Here is the letter I wrote to Oprah Winfrey, so you’ll know
more about me---my illness and the treatment I received.
Hello Ms. Winfrey!
I want to tell you my story.
I am a highly intelligent woman (real modest too!) who
spent my youth coasting through school, taking all the top
honors classes but never having to study to make my
straight A+ grades. I graduated at the top of my class with
twice as many honors credits as any of my peers. I had
participated in so many extracurricular activities that I
earned four separate letter jackets! My bedroom was
filled with my trophies and awards.
On 2 separate full academic scholarships, I headed off to
college where I majored in math. It was just as easy as
high school; I rarely had to study to earn top grades even
though I also worked part time. I graduated Magna Cum
Laude and was active in numerous clubs and social
service groups throughout my college years.
I married an Air Force officer and happily moved across
the country with him. I worked part time and served on the
board of our Officers’ Wives Club; as a matter of fact, I
held THREE board positions and wrote 2 different articles
(on 2 different topics) for our monthly magazine (as well
as being the asst. editor). My life was rich and full and I
never felt too busy or overwhelmed. It was easy.
I was thrilled to learn of my first pregnancy in 1992. I
continued to work out at the gym throughout my
pregnancy and actually completed more than 100 miles
during my last trimester, earning a Century Club T-shirt
from the Wives’ club. But I also developed carpal tunnel
syndrome and an awful ache in my knees.....
I had a beautiful baby boy and when he was nearly a year
old, I became pregnant again. I didn’t have the same
energy I had before; I was tired more often and never
made it to the gym even though my husband was happy to
stay home with our son so I could work out. The OB told
me I was tired because I was pregnant again "too soon."
That sounded like bull to me, but I believed him anyway;
he’s a professional, right? In Sep 94, I had another
beautiful baby boy.
But I just didn’t feel good at all. By Jan 95 I was in the
doctor’s office wondering why my hair was falling out, my
skin was so dry it was cracking and bleeding, I was so
tired all the time, and I was gaining weight even though I
ate sensibly and was nursing my 4-month-old baby. My
sister has thyroid disease and those are classic
symptoms, so I asked my doctor for a thyroid test.
My bloodwork came back abnormal, indicating that I did
indeed have thyroid disease; the TSH was well above the
normal reference range and the T3 uptake index was too
low. But my doctor brushed it off, saying "Oh, you just had
a baby so this is irrelevant. It’ll pass." He assured me that
there was nothing to worry about and then told me I
shouldn’t have babies less than 3 years apart because my
body was still "tired" from being pregnant with my first
child.
I went home and dealt with it. I got pregnant again in Oct
95. During this pregnancy, my knees hurt so badly I could
hardly walk. I developed such severe pain in my feet that I
saw a podiatrist twice for treatment. My carpal tunnel was
coming back. My skin was dry and scaly, cracked and
bleeding. My hair became coarse, brittle and began to fall
out. My body temperature was always well below 98 and
sometimes even below 97 degrees, even in the middle of
a hot summer’s day. My memory started to suffer, which
was crushing to a person who had always had the
sharpest mind in the class. I had intermittent ear pain,
tinnitus and numb arms. My eyes became so sensitive to
light that I had to wear sunglasses even on a cloudy day.
My face became puffy. I began to get mildly depressed,
feeling worthless. Although I am a stay-home mom who
adores children and think mine are the greatest in the
world, I began to lose interest in playing with them,
instead spending hours sitting at my computer staring
mindlessly at a solitaire game.
I had my baby in July 96, nursed him, and gained 20
pounds while nursing him (DURING my pregnancies, I
would gain only 17-22 pounds and would lose all of it by
my 6-week postpartum checkup. Yet while nursing the
babies, I’d gain 10-20 pounds even though I ate less than
ever). My other debilitating symptoms didn’t go away after
having the baby, either. I became pregnant with our last
child in June 97. During this pregnancy I developed such
severe anemia the doctor wondered how I could even be
alive! I also had higher blood pressure, and yet I had
always had lower-than-normal blood pressure my whole
life. My cholesterol also went way up. In addition, I still
had all those other awful symptoms that I had during the
previous pregnancy.
I had this last baby in February 98. I weaned her in
November 98. In the past, every time I’d wean a baby my
milk would dry up completely within 2 weeks. But this time,
I weaned her and my milk did not dry up. As a matter of
fact, I am still lactating today, nearly 3 years after
weaning my last baby! It has never dried up in all that
time—never.
I also developed borderline hypoglycemia; if I got hungry
but didn’t eat immediately, I’d soon be so nauseated I’d
have to lie down and try desperately not to throw up.
Often I would dry-heave.
So, between 1995 and 1999, I gained nearly 80 pounds
even though I was eating less than ever before. And I felt
horrible. But I did not think it was my thyroid since more
than once, my doctor had told me my thyroid was fine.
