Recovery Journal 4

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03/17/2000

Next installment:

My quest for T3 replacement

03/31/2000
When I last wrote, I had gotten the salivary hormone lab results back,
that the pharmacist thought had been contaminated. When I received
the post card from the doctors office saying I should reduce estradiol
and stop the testosterone, I decided to reduce the nhrt to every other day.
I did this from 02/13/00 until 03/07/00. 23 days. From reducing the
nhrt for that time, I began having hot flashes again, I haven't had
those in a very long time!

That is one reason I was surprised at the doctor's office telling me
to stop the nhrt. Don't they realize, a woman that has no ovaries or
hormone production does not have the luxury of just "Stopping the hormones"!!!

I can feel even from those 23 days, that my *system* has become
unbalanced, I hope it doesn't take too long to get balanced again!
I sure didn't need any setbacks at this point!

Back to the potential T3 therapy, recommended as potentially helping
me because I have all the symptoms of hypothyroid, fibromyalgia, etc.
My pharmacist faxed his recommendation of a six month trial treatment to
see if it would help to alleviate symptoms and
improve the remaining health problems.

I went to the doctor hopeful that 15th day of March I should have known better!

My doctor was not open to prescribing the T3 and will not do so. Her
reasoning: "There is no data to support any benefit to a patients body
by overstimulating the thyroid ", when TSH tests do not indicate any
abnormalities. Despite my pointing out I had 75% of the symptoms of
hypothyroid. As soon as she heard the words Wilson's Syndrome, her mind
snapped shut on hearing anything else about it.

I then asked her, as my physician, what did she recommend about
the serious remaining symptoms I have, those being, weight gain, despite
normal eating habits of a diet consisting of no red meats or pork,
little to no fried food, etc, fatigue, higher blood pressure and cholesterol
when neither have ever been high in my life, fibromyalgia
symptoms (daily body aches and joint pain that vary in location and
intensity on an unpredictable, day by day basis.

She was willing to: recommend I try using Glucosamine Sulfate for 3
months, and prescribe me vioxx for fibromyalgia type pain and, if I
choose, Xenical, Meridia or Fastin for weight loss.

Odd she was willing to recommend an alternative (Glucosamine Sulfate)
isn't it! Additionally to prescribe me medication for a condition
(fibromyalgia) that no doctor has ever formally diagnosed me with!
and unsafe weight loss drugs. She is also willing to prescribe and has been
prescribing me vicodin for the fibromyalgia pain!

This approach seems all backwards to me, trying to treat the end result
instead of finding out what these things stem from and treating that.

However! None of it surprises me! From a ruptured disc in my low
back, to the endometriosis, and now the health problems caused
from ovarian removal and hormone loss, NO doctor has
offered any treatment that has helped except surgery!

Perhaps if the endocrine based imbalance was dealt with, the endocrine
related symptoms/ health problems might resolve themselves!

Wanted to update on that as I said I would near two weeks ago!

Have been really busy answering email and beginning research and data
collection from the large base of women I've had contact with
over the last three years. I hope to make a difference in the
scheme of this mess someday.

Awaiting the second hormone lab values to come back, then I will consult
with my pharmacist and the Naturopath that is working with him now.

Will update when those results come back!

04/23/00

As always, so much happens in a month in my life!

Last left off I was waiting on the second set of saliva test results
to come back from Aeron Labs, the first test results had been way out of whack!
I had reported that the first test, testosterone level being 100x
higher than it should have been, I was wrong, it was actually like 1000x higher
than normal limits. Well, I got the second test results done, and
am now having a third done from a different lab! The third set of results
should be back in a few days and was done with Great
Smokies Labs, their website is:

BodyBalance

The second set of saliva results from Aeron came out as follows!:

Estradiol-22.1pg/ml- normal range for supplemented is-10.0-50.0 - the
test on 1/20 was 125.8pg/ml

Progesterone-6.98 ng/ml - normal range for suppl.is - 1.0 - 10.0 ng/ml.
1/20 test showed 1.83 ng/ml

Testosterone-6502.0 pg/ml - normal range for a female my age is
- 15 - 44 pg/ml !! 1/20 test showed 11155.2 pg/ml !!!!

How either of these ranges could be correct is unbeknown to me
or the pharmacist! I don't think it's even possible!~ I would be a raging,
hairy mess......and I'm not! I assure you!!

Since I had the second test done, my compounding pharmacy had switched to
the BodyBalance tests from Great Smokies Labs. We will see what their
testing shows! Should be interesting my friends!!! I should have the
results back in a few days and will update as soon as I get them back.

