<<Disclaimer: Verify this information before applying it to your situation.>>
I attended the NIH Conference on Celiac Disease in Bethesday in 2004 and I
would love to talk to someone from GIG or the American Celiac Disease
Alliance or one of the doctors who helped get us there. I am volunteering
for an international grassroots organization called ThyroidChange.com; we
want to change the way doctors treat thyroid patients and hope that you can
lend us your expertise.
Many people with celiac disease also have thyroid issues, in fact, it's the
most common other autoimmune problem that patients will have. However, just
as we were under-served as celiacs before the new guidelines were issued in
2004, we're still often quite under-served as thyroid patients.
There is wide disparity in how celiac disease is diagnosed and treated and
a dearth of knowledge and curiosity among our medical professionals about
current research. This leaves too many of us sick and greatly lessens our
functionality and productivity. In addition, our pocketbooks are affected
because we are prescribed antidepressants, muscle relaxers, sleep aids,
cholesterol drugs, anti-anxiety medication, and IBS remedies when what we
really need is access to the very inexpensive thyroid medication that can
bring us back our lives.
Although there is a lot of evidence that current testing standards are
inadequate, this year the American Association of Clinical Endocrinologists
once again refused to update standards to reflect current research. Most
clinical practitioners rely heavily on the TSH test when the Free T3 test
and antibody tests will render vital information. Large-scale tests are
needed to reaffirm what the many smaller tests are pointing toward; that we
need to be treated as individuals, by symptoms, not as test scores.
Like celiac disease, autoimmune thyroid disease most often affects women.
Quite a large percentage of us are left feeling exhausted and in pain.
Often people with undiagnosed or poorly treated thyroid issues are
misdiagnosed as bipolar. We may also deal with severe insomnia, hair loss,
social anxiety and depression. This is because our cells don't have access
to enough of the active form of thyroid hormone that we need (T3). Although
research indicates that people need both T3 and T4, most treatment plans
only offer the T4 form (such as Synthroid and Levoxyl) and too many
patients aren't able to properly convert it to the more active form, T3.
Every cell in the body requires thyroid hormone; it's no wonder that
thyroid disease is devastating to so many body systems.
Patients are labeled as just being anxious when they complain about the
deep fatigue, weight gain and psychological issues that can be remedied by
proper treatment. They are told that because their numbers are within the
normal range that their thyroid disease is not at the root of their
problems. Those of us who scratch below the surface have found that the
method that set the ranges in the first place was woefully inadequate and
based on poor science.
Please visit www.thyroidchange.com and sign the petition demanding better
care. We have a page for clinical studies and research papers for those who
would like to explore this topic.
Like us and join us on Facebook. Here is our community
page<https://www.facebook.com/ThyroidChange?ref=ts&fref=ts>for news
about our efforts and news about thyroid disease.
Click this <https://www.facebook.com/groups/thyroidchange/?ref=ts&fref=ts>for
the closed group for members who want to talk privately (out of
earshot
of Facebook friends) about their medical issues.
Again, we appreciate any help we can get in getting this started. We have
made a lot of progress in the last year in getting the word out and have
amassed significant support among renown endocrinologists who are willing
to buck the system in order to enact the change we need. Join us.
KitinSTlouis
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