What's a Delmer Look Like?: Hormones Archives

June 6, 2008

A Health Update and Obliques Question

I get blood drawn on Thursday to have my hormones checked. I expect that my prolactin will have gone up just a bit as I couldn't be taking a smaller amount of Cabergoline. We'll see what happens.

On the cycling front I have have a question for any other cyclers (or just people with opinions). And maybe I should explain what happens. On The Mighty Schwinn I'd get various aches and pains after pedaling around for a while; I recall thinking that I could do 45 miles each and every day without any leg burning as that's when they seem to go to hell — and then, of course, I had a day of 50 or 60 miles without any thigh discomfort which led me to write down everything I'd eaten that day as it may have been a nutrition issue. (The interesting thing about the thigh burning is that by the time you get it you're tired anyway and want to take a break but not pedaling hurts more than pedaling does.)

Anyway, the leg discomfort doesn't always come along.

What does always come along is a pain in my obliques and I remember the first time I got it. I thought something like, "What's up with my obliques?" and then slipped into, "What makes me think those are my obliques? How would I know that's what they are? Where have I heard that term? How come my high school physiology teacher isn't around when I need him to witness that I actually remembered something from his class? Is it too late to get that "B" changed to an "A"?

And then the muscles I thought were my obliques would pain me a bit and I'd sit up and stretch some. (I Googled for this when I got home, and the muscles are my obliques; they run on either side of your torso just under the love handles.)

Two years ago I read about exercises I could do to strengthen them (riding a bike makes then uncomfortable but does nothing to make them stronger). Unfortunately, one of the exercises was not reading so just reading about what to do was not enough to do any strengthening of the core. Oh, whenever you read about obliques it's often part of an article called something like, "Strengthen Your Core and Meet More Chicks." Okay, that's not true and it's my guess that obliques get overlooked as they have no chick-drawing ability. But "core" is always there.

The "core" muscles, and I'm not going to do any sort of fact checking, are the abs, back, obliques and maybe one or two other things. If your abs were Scotland and your back were England your obliques would be Wales; seemingly unimportant, off to one side, and rarely thought too much about (but lovely in the spring). [Forgive me as I type "Wales" and "Wales" two more times; I needed them for the links.]

And this is part of my problem. I do squats several times a week and had been sort of hoping they might be catching the obliques some. Yes, yes, yes! I know how muscle groupings work and am aware that squatting doesn't catch everything and is unlikely, for example, to provide bulging biceps. However, squatting does hurt just a little bit sometimes (in a good way) and requires good posture so as to not get hurt. As you may recall from elementary school good posture was the key to happiness, fame and fortune and when you combine the good posture with the knowledge that squats work the glutes (ass) lower back and is often mentioned in sentences that contain, "to improve your core strength," I hoped they might be catching the obliques in peripheral sort of way.

 (Even though a part of me knew that was unlikely.)

And that's how we got where we are today.

On The Mighty Schwinn the obliques eventually get to aching but it likely comes at 90 minutes.

On The New Bike I'm getting uncomfortable fifty minutes.

I'm stretched out more on TNB due to the bike's geometry (and who said you'd never need geometry after you left school?), and this is probably good as I'd get to feeling cramped on The Mighty Schwinn toward the end of a ride (I've taken steps to stretch the Schwinn out a bit). I've had TNB adjusted a couple of times to decrease the amount of stretch and weight on my hands (that is, I'm not in a very aggressive riding position; my handlebars are about an inch higher than my seat). The point is, TNB seems to be set up right, or at least more right. 

What I need to know is: Has anybody had any success getting the obliques to quit aching while riding? Do the exercises help? Will there always be some discomfort? Do I just need to butch up a bit?

I've been doing an exercise that mimics chopping wood as if you were chopping from left to right and then right to left (using 9 pounds). Also some crunches that focus more on the obliques.

Are there any other tricks?

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Posted by delmer at 7:22 AM | Comments (11) | TrackBack

May 22, 2008

Dostinex / Cabergoline and Weight Loss

Once in a while someone will mail me and ask me about my experiences with pituitary tumors. They'll also, often, share their experiences. And this is all good as it makes me feel like I'm helping people, that they're interested in helping others, and that the blog has purpose.

This is a portion of something that came in the mail the other day:

I lost weight doing nothing [which was awesome, I used to weigh around 260 and got down to 235/230] …

It's a short snippet of a larger mail and the part that interested me the most. (The rest of the mail talked about changes the writer had noticed that would come with higher levels of testosterone.)

I started taking Dostinex in December of 2002 and began losing weight in January of 2003 without making any other lifestyle changes. I've just noticed my Hormone Table lacks weights for January through May but by June I was down 40 pounds.

Dostinex is an ergot-derived dopamine receptor agonists just like Fen-Phen,a weight loss drug that was pulled due to its link to heart-valve problems. The same heart-valve-problem link has been made to Dostinex (doses are typically very low and not thought to need to be worried over) but I don't know that the same weight-loss characteristic has been applied to it. And I honestly don't remember how Fen-Phen was supposed to work. When my endocrinologist and I talked about my weight loss he remarked that Dostinex didn't have any known weight-loss properties (also at that time the heart-valve problem had not come to light.)

[I remember from college Botany that ergot fungi, which gets into wheat, can give a person hallucinations much like LSD. One theory is that ergot fungi played a role in the Salem witch trials. I was watching Quincy, once in college, and as he was working through a problem in his case I yelled out, "It's ergo fungi!" And it was, which greatly impressed the girls around me, but not to the point they felt they needed to cuddle me.]

I've drifted.

I've often wondered about my weight loss. It always seemed related to Dostinex and hormones somehow — I tried to lose weight and couldn't then I started Dostinex and it came off me with very little effort (and certainly less effort than when I was trying and getting nowhere) — but, you know, I'm a sample of one and it's always good to increase the sample size.

It provides a bit more validation.

[I'm not saying it was Dostinex that caused the weight loss. My guess would be more the change in hormones. But I don't know.]

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Posted by delmer at 2:47 PM | Comments (6)

April 17, 2008

Blood Work Update

There may be only one or two of you who will appreciate the disappointment I've had the last couple of days.  I had blood drawn a week ago and it came back with a prolactin level of 8.4 whereas it had been, I thought, 7.0 the last time. This was with a meds reduction going from .25 mg on Sundays and Thursdays to just .25 mg on Thursdays.  The 8.4 level is still within range, and by a good margin, I'm just of the mindset that lower is better with respect to testosterone levels, though I don't know for sure.  I may have higher T levels than ever even with my prolactin up a little; I'd be surprised if that were the case. 

Anyway, I just went to update the Hormone Table and found I'd misremembered the last level.  It had been 8.0, not 7.0.  So, I'm a lot happier. (While I wish I could blame the faulty memory on the .4 increase in prolactin, I'm afraid I'm just forgetful sometimes.  I still know the IP addresses of all the network printers in the building which is more useful on a day-to-day basis.)

So ... 

I had blood drawn April 10, 2008.

My meds had recently dropped from .25 mg of cabergoline twice a week (that's 1/2 a pill, I used to take three at a time, twice a week) to .25 mg once a week.  The recent draw was after I'd been on reduced meds for 8 weeks.

My prolactin has increased from 8.0 ng/mL to 8.4 ng/mL since February which is the largest jump I've had.  I'm not sure what it means with respect to testosterone level as that isn't tested.

Normal prolactin range for an adult male is 2.1 - 17.7 ng/mL.  So, I'm still in range.

I seem to have gained 3 pounds since my last doctor's visit, which would have been February 7.  Regardless of any of the voodoo science I apply to my weight, I am trending up. 

I've been trying to lose weight since February and am a bit embarrassed to say I've not been doing a great job of keeping track. I've certainly lost some recently, but I haven't been weighing daily like I used to.  It isn't uncommon for my morning weight to fluctuate by several pounds, well five wouldn't be unusual, and without the daily weighings I don't get the best snapshot of where I am.  Recently I've weighed between 245 and 249 in the mornings;  I was at 242 in February and 233 around August/September 2007. 

Per my Tanita scale, my body-fat percentage has trended up a bit too, by about 2 to 2.5% (since the 233 weight), which would be something like 6 pounds. (By the way, I fall into the class of people that think the body-fat measure on a Tanita scale is better for determining trends than it is for dead-on accuracy. I take body-fat measures before bedtime, when I am better hydrated and, should you care, there have been times when my body-fat reading has been lower while I've weighed the most I have for a given period of time -- from what I've read it appears to be related to my hydration level.)

In the gym (well, garage) all of my lifts have increased rather well since the New Year.  I suppose it isn't surprising that the snow-forced break from cycling might lead to better performance under a bar. And, likely, some fat gain as well.

I hate to keep saying I'm not worried about where my weight might go, because I am somewhat.  I see my doctor again in June; let's see where I am then, as I'll have had some time to cycle and be outside more.

So far, my clothes fit about the same, though I don't know I'd notice if they'd gone from a bit loose to not loose.

While I'm not in love with the format of the pituitary-only site, all of this will eventually end up there.

Posted by delmer at 7:16 AM | Comments (4)

February 24, 2008

In Closing and My Hormones

Regardless of anything else, I'll continue to post my hormone stuff as new things happen. I'll be getting blood taken in about two months (and three months after that, I think) if anybody wants to mark their calendars. I'm guessing I'll eventually get another MRI.

Today was a big day of posting as I wrote a bunch of stuff last night that I thought I'd dole out over the next couple of weeks leading up to WADLL's three year anniversary.  Following an incredible breakfast I thought I'd post them all today and call it quits even though it'll bring me in at under three years. 

Anyway, I didn't want to go without saying something about my hormone postings.

I'll eventually copy the pertinent hormone-related stuff to:

http://mypituitarytumor.blogspot.com

Regardless of anything else I always update Alt.Support.Impotence in Usenet.  The members there gave me my life back and I like to contribute to the community. You can find all of my postings by Googling groups:

http://groups.google.com/groups/search?hl=en&q=d+hamilton+group%3Aalt.support.impotence&qt_s=Search

 Sort by date to get my most current contributions (as they are).  I always put "Blood Work" in posts about my hormone tests.

Posted by delmer at 2:40 PM | Comments (7)

February 13, 2008

Hormones and Weight Analysis

We'll start with the summary.  The rest of the post, and it's sort of disjointed, appears in the extended entry.

I was a bit worried about how my weight has gone up in the time that has passed as my meds have decreased. After writing everything out I've determined I'm not going to worry about it.  I can wear the shorts I wore to England this past August despite what appears to be an 8-pound weight gain since then. (I don't think I'm actually up 8 pounds). 

I cannot wear the pair of jeans I could barely snap from this same period.

However, let me say, I went to England, we had Thanksgiving, we had Christmas, I went on a Cruise. Worse things could have happened.

Again, I don't think the weight gain is anything to worry about. For fun I'm going to try to make my way back to the next smaller sized jeans. I could hardly be taking any less medicine. It'll be interesting to see how this goes.

[Greeneyezz has suggested I mention my height. And it just occurred to me my weight isn't mentioned anywhere except the extended entry. This morning I was a hair over 6'4" and I weighed 241 pounds. (17 stone 3 lbs; and why do you guys do it that way?)]

Today I'll go on a little bit about my weight, my eating, and my exercise habits.  I'm doing this as I know some folks come by here to catch up on what's going on with my hormones and may have noticed that as the amount of medicine I take has decreased, my weight has increased.  I know I've been curious about any cause and effect that might be going on, so I thought I'd take a moment to cobble some thoughts together.