In the meantime, my prescription is near it's end I have cut the tube
open and am scraping the last remnants out of it waiting to get a
renewal until this third set of results comes back! I hope they
hurry up!!!! With BodyBalance you can review the results online
which is pretty cool ! Let's hope they're accurate!

I've had a lot of family stress the last few weeks my grandma had surgery
on her shoulder, I was at the hospital with her for two days, took her
home, etc., then my two cousins were involved in an accident and both
were airlifted to a hospital out of town, one in ICU and in critical
condition. I was then driving there to see him, and brought
him home from the hospital last week. A pretty stressful time!
Now once I've gotten everyone settled, my turn to break down! My
fibro symptoms set up housekeeping again with a vengeance from
that stress so I'm trying to recoup this weekend.
Easter Egg hunting had to be postponed!! *LOL*

Some good and exciting news though! On May 8th, I have an appointment
with a doctor here where I live that treats for Wilson's Syndrome
with T3 therapy! I am very excited about this and will let
everyone know how it goes! I still believe for me this is the missing
link. I've received letters from other women that this was the
missing link in their therapy and getting well, I feel it
is for me as well.

To read about Wilson's Syndrome, check into Dr. Wilson's website at:

Wilson's Syndrome Foundation

Well, that's all for now, my hands are getting cramps in them! I'll
update as soon as I get the next results back!!

Still hoping and praying!

06/05/00

The appointment on May 8th for the consult on Wilson's Syndrome
did not turn out as I'd hoped.

I liked the doctor. He did not feel I had enough symptoms to
warrant treatment for Wilson's Syndrome with T3. What did he base
this on? My temperature chart which through my own fault was not
really consistent and that I had good reflexes.
Never mind that I have 80% of the symptoms!

Anyway! His recommendations? A bunch of supplements which were
conveniently available through his office and in excess of 100.00
a month and to go on the Atkins Diet or Protein Power. He said
he thought my problem was one of insulin resistance or glucose intolerance
or something like that.

I declined buying the supplements at his office as I figured I could
get them from my compounding pharmacy and possibly at a lesser cost.
I did buy malic acid from him which he said would help with the
fibromyalgia pain and I did hear some folks on a fibromyalgia mailing
list talk about malic acid helping with fibromyalgia. I began taking the malic
acid on May 8th, and have been told it takes 3-4 weeks to notice any difference.

I will update tomorrow on the rest of this saga!

06/06/00

I finally got the test results back from Great Smokies Labs, tests
done on 04/09/00, results as follows:
Estradiol-625.3 normal range should be 3-12!
Progesterone-8364-normal range 50-325!
Testosterone-stated result greater than 60000!
too high to even register!

The OB/GYN's office is ringing my phone off the hook when they got this
third test, telling me to stop the testosterone! Hard to do when it is
all in one tube with the estrogens and progesterone

Did a fourth test with Aeron on 04/29/00, an account of this is below

As of January of this year, I was still struggling a lot with fatigue
and body/joint pains, they were much improved, but I felt they should
have been better. It was at that time that "I" decided to do
saliva testing of my hormones and see where levels were at. I have
had a terrible time just getting hormone levels back. I have done the
testing four times now, the first time, estrogens and progesterone were
fairly within normal limits, but the testosterone was showing about
2000x higher than it should be! I was having no male type side
effects as one would think from too much testosterone. My
compounding pharmacist and I decided I might have contaminated the
test by possibly having cream residue on my hands and transferring it to the tube.

We did two more tests, on these all hormones showed much higher than
what they should be and the testosterone showed about 1000x higher than
it should be which I don't even know how could be possible! All the
while, the OB/GYN who halfheartedly prescribed the nhrt at my insistence
to begin with is telling me to stop the testosterone (which I couldn't
because all are in one cream in one tube together), the comp. pharm.
a nd I thought that I still may have contaminated test # 2 & 3 so we did
a fourth. The OB/GYN's office keeps calling actually, it's not even
the doctor but the nurse practitioner that works in the doctors office
that I guess they decided I should see now, (she's who I saw the
last time I went in, no one advised me I wouldn't be seeing the doctor
anymore, they just set me up with the NP for my appt.), I guess this
is beneath the doc for follow up now. Funny that I am the one that requested
the levels in the first place, if I hadn't, there never would have
been any questions or changes probably as I have no negative side
effects and things have improved dramatically.

