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Category: Patients

Has progress been made with thyroid treatment??

Sometimes I ponder: the current movement away from Synthroid & Levoxyl and all other T4-only meds to desiccated thyroid like Armour (as well as the understanding of the high prevalence of adrenal fatigue with thyroid patients), has been going on for ALL of the 21st century. In other words, patients were starting to talk about desiccated thyroid like Armour by the year 1999, and Yahoo’s Natural Thyroid Hormones group was started in 2002. Other patient groups sprung up around the same time. The latter group is also where the knowledge about adrenal fatigue in thyroid patients grew, which was further added to on STTM. So….has there there been any changes in the way thyroid patients are treated for their hypothyroid and related conditions?

The YES

Sometimes I can say a resounding yes! There are many doctors around the world who are looking at Stop the Thyroid Madness (STTM) and listening to what is says. STTM is about the real life changing experience of patients! Some doctors tell me outright, either via the Contact Me form or by responding to my blog posts here, that they are reading it and approving the information. Or, I find out about other doctors second hand by patients who tell me their doctor TOLD THE PATIENT to read STTM. The latter definitely makes me chuckle when so many doctors tell patients that information on the internet is DANGEROUS! 😆

I can also say yes when I read the comments of patients on various thyroid patient groups on the internet. Because of the information patients have learned from STTM, which is in turn passed into the groups, patients all over the world are making demands in their doctor’s offices, and some progress is being made all over the world.

And a final yes can be uttered by me when I see a few but growing number of websites promote desiccated thyroid.

The NO

But there are so many situations where I have to say no. 1) When doctors on internet forums TO THIS DAY continue to give lousy advice to thyroid patients, it’s disheartening. 2) When patients on thyroid patient groups TO THIS DAY continue to have doctors state each and every ridiculous give me a break comment, it’s sad. 3) When a famous female talk show host continues to ignore each and every email sent to her for years about the deplorable situation across the world with thyroid patients, as well as seem to misunderstand her OWN thyroid and potential adrenal problem, it’s maddening. 4) And when I can run into patients DAILY when I go to the grocery store, or to the gas station, or to any public place, who are still on Synthroid or Levoxyl and coping with innumerable symptoms of a poor treatment, not excluding adrenal fatigue, it’s scandalous.

So the complete answer? Yes and no. The ball has definitely been rolling for better treatment. Some doctors out there are truly listening. Many patients out there are learning and demanding change. It’s happening. But baby, we have a LONG WAY TO GO. And the power will be in the hand of patients who question their treatment, find answers via STTM and other websites and patient forums, and continue to demand change from their doctors and the entire medical establishment. I just hope to see more change sooner than later, don’t you?!

p.s. Want to spread the word?? Go HERE to order a t-shirt or bumper stickers. You CAN make a difference!

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The right way to find a good doctor!

A friend of mine, Kerry, recently confessed to me and a few friends that it was time to find a new doctor. Her normal one had been a disappointment for her far too many times. Time to move on.

And how she is moving on TOTALLY impresses me, and I think all of you reading this should consider this positively assertive and self-advocating strategy.

First, she scoured through her list of doctors on her insurance plan, and found one that looked promising. She called and spoke to his nurse on the phone. She then told us the following: I explained that I use Armour and refuse to change meds; I am VERY involved in my health; I watch my Frees carefully and don’t rely on the TSH at all since the feedback loop is interrupted by meds..etc. With that said, the nurse stated she would check with the doctor.

In other words, my friend Kerry refused to do what all of us have done most of our lives–approach the doctor passively. She clearly outlined who she is, where her intelligence is about her body, and that she expects a partnership, not a demi-god, one-sided dictatorship of what is right and what isn’t right for her health care.

She also stated that if this doctor didn’t come through, her next strategy was to write a letter about her health needs and how she wants to be very involved in her treatment, then fax it to every available doctor on her insurance list in her area and see if she gets someone calling.

MAJOR, HAND-CLAPPING BRAVO, Kerry!!

THAT, friends, is the way each and every thyroid patient should approach their health care: candid as to your beliefs about your treatment, and what you want from the doctor. And eventually, your assertive approach will produce a doctor who is going to be a gem for you! Remember: it’s YOUR body and YOU live in it.

p.s. Without an insurance plan? Pull out the Yellow pages! And don’t hesitate to use parts of this Dear Doctor template letter to help you flesh out and compose your words or letter.