[And, if I'm going to be completely honest, I'm just a little bit concerned. The whole messed-up hormones problem sort of sneaked (or snuck) up on me. So I'm keeping a close eye on things.]

Back when I was 370 pounds I tried very hard, and for a long time, to drop weight; I had limited success and any weight I lost I quickly regained.  At one point three of us at work tossed $100 each into a hat and whoever lost the most weight in 90 days would win the whole pot; even with that kind of motivation I wasn't able to drop more than a few pounds.  [Fortunately, the contest was extended and ended some time after December 2002.) 

In December of 2002 I started taking Dostinex to control my prolactin and I started losing weight shortly thereafter.  In June of 2003 I weighed 330 pounds. On October 10 I weighed 308.  So, in 10-months time I dropped 62 pounds (roughly).  The only 'new' thing in my life was Dostinex.

I've been lifting weights on a regular basis since 2000; at World Gym for four or five years and in my garage the last two. Not long ago I made the comment that if you were to see me in the gym you might think to yourself, "That guy looks like he should get a refund or something."  I don't look like a gym guy; I look like a normal guy.  (Despite the fact I don't look like a gym guy, I do get a kick out of sometimes putting a shirt on and having the sleeves bite into my arms. This thrill is typically short lived, however, as my 9-year old doesn't really care for me to wear his things.)

Also, for most of that time I was taking walks of three to six miles almost daily.  I have body-weight logs on my PC going back to late 1999; if I was tracking my weight, I was most certainly exercising (I typically walk a bit over an hour which puts me at four miles).

I weighed 239 in May of 2006.  This is about the time I started riding The Mighty Schwinn a lot.

In October of 2006 I came in at the lowest I've weighed since I was about 29.  I hit 224 pounds.  During this time I was riding the bike a lot and lifting. I thought I was eating well enough and I was still writing everything down. I had a brief concern that my weight was going to continue dropping regardless of what I tried and joked that I might let it get as low at 219 before I went on a diet of only ice cream.

It's probably important to note I was wearing 34-inch jeans.  Thirty-four by thirty-four to be exact, which gave me perfect symmetry.

Alright. We're getting close to the end.

Today I weighed 241, which takes me up 17 pounds since December 12 of 2006 (14 months).  In August 2007 (pre-trip-to-England) I weighed 233 lbs, so I seem to be up 8 since then.

Here is what I think we need to know. In August I could get into 33-inch jeans and snap them if I didn't breathe too hard. I can't do that now. I can, however, wear the same shorts I wore to England and, of course, the same jeans. 

I think I have a little more fat on me, but I was getting tired of the lack of gains I was making lifting and I'd started to eat more as nutrition was sort of my weak spot.  [I'm aware that cycling as much as I do doesn't lend itself to great gains in the gym, but it isn't my goal to compete at The Arnold Expo.]  I also don't think I actually weigh a solid 241 and recall that in the past I'd see spikes, usually after visiting my parents, of five pounds or more for several days followed by a return to a much more acceptable weight.

And I've certainly added some muscle, but I can't imagine it's anything like 17 pounds.

Posted by delmer at 12:28 PM | Comments (3)

February 12, 2008

Hormone Update -- February 2008

Alright, let's start with the medicine news. My cabergoline (generic form of Dostinex) has been dropped to 1/2 pill once a week. Most recently it was 1/2 pill twice a week.

If we pretend I'm taking name-brand Dostinex, which was $33.00 a pill, I'd now be down to $16.50 a week. Multiply that by 4.3 and you have $70.95 monthly. Compare this to the $851 per month of a couple of years ago and you can see I'm doing all I can to drive health care costs down. (It seems I've reported this cost in the past as "about $1000 per month had I not had insurance."  That may have been rounding, as the $851 plus my copay of $45 comes closer to $900. I've checked my postings in Usenet and "approaching $900" is how I'd referred to the August 2004 cost there.  Of course, maybe I never said it was close to $1000 in the blog).

One of the more interesting things about cabergoline is that I think it is one of the few pills that might actually make a man's penis bigger. At least when it comes to girth.  The pills are about the size of Tic Tacs and I think they'd be pretty easy to shove up the tip of the penis — a lot easier than an Enzyte would go in there I'll bet  (let's see Bob smile and wave with couple of pills shoved up his dick). Of course, Tic Tacs would be a lot cheaper.  (Beware:  The spearmint coating may irritate the foreskin of the uncircumsized man.)

During this last appointment I weighed 242 pounds. I'm too lazy to trot up the stairs to see if I can still wear the shorts I wore to England, but I'll try to do some sort of weight analysis later this week. 

So, what do we need to know?

  • Prolactin: 8.0, up from 7.8 (where normal is 2.1 to 17.7)
  • Weight: 242, up from a low of 229
  • Meds: Dropped to 1/2 pill (.25 mg) once a week

The next drop in medicine would be to be off it completely. If that happens I will still be monitored by my endocrinologist at least annually.

My Hormone Table History Link 

 

Posted by delmer at 7:36 PM | Comments (1)

February 9, 2008

The February Blood Draw

Guy and Gals ...

I had more blood taken. I'll have a more complete update tomorrow, but I wanted to take a moment to mention that after the decrease in meds this past time, my prolactin went up .2 of whatever the measure is. I'll have that tomorrow as well.

So, it went from 7.8 to 8.0.

I'll know Monday of my cabergoline is to be reduced further.

Posted by delmer at 12:38 AM | Comments (0)

December 4, 2007

More Blood Work

I had blood drawn last Thursday. After the prior draw my meds were dropped from 1 mg of Cabergoline (generic Dostinex) weekly to .75 mg weekly.

As the pills come in a .5 mg size this means I went from taking one pill twice a week (Sundays and Thursdays) to 1/2 a pill on Mondays and a full pill on Thursdays. 

And what has happened since the draw of September 25?

I weigh a pound less, coming in at 236.

My prolactin remains unchanged at 7.8 (2.1-17.7).

See the Hormone Table Summary in living color.

By the way, my meds have been dropped to .25 mg twice a week -- or, I'll be taking 1/2 pill on Sundays and another 1/2 on Thursdays.  [You may recall that at one point I was taking 1.5 mg (3 pills) twice a week (for a total of 6 pills weekly).]

I thought you'd want to know.

[I forgot to mention the part where I have two pituitary tumors that cause my prolactin to be elevated which, in turn, causes my testosterone to be low.  I thought I should add that bit for Googling and blog-search purposes.  Click the 'Hormones' category for more in-depth entries.]

Posted by delmer at 9:02 PM | Comments (6)

November 6, 2007

An Anniversary

As I mentioned at the beginning of the month, November will bring with it two Celebrations and one Anniversary.

We've already celebrated the 2000 miles I've put on The Mighty Schwinn this year, and I think you'll have to agree, it was pretty painless for you.

Today we'll celebrate the Anniversary. I'm not sure, as I type this next comma, how painless this is likely to be for you. 

You see, What's a Delmer Look Like is all about helping people (at least some of the time).  It's during those helpful times that I actually feel like I'm contributing to society.

Sometimes helping others requires revealing ugly things about one's self. And that might cause you some pain.

Well, let's see where this goes.

The Anniversary: Today my belly button is one-year old.110606_bellybutton

It was one year ago today that I had surgery to correct screwed-up-hormone-induced gynecomastia.  (You can read all about the messed up hormones by clicking the Hormones link in the categories listing.)  As I received treatment and my hormones came back to normal-man-level levels I dropped a bunch of weight: 10 stone as a matter of fact.  CXL pounds for you Romans. 65.3 kilograms for those of you who refuse to accept the fact that the metric system is a dying system.  Several really big bales of weed in drug parlance. One Bush twin on a non-binge night. One hundred and forty pounds.

(It took three years. By the way, in that photo the navel is one-year old correction one-day old; it's a bit hairier now.)

Since I was having the chest done I thought I'd have a tummy tuck at the same time. It made sense and was a money saver.

As part of the tummy tuck my old belly button was removed and a newer, safer, model with driver's side airbags was installed. I saw pictures of the old navel and have to admit it was sort of an odd sight seeing it laying on a table.

At some point I recently teased that I might have an additional story to go along with my belly button tale.   I'd waffled on this and a friend of mine, who knows about the surgery, said, "Oh no… you've got to tell it. Nobody'll be put off." She thought I was going to tell the story I told above.  That's not the story.

Before I continue I should point that as a naked man in the shower I do a pretty thorough job. I touch everything at least once and mid-shower have myself sudsed up to the point that if you were to lay me out on a table I'd look like a vanilla banana split slathered in whipped cream with a cherry on top.

Having said that, when the tummy tuck was new I didn't have any real feeling on the outside of my stomach area. It was sort of numb and it grossed me out a little to touch it, so I fell out of the habit of giving it and the belly button the scrub they used to get. At some point I lost my bottle brush.

Alright, I never used a bottle brush. But wasn't that a nice image?

So, and this is where I get uncomfortable, the other night I was sitting, shirtless, in the recliner, reading a bit, watching a Grounded For Life rerun, and wondering, "what the hell is that in my belly button?"

It was similar to that sleepy bug stuff you get in the corner of your eye. People my age will remember Rosanne Rosannadanna doing a bit on it. For you younger folks, it's the crusty stuff you sometimes find in your eye in the morning.

It was at this point that I realized I hadn't given my navel a serious cleaning in about a year; sure, it had gotten the passing scrub, but not the one-on-one attention it deserved. That couldn't be good.

It was a second later that I realized that my navel had a feel to it that still left me feeling uncomfortable about sticking a pinky into it.

So, I got some Q-Tips, some alcohol, a vinegar & water solution, a bit of soap, a portable sandblaster and I got busy.

My navel is now so clean you could slurp Jell-O shots out of it. 

I'll be taking Jell-O shot slurping applications starting in December.

Posted by delmer at 10:08 PM | Comments (12)

September 30, 2007

September 07 Blood Work

Update: I forgot to add the important part of my recent blood work: My most recent Prolactin reading was 7.8 (where 2.1-17.7 ... it was as high as 65).  My Prolactin is up a bit since the last blood draw. In the past 5 months I've gained 5 pounds though I'm wearing the same clothes I was wearing five months ago (and a year ago when I hit 224). Without going into all the details, I'm not concerned about the weight.

I asked my doc about an MRI as it's been several years since the last one. If I had a prolactin-secreting tumor an MRI may not be necessary. As he's not sure my tumor is Prolactin secreting (though certainly the cause of my problem) I may have another MRI next year to see how they're doing.

As many of you know I have a couple of pituitary tumors that used to cause problems with my Prolactin. The Prolactin, in turn, caused problems with my Testosterone and at one point drove it to a level as low as what your typical 12-year old girl might have.  Which is to say, it was very, very low. Low enough that a lot of things quit working and the part of me that monitored those things didn't notice or care.

At one point I was taking three Tic-Tac sized pills (Dostinex, a.k.a. Cabergoline)  twice a week for a total of six pills a week. Without insurance this would have run about $1000 per month.

As time has passed my Prolactin has dropped to the point that I'm now taking one pill twice a week. The last reduction in my meds came about 5 months ago.

This past Thursday's blood draw shows that in the past 5 months my Prolactin has gone up just a hair. It's still well within range, however, and may be dropped to 1/2 pill soon.

As for my Testosterone, I've got about 25 times the amount I had at my lowest point. So much, in fact, that even as I'm sitting and doing nothing at all it oozes out of my fingertips.  'I've actually had to put Saran Wrap over my notebook keyboard to keep the computer dry and the motherboard from shorting out.

This has paid off in another way as my interest in browsing for Internet porn has increased by about 25 times these past few years.