So! I am in quite a quandary now. I didn't tell this long story to scare
or confuse anyone, just to share what has happened to me so that you are
aware of the possibilities. I am thinking it is much better to go by
symptoms than the saliva tests which may or may not be accurate depending
on the lab I am told also. My OB/GYN's insistence on throwing out the
*baby with the bathwater* is also frustrating me and I don't feel is the
way to handle the problem if there truly is one!

Test #4 I also had DHEA tested for the first time it will be
interesting to see how that turns out.

Just got results from test #4 a few days ago, mail was delayed due
to moving. Estradiol level came out fine, 35.9 pg/ml for a normal range for
transdermal supplementation of 10-50 pg/ml.

Progesterone looked a little low to me-0.74 ng/ml
for a range of 1-10 ng/ml.

Testosterone level is only about 2000x higher than what it should
be...(gee, shouldn't I be a male by now!!!) result was 9422.6 pg/ml,
range is 17-52
pg/ml. Yet still, I have no male type side
effects that one would associate with testosterone excess! At least
not the typical side effects of deeper voice and increased body
hair and acne/oily skin.

The DHEA level came out 250.4 pg/ml, range is
33-300 pg/ml.

You remember the slap stick comedy where people slap themselves in the
forehead in disbelief or amazement? That's what I am doing now!!

NP from the OB/GYN's office called me again yesterday...I
explained I could not just *stop the testosterone* since all hormones
are together in one tube and requested they call me in a new
prescription for the estradiol, estriol and progesterone leaving
out the testosterone of course!! They want to refer me to an
endocrinologist to see why my testosterone levels
are coming up so high!

I meant to ask but didn't, if I stop the testosterone, won't
the levels go back down then, and I'll get to the endocrinologist
and they'll tell me everything is fine? I can just envision it!
Another couple hundred bucks down the drain ! Bad part is, there
are just as many endocrinologists out there that have the same
attitudes or lack of awareness about ovarian removal and nhrt as OB/GYN's!

Guess I've got to start somewhere though.

I think women who have had their ovaries removed should see
endocrinologists, and that there should be endocrinologist
that specialize in this, our endocrine systems have been compromised
and I don't think doctors in general have the expertise to deal
with the complications or know enough about hormones to help us. I
tried writing the American Society for Endocrinologists
and telling them this but they didn't listen....imagine that!!

I began the new prescription of the same strengths I was using before,
that being, Estradiol or E2,.05, Estriol or E3, .02 and Progesterone-1.6.
It's been one week now and I really don't feel any different although
I did notice a profound tiredness coming over me last night where I just
felt totally weary throughout and I felt a little more emotional
and weepy. Possibly side effects hormones shifting or from the
testosterone levels beginning to lower in my body. I need to find out
from the compounding pharmacist how long it takes transdermal hormones
to ebb out of the system once they are stopped.

On to the supplements that the Doctor I went to on
May 8th recommended, as follows:

Cont. 07/04/99

Recommendations for supplements were as follows:
Nutrient 950 or Multigenics
Vanadyl
Chromium Polynictotrate (sp?)
EPA DHA
Ultra CLA
Malic acid for fibromyalgia

I just did not feel right buying all these from the doctor's office.
I did then consult with my compounding pharmacist, an ND and Dietitian and
came up with some revised supplements which I have been taking for
almost two months now, those are: Carbohydrase, which is enzymes that
are supposed to help with the digestion of complex carbs and
digestion. Vitamin C, Fish Oil and Malic Acid. I can't say
I've noticed a big change since not taking the testosterone anymore.
I do seem to be less irritable, my libido is not too good but I'm
not adverse to sexual activity, just don't think about it too much.
It is still early yet, I've noticed sometimes hormonal changes
for the good or bad can take awhile to be noticed.

As far as my health goes. I am feeling pretty good and noticing a
slight! increase in energy. Only slight though, but, I now have enough
energy to get through the normal course of events of a day without
feeling totally wiped out! This is a good thing!! and an improvement!
After I went to that Dr. that recommended the Atkins Diet, I did follow
it for about 2&1/2 weeks. Did ok on it, was not real thrilled with
it as I usually don't eat high fatty foods. I lost about six pounds
in the time I was on it. After the two weeks though, I was considering
going off of it because it was not the healthy way I am used to eating!
even if I am over weight. I cannot give up vegetables and fruit
and you can only eat so many eggs before you've had enough! I don't
eat beef or pork so it was not easy for me. About a week after I quit
the diet, I was sick with kidney stones for a week! What an
awful experience!!! WHAT PAIN!!! Worse than labor! Then the week
after that, I was sick all week with the flu! I lost another six pounds
in that two weeks!! So I've lost a total of 12 pounds now and
wondering if the stopping of the testosterone might have had
something to do with that as well. I suspect it did.

