt #95 trafic! But when I get home my sweet pup & parot are waiting for me and Peteworld is just fine.
Oh, I don't think I told you, Pete Jr. joined the Navy! Now both my boys are working for Uncle Sam. Lisa hasn't got used to the empty nest yet but both boys are coming home for Christmas. It's going to cost Santa $1,300+ to get them home but it will be worth it! Do you know that neither the NAVY OR THE AIRLINES HELP THOSE BOYS W/ THEIR TICKETS? Isn't that a sin? What about the poor kids that an't aford to fly home? Support the Troops?????? Who is? Santa sure is!!
Your fried,
Pete
Posted 12/13/2007 6:52 PM (GMT 0)
Hang in there Pete,

Jim is taking a product called DIM....short for dinndolimethane. It s a vegetable compound used to treat women with breast cancer. DIM's purpose it the help the body convert dangerous estrogens to more useful ones. Indole with DIM is hwat Paul's homepath put him on nearly 3 years ago. Although Paul takes anastrazole (arimidex) in a tiny, tiny dose now, he did take the Indole/DIM for 2 years. When his Androgel did what yours is doing now, he switched to a compound and changed to the anastrazole. So far so good.....Spock out!

PS: We do support our troops. Honestly, the American people do more to support our men and women during times of conflict than any other country in the world does. It would be nice to have the AIRLINES pitch in and lower travel costs for the troops wouldn't it? Until they are financially stable again and willing to extend that stability to our troops, we'll have to find ways on our own.

Your boys are very fortunate to have a family that is able to bring them home. A few less luxuries on the part of many more families would probably bring a lot more of our troops home as well. There was a day when a family did without even important "things" for the whole year just to afford something a loved one needed. Entire extended families pitched in and did things together. THAT is what has truely been lost in our country. We've confused family and communtiy (neighbor) with entitlemet. When you think about it for one split second, which is alll the time it takes...you know plenty of people out there who wouldn't give up cable or a cell phone to feed their hungry neighbor!

Of course you know some who would give the shirt off their back too. Your boys are blessed that you and Lisa are both able and wanting to bring them home. Let me be the first to say...if you could not, your family here would have found a way for you and Lisa to bring the boys home!!!!  On that, you can be sure :>)  Have a wonderful and Blessed Christmas.  

Posted 12/13/2007 8:26 PM (GMT 0)
Hey Pete,

Yeah, Swim told me about the T getting confused and messing up my estradiol level. I started feeling tired and down all the time and knew it wasn't my T level. So I got some DIM in a health food store and after a week or so started feeling like my old grumpy self again. If it ain't one thing its another in this cancer battle. I'm just glad Swim is around and has so much good info. She has guided Paul, you and me through this maze. Too bad doctors don't see the value of balancing our chemistry.

Good for you and Lisa getting the boys home for Christmas. The "empty nest" is especially hard during the holidays. MaryLu and I have spent a few Christmas' alone together and its not fun. Takes a while to get used to the quiet and lack of messes around the house but we learned to enjoy each other much more.

I hope you get things straightened out with the hormones. Life is too short to go around in the dumps all the time.

Stay close...

Jim
Posted 12/14/2007 6:59 AM (GMT 0)
Hello swim and pete'

My angrogel two packets per day would never get me over 400, and the cost of $485.00 would soon have gotten me into the "donut hole". I talked to my doctor about having it compounded and she agreed.  It was 10% testosterone in a gel dispensed in a syringe where  I was supposed to rub on 1 ml per day.  It worked great, but after my psa had risen to 4.7  from 2.9  she told me to see my urologst.  I had biopsies done and 3 were pos. I was told to stop taking the testosterone supplement.  At this point it was found that my testosterone was 1040.  It appears that the doctor and the compounding pharmacist had made the dose too strong---I should have been applying only 1/2 ml per day.  The cost of the compounded drug was only 68 dollars.  This dose if applied at 1/2 ml per day would have lasted 2 months  and was much ,much more cheaper then androgel---AND WORKED MUCH BETTER. It is now questionable whether the increased testosterone numbers for about one year might have caused or accelerated my prostate cancer. I am now scheduling prostate surgery in February using the DaVinci procedure.  In the meanwhile I am trying to reduce my PSA  and prostate size. I have been using green tea, increased zinc(100mg per day) increased B-6,Barley Green, and chlorophyl. My E2 is 25 on my last lab report and my testosterone is 198.  Swim has got me interested in DIM, and I am researching it.  I am expecting that the next lab will show increased Testosterone, lower PSA  and lower E2. I am trying to do all this naturally, since the Urologist does not want me to start Testosterone replacement for about a year after my surgery,---If everything turns out alright. I know the benefits of Testosterone replacement and I will be  trying to get back on track as soon as posible.

yeah

Siberian (Ken)

68 age

T1c

Gleason 3+3=6

prostate 66cc

13 biopsies, 3 pos.

PSA 4.9, 4.0 up from 2.9 in one year

Posted 12/14/2007 7:59 PM (GMT 0)
Siberian, (and PETE)

Your dose (Siberian) should have been compounded for ease of use. Compounding a concentration of 10mg/gm of gel makes it simple. Transdermal testosterone doses for men are pretty much standard at 5, 7.5 and 10 per day. How it's concentreted is really up for discussion. I'm personally into the KISS method! Like to keep details to a minimum whenever possible. Paul's testosterone is dispensed in a 40 gam jar. He uses a 1cc syringe or a Barbie scoop (1gm measure). Simple...draw it up, squirt it out, rub .5cc on twice a day....he does that is!

PETE...try a compound. I'm sure your Doc would agree to it. A lot of Docs aren't familiar with just how to prescribe the dose. We did the work for Paul's Urologist by giving him the name / number of a qualified pharmacy and the typical drug doses / concentrations. Make life easy by saying it is best to order "dose per gm of gel."
Testosterone is a schedule III drug. It can only be prescribed in 6 month supply max. Cost is about 30 bucks a month, 85 for 3 months last I knew. If ya need a reliable compound pharmacy, Clark Professional Pharmacy in Ypsilanti MI. specializes in hormones. I'm sure there are others.

Si,
As for watching that PSA..2.9 was a red flag to biopsy a man using hormone therapy. Age really isn't the issue but the number should have been of concern. My opinion? Any rise in a man's PSA while on testosterone would get a look see. Any measurable PSA prior to prescribing testosterone would get a look see too. Good thing your Doc took action when it popped up higher. A 66gm prostate can handle a 4.9 PSA and still harbor a small cancer. We'll hope for that! Hopefully (prayers are with you), the cancer is as early as it sounds. Take home messege...Your testosterone had less to do with the cancer than your genes did. Once it developed, testosterone just fed the beast.

Swim
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