Posts that people with pituitary tumors, low libido or low testosterone might find interesting:

A very long post that goes over my experience with my pituitary tumors. There are some links other sites and additional info. If you suspect you have a Testosterone problem you might want to read this. I really need to rework it.

My Blood Work History

Posted by delmer at 9:04 PM | Comments (4)

June 29, 2007

More Blood Work

As you know I have a couple of pituitary tumors that screw with my hormones. I've been taking Dostinex or Cabergoline (the generic) for the last four years. Two months ago my Cabergoline was dropped from .75 mg. twice a week to .5 mg. twice a week. It should be noted that at its highest I was taking 1.5 mg. twice a week.

I had blood drawn last week. My prolactin reading came in at 7.6 (where a reading of 2.1 to 17.6 is normal). So, my prolactin us up a hair while my most recent Cabergoline dosage was dropped by 50%.

This morning I weighed 231.

For my Blood Work History Table click that link.

You can click the Hormones category to review my history with goofy hormones.

Posted by delmer at 11:05 AM | Comments (1) | TrackBack

April 14, 2007

April 2007 Blood Work

As regular readers know, I am a delight to be around. And I have two tumors on my pituitary gland which cause my prolactin to be high and this, in turn, causes my testosterone to be low.

I take Dostinex, or recently Cabergoline (the generic form, which I've found to be just as good), to control the prolactin and this has permitted my testosterone to reach levels that allow me to, once again, appreciate The Three Stooges.

The most interesting thing about my recent blood work is that my hormones are staying in line even as my cabergoline dosage is dropped. It was dropped again following the most recent trip to the endocrinologist and I'm now down to .5 mg twice a week.

As often happens during my visits with the endo he asked me if I'd had sex recently as he likes to know how the tools are doing; I told him I hadn't knocked boots in a while. He then asked if I'd been masturbating.

"Did someone in reception complain," I asked.

Yes. That's a joke I've made before. I've repeated it here for new readers.

A summary of my hormone problems and treatment history follows with a bit more info about the most recent blood work. Immediately following are links to:

Dostinex Recall: Basically, it was a packaging issue and the generic works just as well (for me, anyway).


Heart Valve Problems with Dostinex / Cabergoline Links:
My disjointed entry
NY Times (which now requires registration)
Michael J Fox's Website


A summary of my experience with low testosterone follows — it needs some serious editing. The blood work summary has been snipped from the text but can be found at the link below.

Blood Work History Chart


Hormone Troubles Summary:
April 13, 2007 Notes: I’ve been taking Cabergoline, the generic form of Dostinex for roughly 8 months. My last blood draw, in December of ‘06 was taken on a Tuesday when the vast majority (and I’m pretty sure ALL) other draws were taken on Thursdays before that day’s meds were taken; I take Cabergoline on Sundays and Thursdays. The last blood draw showed Prolactin at 6.9 on a Tuesday when the prior draw, from a Thursday in October ‘06, was 7.4.

The April 13 draw has Prolactin at 7.5 ng/mL (where the normal range is 2.1 -17.7) which is .1 higher than the October ’06. So, the Prolactin is up a hair but it should be noted that in January my meds were dropped to .75 mg twice a week from 1 mg. twice a week.

It may be worth noting, as well, that at my peak I was taking 1.5 mg twice a week (three Tic-Tac sized pills twice weekly for a total of 6 pills). I asked the doc why it would take 1.5 mg to get the prolactin in range initially but a good deal less than that to keep it under control — he told me this isn’t uncommon and that it often takes higher doses to bring a problem under control than it does to keep it in line. He also said there is a chance the Dostinex may be shrinking the tumors and some folks reach a point where they can go off the meds (which I’d read in this group before). He * does not * think that my weight loss has anything to do with the way the meds interact with my body.

Speaking of weight. I’ve gained 8 pounds since December. I’m also wearing a pair of jeans that I purchased that were too tight in the legs and waist then and that I’d try on once a week to monitor my weight. So, I weigh a bit more but I’m thinner in the thighs and belly. The weight is probably a fair amount of water and isn’t anything I’m worried about. I do lift weights at least 3 times a week, and I cycle most other nights, but as much as I’d like to believe it’s 8 pounds of solid muscle, (or a pound or two of added penis) I’m just not that stupid. (A little bit could be muscle I guess.)


December 12, 2006 Notes:
I've been taking the Cabergoline (generic form of Dostinex) for roughly 4 months. Blood was drawn on a Tuesday morning and I last took cabergoline Sunday morning — so I sort of screwed up, I normally have blood drawn when I have the least amount of meds in me. I've been taking 1 mg twice a week. My prolactin was the lowest it has been; again, this blood draw was taken 'earlier' than normal.

October 23, 2006 Notes:
I’ve been taking the Cabergoline (generic form of Dostinex) for two months. Blood was drawn on a Monday morning and I last took cabergoline Thursday morning. I’ve been taking 1 mg twice a week - so, two things have changed since my last blood draw; I’m taking less cabergoline and I’m taking the generic. My prolactin has gone up just a tad.

August 23, 2006 Notes:
I turned 46 on August 23rd. What better way to celebrate a birthday than going to the Endo and having some blood taken? This blood was drawn on a Wednesday morning … about 24 hours before my next dose of Dostinex.

I’ve dropped 20 pounds since my March 6 visit to the endo (The May 12 notes came after a trip to LabCorp to have blood tested between endo visits).

I have recently read some posts in a couple of Pituitary Message Boards about people having trouble losing weight (or reporting unexplained weight gain) while their prolactin is high. The postings I read were made by women; I don’t know if the weight problem I had was a low-T or high-prolactin thing … probably a bit of both. I am convinced that the trouble I had losing weight was hormone related.

I know I keep moving this date around, but I honestly think I’ll have the gyno surgery after my kid’s fall soccer is over.

If I had a prolactinoma - a prolactin secreting tumor - Dostinex might shrink the tumor. My endo isn’t sure I have a prolactinoma - he knows the tumors are the problem, but he isn’t sure they are secreting prolactin as he would have expected it to be higher than it was if this were the case. So, meds may not cause tumor shrinkage in my case.

Dostinex is currently under a recall of some sort and on backorder. In December of ’05 Par Pharmaceutical came out with a generic and I’ll be taking that.

With a decrease in my meds, from 1.5 mg twice a week to 1.25 mg twice a week, my Prolactin dropped from 8.9 to 7.1 (2.1-17.7). My T is currently 706 (241-827) up from a low of (post-Androgel use) 36 (300 - 1000) that I adjust to 29 (for the 241-827 scale … I really don’t know how accurate that is). The more common (non-Androgel-influenced) low was 146 (300-1000) that I scale to 118 (241-827 … again, not sure of the accuracy.)

May 12, 2006 Notes:
My Dostinex was cut back to 1.25 mg twice a week in March. Blood was drawn on May 11. I had last had Dostinex on May 7 - so I was as far between doses as I get. From March 23rd to May 12 I dropped 11 pounds. Shirtless the gyno is spectacular and I expect to have it addressed fairly soon; I’d like to go swimming with my boys this summer.

Regarding my gyno, and I don’t mean to brag here, but if you go to:
http://www.webplastics.com/male.htm you’ll see some samples. I beat either of those guys.

March 23, 2006 Notes:
This blood was drawn Thursday morning before I had taken my Dostinex. I take Dostinex Sunday and Thursday - so this would have been at the tail end of Sunday’s meds (a true wordsmith would have said that better).

What do we know? Without any change in my meds my Prolactin continued to drop. It’s gone from 15.9 to 8.9 while I’ve been taking 1.5 mg twice a week.

I’ve dropped 20 pounds since October of 04. I’ve dropped 16 pounds since October 05. Which gives me a loss of 4 pounds for the period of time between Oct 04 and Oct 05. Roughly speaking, I dropped 60 pounds the first year, 40 the second, and 20 the last 1.3 years; 16 the past five months.

Even though I lost just four pounds over a 12-month period I did drop several pants sizes. I wish I would have kept track of that.

The weight is important as I thought my problem, back several years ago, might be weight related. Also, for the longest time, no matter what I tried I couldn’t lose any weight, and what I did lose came back far too easy. Lately I just accept the fact that tomorrow when I wake up I’ll be just a bit smaller than I was today.

I met with a plastic surgeon in November to discuss gyno surgery.

*** Notes from October 05 and before ***
What’s New (from the post 4 months back): I’ve been taking 1.5 mg Dostinex twice a week since February 2004 - in other words, the last 5 blood tests. My meds haven’t changed but my condition continues to improve.

My weight hasn’t changed enough to mention. I continue to go to the gym. I have dropped a pants size. I assume I have a bit more muscle. I guess that would make sense.

I put this together to track my progress and thought I'd post it just in case it would be of interest to others. I don’t think I’m fascinating -- I just know that when I was trying to figure out what was wrong with me I read everything I could find. Maybe this will help someone.

Regular readers of the group will know that I have trouble being concise; in keeping with that tradition a boatload of text follows.

In July of 2001 I found I had low Testosterone: 147 ng/dL (scale 300 to 1000). Without doing any additional bloodwork my Primary Care Physician prescribed Androgel (Sep 2001). I don't recall the dosage - it was one packet, which I believe is 5 grams. After a month my T had climbed to 350. I can't say my sex drive went through the roof, but there were times during the day that I could feel "stirrings" for no reason - not I-need-to-have-sex-NOW! stirrings ... just something new going on. I told the doc I really didn't notice a big increase in my sex drive. He upped my prescription to 1.5 packs of Androgel. I applied it for two more weeks and quit as I hadn't felt I'd adequately researched the problem.

I thought some of my problem might be my weight. I weighed something over 360 and thought that being fat might cause low T. In January I started going to the gym and made a great effort to drop some weight. At some point I picked up Lou Schuler's "The Testosterone Advantage Plan," and tried to improve my condition through diet and exercise. FWIW, Schuler makes no claims that diet and exercise will cause dramatic leaps in Testosterone levels such as I needed. Likewise, obesity can affect T levels but, again, probably not to the extent I was being affected by something.

I had a physical on June 7, 2002. I went in feeling pretty good. I felt I had more muscle mass (even though I was still a big fat guy), as I was stronger and as I said, I'd been paying more attention to what I ate.

The doc did some blood work. And the results: My cholesterol dropped
to 187 (from 199) and my Testosterone dropped to 36 (that is not a
typo: 36) on a scale of 300 to 1000 being normal. This would have been 11 months after I'd been diagnosed with low T and about 7 months after I'd discontinued use of Androgel (I started Androgel in September 2001 and used it for 6 weeks. So, I should have discontinued use by November. I don't have solid dates.)

Could Androgel use have caused my body to quit T production for more than 6 months? Was the test wrong?

My Primary Care Physician suggested I start Androgel again. I had stumbled across ASI and asked for the following bloodwork based on info found here: SHBG, FSH, Testosterone, Estradiol, Prolactin, TSH, LH, Free T, Total Estrogens and DHEA.

My PCP was initially reluctant to order the bloodwork. I can't really blame him; docs must get tired of patients coming in self-diagnosed based on things they see on TV. After I asked him how long he'd been my doctor ("A long time," he said) and how often I came in ("Hardly ever") he consented. My T came in at 146 (300-1000) and my Prolactin 56.2 (1.6-18.8). So, a month after I had a reading of 36 I'd rebounded to my pre-Androgel levels. Again, was the 36 test wrong? Was it just a timing thing?

Following the T reading of 36 I'd made an appointment to see an Endocrinologist; the appointment was set 3 months out and I asked to be put on a cancellation list. I got a call from the endo's staff just a day or two after the above bloodwork was done. (The July 02 and August 02 bloodwork are about a week apart.) I was able to see the endo in 6-weeks time rather than the original 3 months.

