Hi, All,
Since I can't seem to find a doctor in the entire city of Houston, Texas
who will LISTEN to me, I thought I'd throw this out for comments or
ideas. I apologize in advance for the length. I'm a 40-year-old woman,
diagnosed with sub-acute thyroiditis in March 1995, though it
necessitated me going through five doctors and over six weeks to finally
get that diagnosis.
Looking back on the months before things "blew up" I now realize the
first indication there was a problem was a tight feeling in the front of
my neck. All through that winter I just thought the neckbands on all my
sweatshirts (which I wear to work in cold weather) had shrunk because I
was continuously tugging at the front of my shirts. I couldn't tolerate
anything touching my throat, and that symptom still bothers me now.
I was working at home one Sunday afternoon in January 1995 when I was
suddenly stricken with the feeling that I couldn't swallow. My throat
wasn't sore; it just felt as if the muscles used in swallowing wouldn't
work. When I tried to eat I discovered I couldn't swallow food. I
could swallow small sips of water if I concentrated hard enough. And I
could breathe okay, so I didn't seek medical assistance that day.
I was better the next morning, though the tight feeling was still there,
but I could swallow. I didn't really think any more about it until 11
days later when I was driving home from work one afternoon. I suddenly
felt as if my swallowing muscles were paralyzed again. When I got home
I found I couldn't swallow food, and even swallowing water was more
difficult than the first time. I was no better the next morning, a
Friday, so I got in to see my regular doctor, an internist. He examined
me and said he didn't know what the problem could be unless it was an
obstruction somewhere. I was beginning to suspect a thyroid problem
in part because of my family history of thyroid problems. He said it
definitely wasn't my thyroid, declined to order any labwork, and
suggested I see an ENT doctor.
Over the weekend both sides of the front of my neck began to swell. By
this time I felt certain it was my thyroid. I called his office Monday
morning and requested he order some thyroid tests. He agreed to order
the tests, but he didn't see me that day. The nurse drew my blood for
the tests, and even she was alarmed that my neck was so swollen. My lab
tests came back fairly normal with a T4 of 11.0 (NR 4.5-10.9), T3 uptake
of 24 (NR 22-37), and a TSH of 1.02. Nothing remarkable there except
that I felt a lot more hypo than hyper.
Thinking it was probably a thyroid problem I figured an endocrinologist
would be the doctor of choice, and not knowing of a good one firsthand,
I started going through the phone book. They were all booked up for
several weeks to several months. My parents suggested I try to get in
to see their regular doctor, an internist and gastroenterologist. I was
able to get right in to see him. After asking me a few questions and
performing a routine exam, he sat back in his chair, grinning, and
asked, "Are you familiar with the term 'globus hystericus?'" I knew
just enough Latin to figure out what he was driving at. ("It's all in
your head.") He refused to order any lab tests but did offer to shove a
tube down my throat to see if there was any blockage in my esophagus. I
declined the offer.
After two weeks I was able to get an appointment with an endocrinologist
who had had a cancellation. There was a resident working with him who
examined me first. He said there was "something" wrong, but he didn't
know what. Then the endo, an older man, came in. After asking me a few
questions and performing a very brief exam, he stated, "What would you
say if I told you that you're a perfectly healthy young woman? There's
absolutely nothing wrong with you." He walked out of the room without
waiting for my answer or saying another word, leaving the resident and
me staring at each other in disbelief. The resident apologized for his
colleague's rude behavior and suggested I see another endo.
I was so angry at that point I decided to take my internist's advice and
see an ENT doctor. I already knew a good one whom I had gone to several
years before. So I went to see him the next day and after examining me
a few minutes he stated, "I think it's your thyroid." Duh! He ordered
a thyroid scan and uptake and an ultrasound. The scan showed diffuse
uptake indicating thyroiditis. The 4-hour uptake was was 1.6% with
normal being 5-15%. The 24 hour uptake was 2.3% with a NR of 10-25%.
