MY LETTER TO THE GOVERNMENT

Hello Ms. Sebelius, Madam Secretary of the U.S. Department of Health & Human Services.


Protecting the health of Americans while providing them essential human services, must be a daunting task. So thanks for taking a minute of your time to read what follows:

For the past five years, I too have had a daunting task…trying to fight to feel well! I have been diagnosed with an autoimmune disease called Graves’ disease. Suffering from ANY autoimmune disease by itself is a tribulation; there is no cure, no one knows how it is acquired and there is much debate on the course of treatment. By adding a thyroid disorder to the mix you have a case of millions of Americans chronically sick, fighting to get better treatment.

The thyroid controls just about every cell in the body, when this gland goes off kilter, so does just about everything else. When the “everything else” in the body is not addressed it is very difficult to function. It is not addressed mainly because- MD’s don’t know how to address all the ailments associated with thyroid disease (I blame this on the various MD specialties at the present time) And/or the insurance companies are dictating to the MD’s that only treatment for the thyroid gland itself should be addressed when it comes to patient care. Here is a perfect example of what I am referring to:

A. After years with my Endocrinologist…I am still not feeling well so then I decide to…
B. Call my family doctor and have him run some other blood tests-just for my own peace of mind if nothing else. I told him I wanted my hormones checked, an antibody test, pituitary and adrenals
C. My doctor told me he could do the antibody test, but I must ask my OBGYN to do the hormone test…AND then instructed me to…
D. Go back to my Endo for the other tests…My endocrinologist is stuck in some kind of a tunnel because she will not do anything outside of treating my thyroid. UGGGGHHHHH! What is going on with healthcare? Shouldn’t the patient have a say??

It is simple math: Autoimmune disease (No one has a clue) + Thyroid disease (Myriad of untreated ailments) = sick, tired and frustrated patients.

Thousands of thyroid sufferers are forming support groups all over the social networking mediums venting and trying to get answers we desperately need from the medical community. It is so sad. My heart bleeds for them because I am in the same sinking ship.

I am in the process of writing a book (I also write a blog) about this phenomenon. I call this a phenomenon because there are supposedly 50 million AD sufferers(reported by the American Autoimmune Related Disease Association), yet we are all getting vastly different answers to our questions and treatment modalities across the country (even around the world).

The majority of us (medical community, insurance companies, patients and the like) are fuddling around in the dark, and I blame some of this on the government. Here is why:

When I began doing research for my book on AD’s and thyroid conditions (not cancer related this is a different category), I went to the CDC’s website to gain more knowledge on the two. Wow, did I find pretty much nothing! I then e-mailed the CDC and a wonderful gal helped me by sending my question regarding disease stats, prevalence, etc., She e-mailed my question to various survey depts.

When my answer came back, my jaw dropped. They gave me the stats I was looking for based on a question the government sends out every year. Here is the question used for the government’s sampling survey tool for a thyroid condition:

How long have you had a thyroid problem, Grave's disease or gout?

GOUT? What does gout have to do with Graves’ disease or the thyroid?

If this is a survey question that has been sent out by the government over the past ten years, how would this properly represent those with Grave’s disease, Hashimoto’s (another thyroid autoimmune disease) or folks who have gout for that matter?

I can tell you right now and I am no medical expert,but gout and graves disease have no business in the same sentence on a questionnaire.

After getting this news from the CDC, I had an epiphany as to why we as thyroid disease patients feel so mistreated, misinformed and misperceived. Perhaps, it is because we are misrepresented. We are lumped in with gout.

Sigh, I am afraid to admit it, but I bet me and my fellow thyroid ailers are the thyroid disease pioneers of today, someone has to bear the brunt I guess. I am sure there were diabetes’ pioneers and as I am writing this another ugly disease is rearing its ugly head. If so, please do not place it with gout on a survey. I am sure gout people want a question all their own.

Anyway please use this letter as an official plea to change your surveying practices for thyroid disease, get accurate numbers, and give us more information about autoimmune diseases. My hope in reaching out to the government at this level is that the information and education will trickle down to those who need it the most. Just like every pioneer, we have to start somewhere.

Please notify me and let me know how I can help in anyway. I will reach out to you again soon to see what progress has been made if I have not heard from you.

Sincerely

Carol Gray
Thyroid and Autoimmune Disease Advocate

AMERICANS - I urge all of you who are reading this blog please write to our government (Secretary to the Health Human Service E-mail is below). If all of us become thyroid advocates, instead of only a few, perhaps we can band together to get the care we so richly deserve!

Kathleen.Sebelius@hhs.gov

OTHER COUNTRIES– YOU CAN CONTACT THE WORLD HEALTH ORGANIZATION

info@who.int