The endo ordered an MRI; I had the MRI in August and received the results 9/3/02. It turned up two small (3 and 5 mm) tumors on my pituitary gland. (During a later appointment my endo would tell me that while ("whilst," for some of our international readers) the tumors were certainly the cause of my high prolactin, he wasn't certain they were prolactin-secreting tumors; he would expect my prolactin to be higher if they were. In other posts I've stated I had 'very high' prolactin. Well, I've since run across folks with much higher prolactin levels than I have. So, mine are just high while theirs are ungodly high ('wicked' high for the New Englanders.)) I remember my weight at this time being 354 as the table-weight for the MRI was 350 … the tech put me on the table, but the fit was going to be such that I was eventually sent to an open MRI. (As an aside, on TV an MRI normally takes about as long as a commercial for Chevy Trucks. The guy goes into the MRI. You see a truck commercial. The guy comes out. In real life they are 30 minutes or so. I guess it wouldn't make for good TV to show the whole thing. And yet, Wife Swap is still on. Go figure.)

My endo prescribed Parlodel (Bromocriptine) on 9/3/02. I took it at bedtime - 1/2 pill for the first two weeks and increasing to a full pill after that. Pills were 2.5 mg. Dosage was doled out like this to help the body adjust and avoid any side affects.

During the time I was on Bromocriptine I forgot, twice, to take the dose at bedtime and instead took it the next morning. I had a bit of nervousness and light-headedness both times. Nothing that would keep me from taking it during the day again - just enough so that I knew something was different.

November 6, 2002 I had my first visit to the endo after starting Bromocriptine. My T had gone up to 138 (241-827) and my Prolactin had dropped to 38 (2.1 -17.7) My endo doubled the Bromocriptine (from 2.5 to 5 mg nightly).

In December 2002 (12/18/02) I started taking Dostinex. I was started on 1/2 pill (.25mg) and eased up to a full pill (.5mg) in order to allow my body to adjust to the medicine and to minimize side affects. I would take (and continue to take) Dostinex twice a week.

According to: http://www.pfizer.com/download/uspi_dostinex.pdf
dosage should start at .25 mg twice a week and may be increased up to 1 mg twice a week according to the patient's serum prolactin level. I currently take 1.5 mg twice a week, so I'm a bit past the norm. Another site I visited suggested a person's body weight may affect the dose of Dostinex needed.

The PDF referenced above lists several adverse reactions that may occur. Twice while taking Dostinex I developed nausea and in both cases thought I was getting the flu. Shortly after the flu thought passed through my mind I remembered that I'd had Dostinex earlier and that I might be having a reaction to the medicine. I was right in both cases; the flu never hit. I haven't had a negative reaction of any sort in well over a year.

In previous postings I remarked that despite the fact I had low T I didn't seem to suffer from any of the conditions associated with it aside from low libido. Looking back, that was not the case.

ED:
I mentioned early on that I didn't have ED. That was not the case. I had sex so infrequently that I didn't notice. Any performance issues I had when having sex (and I had them) I attributed to other factors (stress, being tired, etc.).

Depression:
I certainly had depression. I didn't recognize it until it was mostly over. I probably still have some. The gyno is enough to cause it.

Weight Gain:
Let's face it people, Ethiopians with hormone disorders don't balloon up to 370 pounds. I've got to admit I had some fun putting a bit of the weight on. It did seem that I went from 330 to 360 almost overnight though, without any big lifestyle changes. And actually, after 308 I sort of lose track of things (I was in a 30-and-over basketball league at 308). When I started trying to lose weight I found it very hard to do and impossible to keep off. I had dropped to 354 for my first MRI (8/02) and was at 370 in December. (That is not a solid 370. We have a medical scale at work that goes to 350. With some measuring I figured that pushing both weights on the scale to their limits equaled 363 lbs. When I stepped on the scale I 'judged' that the speed with which the weighing mechanism moved to its upper limit - and the accompanying thud it made - equaled about 7 pounds. And 370 is easier to remember than 368.) What I do know about my weight is that just under two years after starting Dostinex, I've lost 101 pounds.

Life in General:
I lacked a "lust for life," as another poster said. I was sort of blah about a lot of things. If you've listened to the Testosterone episode of This American Life I was sort of like the guy in the first segment. He suggests that while he was blah, there was a peace that came with it. Our experiences are different in that he didn't have three small children to look after and his significant other lived out of state and visited only on weekends. He realizes his experiences differ from the vast majority of others with his problem.

His comment "it doesn't matter if you have nothing, if you want nothing," is reminiscent of a something I used to say: Not having sex when you don't want sex sure beats the pants of being 18 and wanting sex all the time and not being able to get it.

You may be allele to listen to a Real Audio recording of the above at:
http://207.70.82.73/pages/descriptions/02/220.html
If not you can buy it at www.audible.com for $3.95.

Gynecomastia:
I've got a nice case. It only gets better (that is, more noticeable) as I get thinner. I will have to have this corrected surgically.

How did I miss the warning signs?:
Well, aside from the weight gain I didn't recognize any outward signs. And the weight I attributed to other things. Inability to lose weight I thought was age-related. I had never heard that men could have low-testosterone problems so it was nothing I considered. I thought the gyno was fat-guy-flabby-chest.

I realized I didn't enjoy things as much as I used to, but thought it was stress and would eventually get better.

I compare the whole episode to buying new tennis shoes. Each day you wear your sneakers they break down a little bit and don't feel as good as they did the day before. But, the breakdown is so gradual that you don't notice. At some point you buy new shoes and when you put them on your realize just how much better they feel than the old shoes do - not that you ever noticed the old shoes feeling bad.

I don't recall going to bed one night feeling great and waking up the next day not feeling great. At the time my problem was developing I had three little boys, and for years (literally) neither my wife nor I were getting much sleep. One of us would sleep in on Saturday, the other on Sunday; those were our catch-up days. When the time came that everybody was sleeping through the night - my wife and I included - I probably felt better than I had, but not as well as I should have. I just didn't notice.

Now that I feel better, I can see just how bad I felt.

Today -- Overall I think I handle day-to-day life better. I think I enjoy things more. I feel more relaxed.

I may still have some ED. I don't know. And it may be caused as much by my mental state as anything else right now. I am recently divorced (Isn't that how life goes … just as your bloodwork starts coming back better, your test facility divorces you. <- Yes, I've made that joke here before. But, I like it.), and, like I said the gyno is a bummer.

Dostinex vs Bromocriptine:
Bromocriptine did almost nothing for me. I've read other posts in which is it very effective. I've not had an adverse reaction to either Bromocriptine or Dostinex past those noted above - and none were severe enough to warrant concern.

I paid $7.00 for each prescription of Bromocriptine. Depending on the number of pills I received, my insurance paid between $46.99 (30 tablets) and $98.74 for 60 tablets. About $1.76 per tablet.

I pay $45.00 monthly for Dostinex. My insurance, for 25 tablets, pays $730. The cost per pill is $31.00.

Kroger was kind enough to print out my prescriptions covering my Dostinex and Bromocriptine. Thus far my insurance carrier and I have paid $13,616 for both medicines. Mostly Dostinex. Mostly my insurance carrier. (Going back to August 2002) [Today is 10/19/05: If that figure was current 4 months ago then it would now be closer to $16,500)


Below are links to some of the posts I found helpful. When I found I had low T I read through everything I could find. Even the things that would eventually turn out to not apply to my situation contained a lot of helpful info.

In cases where I reference a post I made, my questions aren't as helpful as the answers provided. As you Google the Groups click the Complete Thread link to see the replies associated with the link below. (The link I provide is shorter than that that brings up the entire string of related posts)

T, Obesity and Ramblings (My first post to ASI)
http://groups.google.com/groups?hl=en&lr=&selm=ps9rjukkp6svgdni16qn6kjgt9s952oqgs%404ax.com

Sin Loi's (our current Muerta) post responsible for the 'lost lust for life' comment
http://groups.google.com/groups?hl=en&lr=&selm=9ffQ8.86805%24nZ3.39237%40rwcrnsc53

Another poster with pituitary tumors - prolactin as high as 166
http://groups.google.com/groups?hl=en&lr=&selm=tqumnuo1o89jjusgl5ms9f3ji961u8mlck%404ax.com

David Zolt has a series of primers that can be found in Google Groups. There are 7. Google the Groups using the following string - change the 1 to 2 through 7 to find them all:

david zolt + "1 of 7" group:alt.support.impotence


Don't forget to pick up a copy of Dr. Eugene Shippen's book, "The Testosterone Syndrome." Available at Amazon.com


Posted by delmer at 10:56 PM | Comments (0)

February 10, 2007

How Green Was My Valley

Well, I was sort of wrong about getting the varicose vein zapped yesterday. I wondered how this was going to play out insurance-wise as I wasn't sure a person could just bounce into a doctor's office and have a laser gizmo inserted into a vein without some sort of prior insurance approval. Still, I thought the zapping was going to take place yesterday. The appointment turned out to be a pre-meeting in which we discussed what causes varicose veins and what we're likely to do with the monster I have.

The vein in question starts at my groin and runs down the inside of my leg almost all the way to the floor. Lately it seems to be getting larger and I fear it is just a step or two away from taking on sentient characteristics. Just the other day I had a sense that a remedial form of calculus was being worked on near that part of my body.

Samson went to the doctor's office with me and was given the opportunity of listening to my lungs and heart. He thought both sounded fine as did the doctor.

Fixing the vein involves running something up inside it that has a laser on the end of it. I was hoping that a group of scientists might get shrunk down and shot into me in a small submarine, but that isn't covered by my insurance carrier.

A laser is still pretty cool. It is inserted near the top of the vein and run up it a bit. As it is pulled out it is heated and irritates the vein walls. When the vein heals it closes.

There's something like a 98% chance that the procedure will be successful and less than a half percent that the procedure will enhance my psychic abilities.

There are a fair number of things that can cause varicose veins. Heredity is one -- and my dad has popped a vein out the last year or so ... of course, he's 71.

Low testosterone can cause them as well. I've been there.

The upside to the whole thing is that when the vein is treated the circulation will improve ever so slightly in my leg and the increase in blood flow will be redirected right to my manliness; I know this for a fact, I asked the doc.

And it only seems fair.

[No, mom, I did not really ask the doctor this.]

You'd be surprised just how hard it is to get a good picture of your own varicose vein. The one on this page is of the vein just below the knee. I had to crop it tight too keep it from looking any more obscene than it already does. You know, if you zoom in tight enough, I'm guessing on just about any body part, you'll find it looks a lot harrier than you ever thought.

Had I not promised to provided a photo of the vein I'd have skipped it altogether.

For what it's worth, I'd considered posting a picture of one of my nipples last week to show surgery-recovery progress ... I spared you that.

Posted by delmer at 9:46 PM | Comments (3)

January 20, 2007

Cialis and Wine

As you know, I have a couple of tumors on my pituitary gland that sort of screwed up my hormones. One of the side affects was that my libido went to hell. Another was that during those times I was trying to overcome the gone-to-hellness of my libido, the tools didn't work in a manner that suggested a problem with hydraulics.

With an honest-to-God hydraulic problem, thinking about the hydraulic problem doesn't typically make it worse. For example, I was watching a show on the moving of the Cape Hatteras lighthouse -- a project that involved the use of hydraulic jacking equipment, and I'm convinced that having one of the workers simply think, "Whoa, is it starting to droop?," would not have been enough to cause the light house to fall back to its original position.