***WANT TO MAKE A FASHION STATEMENT ABOUT YOUR THYROID TREATMENT? Go HERE for a thyroid advocacy t-shirt. I dare you to wear it to your doctors appointment. (But if you don’t, wear it everywhere else. It does attract questions.)

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Stop the Thyroid Madness 2008 NEW YEAR’S THYROID PATIENT RESOLUTIONS

For 2008, as a hypothyroid patient: I will:

1) expect that the relationship with my doctor will be a TEAM approach to my health care: not just his medical school/continuing education/experience, but also my own important knowledge and wisdom that I have gained (from reading sites like this), plus my subjective experience on my medication. My doctor does not live in my body or experience my symptoms; I do.

2) take the time to find a better doctor if my doctor refuses to respect the knowledge I have gained from reading sites like this, and/or will not listen to my subjective experience in my own body!

3) make my symptoms far more important than ink spots on a piece of paper called lab results, and will not passively allow a doctor to treat me ONLY according to those lab results.

4) give myself important supplements, including, but not limited to: selenium and zinc (helps conversion of T4 to T3), other minerals which may include magnesium, etc., plenty of B-vitamins (which are needed as I improve my thyroid function, besides supporting my adrenals), Vitamin C (also supports my adrenals) and more that I feel are suited for my needs.

5) be open to the fact that if Armour or other desiccated thyroid products don’t seem to be working, I am making one of several mistakes in my use of it, and will identify my mistakes and correct them.

Do you have others as a thyroid patient? Just respond to this post.

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Wear a Thyroid Advocacy T-Shirt!

Because so many of you asked….you can now order a THYROID ADVOCACY T-SHIRT. And let me tell you–it works!! I did a test run. Wore it to several places over several days to see what reaction I would get. And reactions I got. Sure, it was a person here or a person there. But you are planting seeds in each person who asks. And they will carry those seeds into their own better health…and tell others.

And if you think that because you are on a large thyroid forum or group, it means the word is getting out–it is! But we’ve only scratched the surface. There are still millions out there who don’t know why they gain weight so easily, feel tired, have rising cholesterol, hair is thinning, or have depression. They need to hear about this.

We have to change the current LOUSY thyroid treatment protocol from the bottom up by spreading the word. It’s WE who will go to our doctors offices and demand change! It’s WE who will stop putting money into the pockets of those doctors who won’t listen to what patients have learned and go to those who WILL.

Enjoy the shirt! And feel proud for the part YOU can play garnering attention and spreading the word! p.s. Right now, orders are from the US only. As soon as Bidpay updates their checkout, I’ll add International. STTM is not just MY website: it is YOURS.

ALSO REMEMBER: if you use Bidpay, you’ll need to use the CONTACT ME form at the bottom of the page to let me know which size. The Bidpay function has no place to designate size.

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Join the OPRAH WINFREY LETTER-WRITING CAMPAIGN

oprah-at-theoscars-in-2007-updated(This blog post was originally written in 2007, and informed thyroid patients at the time were disappointed in Oprah for not being informed or a good spokeswoman about the horrific way hypothyroid was being treated. Nothing changed. So we as patients just kept trodding along, chatting with each other.)

I have had many folks email me about their concern that Oprah is not only failing to get the message about her thyroid issue, but thyroid advocates and interviews are not sending the message about what information is needed out there…and the media has STILL not caught on to this HUGE treatment scandal of the use of T4-only meds and the TSH lab. So, by request, I have created a letter template that you can use to be part of a massive letter-writing campaign to Oprah.

Yes, I’m sure she’s very distracted by the heartsick tragedy of her Leadership Academy for Girls in South Africa, but it may also worsen her thyroid condition, as well as create a potential adrenal problem. So THIS is the TIME to make a MOUNTAIN in her mail room. Go here: www.stopthethyroidmadness.com/letter-to-oprah-winfrey/

Please note that you can also use the above template letter to email her, but if we can ALSO send REAL LIVE letters as outlined in the above page, that can make a HUGE VISUAL difference as to what we are trying to tell her.

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