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From:
Mary Carol Koester <[log in to unmask]>
Date:
Sat, 12 May 2001 11:43:03 EDT
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<<Disclaimer: Verify this information before applying it to your situation.>>

The responses indicate to me that everyone is having to deal with this
individually and  the doctor response is similar to that of getting a dx for
CD.  Listed below are personal experiences and sites I received to review
info on thyroid.  I wonder with the incidence of thyroid disease with CD if
the national groups might be willing to get involved in developing an info
sheet to be presented to doctors.  Because the thyroiditis can be
undetectable through normal thyroid panels, many are going undiagnosed and
are suffering.  Mary Carol

Check out Delphi.com and once you've joined, look up thyroid.

I've seen good information on the yahoo medical link on various diseases.

I've been taking Synthroid for many, many years and have had to have the
dosage raised many times.  I'm now on .175 mg and started out on .05.  I have
very good energy and no hair loss so it's doing it's job.  Sounds like you
just need your dosage raised.

Get a new doctor!  My doc always checks tsh, free t4 and t3.  He
believes the normal" range is really .9 to 1.7 for tsh - very different
from the conventional numbers.  Prior to seeing him I did have hair
loss, fatigue and memory problems.  The goal for me is to be in the good
range continuously.  I haven't achieved it yet and have begun taking the
dose 1/2 in the am and 1/2 in the pm to improve the absorption of the
synthroid.  Also he only lets me take brand synthroid not generic.

I am trying to understand the connection between the CD,thyroid and iodine.
Everything I am reading says iodine is important for thyroid function.

Would suggesting reading Dr. Jacob Teitelbaum's book, "From Fatigued to
Fantastic." It has extensive information in it about thryoid testing, chronic
fatigue and fibromyalgia. If I hadn't found my current physician, I'd still
be feeling rotten. She used Teitelbaum's yardstick to determine if I had low
thyroid, not the western world's yardstick which is often inappropriate for
people like us.Also, you may want to try a different thyroid medication,
something dessicated as opposed to synthetic. When I was on synthroid, my
hair fell out more, and hair loss is a side effect of synthroid.

I also have CD and was diagnosed with Hashimotos thyroiditis back in
1986.  I nearly lost all my hair.  The doctor  I found who treated my
condition successfully was Dr. Leslie Degroot at the University of
Chicago Hospital.  I had to travel to see him but it was worth it.  I
remember him paying close attention to the TSH and it was important to
get a complete T 4 profile. After he had me on the right dosage, my hair
grew back in about six months. It took about 1 1/2 years to stabilize
and I have been on the same dose of thyroid hormone replacement since
1988.  He kept measuring the complete T 4  profile, not just a screening T 4.

Gluten may induce endocrine autoantibodies in adolescent celiac patients
Italian researchers have found that adolescent patients with celiac
disease have elevated levels of anti-thyroid and anti-pancreatic
autoantibodies.  Find the article on Medscape at:
http://gastroenterology.medscape.com/26172.rhtml

The Thyroid Sourcebook (from local library or bookstore)

You are correct -- TSH, T3 and T4 can ALL be normal and you can still
have Hashimotos thyroiditis (antibodies that destroy the thyroid gland).

when I had your symptoms my primary care doc (later congratulated by the
endocrinologist @ the VA) decreased my synthroid from .150 to .100 (150 mcg
down to 100 mcg), and added Cytomel .25 (25 mcg).  The improvement was quite
dramatic.  Whatever Synthroid is, T3 or T4, Cytomel is the other one, so they
complement each other.

Check thyroid.about.com for more than you could ever want to know on thyroid
disorders.  The site talks about alternative treatments, lists top doctors in
the nation by state, and explains why synthroid alone doesn't work.

the best book on Thyroid disease is by Dr. Ridha Arem: The Thyroid Solution
: A Mind-Body Program for Beating Depression and Regaining Your Emotional
and Physical Health.

I have long suspected that I have some sort of problem with my thyroid,
but my TSH, T3, T4 tests on my annual physical do not show a
problem...they are on the low side, but still within the "normal" range.
I have been losing my hair over the last few years...have already picked
out a wig, just in case!  They have also discovered that I am losing a
lot of calcium in my urine...also a symptom of a thyroid problem...and a
real problem for me because of my osteoporosis.

Thanks everyone for your help.  Mary Carol

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