However, by the fall of ‘99 I was so miserable I thought I
was dying. I had never had a menstrual cramp or heavy
period in my life but suddenly I was menstruating so
severely that it was out of control. 2 super-plus tampons
and a maxipad per HOUR still didn’t control my bleeding; it
streamed unabated down my legs. I was cramping so
severely I couldn’t get out of bed—I’d never had a
menstrual cramp before and this was far worse than
labor! My hair fell out so much I had to sweep the
bathroom floor every morning after brushing it. In the
shower, I lost so much hair that I had to clean out the
drain 2-3 times per shower to keep the water going down.
I was sleeping constantly. I’d get up at 7:30 AM and make
lunches for my 2 oldest to take to school with their dad
and then collapse on the sofa. I’d sleep all morning while
the two little kids played around me. They’d beg for lunch
around 11 AM so I’d drag myself from the sofa to feed
them. Then I’d collapse again and sleep until 3:30 PM
when I had to go pick the older boys up from school (I
actually set an alarm clock for 3:30 to make sure I’d wake
up in time; more than once the school called at 4 PM,
wondering where I was). As soon as we got back home, I’
d collapse again until 5 when my husband got home. At
that time, I’d get up to start dinner while he’d oversee
homework. We’d eat, put the kids to bed, and then I’d sit
like a zombie on the sofa folding laundry before collapsing
back into bed by 10.
My skin was awful. It was thickened and scaly, coarse,
cracked and bleeding. I developed what I thought was
dandruff but no medicated shampoos helped. Upon closer
inspection, I realized that it was not dandruff. It was dry
skin on my head! It got so dry, thickened, and scaly that
my scalp began cracking open and coming off in big
chunks, leaving bloody holes all over my head. My
husband told me I had begun to snore loudly. My memory
was shot; I felt brain-dead and stupid. My eyes were
super-sensitive to the light. My entire body, from head to
toe, ached severely. It was like every cell in my body was
in constant pain; it hurt just to exist, let alone move. My
right arm was so painful (whenever it wasn’t numb) that I
could barely use it.
I went to the doctor Jan 2000 for my annual gyn and
requested a thyroid check again. Now my TSH was 8.0,
well above normal and indicative of thyroid disease. We
had moved by this time and my new doctor immediately
began me on 75 mcg of synthroid. When I showed him my
bloodwork from 1995, he was horrified that I hadn’t
received treatment. He said I had suffered horribly—and
gained 80 pounds—for 5 years needlessly. Meanwhile, he
did another blood test to see if I had thyroid antibodies in
my bloodstream. I did, so I had Hashimoto’s autoimmune
thyroid disease, in which my own immune system is
destroying my thyroid gland. There is no cure.
My husband immediately began intensive research on the
Internet to learn all he could about the disease. He read
everything: medical journals, research studies, thyroid
forums, alternative medicine websites—you name it.
Meanwhile, my reaction to the synthroid was to give me
severe constipation, destroy my libido, and make my hair
fall out even more. My January menstruation hadn’t been
quite as bad as in 1999 (I had begun taking vitamin B
complex and it helped), but when I started the synthroid
my February menstruation was even worse.
By late March 00, my TSH had gone down to 1.8. My skin
and scalp had improved some, and my hair was falling out
at the rate of only one drainful per shower (instead of 2-3
drainfuls per shower). But I was still tired and still
lactating. The doctor suggested we wait a bit to see what
would happen.
By June 00 my TSH was down to 0.7. My skin had
improved with the high humidity of the San Antonio
summer (even before treatment, it always got better in the
summertime). My menstrual cycle was under good control,
but I was still lactating and still tired constantly.
Meanwhile, my husband had read that a healthy thyroid
gland produces 9 different thyroid hormones (T0, T1, 3
kinds of T2, 2 types of T3, and T4). 80% of what your
gland makes is T4, which is a stable compound that your
cells convert into useable T3 as needed. However, 15% of
the T3 your body needs comes directly from the thyroid
gland. Some of your cells demand serum T3 straight from
the thyroid; they cannot convert T4 into T3. Well, my gland
didn’t work. And Synthroid contains only T4! I told my
doctor that perhaps I needed to have my T3 measured,
that maybe I didn’t have enough since synthroid wasn’t
providing any. And maybe my cells weren’t converting the
synthroid into T3; this could easily explain my unresolved
symptoms.
Unfortunately, doctors are taught very little about thyroid
disease in medical school. They are just told "give a TSH
test and if it is over 5.0, give the patient a synthroid tablet
to take daily." So when I suggested that my doctor
measure my T3 levels, he said "Oh, they should be fine
because synthroid IS T3." Well, he was wrong. It’s pure
100% T4.
He recommended I go to an endocrinologist to figure out
why I was lactating (my prolactin levels were normal). But
we moved in July 2000 so I couldn’t get in to see an Endo
beforehand.
