THYROID ADVOCATES UNITE- Let YOUR voice be heard

Hello and Happy Thyroid Awareness Month!

I hate long blog posts because of my attention deficit; therefore I try to keep mine short….This one isn’t…BUT it is very important. I am asking my fellow thyroidians to take a little bit of your time and go to the facebook pages of the AACE (American Association of Clinical Endocrinologists) and the ATA (American Thyroid Association) let them know how you feel about the current standards for thyroid testing (TSH only).

Here is what other thyroid advocates posted on AACE and ATA’s facebook site:

Michele T Bickford, from Thyroidchange.org - A serum thyrotropin is the single best screening test for primary thyroid dysfunction for the vast majority of outpatient clinical situations. The standard treatment is replacement with L-thyroxine. The decision to treat subclinical hypothyroidism when the serum thyrotropin is less than 10 mIU/L should be tailored to the individual patient."
The above caption has created a culture that believe the TSH reveals all cases of hypothyroidism, and that Synthroid is the cure.
REALITY: My physician will not test my Free T3 even though, my symptoms are no longer alleviated with T4 only
treatment. Why? My TSH is fine. It can't be my thyroid. Thankfully, I did not listen. After a few months on natural thyroid extract, I feel better than I have in 25 years. That is unfair.
PLEASE hear our pleas for revised guidelines.

Paul Robinson, Author of Recovering with T3 - I was diagnosed with hypothyroidism over 25 years ago. I was given thyroxine and after 6-9 months all my blood tests became regarded as being 'normal'. TSH was according to your new guidelines normal. Unfortunately, I still had the majority of the symptoms that I had originally complained of. This continued for 7 years and I lost my career and many other things resulted from this that have been life changing.

Eventually I was given treatment with Liothyronine Sodium (T3) and after much effort and the removal of any thyroxine (T4) from my treatment I became well again.

I have been on Liothyronine (T3) for over 15 years and now have NO FAITH WHATSOEVER in thyroid hormone blood test levels of TSH as any indication of whether someone is suffering from poor thyroid hormone function at a cellular level. I am totally well on this treatment. This non-standard treatment. I have repeatedly retested Thyroxine (T4) and it continues to make me ill within days.

Your guidelines might work for a lot of patients but MANY FALL THROUGH THE CRACKS,.

Your guidelines imprison many endocrinologists and family doctors. You HAVE to provide some guidelines on what to do when these guidelines FAIL. They will FAIL for some thyroid patients. Please do not condemn some people to permanent illness and a changed life as a result of not dealing with this issue thoroughly.

Many of us - MANY - would be willing to work closely with you to find a fundamental process change that would deal with the people who fall through the cracks. I would for one.

Please .... please consider this and the other testimonies here. We are not psychologically imbalanced. We have just seen the process of falling through the cracks first hand and know what it feels like.

I am holding out a hand in the hope that someone in your organisation will grab it

Carol Gray, Author of Wow Your Mom Really is Crazy - The minimal amount of testing currently being done on thyroid sufferers is deplorable, especially for those who have the autoimmune component. A broader testing protocol could help the thousands of people who still complain of life changing symptoms even after they have been told their TSH is “normal”. I am taking the time to write not just for myself, a thyroid sufferer but for Judy Kirby who is spending 215 years in prison for driving the wrong side of the road on a highway, resulting in a crash killing others. She had severe brain fog-almost dementia like symptoms because her MD mismanaged treatment of her thyroid condition. I am a thyroid advocate who doesn’t just believe in testing for T3 or the “free’s”, I am a proponent of testing brain function, hormones and vitamin and mineral levels on a regular basis. I mean come on… the thyroid control just about every cell in the body! Why is this one little test (the TSH) the baseline for this all too important gland? The medical community failed Judy Kirby. After that tragedy, her life was in the hands of a jury who failed her. Judy’s defense attorneys argued that a mismanaged thyroid condition was the cause of her slow reaction time and odd behaviors leading up to the accident,( but ultimately the jury did not understand how a thyroid disorder could possibly cause someone to act so spacey and came back with a guilty verdict). If more testing is done on the body for thyroid disorders, perhaps it would offer more education to the public as to why thyroid sufferers have so many symptoms both physically and mentally….and this type of education could have freed Judy Kirby. Better yet, it could have prevented the car accident in the first place, and seven lives could have been saved on March 25, 2001

Suzanne Adair - Author of many award-winning historical suspence books - When did doctors quit being scientists and become politicians?

"There is no evidence that desiccated thyroid has any advantage over synthetic T4 and it may make the precise adjustment of thyroid hormone replacement difficult." This is political lobby balderdash, if ever I've heard it, exactly the opposite of the truth. Dessicated thyroid from pigs contains T4, T3, T2, T1, and calcitonin, just like what you find in humans with normal thyroid function. Since dessicated thyroid is a natural product and cannot be patented, drug companies can't grab it and make billions on it every year. So they spread the lie that their synthetic products are better. Synthetic T4 only works for thyroid patients who don't have underlying adrenals problems or low iron. That's very few thyroid patients.

"A history of symptoms, a physical examination and laboratory tests that measure the amount of thyroid-stimulating hormone (TSH) in your blood are the first steps." The TSH is almost worthless and has, in fact, been used to *misdiagnose* thousands of thyroid patients. The TSH is a measure of pituitary gland function and only indirectly measures the thyroid function. You'd get a more accurate picture by testing the antibodies, the Free T3 and Free T4 and, if the patient has been on synthetic T4 any length of time, the Reverse T3 to see how badly the synthetic T4 has plugged up thyroid receptors. And even if a patient has "normal" TSH, FT3, and FT4 results, you could still be looking at hypothyroidism, because those tests measure what's in the blood, not what's in the cells. And plenty of things impair transport of thyroid hormone into the cells. Like synthetic T4.

How do I know more than doctors about thyroid disease? Because my thyroid disease was repeatedly misdiagnosed for several years, and taking a bunch of de$igner drug$ that I didn't need while the thyroid disease rampaged damaged me internally. If I hadn't learned on my own and gotten the correct treatments, I'd be dead by now.

Come on, doctors. Quit sucking up to Big Pharma. Learn how this stuff works. Help your patients.

Dana Trentini, Thyroid Blogger (Hypothyroid Mom) - In 2009 I miscarried a baby when TSH far above the recommended safe range of 2.5 in your Guidelines for the Diagnosis and Management of Thyroid Disease During Pregnancy and Postpartum. My doctors were not aware of the 2007 Endocrine Society's clinical guidelines for the Management of Thyroid Dysfunction during Pregnancy and Postpartum which recommended a TSH level not higher than 2.5 in the first trimester. My doctors were Ivey-league trained and top awarded doctors in NYC yet they didn't know the thyroid guidelines for pregnancy. My hope is that you find a way to better spread the word about your guidelines to doctors. Babies' lives are in danger from this lack of awareness.


***We are all thyroid advocates, do your part what you say matters!

Crazy Thyroid Lady