The ultrasound showed moderate enlargement of the thyroid but no mass or
any other abnormality. When I went back to the ENT doc he said that it
was definitely thyroiditis but that he didn't treat that sort of thing
and wanted me to see an endocrinologist. I told him of my last
experience with one just the day before, so he said he wanted me to see
the one his wife goes to.
So they made the appointment and I showed up at this endocrinologist's
office on the appointed day at 2:00pm for my 2:10pm appointment,
prepared to fill out the obligatory paperwork. They had a large sign
stating payment is required at the time of service. (I think that's
pretty plain.) At 3:15 they finally took me back to an exam room. I
waited and waited and waited, listening to the doctor come and go into
and out of the rooms to either side of me.
Finally at 4:30 I went out to try to find somebody. It seems they had
called my insurance company to check on my benefits. My insurance
company at that time wouldn't verify benefits by phone. They insisted
that a doctor's office FAX a request to them, and they would answer by
FAX sometime that day. And that's what these knotheads were waiting on
before the doctor would even see me! When I told them I was going to
pay for the visit myself (as the sign stated I must), they asked why I
had put my insurance info down on their paperwork. Doctor's offices
always ask for your insurance info. And their's was no exception. I
put it down, you idiots, BECAUSE YOU ASKED FOR IT!
With that little piece of business cleared up, the doctor finally walked
into the room at 4:45. First I let him have it with both barrels for
the way his staff had treated me and told him it would be nice if he was
half as concerned about ME as he was about measuring my wallet. (A few
years ago I wouldn't have made a big deal out of it, but I've reached
the point where I just won't take any more "stuff" off doctors or their
staffs.) He offered a weak apology and asked me a few questions, mostly
about stress in my life (of iatrogenic origin usually!), leaving the
room twice when somebody interrupted him, then got up to leave after a
total of perhaps seven minutes without even examining me. I'm sure he
was thinking IAIYH. I asked him if he was going to examine me, so he
half-heartedly felt around on my neck a little, not even hitting the
sore areas. He didn't dispute the scan results but offered no
treatment. He did order a set of basic tests (T4, T3, TSH).
It was near the end of March by now, two months after my problem had
begun. The next set of lab tests showed a T4 of 13.1, T3 uptake of 28,
and TSH of <0.1. The pain and swelling in my neck was still very
bothersome, and I finally asked my internist to prescribe a short course
of steroids. He prescribed prednisolone for six days, and after just
two days I was feeling better. I had to take two more rounds of it over
the next few weeks whenever the pain would return, but the symptoms
finally improved, and the lab values reverted back to my usual levels.
So it took me FIVE doctors and over $1000 in tests (not covered by
insurance) to get a diagnosis and a prescription for $5 worth of pills.
The only residual problems I've had, in addition to the increased
sensitivity in my neck, are some difficulty swallowing soft foods such
as pasta and some slight swelling. Sometimes it still feels like my
swallowing muscles just freeze up. Which brings me to the present.
I've recently been diagnosed (and as with the thyroiditis, I diagnosed
myself and found a doctor who would concur) with fibromyalgia and
myofascial pain syndrome. I hate to say this, but I think I'm the best
doctor I know, too! And I'm not even a doctor.
The symptoms of fibromyalgia and hypothyroidism are nearly identical.
I'm sure some of you are familiar with the research of Dr. John Lowe, a
chiropractor in Houston, who has hypothesized that up to 50% of all
cases of fibromyalgia are actually just untreated or undertreated
hypothyroidism. (Read the messages on the fibromyalgia newsgroup at
alt.med.fibromyalgia sometime. Many of them sound just like the people
in this group.) His research has shown this in several double-blind
studies, and he has many patients who've achieved lasting relief from
their fibromyalgia symptoms by following his protocol. His treatment
involves giving large doses of Cytomel (T3) even in the absence of
abnormal standard thyroid function tests. Of course he starts patients
out with small doses and monitors them for overstimulation, but in most
cases overstimulation has not been a side effect. It would seem to me
that this indicates that the patients really needed the replacement
thyroid medication. Overstimulation usually occurs only when you're
getting more than your body needs.
