Talk Show Host Wendy Williams Has Grave's Disease

Kudos to talk show host Wendy Williams for sharing that she has Grave's Disease. Williams appeared on The Doctors, yesterday.

January is Thyroid Awareness Month

January is Thyroid Awareness Month. Visit the following link for more information about Thyroid Disease/Disorders:

http://www.thyroidawarenessmonth.com/

Thyroid Patient Community Call on Thursday, January 14, 2010

The following was taken directly from http://www.stopthethyroidmadness.com/2010/01/11/dr-lowe-wants-to-talk-to-you/ :



On the heels of an informative and wonderful THYROID PATIENT COMMUNITY CALL on Talkshoe last week with Dr. John C. Lowe (see posts below), we’re going to do it again this coming Thursday, January 14th. Join us for Part 2!


Dr. Lowe is a fibromyalgia, thyroid, and metabolism researcher who has always been such a champion for better diagnosis and treatment in thyroid patients. He is Editor-in-Chief of the open access journal http://www.thyroidscience.com/ as well as his own http://www.drlowe.com/.

Visit http://www.stopthethyroidmadness.com/2010/01/11/dr-lowe-wants-to-talk-to-you/ for more info on how to be a part of the community call.

Thyroid Disorders: why don't T4 only meds work for everyone?

I happened to stumble upon http://www.iwantmyt3.com/t3-test-questions.htm. On this site, Dr. Bouc discusses Thyroid disorders and why T4 only meds (i.e. Synthroid and Levoxyl) are not effective for everyone.

As a visual learner, I like that he uses repetition and drawings to relay the info. His diagram helped to further explain and help me to understand the reasons why T4 meds are not always effective.

I especially like the part where Dr. Bouc says, "Just telling someone that their Thyroid is normal based on a their TSH level being normal is insanity. You should tell that doctor to have some Prozac." I'd love to say that to quite a few of my doctors--past and present.

It was easier for docs to push antidepressants down my throat versus listening to my numerous complaints that it was possibly my medication (T4 only or Synthetic Thyroid Hormone) that was causing the problem. Gee, isn't it interesting that I can function without an antidepressant now that I'm taking Natural Thyroid Hormone instead of Synthetic Thyroid Hormone.

I just hope that those who have been suffering on T4 only meds will realize that there are alternative treatment options that might work for them. Searching the Internet and becoming a part of a knowledge based group is a great start.

Article: Ups and Downs of Thyroid Disease

View the article, Ups and Downs of Thyroid Disease at:

http://www.mercurynews.com/bay-area-living/ci_14150353

Unfair Treatment of Thyroid Patients; We Need Help!

I will be consistently reblogging this post, because it is important that feedback is received by as many resources as possible...

(Excuse the paragraph breaks;copy and paste aren't working so well for me)

Unfair Treatment of Thyroid Patients; We Need Help!

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.

Thank you

Unfair Treatment of Thyroid Patients; We Need Help!

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.

Thank you

Stop The Thyroid Madness Live Chat Session

I am lovin' technology. If there was ever a time to be sick (bad joke, I know)...Let's just say I feel blessed to be living during the internet era. The internet has truly been beneficial in allowing me to connect with people who are in a similar boat.


Anyway, I was just on a phone/chat session--it lasted at least an hour and a half-- with Janie of Stop the Thyroid Madness and many other callers/listeners who have thyroid related issues (i.e. Hypothyroidism, etc.). Dr. Lowe was the featured guest. He is very knowledgable about the treatment of thyroid disorders. He acknowledged how big pharma is "in bed" with the doctors who are prescribing T4 only meds and how that plays into why patients with Thyroid disorders are often being inadequately treated and medicated. He also gave a wealth of information including info regarding hormones, nutrition, and supplements in relation to thyroid disorders.



Now, I just need to get connected to a group that talks about Grave's Disease, specifically. I have some resources but am not connected with any particular group which has a clear organizer/leader. If anyone has any suggestions, please let me know.



For more info about the above session, please visit:



http://www.stopthethyroidmadness.com/2010/01/04/dr-lowe-is-coming-to-our-party-listen-directly-or-ask-him-questions-one-on-one/

http://www.talkshoe.com/talkshoe/web/talkCast.jsp?masterId=62603&cmd=tc
(link to past episodes)

Winterizing the Thyroid

Mary Shomon's tips for "Winterizing the Thyroid":



http://thyroid.about.com/od/relatedconditions1/a/winterize.htm

The Top 10 Thyroid Stories of the Decade

We're on the brink of another New Year. It's customary to see lists discussing the top (???) of the decade--the top grossing movies, the top musicians, the best songs, etc.

Well, Mary Shomon, author and thyroid disease activist, has written an article, The Top Ten Stories Affecting Thyroid Patients in the Decade from 2000-2009. View the article at:
http://thyroid.about.com/od/thyroidbasicsthyroid101/ss/top-thyroid-stories-2000-2009.htm.
It's pretty interesting.

Suggested Article: "The Agonies of Being Thyroidless"

For anyone contemplating RAI due to Grave's Disease or another condition that has affected the thyroid, please check out the following site at:
http://www.stopthethyroidmadness.com/blog/.

I have had RAI as treatment for Grave's Disease. Since then, there is a little more information out there about this procedure--thanks to patients and advocates who have gone through it and know the associated problems that can occur as a result of destroying the thyroid. Unfortunately, many doctors are quick to suggest RAI because it is a "quick" and "convenient" method of TREATING the disease. However, destroying the thyroid does not cure the underlying disease.

I, like many others, have had major issues as a result of destroying my thyroid function through RAI. Unfortunately, I followed my doctor's advice. So, as I said, I suggest doing the research and heavily weighing your options (i.e. natural therapies to get your conditon under control).

Please know, Grave's Disease must be resolved or you risk other issues such as heart problems and osteoporosis to name a few; doing nothing is not an option. In the end, a more drastic approach such as RAI may be necessary. But, I suggest trying other options first.

My mother has a friend who has a 14 year-old-son with Grave's Disease. Unfortunately, the young man is about to undergo RAI, because antithyroid meds have been ineffective at putting him into remission. Of course, his doctors tell him that most people do well after RAI. Well, this doctor hasn't talked to me or others who haven't done so well. I hope and pray this young man does well. It just breaks my heart that this is his only option.

Hopefully, the future will bring better options for treating conditions that affect the Thyroid!