Out of frustration and concern:
I am trying to figure out how to help in exposing the unfair practices that are taking place in the treatment of patients who suffer from Thyroid disorders in hopes that these inadequate medical practices will change at some point.
Common complaints of patients who are receiving Thyroid Replacement Hormone due to a thyroid disorder are: not being adequately medicated, receiving very limited medication options although there are alternative methods for those who cannot tolerate the meds that are being pushed by a large pharmaceutical company, and being consistently ignored/dismissed by doctors when trying to receive help for lingering symptoms and complications.
Many people need Thyroid Replacement Hormone to stay alive. Current treatment is often unacceptable and must change on all levels including how doctors are being educated about Thyroid disorders and Autoimmune disorders that have led to Thyroid disorders.
I am a member of several well-run online groups which offer great advice and suggestions. We rely heavily on one another because of the lack of proper medical guidance by many doctors.Within these groups, ideas have been bounced around. I know that members have tirelessly written to Congress people, media outlets, The FDA, Endocrinological Organizations, etc. Also, there has been talk of marching in Washington and filing class action lawsuits.
However, this story has not received mainstream attention. No, this situation doesn't affect millions of people. But, there are many lives--at least thousands--that are being or have been negatively impacted by poor medical practices. More importantly, Big Pharma and politics in terms of health care affects everyone!
On the Internet, there are some wonderful groups including Stop the Thyroid Madness and Save Natural Thyroid. Both groups have a wide following. In addition, there are several other individuals and groups of people who are lost and searching for answers. All we want is to go into the doctor's office and have them take the time to see us as a patient and not a number.
Unfortunately, a routine office visit for a Thyroid patient usually goes like this: "Your TSH levels (numbers from a routine blood tests to measure Thyroid Stimulating Hormone) are fine." Then, a prescription for more pills--that make you feel lousy--are written and the doctor tells you they'll see you in a year. If you're lucky, they might listen while you complain about how poorly you're feeling. The "routine" is bitterly sad and it needs to stop. The treatment is unfair and unethical.
I've written to a number of media outlets and haven't received a response. Also, I just emailed an inquiry to 20/20 but the response mentioned that they only accept solicited ideas and items that have not been solicitited will be sent to the legal department. I'm not clear on what this means. I tried to find another contact address/email but can't find one. Does this mean that this particular show does not accept story ideas from outside sources? It doesn't make sense to me. But, if anyone knows what this means, please let me know.
Bottom line--we need help. We are not trying to cause problems. We just want to enjoy our lives. But when you're consistently being under medicated, over medicated, dismissed, and given inadequate treatment, it's a bit hard to enjoy life to its fullest.
So, if anyone has ideas, can offer services, or just wants to vent, please feel free to leave a comment. That includes everyone (lawyers, doctors, advocacy organizations, newspaper reporters, or anyone). All feedback will be greatly appreciated.