There's so much to think about now and try to get straightened out.
I can understand how it must all seem daunting to many women and they
just take the synthetics that the doctor prescribes and hope for the best.

I have so many things to try and address now. The endocrine system is
very difficult to get straightened out once it gets messed up. The
possible things I need to address are:
Why I had such high testosterone levels?

The continuing possibility of hypothyroid or Wilsons' Syndrome
and I know the hormones can't do their job if the thyroid is not right
and vice versa!

The possibility of candidias, decreased pituitary adrenal and
pancreatic functioning. I'm worried about calcium levels, a hair
analysis showed that I had very high calcium levels, but I've also got
osteopenia and don't know how to address this. No wonder some
of us feel so bad after ovarian removal.

Well, that's it for now...need to address some of these issues and
I am also very busy with answering email, NHRT DATA Collection Project,
continuing work on speeches or a book, so much to do!!!!

Be Well Everyone!
Happy Birthday America!!!!

09/25/00

Happy Birthday America!!!
I cannot believe I haven't written since July 4th!~

I think Angelfire is goofing on me!!!or, I am just losing it!!!
I could have sworn I wrote in August, truly! I did have a large
portion of the text on the Hysterectomy Experiences 5 page just disappear.
Honest!

Well, an update is long overdue.

At last writing, I was still using the transdermal nhrt, minus the
testosterone I had been using from 5/99 thru 5/00. By the time August
rolled around I had again heard of someone that was doing well
on the sublingual nhr from College Pharmacy. I have heard this off
and on from ladies over the last 3 years, hoping I could be feeling
better, as fatigue, joint pain, and now low libido with no
testosterone were still bothering me, I decided to give the
sublingual from College Pharmacy a try, I don't
like to leave any stone unturned either.

I need to say also, that I don't think there is a thing in the
world wrong with transdermal nhrt. Nor the pharmacy I was using previously.
I think different forms of nhrt may work better for us individually
for a possible variety of reasons. I think if one's hrt/nhrt isn't
giving them what they feel are significant relief of symptoms or
health improvements, we should try other forms and dosage adjustments
until we get it the best we possibly can, the closest to balance we can
be for our individual system and chemistry.

That was my motivation for changing, I felt there were possibilities
for better symptom relief and health improvements via balancing my own
hormone levels and obtaining the proper dosages for my body and system.

The sublingual tablets I began on 08/28/00, after thorough consultation
with Pete Hueseman from College Pharmacy, based on my history of surgery,
symptoms, continuing health problems and nhrt usage history is:

Bi-Est-2.5mg
Progesterone-100mg
Testosterone-0.625
Above in one sublingual tablet to be dissolved
under tongue 2x daily, approx. 12 hours apart.

Also DHEA-25mg/1 capsule daily-pharmaceutical grade.

At today's writing, it is almost a month on this new sublingual nhr,
with my second month's refill after discussion with Pete and approval
from my doctors office, the Bi-Est will be increased to 3.75mg, the
remainder of the prescription will stay the same. The reason for this
is, after being on this new nhr for about 10 days, I was feeling
more energetic in the morning and throughout the day (not a huge
amount, but an improvement), but by 5 or 6 pm, I was just crashing, suddenly
overwhelmingly tired. Pete felt an increase in the Bi-Est might help with
this. I just got the change approved by my doctors office today so I
will report back on the effects of the increase.

All in all, I'm real happy with the sublingual. I like the "form"
better than transdermal which I always wondered if I was really absorbing
it well. It is easier for me to remember to "take a pill", than rub
on a cream, I don't put much on my skin on a regular basis except a
little Lubriderm so it's not something that I routinely did.
Plus, as poor as my memory is, I honestly had a hard time remembering
if I put the cream on or not. I do take a few supplements
on a regular basis and keep them in a seven day pill box so I
can remember so it's easy to put the nhr in with them and take them twice daily.

As far as health improvements, thus far, I have
noticed the following:

About 10 days after beginning the sublingual, I noticed feeling
more *myself*. A little hard to describe but any of you that have
noticed not feeling like yourself after hysterectomy or ovarian
removal will know what I mean. It seems my sense of myself, my
*personality* as it was has returned, something that is very difficult
to deal with when it escapes you and sometimes you don't even,
realize that's quite what it is, what a relief when you feel
*yourself* return :o)

I have had an increase in overall energy and a better sense of well
being. My joint/muscle/body, has also decreased and flare ups with
stress are becoming more infrequent, this most certainly has
to do also with a big reduction of the amount, of stress in my
life after recently separating from my husband who is grappling with
alcoholism. I have a fair amount of consistent daily peace in,
my life now which I desperately needed, and I know this has helped also.