With the human body, that simple thought is enough to cause any lighthouse-resembling body parts to lose their lighthouse resemblance and become more cooked pasta like (still more Sagne Incannulate than Angel Hair, and Manicotti'd for her pleasure, but noodly nonetheless). And that's the position I found myself in more than once.

Additionally, when moving a lighthouse, the fear that the jacks might fail when lifting the lighthouse is not enough to keep them from actually lifting the lighthouse.

With the human body, fear that the tools might not work is enough to keep them from working. I found myself there too.

And it's the fear we're going to discuss here.

For, even though I had the fear of failure, I was also confident that one day I'd be able to test that fear. And I wanted to be prepared! Up front! I didn't want to find myself years later having to ask for more troops to bail me out of a problem I'd caused as I worried about how I'd be perceived historically. I'm smarter than that. I can say "nuclear."

So, I called my doctor and asked for a Cialis prescription. I was going to be able to pick it up with my Cabergoline.

The grocery store/pharmacy where I get my drugs has a rope we're not supposed to step around until it's our turn to get our drugs. This keeps the busybodies in line behind us from hearing what we're picking up.

When I was next in line the twenty-something female clerk made eye contact, signaled me forward, and asked my name and date of birth. Armed with this information she retrieved my two prescriptions -- one, my Cabergoline, was already bottled and the other was written on a piece of paper. The bit of the writing on the paper I recognized seem to suggest the script was for 27 pills and the total was going to be very close to $300.00. This, in itself, left me with a cooked pasta feeling.

In a split second several things went through my mind: This has got to be wrong! I don't need 27 pills! Just a couple until I feel good about myself! Three hundred dollars!

I'm pretty sure I had a deer-in-the-headlights expression on my face that the clerk mistook for embarrassment because she started speaking in code to me. "This prescription," she said pointing to the Cialis prescription, "Is good for 27 pills."

Why are you speaking in code? Shit. Three hundred dollars.

"You don't have to get them all today, it's good for a year and you can get as many as you think you want now. When you come back, just let us know you want to refill this prescription," and she pointed again.

Why is she speaking in code? And then it hit me. She thought I was embarrassed. I was concerned about dropping almost $300 and she mistook my rats, three hundred dollars face for embarrassment and was trying to to protect my privacy ... which was the last thing I was worried about. Hell, I'd have been more than happy to have every single woman in the store know that with 30 minutes notice and just a little bit of coaxing I was going to be hard as a rock ... and, you know, just in case she got stuck behind someone in the Express Lane that had too many items and it was going to take her longer to get home than she thought, I was going to be good for three days (and experience suggests just a little bit longer than that).

I asked the clerk to quote me five pills.

I'm thinking if I decide to go in for a refill I'll have a bottle of wine with me when I get in line. Just to further demonstrate my level of preparedness.

[I'm pretty sure that fear of failure never really led to any actual failure -- it certainly didn't help, but my hormones were such that the lighthouse wasn't going anywhere anyway.]

Posted by delmer at 11:00 PM | Comments (3)

January 5, 2007

Cabergoline (Dostinex) and heart valve problems

As you know I take cabergoline (the generic form of Dostinex) twice a week. I take 1 mg on Tuesday and 1 mg on Sunday for a total of 2 mg; I used to take 1.5 mg on both days for a total of 3 mg per week. The high-end of the protocol recommends the 2 mg per week dose. So, at one point, I was taking 50% more than the high-end dose and I'm currently at the high-end dose.

Yesterday I stumbled across a story that stated Parkinson's drugs may lead to heart-valve problems. Cabergoline was mentioned as one of the problem drugs.

I read a bunch of the news articles Google offered up kept coming across this:

"In the first study, Italian researchers from the Istituti Clinici di Perfezionamento in Milan conducted an echocardiographic study of the prevalence of valvular abnormalities among 155 patients taking anti-Parkinson’s drugs and compared them to 90 control subjects. They report that the rate of serious valve regurgitation (irregular leaking of blood through faulty heart valves) was much higher in pergolide users (23 percent) and cabergoline users (29 percent) than in users of other Parkinson’s drugs (0 percent) or those not using any medication (6 percent)."


I read this a dozen times or more and was pretty sure it suggested I had a 29% chance of developing heart valve problems. Then I'd add that to the 23% for the other drug and come up with 52% of the people being treated problems for Parkinson's developing problems and I was sure if that was the case it would have raised a flag earlier.

So I'd look at it another way ... and reread it ... and decide it meant 23% and 29% *higher* than ... what? 0 + 6? ... then my head would ache and I'd get a pain in my chest that I was sure was a valve problem, except it was too much like the stress knot I used to get before I mellowed in my old age. Finally, I realized I was a far better Googler than interpreter and I shot off to Michael J Fox's site, which had an article from October 19, 2006

The article points out that there is a problem and reiterated what I'd read elsewhere -- that the problem is more likely to appear at higher doses and when the drugs are used for an extended period of time. You'll recall from above that I'm currently at the high end of the medicine-ingestion protocol. At least for hormone problems. I've been taking cabergoline for four years. From Mike's site I found:

The investigators point out that the mean daily dose was higher for cabergoline (3.8 mg) than for pergolide (1.4 mg) or pramipexole (1.7 mg).


Which is 13.3 times the amount I take weekly. (And, it must cost a fortune ... based on what I pay, the generic would run over $9,000 a month, assuming it is priced the same for Parkinson's as it is hormone problems).

I was starting to feel a little less depressed.

I did some more reading and found a couple of articles suggesting there is just the smallest chance of Parkinson's patience developing heart valve problems while taking any of the mentioned meds. So, there's a 29% chance or almost no chance of developing a problem.

The last thing I read, before shutting down the PC and turning to NewsRadio reruns was from the New York Times:

"The two new reports involve only Parkinson’s. The results should not be applied to patients who take Dostinex for the hormone disorder because they take far smaller doses of the drug than do patients with Parkinson’s, said Dr. David L. Kleinberg, a professor of medicine and director of the neuroendocrine unit at New York University’s medical school.

The hormone disorder affects tens of thousands of people in the United States, mostly women, said Dr. Shlomo Melmed, an endocrinologist and a senior vice president of Cedars-Sinai Medical Center in Los Angeles. Men can develop the disorder, and some need higher doses of Dostinex than do women, Dr. Melmed said, so those men should be monitored for heart valve problems. "



This was very exciting right up to the last line, which dropped it to 'pretty exciting.'

Prior to the late-evening research I'd made some calls to the medical professionals in my family -- calling my General Practitioner was out of the question as she relocated to Florida at the beginning of the year (I can only assume the thought of checking my prostate later this month was more than she could bear) -- to find out what it would take to detect a heart valve problem. It would seem that when the doc has got the stethoscope on you, that's one of the things he's listening for (that and Cool Jazz). I had my chest listened to in November (the heart sounded fine and the nurse said she was able to detect a bit of Miles Davis).


This morning at Red Herring I found the dumbed-down version of the first article I read:

One study found that 23 percent of the 64 patients taking pergolide and 29 percent of the 49 patients taking cabergoline had moderate to severe heart valve regurgitation, as compared to cidences of valve damage on a different Parkinson’s medication.



Red Herring has The Business of Technology as their tag-line, which made me wonder what something like this was doing on their site. Then I figured that since their target audience is technology-type guys ... IT people for one ... they'd be fully aware that we're not the smartest lot when it comes to non-computer things. As a public service to the IT community [Did you know that in some states IT people are not allowed to marry IT people -- typically only if both people are either (A) men or (B) women] they went the extra mile and put the once-confusing paragraph into something IT folk could understand.

I can't wait to see what MacWorld has to say about this.

Posted by delmer at 7:34 AM | Comments (1)

December 16, 2006

More Blood Work and Surgery Update

Alright, if you are new here:

I have a couple of pituitary tumors that have caused hormone problems: high prolactin which led to low testosterone. My blood work history is available in this blog as is a rather long summary of my experience the last four years. All the hormone entries can be found by clicking here.

Blood Work:
I had blood drawn this past Tuesday, which would have been December 12. I've been taking the generic form of Dostinex (Cabergoline) for almost 4 months. I normally have blood taken on a Thursday morning before I take the Thursday dose of medicine. As I take the meds Sundays and Thursdays this give me a reading when I have the lowest level of cabergoline in my system.

The Tuesday draw came about as I wasn't paying attention when I made the appointment.

In any case, my prolactin level came in at 6.9 (with a reference range of 2.1 to 17.7 being normal), which is the best it has been since I've been tracking it. My testosterone doesn't get tested at each draw anymore as it is always good now -- it should certainly higher than it's been the past four years.

Oh, that reminds me. It was four years ago this month that I started taking Dostinex.

Surgery Update
(For some background on this, the hormone problem led to gynocomastia that needed to be surgically treated. When I started taking Dostinex I started losing weight that I'd been trying to lose, unsuccessful, for a long time -- over the past four years I've dropped almost 150 pounds ... thus, the tummy tuck. I've read that low T and/or high prolactin can cause weight gain and make it hard to lose; my experience supports this.)

I had gyno surgery and, for fun, a tummy tuck, this past November 6th. So, it was about 6 weeks ago. The gyno surgery (and there were baseball-sized bits of tissue removed from behind each nipple) never really hurt much. Or maybe the pain was made unnoticeable by the uncomfortableness of the tummy tuck. Who knows? I took a week off work to heal up some.

Anyway, I'm healing up nicely. My belly aches just the tiniest bit if I sneeze really hard.

Posted by delmer at 5:40 PM | Comments (0)

November 10, 2006

Post Gyno Surgery

Hey. I just discovered that I forgot to post details about the BJ I got at the hospital. And the tummy tuck.

The 'BJ,' of course, refers to my gyno surgery and the 'tummy tuck,' the tummy tuck. And now that the 'BJ' joke is out of the way, we'll quit referring to anything having to do with my chest as a boob job.

I'm never sure how to word blog entries that rely heavily on other blog entries. I know some readers are totally up-to-date while others may have happened across the site while Googling 'gyno surgery.' To make me feel better, and like I'm not leaving anybody out, I'll type out the bit about how I have a pituitary tumor that screwed with my hormones (testosterone very low; prolactin high enough to be problematic). My libido tanked, the tools quit working, breast tissue formed, and I'm checking to see if low testosterone is somehow related to varicose veins. If you care to read more click the Low Testosterone category. (Pituitary tumors are not terribly uncommon, those that cause hormone trouble are sort of rare, and those that cause gyno are more rare.)

Now, on with our blog entry.

Surgery started about 7:30 a.m. and was over about 4 hours later. I really don't remember when I was wheeled into my room and I'm sort of fuzzy on the things that happened the rest of the day. When Wednesday rolled around I was unsure about who I'd called to tell I'd survived and who I'd missed. What's sad is the list was only about three-people long.

(UPDATE: This next paragraph will sound a lot like yesterday's blog entry. I'd forgotten I'd posted it. I may still have some residual drug stuff floating around in me.)

I spent most of the next two days sleeping the sleep that only percocet can bring on. Once, in the past, I'd doubted just how much good a particular prescription was doing with regard to pain control and had quit taking that medication only to discover that without it I went from hurting a helluva lot to a freaking helluva lot. With percocets floating around in me I wasn't in a lot of pain -- unless I laughed or coughed -- but I wasn't sure what the pain would be like percocet-free. Rather than quit taking the drug and finding out things hurt a lot more I decided to medicate and play it safe. After two days of full-time grogginess I thought I'd take a chance and go drug free.

