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“I had the exact same problem as you, with undiagnosed hypothyroidism for 12
years, during which I gained 25 pounds, gorged on food, was out of breath,
and exhausted and cranky most of the time. My TSH was 4.95 and my doctor
said it was within normal range. I did a whole bunch of reseach and
discovered that a person feels healthy when their TSH is between 0 and 1. I
then went to a very good naturopath, who finally diagnosed me with
hypothyroidism and put me on Armour Thyroid. I started feeling better within
a week. Things started to adjust within 3 months, with my Armour dose going
up a bit. I started feeling full after eating a normal amount of food, so
didn't have to eat so much, got my energy back, started sleeping better.
It's been almost two years now; I lost all the weight and I feel fabulous -
20 years younger. Needless to say, I switched to a different primary care
doctor, a woman, who is sensitive to my needs. I still go to my naturopath
to keep my thyroid on track. My naturopath, by the way, used to be an MD at
the top research hospital, but she went back to Naturopathic college and got
re-trained. I highly recommend finding a good naturopath (it helps if they
used to be an MD), or maybe an open-minded endocrinologist. There are lots
of books/resources on thyroid that you can find that tell you about the
normal levels of TSH. Here is a link to one:
www.aace.com/pub/tam2003/press.php”
“I have a low level Hypothyroidism. My doctor tested me a few years ago. I
have been taking Synthroid (or Levothroid) for 2 years now and feel much
better. I was suffering from different symptoms: heart flutters, inability
to lose a few pounds, and I would get very irritable. I was having problems
sleeping. All these troubles are gone now. My primary care physician is the
one who came up with this and had no problem putting me on meds (they are
GF). I am not one to take medications, but this one really does the trick.
When I was diagnosed with thyroid problems, I was 39 and had been strictly
gluten free for over 7 years.”
“The story of my journey is very similiar to yours. When I finally asked the
doctor for thyroid hormone therapy, I was at 9, so there was less arguement,
however, this was just before the announcement of the new levels, and I
found out that most doctors did not even treat at 9. I was prepared to
argue, but once I asked, the doctor said yes, and ended up making it sound
like her own idea. I've learned that I don't need to argue at all. Discuss,
and it seems most doctors don't want to lose your business, so they'll do
what you ask. I liked the internist better than the endocrinologist I saw
later; he was hardly informed of the latest.”
“I had "subclinical" hypothyroidism. The endocrinologist I initially used
was close-mouthed and never consulted me about his opinions, nor did he
include me in decisions. My TSH (Thyroid Stimulating Hormone) had always
been non-existent, my T3 & T4 very high, so when I dropped to very-low norms
and my TSH was still low, he refused to give me anything - without asking me
if this was normal for me. I don't know if they explained the interactions
of the hormones to you, but the high TSH means you brain is working to force
your thyroid to wake up, so mine being low meant they were ignoring the low
readings of thyroid hormones, T3 & T4 (sounds like a Schwarzenegger movie!)
After months of this I pressured him into repeating the tests; a tweak below
lab normal range. He gave me .100 of Synthroid, but refused to re-test or
raise the dose..... we parted ways, I went to somedone else. He was
minimally better, though he did accept that I felt better on .150 Synthroid,
with labs in the 60% range of normal. But he, in his supreme arrogance,
thought EVERY female patient between 6 and 96 was hot for his (admittedly,
gorgeous) body. Very nice gray eyes, but only to look at. Like, "sorry
fella, you're married"! Anyway, that became tiring, and he REFUSED to test
me for CD, so after five or six years of hum-drum twice a year,
nothing-is-changing- and-I'm-still-pooped visits I mentioned it to my
Primary Care Physician. He said he'd had good luck with a Synthroid and
Cytomel combination, so he decreased my Synthroid from .150 to .100, adding
.25 of Cytomel. MUCH better! So I never made an endocrine doctor appointment
again. Flash forward a few years. Through an odd set of circumstances I
ended up at the VA (Veterans Administration) hospital for a mistaken
appointment a few days after knee surgery that went BAD. It was during a
blizzard, the place had emptied out, and the only MD in the hospital was
Beatriz Tendler, a professor of endocrinology at UCONN Health Center, doing
her patriotic thing. She stuck me in the hospitsl to treat the compartment
syndrome, tried to figure out why I was bleeding into my leg, diagnosed the
Celiac Disease, treated my compartment syndrome the European way (USA: cut
it open. The rest of the world: monitor, treat symptoms.), and I became, by
default & history, her thyroid patient! She's awesome. I'm still on the same
dose of both meds. Endocrine doctors SHOULD be fascinated by the CD, too.