We arrived here in Georgia in late July. We found a house
and got settled in, but I went way downhill during the
month of August. My hair was coming out by huge
handfuls; back to 2 drainfuls per shower. I could not stay
awake; I’d barely get the kids to school and then sleep
until noon. My skin was horribly dry in spite of the high
humidity. The "dandruff" came back—with huge bloody
holes in my head again where chunks of dry skin were
coming off. My husband said I began to exhibit sleep
apnea; he spent several nights lying awake listening to my
breathing so he could shake me every time my breathing
stopped. And I got a urinary tract infection (common for
thyroid patients).
On 31 August 00 I went to my new doctor to tell him that
my last doctor in Texas had recommended I see an
endocrinologist. He quickly wrote out a referral and was
about to send me home when I showed him my scalp and
the big bloody holes in my head where the skin was
coming off. That so horrified him he wrote out a new
prescription for synthroid, for 100 mcg/day.
Well, a couple days later I noticed a strange mole on my
shoulder. I went to the doctor to check it, and happened to
get my appt with a different man from the one I saw the
week before. He suspected skin cancer and gave me a
dermatology referral. While he was examining me, I told
him about my thyroid condition. He too did not know about
T3 and T4, and all the other things we had read in our
research. I told him I really wondered why no one had
ever measured my T3 levels to determine if my body was
converting my synthroid into useable form. So he looked
up some stuff in one of his textbooks, realized I had a
good point, and ordered full lab tests.
On 6 Sept those lab samples were drawn. My TSH was
2.6. My T4 levels were at a good amount, but my T3
levels were so low they were borderline. However, since
they were still just barely within the "normal" range stated
by the lab, my doctor said they were just fine. This blood
profile, by the way, is classic for patients who take
synthroid. The synthroid quickly lowers their TSH and
raises their serum T4 levels, but their T3 levels are very
low for 2 reasons:
1)their bodies are being deprived of the T3 which is
normally excreted by the healthy thyroid gland
2)many of their cells are unable to convert the synthroid
into T3.
By October, I had seen the dermatologist and he
confirmed I had a skin cancer on my shoulder (basal cell
carcinoma). He removed it, and shortly after that I found
some research which showed that benign and malignant
tumors result from untreated hypothyroidism (http://www.
healthy.net/asp/templates/article.asp?
PageType=Article&ID=528 page 3 under the heading
"Medical History"). Gee thanks. So I spend 5 years with
untreated hypothyroidism and now I’m dealing with skin
cancer.
In October, I wasn’t sleeping as much and my skin wasn’t
cracked open quite as much. My hair was falling out a little
less; I had to clean the shower drain only once per shower
instead of twice. However, I started hurting severely all
over my entire body. Every cell just ached horribly; it was
excruciatingly painful just to EXIST, let alone move. And I
began to develop some new symptoms I had never had
before. My tongue became thickened and unwieldy; it was
hard to control. I couldn’t form the words I had in my head
and I was biting my tongue and cheeks a lot. I would think
one word and say something else. I also developed bad
"brain fog;" my head was cloudy and I just simply couldn’t
think straight anymore.
By November, we did another blood draw and my TSH
was down to 0.3. My husband had done further research
and found a scientific study in a medical journal in which
they gave some patients just synthroid while others were
given synthroid plus oral T3. The patients on oral T3 felt
better, did better on tests, and had less depression. The
conclusion of the study was that it is clear the body needs
the T3 which is produced directly by the thyroid gland so
patients who had non-functioning glands and are taking
only oral T4 are not getting what they need; they need oral
T3 in addition to the oral T4 to make up for the T3 they
are not getting from their glands.
But the doctor had given me an endocrinology referral so I
simply bided my time until my appt on 7 Dec. We were
sure that I’d finally get the care I needed; this
endocrinologist I was to see was a woman so she’d
understand a woman’s body well (and thyroid disease is
far more common to women than men).
I went to my Endo appt with great anticipation. I walked in
with my skin so thick and scaly I looked like an alligator. It
was cracked open and bleeding; I left blood smears on
the paperwork and the exam table. My scalp was coarse
and scaly too. My hair was falling out everywhere. I hurt
so bad from head to toe that I could barely walk. My
tongue was thick and unresponsive. I was exhausted,
couldn’t think straight and was having difficulty forming
words. I was so brain-dead I stared blankly at the wall
and tried to remember why I was there. I had gained
another 5 pounds since August so now my weight was
222. I was depressed and moody and felt like I wanted to
just DIE.
She checked my reflexes and they were non-existent. But
that was it. She looked no further at me at all; she ignored
my skin and scalp and aching joints. Instead, she looked in
my records and saw my old lab report from Sept (a 3-
month-old report) and said "Oh, a TSH of 2.6. Well then
you are fine." I said I sure didn’t FEEL fine. I told her I
was still lactating and had been for 2 solid years and she
said "oh well these things take time." I showed her my
bleeding dry skin and she said "but it is cold outside so
that is normal!" even though HER skin wasn’t thick and
scaly and bleeding..... I told her I had gained 20 pounds all
year long while taking synthroid and she said "oh well."
