The American Association of Clinical Endocrinologists (AACE) has launched a website -- they indicate that it's for patients and healthcare professionals -- called the Patient Safety Exchange. The purpose of the site, according to AACE, is to improve the safety of healthcare for those with diabetes and endocrine disorders in the United States. Says AACE, "the website focuses on systems improvements in patient safety and quality improvement for endocrine disorders such as diabetes, osteoporosis, thyroid disease, and more."
It sounds interesting and potentially useful, but it's got a long way to go before it could be of any use -- if ever -- to thyroid patients. Right now, while sections on diabetes have lots of information, the Patient Safety Library doesn't even have a category for "thyroid." (The far less common "parathyroid" however, has its own category. Go figure.)
Meanwhile, on the Quick Links page on "Thyroid" you'll find...nothing. That's right. It's "under construction."
Do they plan to include anything on thyroid disease at this site? Thyroid disease is, after all, a far more common endocrine disorder than diabetes.
But...a quick look at the site's sponsors may have the answer. The sponsors are Lifescan (a maker of blood glucose meters for diabetics), and diabetes drugmakers Pfizer and Lilly (4 of Lilly's top 10 drugs are diabetes products). (Can't miss them, as they get color logos bottom right of every page on the site!) It looks like the site may be more about marketing diabetes drugs and products than it is about providing unbiased information on "endocrine disoders." We'll have to wait and see if they actually include any thyroid information, or if this is just another way for AACE to justify hefty donations from drug companies.
big sigh.
Why would we be surprised about this? Endos are the worst doctors ever at healing thyroid disease. They are addicted to the pituitary test, TSH. I finally fired my endo and now I’m with a doctor who test my free T3/4 and gives me armour instead of T4 only that keeps me sick.
For patient safety: Stay away from endos.
The Word says to BLESS those who are attempting to curse us (in this case, those pharmaceutical powers-to-be who may even believe that they are helping folk get better!). Be blessed and I pray that your eyes of understanding be opened to LIFE! $$$ is necessary and does make this daily living thing easier, but it’s not gonna give your heart PEACE.
I’m sure, that Thyroid-disease (as many metabolic Hormonal Diseases) is still a TOO dark area for scientists!
This is NOT their fault, I can understand this: I’m a Dr. myself,..worked in this field untill Hashi’s made me ‘100 % Handicapped’: although I’m a Dr. in Molecular Genetics,..mainly plants & Microbes:…
Thyroid Hormonal Disorders (as they interact with soo many other Hormonal systems, and various other parts & systems of the human fysiology) are still a TOO uncharted/dark area..
NOT enough is known about it..
What bothers me is,..that this is never HONESTLY spoken about!
Instead of describing/mentioning these ‘problems’,…
Companies (as mentioned) rather just IGNORE it,..Do NOT mention this at all…
And they DO mention the diseases where there is a lot known about: Diabetis e.g…I guess one of the few (only?) Hormonal diseases that seems relatively SIMPLE, and lots of research done on..
I do not want to ‘belittle’ Diabetes-patients,…I would not wish this disease on anybody…But, compared to e.g. Hashi’s Hypothyroidism,..this disease is a ‘CLEAR’picture..
Do NOT just ignore Thyroid-patients, I would say to these companies/institutes..
DARE to be honest (’MAN enough’ )to say, that you have NO resolutions yet (knowledge enough)for Thyroid-patients..
Wish you ALL the best!
Sincerely,
Dr. Mrs. I. Verwoert (Hashi’s Hypo)
The Netherlands
My Dr has Hashi and though he understands better than some, there are issues with many of us that are worse than others. He swears by Synthroid though now prescribes Armour. Someone that hasn’t lived with thyroid disease will never understand.