Maybe the timing was good. Maybe I could have gone off the percs sooner. Whatever, it really wasn't a big deal. As long as I didn't move I was OK. Whenever I stood up to pee there'd be a brief period of pain but after two or three steps I'd be good (not that I was walking straight up at this point.) Laughing and coughing caused searing stomach pain and I could tell that struggling with a bout of constipation would push me into a coma [(Fortunately I was tanked up on stool softeners. (I threw that in there for the TMI crowd)].

Overall, and aside from laughing and coughing, I was never in a great deal of pain. When asked by the nurse, immediately following surgery, I rated the pain a 2 or 3 on a scale where 10 is worst. Of the two the gyno surgery hurt the least and, really, I'd have to say the gyno surgery never hurt at all. There was an instance or two of a nipple-burning pain ... but not much.

By the way, my first word upon being awakened from surgery was, "F*ck." It was one of those where the hell am I moments that f*ck seems to capture best. Of course, a second later I knew where I was and felt bad about the whole thing and apologized to the surgical team. They did not seem to be put off by the remark.

Thursday rolled around and so did my follow-up visit. I had a 9:30 appointment and arrived at 9:22. I was taken in right away, the doc unwrapped me, looked me over, we chatted, he removed the drains, he wrapped me back up and I was out of the office by 9:50.

In the past I've mentioned that were it not for the fact I have children I'd post pictures of everything. Having seen the pictures during the follow-up I'm not sure that I would. The before photos look worse that I thought; I think this is due to the fact that I'd always seen myself in a mirror from a front view. I'm not really sure how to describe the photos.

The doc had photos of the stuff he'd removed from my chest, which I'll simply describe as baseball-sized and sort of rubbery. These items were not tumors or anything to worry about, just tissue that shouldn't be there, but probably pictures you wouldn't want to see.

I'm happy with the way everything turned out. I have another visit with the doctor in a week.

Posted by delmer at 5:49 PM | Comments (0)

November 4, 2006

The Upcoming Surgery

Monday morning, at something like 6 a.m., I'm having surgery to correct an problem caused by my pituitary tumors. If I were childless I'd gladly post before-and-after pictures of the whole thing on the chance that the information I provide might help someone else down the road.

As I do have children, I've decided to opt out of posting photos. For those of you new to this blog, I'll just say I have a bit of gynecomastia caused by a hormone disorder that, itself, is caused by pituitary tumors.

The pituitary is one of the body's mystery glands with the primary mystery being just where the hell is it?

It is just behind and mostly between the eyes, which, makes it a brain tumor.

I say the brain tumor part as twice in the past several months when the subject has come up I've had people tell me that if I were to mention I had a brain tumor to women I'd get an incredible amount of action -- where action means exactly what you think it means.

The most interesting part of this is that one of the people telling me I'd get an incredible amount of action was, in fact, herself, a woman, and I'd like to think she has the inside track regarding what women think.

I'm just not sure. I think that having a cool car might be a better way of getting an incredible amount of action.

(And I sometimes suspect that even women don't have a clue as to what other women are thinking.)

Posted by delmer at 9:26 PM | Comments (3)

October 29, 2006

Dostinex Recall and Generic Cabergoline

Two months ago I was unable to refill my Dostinex prescription as some sort of recall was affecting the availability. I mentioned the recall then and, lo and behold, the second most popular search term used to bring people to What's a Delmer Look Likethis month is Dostinex Recall. (Number one is Granny Gallery which, I'm pretty sure, is people looking for porn featuring mature women.)

Anyway, I believe the Dostinex Recall had something to do with the packaging of the product rather than the quality of the product. I was surprised to hear this (and don't know that it's a fact) as my pills always came in your basic yellow-brown prescription bottle that my pharmacist would scoop pills into.

About the same time I was unable to get Dostinex, I found I was able to get the generic version of the drug -- cabergoline.

I've been taking the generic now for two months and believe it works just as well as Dostinex.

At the same time I started the generic, my dosage was reduced from 2 1/2 pills twice a week (five pills weekly) to 2 pills twice a week (four pills or 2 mg). I lost five pounds during these two months (not that I was really trying). My prolactin went up just a hair -- from 7.1 to 7.4 where the normal range is 2.1 to 17.7.

I have not suffered any side effects from Dostinex or cabergoline.

My hormone-history chart.

(I know this was all mentioned yesterday, but, there's a lot of boring stuff (for most) in yesterday's entry and this could have easily gotten lost.)

Posted by delmer at 12:01 AM | Comments (0)

October 28, 2006

October 23 Blood Work Update

I had some blood drawn on October 23rd. The following is an update of my hormone history. The stuff that has changed since last bloodwork immediately follows. A chart of my progress can be found here.

October 23, 2006 Notes:
I’ve been taking the Cabergoline (generic form of Dostinex) for two months. Blood was drawn on a Monday morning and I last took cabergoline Thursday morning. I’ve been taking 1 mg twice a week - so, two things have changed since my last blood draw; I’m taking less cabergoline and I’m taking the generic. My prolactin has gone up just a tad -- nothing I'd worry about. I weigh 224 pounds.

* * * * *


The following is a history of my bloodwork in the time that has passed since I found I had Low T and High Prolactin. I hope the format is OK. If it looks like crap in your reader you can cut and past it into notepad using the courier typeface.

DATE TOT_T FREE_T %FREE_T PROLACTIN
-------------------------------------------------------------
Jul01 147 (300-1000)

Oct01 350 (300-1000)
I had been on Androgel for 4 weeks.

Jun02 36 (300-1000)
I had discontinued Androgel in November 01

Jul02 146 (300-1000) 56.2(1.6-18.8)

Aug02 122 (241-827) 3.39(5-21) 2.78(1-2.7) 65 (2.1-17.7)
I weighed 354
Appt. with endo
MRI Turns up two small tumors on pituitary
Start BROMOCRIPTINE (09-03-02) 2.5mg nightly

Nov02 138 (241-827) 3.39 (5-21) 38 (2.1-17.7)
BROMO bumped to 5mg nightly (11/14/02)

Dec02 207 (300-1000) 3.70 (8.7-55) 39.3(1.6-18.8)
Start DOSTINEX (12/18/02) .25mg twice weekly
I weigh 370 pounds

Jan03 153 (241-827) 4.10 (5-21) 46.3 (2.1-17.7)
DOSTINEX bumped to .5mg twice weekly

Mar03 32.1 (2.1-17.7)
DOSTINEX Bumped to .75 mg twice weekly on 3/7/03

Jun03 230 (241-827) 4.00 (5-21) 24.4 (2.1-17.7)
I weigh 330
DOSTINEX Bumped to 1 mg twice weekly on 6/9/03

Oct03 347 (241-827) 5.69 (5-21) 1.64(1-2.7) 22.2 (2.1-17.7)
I weigh 308

Feb04 328 (241-827) 20.1 (2.1-17.7)
DOSTINEX bumped to 1.5 mg twice weekly on 2/25/03

Jun04 392 (241-827) 10.33 (5-21) 2.65(1-2.7) 15.9 (2.1-17.7)
I weigh 285

Oct04 454 (241-827) 11.12 (5-21) 2.45(1-2.7) 12.8 (2.1-17.7)
I weigh 269 pounds

Feb05 464 (281-827) 15.73 (5-21) 3.39(1-2.7) 11.5 (2.1-17.7)

Jun05 10.1 (2.1-17.7)

Oct05 563 (281-827) 9.7 (2.1-17.7)
Mar06 8.9 (2.1-17.7)
I weigh 249 pounds
My Dostinex was decreased from 1.5 to 1.25 mg twice wkly

May06 7.3 (2.1-17.7)
I weigh 238 pounds

Aug06 706 (241-827) 7.1 (2.1-17.7)
I weigh 229
Dostinex decreased from 1.25 to 1.0 mg twice wkly
Dostinex is hard to find - I’ll be taking Par’s generic

Oct06 7.4 (2.1-17.7)
I weigh 224
Have been taking cabergoline for two months at the
the new, reduced, dose of 1 mg twice a week.


* * * * *

October 23, 2006 Notes:
I’ve been taking the Cabergoline (generic form of Dostinex) for two months. Blood was drawn on a Monday morning and I last took cabergoline Thursday morning. I’ve been taking 1 mg twice a week - so, two things have changed since my last blood draw; I’m taking less cabergoline and I’m taking the generic. My prolactin has gone up just a tad.


August 23, 2006 Notes:
I turned 46 on August 23rd. What better way to celebrate a birthday than going to the Endo and having some blood taken? This blood was drawn on a Wednesday morning … about 24 hours before my next dose of Dostinex.

I’ve dropped 20 pounds since my March 6 visit to the endo (The May 12 notes came after a trip to LabCorp to have blood tested between endo visits).

I have recently read some posts in a couple of Pituitary Message Boards about people having trouble losing weight (or reporting unexplained weight gain) while their prolactin is high. The postings I read were made by women; I don’t know if the weight problem I had was a low-T or high-prolactin thing … probably a bit of both. I am convinced that the trouble I had losing weight was hormone related.

I know I keep moving this date around, but I honestly think I’ll have the gyno surgery after my kid’s fall soccer is over.

If I had a prolactinoma - a prolactin secreting tumor - Dostinex might shrink the tumor. My endo isn’t sure I have a prolactinoma - he knows the tumors are the problem, but he isn’t sure they are secreting prolactin as he would have expected it to be higher than it was if this were the case. So, meds may not cause tumor shrinkage in my case.

Dostinex is currently under a recall of some sort and on backorder. In December of ’05 Par Pharmaceutical came out with a generic and I’ll be taking that.

With a decrease in my meds, from 1.5 mg twice a week to 1.25 mg twice a week, my Prolactin dropped from 8.9 to 7.1 (2.1-17.7). My T is currently 706 (241-827) up from a low of (post-Androgel use) 36 (300 - 1000) that I adjust to 29 (for the 241-827 scale … I really don’t know how accurate that is). The more common (non-Androgel-influenced) low was 146 (300-1000) that I scale to 118 (241-827 … again, not sure of the accuracy.)

May 12, 2006 Notes:
My Dostinex was cut back to 1.25 mg twice a week in March. Blood was drawn on May 11. I had last had Dostinex on May 7 - so I was as far between doses as I get. From March 23rd to May 12 I dropped 11 pounds. Shirtless the gyno is spectacular and I expect to have it addressed fairly soon; I’d like to go swimming with my boys this summer.

Regarding my gyno, and I don’t mean to brag here, but if you go to:
http://www.webplastics.com/male.htm you’ll see some samples. I beat either of those guys.

March 23, 2006 Notes:
This blood was drawn Thursday morning before I had taken my Dostinex. I take Dostinex Sunday and Thursday - so this would have been at the tail end of Sunday’s meds (a true wordsmith would have said that better).

What do we know? Without any change in my meds my Prolactin continued to drop. It’s gone from 15.9 to 8.9 while I’ve been taking 1.5 mg twice a week.

I’ve dropped 20 pounds since October of 04. I’ve dropped 16 pounds since October 05. Which gives me a loss of 4 pounds for the period of time between Oct 04 and Oct 05. Roughly speaking, I dropped 60 pounds the first year, 40 the second, and 20 the last 1.3 years; 16 the past five months.

Even though I lost just four pounds over a 12-month period I did drop several pants sizes. I wish I would have kept track of that.

The weight is important as I thought my problem, back several years ago, might be weight related. Also, for the longest time, no matter what I tried I couldn’t lose any weight, and what I did lose came back far too easy. Lately I just accept the fact that tomorrow when I wake up I’ll be just a bit smaller than I was today.

I met with a plastic surgeon in November to discuss gyno surgery.