She then informed me that she didn’t need to see me
again in person for 6 months. She said that I could get
another TSH test in Jan 01 and have it faxed to her office,
and that from now on there would be no reason for us to
see one another; she would simply call me if she thought I
needed anything. Then she wrote "Diagnosis: Hashimoto’
s" on my chart and charged my insurance company $225
for it! Good grief; I already knew I had Hashimoto’s a year
ago!
I was so upset I went back to my Primary provider the
next day and complained. He immediately agreed to check
my adrenals, but he too, could not see past my "normal"
thyroid labwork. But at least he could see that I was
clearly a very sick woman. So he did a thorough exam of
me from head to toe and concluded that he should check
for rheumatoid arthritis to explain the pain, and lupus to
explain my skin problems. I told him how frustrated I was
and he offered me Prozac….
I told him to go ahead and draw his blood but that the
tests were going to come back completely normal. I told
him that I needed T3 but he said he wanted to check for
other problems first. I also refused to take his Prozac. I
went home miserable.
For Christmas we went to Texas to visit my family. But my
knees were so painful I couldn’t climb the stairs in my mom’
s or my sister’s homes. My dear sister ran up the stairs
for me whenever I needed anything. I felt awful and
helpless. I was so depressed that I spent one whole day
crying nonstop.
By Jan 01, I was really depressed and frustrated. My hair
was coming out 2 drainsful per shower. I ached severely
all over. I was exhausted—I’d sleep all day if you let me. I
had terrible difficulty thinking and speaking. My skin was
still cracked and bleeding from dryness. The "dandruff"
was getting even worse. And now something new: I was
starting to get really cold all the time. I was badly
constipated. Then the menstrual irregularities began to
return and I got another urinary tract infection. I called the
doctor to see what his blood tests would say and he
confirmed what I already knew: I did not have lupus or
arthritis. He had read all the research I left with him and
said "I think you need T3 but I must check with my peers
before writing the prescription." I also asked about my
adrenal tests and he said that an 8 AM serum cortisol
showed 6.7, with anything between 6.2 and 29 being
"normal." For some reason, this extremely low number did
not trouble him at all.
So I waited while he called his peers. The next morning he
called me back and said "I think T4 is the answer; we’re
going to leave you on synthroid." I was so upset I began
to cry. He said that he wasn’t convinced that I did not have
something else wrong with me besides thyroid disease.
The more I spoke with him, the more I realized that his
boss had forbidden him to give me anything except
synthroid. He wanted to, but had been forbidden to do so.
On 17 January, I saw a new doctor. I described my
symptoms and his first words were "You need T3." He
immediately switched me off of synthroid (pure T4) onto
Armour natural thyroid. Armour contains T0, T1, T2, T3,
and T4 in the proportions which the healthy thyroid gland
produces them. I was thrilled; it was so obvious that
synthroid did not work for me and yet I had spent a year
suffering while the doctors forced me to take it. If I get a
urinary tract infection and the doctor gives me a medicine
which does not cure it, does he just make me keep taking
it? No, he switches me to a different medication. Well, I
have thyroid disease and I spent a year taking a
medication which clearly did not make me better (the more
I took, the worse symptoms I got). But no one would let
me take a different thyroid preparation even though there
are at least a dozen to choose from. Doctors are
programmed to give patients only synthroid no matter how
poorly they respond to it.
So I began to take Armour in a very small dose (1/2 grain)
because my new doctor had never put anyone on Armour
before and did not know how much I would need. His plan
was to build me up slowly until my symptoms were fully
alleviated. He assured me that it was not OK for me to be
so miserable and that he was going to heal me. I was so
happy! When I started taking Armour, I immediately felt so
much better; the depression cleared up by the second
day! (the study we found showed that patients given oral
T3 quit having depression; the brain is dependent upon
serum T3; it cannot convert T4 into T3). The doctor
continued to increase my dosage slightly, looking for the
right amount for me.
When I reached 1.5 grains, I crashed bad. I spent 2 whole
days in bed sleeping nonstop (fortunately that was a
weekend so my husband was home to care for the
children) and I didn’t eat ANYTHING for 5 days. I could
barely move. I was a wreck. My body hurt from head to
toe and I was weak as a newborn kitten. I was so
depressed and apathetic I wanted to die. My poor
husband had to force-feed me my thyroid medications. I
called the doctor’s office and begged for help but all I was
offered was Prozac! That made me pretty mad; I wasn’t
feeling horrible due to a deficiency of Prozac in my
bloodstream, but that’s the only help I was offered (Just
think what would have happened had I taken the Prozac;
my T3 and T4 levels would have dropped even further
because anti-depressants lower your thyroid levels). And
yet, as bad as I felt, I still felt better on the Armour than I
did on synthroid, believe it or not!