It is not my intent to argue the merits of Dr. Lowe's theories in this
space. It's something I happen to think makes a lot of sense for me,
but it's something each person must research and decide for himself. I
have some info on his protocol, and I've been trying to find a doctor
(endo or otherwise) who would read and at least consider his findings.
I haven't found one M.D. who has been willing to even discuss Dr. Lowe's
work, much less read anything on it.
Three weeks ago I made an appointment to see an endocrinologist who is
supposed to be somewhat of a thyroid expert. He's an older man, about
75, and it's frustrating to try to communicate with him because he's
hard of hearing and seems to suffer from short-term memory loss because
he'll ask you the same questions over and over during the same visit.
Even though he took a very long and detailed history and physical, when
I read the transcription of it, about half of it was wrong, and some of
it was VERY wrong. During the physical exam, my neck had some very
tender places, and he said I have a goiter. That was before the test
results came back, and he stated he was going to put me on some type of
replacement therapy regardless of what the tests showed.
The tests came back, and I have a T4 of 11.5, total T3 of 120, TSH of
1.2, FT4I of 1.09 (NR 0.69-1.38), TPO (microsomal) antibodies were 2,
and antithyroglobulin antibodies were <5. If anything I should be
borderline hyperthyroid, but clinically I'm the picture of hypo. This
endo stated he goes more by the clinical presentation of the patient.
He prescribed 100mcg a day of Synthroid. I began taking it 13 days ago,
and at first things were fine. On the third day I had a rapid heart
beat which was easily taken care of by one 10mg Inderal. I had
developed a mild headache by the 4th day, and on the 6th day I began to
experience the "straight gut syndrome." (I'll leave that one up to your
imagination.) I broke out in an itchy rash on the insides of my
forearms and of all places, on my kneecaps! I left the Synthroid off
beginning last Monday, and most of those symptoms have started to let
up. I called his office Thursday, and he said those symptoms couldn't
possibility be from the Synthroid -- not that they weren't likely, but
that it was IMPOSSIBLE for them to be from the Synthroid. That was the
last straw. He put down sub-acute thyroiditis as the diagnosis, but he
doesn't seem too sure of that. It is my understanding that sub-acute
thyroiditis runs its course in no more than a few months. It's been
over two years since I was first diagnosed. He refuses to even consider
letting me try Armour, Thyrolar, or Cytomel.
Now I'm experiencing the same heavy, swollen feeling in the front of my
neck that I had over two years ago when the thyroiditis began. Does
anybody else get that feeling? I would describe it as feeling as if
there are two flat balloons, one on each side of the front of my neck,
each a little smaller than a deck of cards, which are pumped full of
air. It's just an intense pressure that feels as if it's squeezing my
throat and swallowing muscles. It's becoming more difficult for me to
swallow. My appetite is completely shot. It takes such effort to eat
and concentrate on swallowing that it exhausts me to even try. My mouth
stays dry, and this makes swallowing even harder. Even after leaving
the Synthroid off for six days now, I still feel nauseated and have a
mild headache.
I'm near the end of my rope with this thing. There's only one doctor in
the country who has been fully trained in the application of Dr. Lowe's
protocol, Dr. Gina Honeyman, a chiropractor in Tulsa, Oklahoma. I know
it sounds ridiculous for a chiropractor to be treating thyroid problems,
but just out of curiosity I called her office Thursday, and she answered
the phone. We talked for about 45 minutes, and I'm impressed. (I don't
impress easily, either.) She is more knowledgeable about thyroid
function and problems than any M.D. I've met. Since chiropractors can't
prescribe drugs, she and Dr. Lowe work with several M.D.'s around the
country, one of whom is in Houston. In fact most of Dr. Lowe's research
team is comprised of M.D.'s. Dr. Honeyman told me she treats patients
from all over the country. Apparently you have to go to Tulsa once.
