I have a couple of pituitary tumors that caused hormone problems — high prolactin and low testosterone.

Before getting into the long story I’ll give a bit of summary:

I currently take cabergoline at 1/2 pill per week; at my peak I was taking six pills per week (three on Sunday and three on Thursday)

I currently weigh 240 pounds. When my hormones were screwy I weighed 370 and couldn’t lose weight regardless of how hard I tried. I started losing weight the month after I went on Dostinex.

My blood work history is here.

Now the long version…

In July of 2001 I found I had low Testosterone: 147 ng/dL (scale 300 to 1000). Without doing any additional blood work 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 issue.

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 2002 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 had 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 the Usenet group Alt.Support.Impotence and asked for the following blood work based on info found here: SHBG, FSH, Testosterone, Estradiol, Prolactin, TSH, LH, Free T, Total Estrogens and DHEA.

My primary care physician was initially reluctant to order the blood work when I asked. 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 blood work was done. (The July 02 and August 02 blood work, in my Hormone Table, 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 it 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 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.) 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, American Idol 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 effects.

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 effects. I would take (and continue to take for years) 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. At my peak I took 1.5 mg twice a week, so I was 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 years.

At one time I’d thought that I hadn’t suffered from any of the condition that come with low testosterone aside from low libido. After I got better I realized I’d also had:

ED:
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.

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’d lost 101 pounds.

Life in General:
I lacked a "lust for life," as another poster in ASI 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 can currently to listen to a recording of the above at the This American Life archives. (As of July 10, 2009)

Gynecomastia:
I had the gyno corrected in November of 2006 and at the same time had the tummy tucked. The surgeon removed two masses of breast tissue the size of baseballs — one from behind each nipple. I’d first met with the surgeon in November 2005 and at that time there had been some talk of removing the nipples and then grafting them back on; this would have resulted in loss of sensation in the nipples. When I had the operation, a year later, he’d decided to fold the excess skin under the nipples and at the end of the surgery I had some puckering in the skin around the aureole.

As of April 15, 2007, the puckering around the nipple was gone. I had a light scar around the perimeter of the aureole (I had the aureoles size reduced – they’d stretched with the gyno) and a scar, about an inch in length, at 6 o’clock.

It is my understanding that a lot of gyno can be handled with Liposuction and without the baseball-sized masses that needed to be removed I’m not sure I’d have the scars beneath the nipples.

Surgery took several hours. I can’t say that there was ever any pain associated with it though, at various times I would have a mild burning sensation around the aureoles. It should be noted that the tummy tuck hurt enough that it could have easily overshadowed and nipple pain.

In November 2005 I asked for pre-approval from my insurance carrier to pay for the gyno surgery and they refused. In July the company I work for changed health carriers and I submitted a request to them; they approved.

The request was made by my doctor, included pictures of my chest, and, I suppose, an explanation about my hormone problem.

The gyno surgery and tummy tuck were going to be about $10,000 without insurance. It was split almost evenly between surgeries.

I paid for most of the tummy tuck fees (maybe all) up front. I paid for the doc, hospital and pre-registration. (In the end I paid for all of the tummy tuck.)

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 (February 24, 2008) — I handle day-to-day life better. I enjoy things more. I feel more relaxed.

Just after the gyno surgery I had a sexual relationship with a woman. I was very concerned about how I might perform and that stress led to problems, I’m certain; it’s also kind of hard to feel sexy with chest scaring. In all honesty, she may not have noticed (she would eventually say very flattering things about me to a friend of hers … who would eventually tell me she’d heard very flattering things about me.)

To this day, July 10, 2009, I can tell that stress and worry play a role in my sexual function. My hormone levels are better than I ever thought they would be and I have very good morning erections. Sometimes, though, when I’m being intimate I can tell my erection isn’t as firm as it is in the morning. I’m likely having a bit of fear of failure.

Update: February 1, 2010: I’ve been married for seven months. The more time that passes, the more comfortable I feel and, well, the better things work.

Dostinex vs Bromocriptine:
Bromocriptine did almost nothing for me. I’ve read other posts in which it is 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 paid $45.00 monthly for Dostinex. My insurance, for 25 tablets, paid $730. The cost per pill is $31.00. (I currently (02-24-08) take the generic, at $10 per prescription, and notice no difference between it and Dostinex.)

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. [From August 2002 to June 2005]

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).

Sin Loi’s post responsible for the “lost lust for life” comment

Another poster with pituitary tumors – prolactin as high as 166

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