By mid-February ‘01 I started on 2 grains of Armour. The
crash wasn’t as bad this time, but it was there. I
recovered and felt better than I had felt in 6 years---and
WAY better than I ever felt on synthroid. My skin was
nearly normal; it was thin and pliable instead of thickened
and scaly and cracked. Still a little dry though. Most of the
body aches were finally alleviated, but my feet were still
very painful, especially in the morning or after I had sat for
a while. I was still having some breathing problems at
night too. I was so much better; I had a few mild
symptoms but mostly I felt normal much of the time. Then
my menstrual cycle came and I spent the whole time
sleeping and depressed with cramps. Once it was over, I
was better again. I felt like I was sitting on top of a razor-
thin wall. On one side of the wall was good health and the
other was the Pit of Despair and uncontrolled
hypothyroidism. I was balancing on the top with mild
symptoms and the slightest thing would push me off into
the Pit. My menstrual cycle was one thing that knocked
me off the wall. I felt that another half-grain would push
me over onto the side with Good Health where I could live
happily and be safely away from that horrible Pit.
I went back to this wonderful new doctor in mid-March
expecting to be given another half-grain/day so I could
finally get rid of the last of my symptoms. Unfortunately,
he could no longer help me. He had gotten in very bad
trouble with his boss for switching me from synthroid to
Armour! Apparently, because I had "normal" bloodwork
and very low TSH while on synthroid, the boss decided I
was cured and no longer needed further care. Never mind
the fact that I my brain had ceased functioning, I slept all
day, I was going bald, and I had severe fibromyalgia
making my existence one massive painful experience. On
synthroid my T4 had been sky-high (but still just within the
normal range) and my T3 rock-bottom (right at the bottom
number of the "normal" range). And my TSH was low. So
obviously there was nothing wrong with me that a little
Prozac wouldn’t fix, right?
My new doctor was clearly upset that he had been forced
to quit treating me and I was devastated. What was I to
do now? I left his office in tears and cried for the next 2
hours. Here I had found this wonderful doctor who was
going to cure me and now I was being shoved out of his
office and forced to start all over from scratch again. It’s
only my LIFE at stake here, but who cares? What does it
matter that under-treated hypothyroidism will kill you? Just
learn to deal with it, Gail. Have some Prozac.
Well, the experience threw me right into the pit of despair
again. My symptoms came back full blown. I ached all
over, my hair fell out more, I was depressed, my skin
dried up and fell off---overnight I developed severe
symptoms from head to toe. I spent about 4 days totally
miserable and barely able to function.
Once I recovered from this latest blow, I got on the phone
and called every doctor and endocrinologist within my
health care plan---even the ones located over 6 hours
away. None of them used anything except synthroid and
you can bet I wasn’t going back to THAT! Even just 2
grains of Armour had me feeling better than synthroid ever
did. That’s when I realized that I was going to start paying
for my own medical care. I visited Mary Shomon’s Top
Doc list and found the nearest doctor who prescribes
Armour. His practice is 130 miles away, but I made an
appointment. I was still too unwell to drive there by myself,
so my husband took a day off from work, loaded up the
kids, and drove for me.
This latest doctor didn’t hesitate to increase my Armour.
He said that I was probably either making too much
reverse T3 or had cellular resistance which was causing
me to need more oral hormone; this is caused by years of
untreated hypothyroidism. He told me to start taking
another half-grain per day for a week and if I still didn’t
feel well, to go ahead and increase the dosage again at
my discretion at a rate of a half-grain per week, up to 4
grains. He warned me to watch for heart palpitations and
anxiety, signs that I was taking too much. But otherwise,
he said to monitor how I felt and take what made me feel
good. He pointed out that thousands of people die each
year from ibuprofen, but no one has died from taking
Armour. And yet doctors hand out Motrin by the truckload
and refuse to prescribe Armour. Makes no sense.
Especially since a few days of hypERthyroidism won’t hurt
you and is easily cured by decreasing your dosage. It
says so right there on the insert of all thyroid medications.
Meanwhile he was going through my labwork from my
previous doctors and found the 8 AM serum cortisol test I’
d been given in mid-December. The 6.7 disturbed him very
much. He immediately ordered a day-long adrenal test and
explained to me that cortisol levels start out at their
highest in the morning and drop off throughout the day
because your glands rest at night. His concern was that I
might be doing all right in the morning when my glands
were rested, but that I might have poor function by the end
of the day.
I did a saliva test which measured my cortisol levels at 8
AM, noon, 4 PM, and midnight. The Armour had done a lot
to improve my health and it showed in my adrenal test.
After 2 months on Armour, the 8 AM cortisol level had
come up to 11, which was an improvement but my new
doctor looks for 12-15 to optimize your health. So it was
still lower than it should be. The noon level was even
worse, way down at the bottom of the reference range.
