| d hamilton 2007-01-10, 5:10 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.
For those familair with past postings, I've snipped the new info for
December's blood letting and place it here as well as below:
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.
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.
Dec06 6.9 (2.1-17.7)
I weigh 228
I'm not concerned about the weight. My jeans fit the same.
I've been taking cabergoline for 4 months
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. I've lost a total of 146 pounds.
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=...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 Syndrome." Available at Amazon.com
|