I have felt an increase in libido which is a bit untimely since
I am now separated! This should be due to the addition once
again of testosterone in my nhr mix, which I did not use from 5/99 until
beginning the sublingual. I definitely felt a lowered libido without the
testosterone. I have also experienced once again a slight increase in,
oily skin and blackheads since resuming the testosterone but
if I had to choose between low libido and oily skin, I can live with
the oily skin!!! *smiles*

All in all, I think these are good, solid improvements for
only one month and I am hoping for more with the addition of dhea
for the first time ever, and the increase in Bi-Est. I will keep
everyone posted!!!

There is nothing that comes close to the hormones we used to make if
we had our ovaries removed, but nhrt! I am very thankful for the
role of good, knowledgeable compounding pharmacists
in our lives and health.

Till next time, and sooner than last time!!!!

*huGZ!Blessings&Good Health*

01/08/2001

Happy New Year to all who pass this way!

Once again it has been too long since I've written an update!

Beginning 11/06/00, I began noticing a decrease again in libido,
decreased vaginal sensation (very unusual for me), and increased acne breakouts.

A possible recommendation for low libido and decreased vaginal
sensation was to add more testosterone, or, double the dhea dosage,
or, a testosterone gel that is applied directly to
the clitoris and increases sensitivity.

I was apprehensive about adding any more testosterone since I had
such high levels only 6 months ago, and I worried the increased acne
might mean I was again having negative side effects or reacting
to the testosterone, I decided to give it a little
more time and see what happened.

Three weeks passed and I began having more acne, an "oily" forehead,
and once again developed cysts in the labia as I did when my testosterone
levels were really high before, I was also becoming increasingly
agitated more often and got the same few dark hairs around my navel as I did before.

By 11/24, I decided I needed to stop the testosterone I consulted
with Pete, and spoke with my doctors office, both concurred and
I got my nhrt changed as of 11/27-

Began new sublingual nhrt 11/27, Bi-Est-3.75/P-
100mg/DHEA-12.5, all in one sublingual tablet,
2x daily. I decided to take the dhea in my sublingual
since I had problems absorbing hormones in oral form before.

Following are a rundown of events since omitting
the testosterone on 11/27-

12/10/00

Doing well minus the testosterone so far! energy pretty good as
I'm working two jobs again, 40 hrs. M-F where I am on my feet 8 hrs
straight and the on call scheduling work from home, now 5 nights a week
as of this week instead of four.

Went shopping with my mom for xmas yesterday, 6 hrs at the mall
and did not feel too bad after-wards! that would have worn me out for
the rest of the day usually.

All cysts are almost gone, oily forehead is lessened as is irritability.

Libido is still low to none, just don't think about sex too often
of course I've a lot of stress in my marriage right now, plus super
busy...perhaps it's the bodies way of conserving it's resources.

12/29/00

Still on gluten free diet, did not do too well over the holidays though :o(

Had to begin taking one of the sublingual tablets a day that has
testosterone in it as I had some left over and did not have enough
money to get my prescription refilled this week. I hate to put the
testosterone in my body again because I am just on the down swing
of recovering from the excess testosterone symptoms (acne, oily skin,
strange cystic type breakouts.

Energy levels have been pretty good.
Working two jobs though and under too much stress still.

Libido is low again :o(

01/08/01

A new year!
Still having to take the old script with the testosterone in
it, should be getting my new script tomorrow....

I've been feeling really good as far as body and joint pains,
have had very little to speak of for the last two weeks...haven't
even seen my massage therapist for the last two weeks and that is
somewhat of a record for me!

Have been really tired in the evenings again,
although I am working a lot.

Most notably have had some very strange skin conditions going
on these last few weeks and it makes me wonder if it's just from
starting then stopping then restarting the testosterone again.

I'm not doing anything else or taking anything else new. No new
foods, clothes, laundry detergents or anything of that nature.

I seem to have gotten rid of the cysts in the labia finally! thank
goodness! now I have a cyst on one of my breasts, and have developed
an itchy rash with small raised places bilaterally on the same places
on my back, sides, below the rib cage, etc....very strange indeed!
I can think of nothing to have caused it.

I'll be glad to get off the testosterone again and see if all
these weird skin things clear up.

That's pretty much it for now....

Stay well...will keep all posted.

Saga continued on:

Recovery Journal 5

Jeannah McElroy. 2001


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