My 4 PM level was well below the reference range, which
showed that my adrenals were really struggling. And by
midnight, my body had ceased making any cortisol at all,
so I wasn’t even on the chart.
This underscores the importance of day-long adrenal
tests. Any other doctor would have looked at that 8 AM
level of 11 and told me I was perfectly OK….. Clearly I
was not.
The doctor started me on a physiologic dose of 20 mg
daily. I took 5 mg at each meal and 5 at bedtime. I began
taking these doses as soon as I got home from his office.
That night, for the first time in years, I could breathe
normally while I slept. The next day I woke up with no pain
in my feet! I hadn’t been pain-free in many years. Over the
next few days, the very last of my "thyroid" symptoms
disappeared. My husband did more research and found
articles describing hypoadrenal symptoms. Funnily
enough, they turned out to be very similar to hypothyroid
symptoms…. And the two conditions go together; most
hypothyroid women are also hypoadrenal. You have to
treat both to recover your health. So maybe that one
doctor was right in a way; I did have something else
wrong besides thyroid disease.
It is now May 2001 and I feel WONDERFUL. Not only
have all my symptoms disappeared but I have the energy
and enthusiasm of a child. While the Armour made me feel
much better (especially when I was finally permitted to
increase my dosage), the cortisol really did the trick. On 3
grains of Armour, I thought I had gotten back to my normal
self; I felt so much better than I had felt in years and I was
no longer depressed. But once I started the cortisol, I
found out what life is really supposed to feel like again!
Now that I feel so great, I remember that this is the way I
always felt when I was in college. Best of all, it has made
me back into a real mother again. Since I started the
cortisol, I am once again reveling in my wonderful children
and able to play and frolic with them---instead of just
barely making it through each day with only enough energy
to cook and fold laundry.
That is my story and I think it raises important questions.
First of all, why was I not given treatment beginning in
1995? The bloodwork clearly showed I had abnormal
thyroid conditions. My TSH was a full point above the
reference range and my T3 uptake index was well below
the reference range. Not only that, but my sister was a
hypothyroid patient, and family history of thyroid disease is
a well-known risk factor. However in our research we have
learned that many doctors regard hypothyroidism during a
pregnancy or nursing to be "transient" and not warranting
treatment. Well how do they KNOW it is transient? How
many months or years or decades must a woman wait
before they decide it isn’t going to go away? And look at
what happens to her during that time; she is gaining weight
and her cholesterol levels are skyrocketing (so she is
building up her arteries nicely), plus she is working on
hypoglycemia (untreated hypothyroidism results in
diabetes and heart disease, among other nasty things). In
addition, our research has shown us that women who
develop postpartum hypothyroidism are much more likely
to develop the lifelong autoimmune disease than women
who do not develop postpartum hypothyroidism. So
obviously, the fact that I clearly had the postpartum
disease indicates that my doctors should have been
checking my thyroid levels and looking for antibodies every
few months, especially when I was pregnant and nursing
my next two babies over the next 5 years. But they didn’t.
Instead, my symptoms were blamed on my pregnancies;
aren’t all pregnant/nursing mothers depressed and aching
all over and hair falling out and skin cracked and bleeding
and so exhausted they can barely walk? Uh, yeah, right.
I believe ALL pregnant and nursing women should be
screened for thyroid disease. Why? Because I just read
research in which they showed babies nursed by
hypothyroid mothers suffer from hypothyroidism in the first
few months. Why? Because the only hormone a nursing
mother passes to her baby in her breast milk is the thyroid
hormone (which is why so many women become
hypothyroid while nursing). A baby who isn’t getting
enough will be small and sleep too much, plus has a lower
IQ (this is from a double-blind study in which they tested
the IQs of 5-6-yr-olds they had followed since birth, and
the thyroid condition of the mothers). Well, I am mad. My
last baby was born weighing 9#3oz and yet never grew
much, so by the time she was 4-6 months old, people in
the grocery store were asking me if she was a preemie.
She also would often sleep up to 17 hours straight. And I
was so sick with hypothyroid symptoms during those
months I nursed her..... In addition, my first baby’s eyes
were so sensitive to sunlight that we could hardly take him
outside. This light sensitivity is a hypothyroid symptom.... I
am very angry! What kind of long-term damage has been
done to my children by the doctor’s failure to treat my
condition?
So the doctors clearly have no idea which hypothyroidism
is "transient" and which is going to stay with you for life.
My doctor who brushed me off in Jan 95 should have
checked my blood for Hashimoto’s. Not only do women
with postpartum thyroid disease often go on to develop
permanent autoimmune hypothyroidism, but their babies
may be permanently damaged by their deficiency. In
addition, once a patient begins to exhibit clinical signs of
hypothyroidism, her body has already been damaged in a
fashion that could be permanent. She MUST receive
treatment immediately.