Then the M.D. in your area follows your progress, prescribes the
medications in the doses she recommends, and communicates with her as
well.
I at first balked at the idea of having to travel over 500 miles to find
a doctor, a chiropractor at that, to treat a thyroid problem. But I've
reconsidered, and I've decided I may have to travel to see her because I
can't find an M.D. here who'll listen. This isn't a decision I've
arrived at easily. I've read Dr. Lowe's studies, and I'm impressed.
When someone in the fibromyalgia newsgroup decided to check up on him,
she was told by an M.D. in the Baylor Medical School group that Dr. Lowe
has "scooped the medical community." I think the main reason M.D.'s
don't want to consider it is that they're jealous. Last month my
internist, when I took a few pages about it for him to read, without
even reading a word of it stated, "This is a bunch of b-llsh-t. There's
no way a chiropractor could know anything about thyroid problems." This
from the mouth of the same guy who stated that the TSH is the ONLY
definitive test of thyroid function and that all the other tests are a
waste of time. He said my last TSH (done in July of 1995) was "normal"
and that since it was normal there is nothing wrong with my thyroid. He
refused to order any tests but a TSH, but I declined even that telling
him I'd find someone with a more open mind, and oh yeah... I fired him
on the spot.
So has anyone had similar symptoms and/or had as much difficulty finding
a decent doctor as I? I was diagnosed with sub-acute thyroiditis two
years ago based on a scan and uptake. No doctor really seemed sure of
the diagnosis. I don't understand how they distinguish a sub-acute
thyroiditis from Hashimoto's. I wasn't sick with a sore throat or upper
respiratory problem any time in the year before that. I did develop a
strep throat soon after that diagnosis in late March, though. It was
treated with antibiotics early on. My lab tests are consistent over the
years with high normal T4's, low T3 uptakes, and low normal TSH values,
but clinically I've always been hypothyroid.
In Dr. Lowe's hypothesis, the tissues actually become resistant to the
effects of T3, so you may have adequate, or even high, levels of T4 and
T3. Even though the levels of thyroid hormones in the blood will appear
to be normal, the tissues are not utilizing the T3, and so the net
result will be that the patient is hypothyroid. Dr. Honeyman summed it
up in one sentence:
"Doctors are treating a tube of blood, not the patient!"
Maybe that's why half of the doctors I saw didn't even perform a
physical exam. They're only looking at the numbers. But if the tissues
are resistant, and the pituitary is functioning properly, the TSH level
will be low. Or if there is a pituitary or hypothalamic problem, the
TSH will also be low. Why won't any doctor I've heard of (other than
chiropractors Lowe and Honeyman, and a scant few M.D.'s scattered around
the world) consider these other possibilities? And why do nearly all
doctors, when they reach for a prescription pad, prescribe nothing but
Synthroid? Is it any wonder that Synthroid is the third most-prescribed
drug in the US?
I'm sorry to have dragged this on for so long, but I know I'm not alone
in my quest for a good doctor and in my frustration at all the "duds"
I've gone through so far. And sometimes you just gotta vent! Feel free
to e-mail me privately with your own personal war stories. I would be
particularly interested in hearing from anyone else who was diagnosed
with sub-acute thyroiditis. I'd like to compare notes. What were your
symptoms, how was it diagnosed, how was it treated, and how long did it
take to run its course? I'm not convinced that is my (only) problem,
even though most of my symptoms fit. Has anyone else had hypothyroid
symptoms and seemingly conflicting lab results? And if you did, were
you able to find a doctor who would treat you?
I need a good doctor who is willing to get to the bottom of all this and
make an accurate, confident diagnosis. There's always the possibility
that one can have more than one thyroid condition. If anyone is aware
of a good doctor in Houston, Texas, please let me know! (My mother, who
has her own thyroid problems, went to a doctor with the initials SR in
Houston a few years ago. Please do not recommend that doctor.)
Dale
|