*** Notes from October 05 and before ***
What’s New (from the post 4 months back): I’ve been taking 1.5 mg Dostinex twice a week since February 2004 - in other words, the last 5 blood tests. My meds haven’t changed but my condition continues to improve.

My weight hasn’t changed enough to mention. I continue to go to the gym. I have dropped a pants size. I assume I have a bit more muscle. I guess that would make sense.

I put this together to track my progress and thought I'd post it just in case it would be of interest to others. I don’t think I’m fascinating -- I just know that when I was trying to figure out what was wrong with me I read everything I could find. Maybe this will help someone.

Regular readers of the group will know that I have trouble being concise; in keeping with that tradition a boatload of text follows.


In July of 2001 I found I had low Testosterone: 147 ng/dL (scale 300 to 1000). Without doing any additional bloodwork my Primary Care Physician prescribed Androgel (Sep 2001). I don't recall the dosage - it was one packet, which I believe is 5 grams. After a month my T had climbed to 350. I can't say my sex drive went through the roof, but there were times during the day that I could feel "stirrings" for no reason - not I-need-to-have-sex-NOW! stirrings ... just something new going on. I told the doc I really didn't notice a big increase in my sex drive. He upped my prescription to 1.5 packs of Androgel. I applied it for two more weeks and quit as I hadn't felt I'd adequately researched the problem.

I thought some of my problem might be my weight. I weighed something over 360 and thought that being fat might cause low T. In January I started going to the gym and made a great effort to drop some weight. At some point I picked up Lou Schuler's "The Testosterone Advantage Plan," and tried to improve my condition through diet and exercise. FWIW, Schuler makes no claims that diet and exercise will cause dramatic leaps in Testosterone levels such as I needed. Likewise, obesity can affect T levels but, again, probably not to the extent I was being affected by something.

I had a physical on June 7, 2002. I went in feeling pretty good. I felt I had more muscle mass (even though I was still a big fat guy), as I was stronger and as I said, I'd been paying more attention to what I ate.

The doc did some blood work. And the results: My cholesterol dropped
to 187 (from 199) and my Testosterone dropped to 36 (that is not a
typo: 36) on a scale of 300 to 1000 being normal. This would have been 11 months after I'd been diagnosed with low T and about 7 months after I'd discontinued use of Androgel (I started Androgel in September 2001 and used it for 6 weeks. So, I should have discontinued use by November. I don't have solid dates.)

Could Androgel use have caused my body to quit T production for more than 6 months? Was the test wrong?

My Primary Care Physician suggested I start Androgel again. I had stumbled across ASI and asked for the following bloodwork based on info found here: SHBG, FSH, Testosterone, Estradiol, Prolactin, TSH, LH, Free T, Total Estrogens and DHEA.

My PCP was initially reluctant to order the bloodwork. I can't really blame him; docs must get tired of patients coming in self-diagnosed based on things they see on TV. After I asked him how long he'd been my doctor ("A long time," he said) and how often I came in ("Hardly ever") he consented. My T came in at 146 (300-1000) and my Prolactin 56.2 (1.6-18.8). So, a month after I had a reading of 36 I'd rebounded to my pre-Androgel levels. Again, was the 36 test wrong? Was it just a timing thing?

Following the T reading of 36 I'd made an appointment to see an Endocrinologist; the appointment was set 3 months out and I asked to be put on a cancellation list. I got a call from the endo's staff just a day or two after the above bloodwork was done. (The July 02 and August 02 bloodwork are about a week apart.) I was able to see the endo in 6-weeks time rather than the original 3 months.

The endo ordered an MRI; I had the MRI in August and received the results 9/3/02. It turned up two small (3 and 5 mm) tumors on my pituitary gland. (During a later appointment my endo would tell me that while ("whilst," for some of our international readers) the tumors were certainly the cause of my high prolactin, he wasn't certain they were prolactin-secreting tumors; he would expect my prolactin to be higher if they were. In other posts I've stated I had 'very high' prolactin. Well, I've since run across folks with much higher prolactin levels than I have. So, mine are just high while theirs are ungodly high ('wicked' high for the New Englanders.)) I remember my weight at this time being 354 as the table-weight for the MRI was 350 … the tech put me on the table, but the fit was going to be such that I was eventually sent to an open MRI. (As an aside, on TV an MRI normally takes about as long as a commercial for Chevy Trucks. The guy goes into the MRI. You see a truck commercial. The guy comes out. In real life they are 30 minutes or so. I guess it wouldn't make for good TV to show the whole thing. And yet, Wife Swap is still on. Go figure.)

My endo prescribed Parlodel (Bromocriptine) on 9/3/02. I took it at bedtime - 1/2 pill for the first two weeks and increasing to a full pill after that. Pills were 2.5 mg. Dosage was doled out like this to help the body adjust and avoid any side affects.

During the time I was on Bromocriptine I forgot, twice, to take the dose at bedtime and instead took it the next morning. I had a bit of nervousness and light-headedness both times. Nothing that would keep me from taking it during the day again - just enough so that I knew something was different.

November 6, 2002 I had my first visit to the endo after starting Bromocriptine. My T had gone up to 138 (241-827) and my Prolactin had dropped to 38 (2.1 -17.7) My endo doubled the Bromocriptine (from 2.5 to 5 mg nightly).

In December 2002 (12/18/02) I started taking Dostinex. I was started on 1/2 pill (.25mg) and eased up to a full pill (.5mg) in order to allow my body to adjust to the medicine and to minimize side affects. I would take (and continue to take) Dostinex twice a week.

According to: http://www.pfizer.com/download/uspi_dostinex.pdf
dosage should start at .25 mg twice a week and may be increased up to 1 mg twice a week according to the patient's serum prolactin level. I currently take 1.5 mg twice a week, so I'm a bit past the norm. Another site I visited suggested a person's body weight may affect the dose of Dostinex needed.

The PDF referenced above lists several adverse reactions that may occur. Twice while taking Dostinex I developed nausea and in both cases thought I was getting the flu. Shortly after the flu thought passed through my mind I remembered that I'd had Dostinex earlier and that I might be having a reaction to the medicine. I was right in both cases; the flu never hit. I haven't had a negative reaction of any sort in well over a year.

In previous postings I remarked that despite the fact I had low T I didn't seem to suffer from any of the conditions associated with it aside from low libido. Looking back, that was not the case.

ED:
I mentioned early on that I didn't have ED. That was not the case. I had sex so infrequently that I didn't notice. Any performance issues I had when having sex (and I had them) I attributed to other factors (stress, being tired, etc.).

Depression:
I certainly had depression. I didn't recognize it until it was mostly over. I probably still have some. The gyno is enough to cause it.

Weight Gain:
Let's face it people, Ethiopians with hormone disorders don't balloon up to 370 pounds. I've got to admit I had some fun putting a bit of the weight on. It did seem that I went from 330 to 360 almost overnight though, without any big lifestyle changes. And actually, after 308 I sort of lose track of things (I was in a 30-and-over basketball league at 308). When I started trying to lose weight I found it very hard to do and impossible to keep off. I had dropped to 354 for my first MRI (8/02) and was at 370 in December. (That is not a solid 370. We have a medical scale at work that goes to 350. With some measuring I figured that pushing both weights on the scale to their limits equaled 363 lbs. When I stepped on the scale I 'judged' that the speed with which the weighing mechanism moved to its upper limit - and the accompanying thud it made - equaled about 7 pounds. And 370 is easier to remember than 368.) What I do know about my weight is that just under two years after starting Dostinex, I've lost 101 pounds.

Life in General:
I lacked a "lust for life," as another poster said. I was sort of blah about a lot of things. If you've listened to the Testosterone episode of This American Life I was sort of like the guy in the first segment. He suggests that while he was blah, there was a peace that came with it. Our experiences are different in that he didn't have three small children to look after and his significant other lived out of state and visited only on weekends. He realizes his experiences differ from the vast majority of others with his problem.

His comment "it doesn't matter if you have nothing, if you want nothing," is reminiscent of a something I used to say: Not having sex when you don't want sex sure beats the pants of being 18 and wanting sex all the time and not being able to get it.

You may be allele to listen to a Real Audio recording of the above at:
http://207.70.82.73/pages/descriptions/02/220.html
If not you can buy it at www.audible.com for $3.95.

Gynecomastia:
I've got a nice case. It only gets better (that is, more noticeable) as I get thinner. I will have to have this corrected surgically.

How did I miss the warning signs?:
Well, aside from the weight gain I didn't recognize any outward signs. And the weight I attributed to other things. Inability to lose weight I thought was age-related. I had never heard that men could have low-testosterone problems so it was nothing I considered. I thought the gyno was fat-guy-flabby-chest.

I realized I didn't enjoy things as much as I used to, but thought it was stress and would eventually get better.

I compare the whole episode to buying new tennis shoes. Each day you wear your sneakers they break down a little bit and don't feel as good as they did the day before. But, the breakdown is so gradual that you don't notice. At some point you buy new shoes and when you put them on your realize just how much better they feel than the old shoes do - not that you ever noticed the old shoes feeling bad.

I don't recall going to bed one night feeling great and waking up the next day not feeling great. At the time my problem was developing I had three little boys, and for years (literally) neither my wife nor I were getting much sleep. One of us would sleep in on Saturday, the other on Sunday; those were our catch-up days. When the time came that everybody was sleeping through the night - my wife and I included - I probably felt better than I had, but not as well as I should have. I just didn't notice.

Now that I feel better, I can see just how bad I felt.

Today -- Overall I think I handle day-to-day life better. I think I enjoy things more. I feel more relaxed.

I may still have some ED. I don't know. And it may be caused as much by my mental state as anything else right now. I am recently divorced (Isn't that how life goes … just as your bloodwork starts coming back better, your test facility divorces you. <- Yes, I've made that joke here before. But, I like it.), and, like I said the gyno is a bummer.

Dostinex vs Bromocriptine:
Bromocriptine did almost nothing for me. I've read other posts in which is it very effective. I've not had an adverse reaction to either Bromocriptine or Dostinex past those noted above - and none were severe enough to warrant concern.

I paid $7.00 for each prescription of Bromocriptine. Depending on the number of pills I received, my insurance paid between $46.99 (30 tablets) and $98.74 for 60 tablets. About $1.76 per tablet.

I pay $45.00 monthly for Dostinex. My insurance, for 25 tablets, pays $730. The cost per pill is $31.00.

Kroger was kind enough to print out my prescriptions covering my Dostinex and Bromocriptine. Thus far my insurance carrier and I have paid $13,616 for both medicines. Mostly Dostinex. Mostly my insurance carrier. (Going back to August 2002) [Today is 10/19/05: If that figure was current 4 months ago then it would now be closer to $16,500)


Below are links to some of the posts I found helpful. When I found I had low T I read through everything I could find. Even the things that would eventually turn out to not apply to my situation contained a lot of helpful info.