Another question this raises is the training of our doctors in
thyroid disease. They are taught that the TSH test should
be used alone. Unfortunately, this doesn’t work. Synthroid
(the most commonly prescribed thyroid preparation--95%
of patients take it) will lower TSH rapidly even if the body
does not convert the synthroid into T3. So the patient has
tons of synthroid (T4) coursing through her bloodstream
and thus has a healthy low TSH level—and is dying from
hypothyroidism because her body is unable to use her
medication. Doctors should be measuring patients’ T3
levels too. And let’s not forget the adrenal factor, which,
unfortunately, all the doctors are! The Physicians Desk
Reference clearly states that patients exhibiting
hypothyroid symptoms should have their adrenal function
checked BEFORE the doctor administers thyroid
hormone, or she could go into an adrenal crisis (which is
what happened to me in Dec ’00 and Feb ‘01, and it nearly
killed me). And yet there’s hardly a doctor on this planet
who does so. Not only does this leave the patient feeling
miserable, but it endangers her life and sets her up for an
early death. Gee thanks.
Another thing: we found a scientific study which shows
that people also need the T2 that a healthy thyroid gland
produces! This study showed that some cells use T2 to
produce the enzyme which converts T4 into a useable
form. So if you give a patient only T4, not all of her cells
will be able to use it. Sure, SOME of her cells will be ok
and will convert that T4 over, but she must have T2 for
total health. Also, T2 is used by the cell mitochondria to
produce ATP, the fuel for cells.
Another problem we thyroid patients are having: doctors
rely too much on the labwork. Doctors have been treating
thyroid disease for more than 100 years. Before we had
labwork, they would examine the patient and her
symptoms and then give her desiccated thyroid tablets ,
increasing the dosage until she felt good (by the way,
Armour thyroid is desiccated thyroid). However, with the
advent of these thyroid lab tests, doctors are ignoring a
patient’s symptoms and looking only at her labwork. I hold
up that endocrinologist I saw last Dec as a prime example
of this: she ignored my horrific symptoms, looked at an
out-of-date lab test, proclaimed it "normal" and told me not
to come back for 6 months. When I pointed out to her that
the labwork was old, she said "Ok, have them draw
another and fax it to me but I don’t need to see you; we’ll
just handle your case over the phone." In other words, she
had no interest in my symptoms or how I felt. She was
interested only in my labwork.
I have had 6 different doctors look only at my labs and
ignore my symptoms. Or they try to blame my symptoms
on lupus or arthritis or anything else they can dream up
even though every one of my problems is clearly a thyroid
deficiency—all because my TSH test came back in
"normal" ranges. Several have refused to do T3 tests so
how they heck do they know if my body is using the
medication at the cellular level? They don’t! I was also told
that I will ALWAYS feel yucky because I have an incurable
disease so I need to just live with it. Well, guess what? I
changed doctors and found someone who would switch
me over to Armour (which contains ALL the hormones my
gland would make if it could). And you know what? I no
longer have all those horrific problems that the other
doctors said I would just have to learn to live with.
Another problem that we seem to have is those "normal"
ranges. First of all, the TSH "normal" range is typically 0.5
to 5. For many doctors, once they get you into that range
they quit treating you no matter how awful your symptoms
are. Well, the American Association of Clinical
Endocrinologists recently announced that they think a TSH
above 3 is a matter of concern. Think of all those poor
women who’ve had a TSH of 3.5 or 4 and been sent home
as hypochondriacs during the last 30 years….
The second thing to consider about these "normal" ranges
is that what feels good for Janey may feel awful to Susie.
These doctors are working from the standpoint that once
your blood test comes back showing that your TSH, T3,
and T4 numbers are falling anywhere within the reference
range, you are ok. Well guess what? Perhaps Janey feels
really good when her T3 levels are at 1.98, but Susie feels
as though she is dying. Susie needs her personal T3 levels
to be at 2.9 before she is healthy and functioning normally.
Those reference ranges should not be used as a
treatment protocol! They are there simply to give the
doctor a rough idea of why you might not be feeling well. If
you feel horrible and are depressed and your brain is in a
fog and your tongue isn’t working and your T3 levels are
right at the very bottom level of the reference range, the
doctor should NOT look at the lab test and say "Oh gee
Susie, that is still within the normal parameters so go
home and deal with it---have some Prozac." No, he should
look at that lab test and say "gee whiz Susie! No wonder
you feel so bad! Your T3 levels are at the rock bottom
edge of our reference range! Obviously you need more T3
and would probably do much better if YOUR T3 levels
were higher."
You see, those reference ranges don’t mean that an
individual will feel wonderful any time her bloodwork shows
that she is anywhere within that range. Those reference
ranges mean that some people have good health at the
lower end of the range while others have good health at
the higher end of the range and so typically your average
person is going to fall somewhere in between these two
numbers. Once the doctor draws the blood he must then
go on to judge that patient as an individual; if she is
somewhere within that range it doesn’t mean she is cured.