She is.”
“I am hypothyroid, subclinical. My TSH is normally at about .1, and that is
optimal for me. I am taking .88 mcg of Synthroid every day. My history is
complicated - at one time I had a "hot" nodule and was hyper-thyroid, which
caused panic attacks, weight loss and sent me into the psych. hospital from
anxiety. I was not given any treatment then, because the endocrinologist
wanted to see if that nodule would burn itself out. It must have, because
over time, I started to gain weight, feel sluggish, etc. I finally noticed
that I had a large lump in my throat, went to the endo. again, and he
recommended surgery. Had 1/2 my thyroid removed and endo. said we could
wait for supplements until the other half got too tired to make hormones. I
got worse over time, but TSH stayed within normal ranges. My hair was
falling out by the handfuls, always cold, went menopausal at age 40,
depressed, no energy. It took a LOT of pushing but the endo. finally did a
TRH test (pre-cursor to TSH, takes about an hour in the office) and
diagnosed me with subclinical hypo. I have to tell all other doctors NOT to
run the TSH as they will freak out when they see my number is so low, but
it's all under treatment. And now that I've been taking thyroid medication
AND am post-menopausal, I have osteoporosis (I'm not celiac, my son is).”
“I would like to addres your question regarding hypothyroidism. I have
Graves Disease (hyperthyroidism) but dut to treatment (both RAI and
surgery), I am now hypothyroid with no thyroid tissue left. I have found
that both my PCP and my endo believe the patient knows best how they feel
and I try to keep my level around 2.5 or so. My fatigue has greatly lifted
and my TSH is much more consistent since my hysterectomy 4/2002. I am 55
and needed the surgery but I always felt that my female hormone levels were
messing up the thyroid hormones. I take no HRT and have felt better in the
past 2 years than I had since about 45 years of age. I was tested for
celiac disease in 2000 but my blood work was negative at that time; I have
issues with multiple allergies - many foods – and a skin issue which has
been biopsied and the result was an allergic reaction to an unknown. I went
gluten free with my daughter in mid January as I have tested allergic to the
grains, dairy, casein, many fruits, vege's, eggs, soy, etc. The only + for
me so far as been no acid reflux or need for Pepcid AC. Last summer I was
diagnosed glucose intolerant but reversed that by diet and exercise but have
gained about 4 pounds since going gluten free. My BMI is still below 25.”
“About six weeks ago, after feeling progressively worse over the last five
years, I finally got a diagnosis of Celiac Disease. I am also allergic to
all dairy, eggs, some nuts, and some beans. Plus I have mild
hypothyroidism. My TSH level is only 2.87 but I'm tired all day except for
about three hours after I wake up in the morning. I usually have to take a
two hour nap in the afternoon. I get so tired I literally feel like I'll
fall over dead if I don't lay my head down. I can't imagine how terrible
your tiredness must be with such a high TSH. Fortunately, I have a
wonderful doctor who understands about subclinical hypothyroidism. He put
me on natural T3 but it gave me migraines so I have an appointment in a few
days to discuss trying something else, perhaps Synthroid which all the
females in my family are on. He recommended a book, Thyroid Power, which I
read and which you might find interesting. The book is a little extreme,
it attributes just about every health problem under the sun to thyroid
issues, but it is nevertheless an informative book. The main point is that
the "acceptable" TSH range is too broad, and the need for treatment should
be based on an individual's symptoms which you clearly have. Even mildly
progressive doctors now think 2.5 should be the upper limit for TSH. The
book also has hints for convincing your doctor to treat your
hypothyroidism. “
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