In cases where I reference a post I made, my questions aren't as helpful as the answers provided. As you Google the Groups click the Complete Thread link to see the replies associated with the link below. (The link I provide is shorter than that that brings up the entire string of related posts)

T, Obesity and Ramblings (My first post to ASI)
http://groups.google.com/groups?hl=en&lr=&selm=ps9rjukkp6svgdni16qn6kjgt9s952oqgs%404ax.com

Sin Loi's (our current Muerta) post responsible for the 'lost lust for life' comment
http://groups.google.com/groups?hl=en&lr=&selm=9ffQ8.86805%24nZ3.39237%40rwcrnsc53

Another poster with pituitary tumors - prolactin as high as 166
http://groups.google.com/groups?hl=en&lr=&selm=tqumnuo1o89jjusgl5ms9f3ji961u8mlck%404ax.com

David Zolt has a series of primers that can be found in Google Groups. There are 7. Google the Groups using the following string - change the 1 to 2 through 7 to find them all:

david zolt + "1 of 7" group:alt.support.impotence


Sometimes I feed the trolls. But just for fun. Someone in the group once pointed out that you got to have a sense of humor when your Dick doesn't work. This is one of my favorites. (Is it in poor form to think the things you say are funny?)
http://groups.google.com/groups?hl=en&lr=&selm=b060d4fb.0404271144.19cca16a%40posting.google.com

Don't forget to pick up a copy of Dr. Eugene Shippen's book, "The Testosterone Syndrome." Available at Amazon.com

Posted by delmer at 7:00 PM | Comments (0)

September 26, 2006

The Ultimate Prolactin and Testosterone Hormone Overview

(This is something I post in Usenet after each blood test. It is a history of my hormone experiences. This one is current as of the August 23, 2006 blood taking. I'm not going to edit it -- this is the way it appears in Usenet. You'll notice the NPR Podcast post closely follows this posting so that the non-hormone-interested readers will have something to peruse as well; it's just another way I show how I care about each and every one of the WADLL readers. But you know, if you had a hormone problem, you'd be surprised as just how interesting the following is.)


The following is a history of my bloodwork in the time that has passed since I found I had Low T and High Prolactin. I hope the format is OK. If it looks like crap in your reader you can cut and past it into notepad using the courier typeface.

DATE TOT_T FREE_T %FREE_T PROLACTIN
-------------------------------------------------------------
Jul01 147 (300-1000)

Oct01 350 (300-1000)
I had been on Androgel for 4 weeks.

Jun02 36 (300-1000)
I had discontinued Androgel in November 01

Jul02 146 (300-1000) 56.2(1.6-18.8)

Aug02 122 (241-827) 3.39(5-21) 2.78(1-2.7) 65 (2.1-17.7)
I weighed 354
Appt. with endo
MRI Turns up two small tumors on pituitary
Start BROMOCRIPTINE (09-03-02) 2.5mg nightly

Nov02 138 (241-827) 3.39 (5-21) 38 (2.1-17.7)
BROMO bumped to 5mg nightly (11/14/02)

Dec02 207 (300-1000) 3.70 (8.7-55) 39.3(1.6-18.8)
Start DOSTINEX (12/18/02) .25mg twice weekly
I weigh 370 pounds

Jan03 153 (241-827) 4.10 (5-21) 46.3 (2.1-17.7)
DOSTINEX bumped to .5mg twice weekly

Mar03 32.1 (2.1-17.7)
DOSTINEX Bumped to .75 mg twice weekly on 3/7/03

Jun03 230 (241-827) 4.00 (5-21) 24.4 (2.1-17.7)
I weigh 330
DOSTINEX Bumped to 1 mg twice weekly on 6/9/03

Oct03 347 (241-827) 5.69 (5-21) 1.64(1-2.7) 22.2 (2.1-17.7)
I weigh 308

Feb04 328 (241-827) 20.1 (2.1-17.7)
DOSTINEX bumped to 1.5 mg twice weekly on 2/25/03

Jun04 392 (241-827) 10.33 (5-21) 2.65(1-2.7) 15.9 (2.1-17.7)
I weigh 285

Oct04 454 (241-827) 11.12 (5-21) 2.45(1-2.7) 12.8 (2.1-17.7)
I weigh 269 pounds

Feb05 464 (281-827) 15.73 (5-21) 3.39(1-2.7) 11.5 (2.1-17.7)

Jun05 10.1 (2.1-17.7)

Oct05 563 (281-827) 9.7 (2.1-17.7)
Mar06 8.9 (2.1-17.7)
I weigh 249 pounds
My Dostinex was decreased from 1.5 to 1.25 mg twice wkly

May06 7.3 (2.1-17.7)
I weigh 238 pounds

Aug06 706 (241-827) 7.1 (2.1-17.7)
I weigh 229
Dostinex decreased from 1.25 to 1.0 mg twice wkly
Dostinex is hard to find - I’ll be taking Par’s generic


August 23, 2006 Notes:
I turned 46 on August 23rd. What better way to celebrate a birthday than going to the Endo and having some blood taken? This blood was drawn on a Wednesday morning … about 24 hours before my next dose of Dostinex.

I’ve dropped 20 pounds since my March 6 visit to the endo (The May 12 notes came after a trip to LabCorp to have blood tested between endo visits).

I have recently read some posts in a couple of Pituitary Message Boards about people having trouble losing weight (or reporting unexplained weight gain) while their prolactin is high. The postings I read were made by women; I don’t know if the weight problem I had was a low-T or high-prolactin thing … probably a bit of both. I am convinced that the trouble I had losing weight was hormone related.

I know I keep moving this date around, but I honestly think I’ll have the gyno surgery after my kid’s fall soccer is over.

If I had a prolactinoma - a prolactin secreting tumor - Dostinex might shrink the tumor. My endo isn’t sure I have a prolactinoma - he knows the tumors are the problem, but he isn’t sure they are secreting prolactin as he would have expected it to be higher than it was if this were the case. So, meds may not cause tumor shrinkage in my case.

Dostinex is currently under a recall of some sort and on backorder. In December of ’05 Par Pharmaceutical came out with a generic and I’ll be taking that.

With a decrease in my meds, from 1.5 mg twice a week to 1.25 mg twice a week, my Prolactin dropped from 8.9 to 7.1 (2.1-17.7). My T is currently 706 (241-827) up from a low of (post-Androgel use) 36 (300 - 1000) that I adjust to 29 (for the 241-827 scale … I really don’t know how accurate that is). The more common (non-Androgel-influenced) low was 146 (300-1000) that I scale to 118 (241-827 … again, not sure of the accuracy.)

May 12, 2006 Notes:
My Dostinex was cut back to 1.25 mg twice a week in March. Blood was drawn on May 11. I had last had Dostinex on May 7 - so I was as far between doses as I get. From March 23rd to May 12 I dropped 11 pounds. Shirtless the gyno is spectacular and I expect to have it addressed fairly soon; I’d like to go swimming with my boys this summer.

Regarding my gyno, and I don’t mean to brag here, but if you go to:
http://www.webplastics.com/male.htm you’ll see some samples. I beat either of those guys.

March 23, 2006 Notes:
This blood was drawn Thursday morning before I had taken my Dostinex. I take Dostinex Sunday and Thursday - so this would have been at the tail end of Sunday’s meds (a true wordsmith would have said that better).

What do we know? Without any change in my meds my Prolactin continued to drop. It’s gone from 15.9 to 8.9 while I’ve been taking 1.5 mg twice a week.

I’ve dropped 20 pounds since October of 04. I’ve dropped 16 pounds since October 05. Which gives me a loss of 4 pounds for the period of time between Oct 04 and Oct 05. Roughly speaking, I dropped 60 pounds the first year, 40 the second, and 20 the last 1.3 years; 16 the past five months.

Even though I lost just four pounds over a 12-month period I did drop several pants sizes. I wish I would have kept track of that.

The weight is important as I thought my problem, back several years ago, might be weight related. Also, for the longest time, no matter what I tried I couldn’t lose any weight, and what I did lose came back far too easy. Lately I just accept the fact that tomorrow when I wake up I’ll be just a bit smaller than I was today.

I met with a plastic surgeon in November to discuss gyno surgery.


*** Notes from October 05 and before ***
What’s New (from the post 4 months back): I’ve been taking 1.5 mg Dostinex twice a week since February 2004 - in other words, the last 5 blood tests. My meds haven’t changed but my condition continues to improve.

My weight hasn’t changed enough to mention. I continue to go to the gym. I have dropped a pants size. I assume I have a bit more muscle. I guess that would make sense.

I put this together to track my progress and thought I'd post it just in case it would be of interest to others. I don’t think I’m fascinating -- I just know that when I was trying to figure out what was wrong with me I read everything I could find. Maybe this will help someone.

Regular readers of the group will know that I have trouble being concise; in keeping with that tradition a boatload of text follows.


In July of 2001 I found I had low Testosterone: 147 ng/dL (scale 300 to 1000). Without doing any additional bloodwork my Primary Care Physician prescribed Androgel (Sep 2001). I don't recall the dosage - it was one packet, which I believe is 5 grams. After a month my T had climbed to 350. I can't say my sex drive went through the roof, but there were times during the day that I could feel "stirrings" for no reason - not I-need-to-have-sex-NOW! stirrings ... just something new going on. I told the doc I really didn't notice a big increase in my sex drive. He upped my prescription to 1.5 packs of Androgel. I applied it for two more weeks and quit as I hadn't felt I'd adequately researched the problem.

I thought some of my problem might be my weight. I weighed something over 360 and thought that being fat might cause low T. In January I started going to the gym and made a great effort to drop some weight. At some point I picked up Lou Schuler's "The Testosterone Advantage Plan," and tried to improve my condition through diet and exercise. FWIW, Schuler makes no claims that diet and exercise will cause dramatic leaps in Testosterone levels such as I needed. Likewise, obesity can affect T levels but, again, probably not to the extent I was being affected by something.

I had a physical on June 7, 2002. I went in feeling pretty good. I felt I had more muscle mass (even though I was still a big fat guy), as I was stronger and as I said, I'd been paying more attention to what I ate.

The doc did some blood work. And the results: My cholesterol dropped
to 187 (from 199) and my Testosterone dropped to 36 (that is not a
typo: 36) on a scale of 300 to 1000 being normal. This would have been 11 months after I'd been diagnosed with low T and about 7 months after I'd discontinued use of Androgel (I started Androgel in September 2001 and used it for 6 weeks. So, I should have discontinued use by November. I don't have solid dates.)

Could Androgel use have caused my body to quit T production for more than 6 months? Was the test wrong?

My Primary Care Physician suggested I start Androgel again. I had stumbled across ASI and asked for the following bloodwork based on info found here: SHBG, FSH, Testosterone, Estradiol, Prolactin, TSH, LH, Free T, Total Estrogens and DHEA.

My PCP was initially reluctant to order the bloodwork. I can't really blame him; docs must get tired of patients coming in self-diagnosed based on things they see on TV. After I asked him how long he'd been my doctor ("A long time," he said) and how often I came in ("Hardly ever") he consented. My T came in at 146 (300-1000) and my Prolactin 56.2 (1.6-18.8). So, a month after I had a reading of 36 I'd rebounded to my pre-Androgel levels. Again, was the 36 test wrong? Was it just a timing thing?

Following the T reading of 36 I'd made an appointment to see an Endocrinologist; the appointment was set 3 months out and I asked to be put on a cancellation list. I got a call from the endo's staff just a day or two after the above bloodwork was done. (The July 02 and August 02 bloodwork are about a week apart.) I was able to see the endo in 6-weeks time rather than the original 3 months.

The endo ordered an MRI; I had the MRI in August and received the results 9/3/02. It turned up two small (3 and 5 mm) tumors on my pituitary gland. (During a later appointment my endo would tell me that while ("whilst," for some of our international readers) the tumors were certainly the cause of my high prolactin, he wasn't certain they were prolactin-secreting tumors; he would expect my prolactin to be higher if they were. In other posts I've stated I had 'very high' prolactin. Well, I've since run across folks with much higher prolactin levels than I have. So, mine are just high while theirs are ungodly high ('wicked' high for the New Englanders.)) I remember my weight at this time being 354 as the table-weight for the MRI was 350 … the tech put me on the table, but the fit was going to be such that I was eventually sent to an open MRI. (As an aside, on TV an MRI normally takes about as long as a co