It just means that she is getting closer to the serum level
which will make her feel her best.
There is also a belief among today’s doctors that a person
with thyroid disease is meant to always have unalleviated
symptoms of her disease. Doctors did not use to believe
that. 50 years ago when they gave patients desiccated
thyroid, doses based solely on how the patient felt,
doctors were so happy to see the patients feeling good
again with all their symptoms cleared up (I own some
medical textbooks from back then and that is what they
say in the sections on thyroid disease). But today, doctors
ignore the patients’ symptoms and rely strictly on
bloodwork. They quit helping the patient as soon as her
bloodwork falls somewhere in the "normal" range no
matter how bad she feels.
In addition, today’s crop of doctors has been told to treat
patients only with Synthroid rather than with natural
thyroid. For 30 years now, patients have been taking pure
T4, their bodies deprived of the other 8 thyroid hormones
a healthy gland makes. These people then go on to live
with hypothyroid symptoms for the rest of their lives
because they are lacking in T0, T1, T2, and T3. So it has
become a part of our medical lore that "thyroid patients
never feel good!" When really it does not have to be that
way. I am proof; I am now taking a preparation which
contains all 9 thyroid hormones my body would make if it
could, and my symptoms are gone! Am I unusual? No,
before the invention and marketing of Synthroid, all women
were given those 9 hormones and they felt great.
Chronic Fatigue Syndrome and Fibromyalgia are two
diseases which are new. Funnily enough, they came onto
the scene right after Synthroid and the TSH test went into
widespread use. Most people with fibromyalgia and CFS
have hypothyroidism. Joint aches and fatigue are two of
the most common hypothyroid symptoms. A few doctors
are now examining this situation and have CURED their
patients’ fibromyalgia and CFS by administering T3. Don’t
forget that since the invention of the TSH test, doctors are
giving the patients just enough medication to lower TSH to
less than 5, leaving them undertreated. And remember, T3
is not present in Synthroid.... The combination of these
two truths is what has created the diseases fibromyalgia
and CFS.
Your show reaches so many people. Hypothyroidism is a
deadly disease. It will kill you. It must be treated. Yet
millions of women are undiagnosed. Millions of others have
been brushed off, the way I was in 1995 just because I’d
had a baby. Millions of others have had TSH tests showing
a 3.5 or 4 or 4.5 and were sent home with the words "Oh,
that’s normal so there’s nothing wrong with you." Millions
of others are taking synthroid and are being put on anti-
depressants because their bodies are deprived of T3,
even though scientific research has shown that T3 will cure
their depression. And millions of others are living half-lives;
they are being treated for their hypothyroidism but they
are being given just barely enough medication to keep
them alive—but not enough to alleviate their symptoms.
What’s wrong with that, you ask? This is not just a quality
of life issue. It’s not just about wishing your hair would quit
falling out. Hypothyroidism results in heart disease,
diabetes, Carpal tunnel syndrome, tendonitis, fibromyalgia,
chronic fatigue syndrome, PMS, infertility, dangerously
high cholesterol, severe depression (including suicidal
thoughts), obesity, heart failure, stroke, and death. So you
see, this is a life-or-death matter. Patients who are being
treated for thyroid disease but who still have symptoms
are UNDERtreated. Their cholesterol levels are still
building up, their blood is clotting too easily, their
pancreases do not work properly, etc. You see, it’s not
just about whether my hair and skin looks good.
Undertreated hypothyroidism is ravaging my insides too.
My organs and glands—every cell in my body—are crying
out for the correct hormones and proper levels. I am at
risk for an early death.
And it’s criminal. It doesn’t have to be this way. The
doctors of the past didn’t treat their patients like this!
There is no reason at all not to give me the proper levels
of thyroid hormones. If I still have symptoms, change my
medication until we get it right! But that’s not what’s
happening in our medical system today. No, our doctors
are just reading a lab test, ignoring physical symptoms
and relying strictly on a single blood test (TSH) which
several doctors are now suggesting has no basis at all in
clinical reality. My endocrinologist is the poster child for
this one, folks! She even said she’d treat me over the
phone based on whatever lab results got faxed over to her!
So, should we just be left half-alive, our bodies slowly
dying from thyroid deficiency, leaving us with diabetes and
heart disease? Or should our doctors look past the
bloodwork and recognize that we are all individuals? We
each have a thyroid level which is right for us personally,
and what is right for me is not necessarily what is right for
you.
And that goes for medication too. When synthroid doesn’t
work, perhaps the doctor should quit blaming the patient
and instead change her medication! What a concept.
Oprah, I think you should do a show on this topic. You
could save millions of lives.
Thanks for your time.
Gail
PS All of those symptoms I described to you that I have
experienced over the years are classic hypothyroid
symptoms, including the anemia.... I didn’t know that at the
time, but have learned about it since then in my research
over the last year.
