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AACE and ATA faulty guidelines

If any of you are on Facebook and feel like doing some patient advocacy, please go to the pages for those two organizations (type in the full name, not the acronym in search) and post your experience with thyroid care from endocrinologists and with TSH as the primary diagnostic tool.

Once again (for the Thyroid Awareness campaign) both organizations have put up posts stating that TSH is the gold standard for diagnosing and monitoring thyroid dysfunction. Many patients have commented on Facebook in disagreement. The AACE has responded to the controversy on their page and seems to be taking patient response into account, therefore leaving the door open in this public forum to get patient voices heard and to start a dialogue. And the ATA, while once again publishing this spurious information, has at the same time also published the flyer for their Spring Symposium which will be organized around a discussion of alternates to Synthroid in the treatment of hypothyroidism.

It is starting to seem, due to the power of the internet and the patient information we share on sites such as MedHelp and others you no doubt know, that there is building momentum for change in the treatment of our mutual thyroid dysfunction. It's a good time to add your voice to the demand for better care.

Thanks.
11 Responses
Avatar universal
So what is the full names?, you have only posted the acronym's of the AACE and ATA.   FTB4
649848 tn?1534633700
COMMUNITY LEADER
AACE is American Association of Clinical Endocrinologists

ATA is American Thyroid Association
Avatar universal
Thanks Barb  FTB4
Avatar universal
Dear FTB4

Thank you so much for commenting on the AACE Facebook page. Every voice of dissent against their guidelines adds to the momentum for better care for all thyroid patients. I really appreciate you taking the time.

Dear MedHelp members, if you have not added your voice to patient discontent and concern over the AACE focus on TSH as the only appropriate diagnostic tool and T4 as the appropriate treatment for hypothyroidism, please consider doing it if you have a Facebook account. The vigorous protest continues on their page and there are many personal stories of bad or inappropriate care that, if you had any doubt, will confirm your suspicion that your care is substandard, your symptoms real, and that you are not alone in being kept in ill health.

To tell your own story, or simply to protest against AACE guidelines, go to the Facebook page "American Association of Clinical Endocrinologists," "LIKE" the page (which gives you the ability to comment on the public forum) and then choose ANY recent post by the AACE that concerns thyroid issues and comment upon it. You cannot start a separate thread by making your own post, AACE has discontinued this function. But you will find many comments full of personal stories, science links, and general protest underneath each thyroid post. This is also true of the American Thyroid Association's page, to a somewhat lesser extent, since they follow along at the heels of the AACE guidelines like a personal dog, though due to patient protest their Spring Symposium will consider our concerns over alternate treatment beyond Synthroid/T4 only. Normally the AACE page focuses on Diabetes, so this is our moment.

Please consider, during National Thyroid Awareness month, in helping to change the system we all know is not working for us by adding your voice for change.

Thank you.
Avatar universal
Have always avoided any connection to Facebook, but after your post, I joined (for now, LOL)  and posted my thoughts for the AACE to consider.  Thanks for bringing it to our attention.
649848 tn?1534633700
COMMUNITY LEADER
I posted on it the same day you put this thread up.
Avatar universal
I just posted as well- thanks! I hope it helps...
Avatar universal
Thanks to all who posted on the AACE Facebook page. For others who wish to participate, please consider contacting the AACE by mail or email. You might contact ATA as well

ThyroidChange.org is now trying to put together a Public Service Announcement (PSA) about reliance on TSH testing and the consequences to patients. You may have seen similar ones on TV about bullying, say no to drugs, other issues. I very much hope this comes to fruition.....we have all suffered from inadequate care for far too long.

Gimel, I sent you a PM.
Avatar universal
PM not received.
Avatar universal
That's odd, it's marked as sent in my inbox ??? It was a response to your PM, which I didn't know you'd sent on the 13th, until yesterday. Whuttup w/ MedHelp notifications ? Could you check your inbox again ? If it's not there, I'll send it again.
Avatar universal
I got it.  Thanks.  I misunderstood and thought you had sent another PM.
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