| D Hamilton 2004-10-21, 7:07 pm |
| 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. (I test drove this in alt.test and
it seemed OK.)
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
Aug04 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
I put this together to track my progress and thought I'd post it just
in case it would be of interest to others. Regular readers of the
group will know that I have trouble being concise; in keeping with
that tradition a boatload of text follows. Much of what follows was
gleaned from previous postings - I've tried to correct the typos - but
regular readers of the group … oh, what the hell. Here goes --
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 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 were week. 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 Testoserone 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
had more muscle mass (even though I was still a big fat guy), 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
Endocronologist; 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 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 my 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 nausia 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 cerainly 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 equalled 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 - equalled 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 Testoserone 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 alble 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 noticible) as
I get thinner. I've taken to wearing tight T-shirts (The A-Style,
commonly called Wife Beaters seem to work best) to keep everything in
place. I jog in one of my 9-year old's shirts. I will probably 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 and 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'm currently going
through divorce (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.
The last time I had blood drawn I left the endo's office feeling less
than great. I'd asked what we'd do if nothing had changed (T-392,
Prl-15.9) and my doc said 'nothing, you're normal.' Well, I didn't
care for that news. And, as my meds hadn't changed I expected my
bloodwork to be the same. When it came back better I was elated and I
immediately felt better. So - there is certainly something mental
going on with me.
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 nor 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 per pill.
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)
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=...2oqgs%404ax.com
Sin Loi's (our current Muerta) post responsible for the 'lost lust for
life' comment
http://groups.google.com/groups?hl=...237%40rwcrnsc53
Another poster with pituitary tumors - prolactin as high as 166
http://groups.google.com/groups?hl=...8mlck%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=...ting.google.com
Don't forget to pick up a copy of Dr. Eugene Shippen's book, "The
Testosterone Sydrome." Available at Amazon.com
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