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The outcome of this can affect YOU, as a thyroid patient, no matter WHERE you live!

Screen Shot 2013-02-10 at 10.22.58 AMWhat affects your neighbor can affect you. 

This is why you need to be aware of, and show support for, what is going on in Scotland. Namely, three Scottish residents….Sandra Whyte, Marian Dyer and Lorraine Cleaver…have submitted a petition to the Scottish parliament as of last week in defense of better thyroid diagnosis and treatment.

ThyroidChange has provided a video about this hearing, and it’s moving. You’ll hear mention of the following:

  1. the conversion failure of T4-only treatment, leaving these women suffering with low energy, high cholesterol or blood pressure, weight gain, anxiety, fibromyalgia joint pain, suicidal tendencies or more
  2. issues related to poor cortisol levels
  3. problems with testing only the TSH and T4 lab tests
  4. stress put on marriages because of these failures
  5. how the diagnosis of Chronic Fatigue Syndrome and Fibromyalgia seem to have risen only after the TSH came into being along with thyroxine treatment

A mind boggling and brilliant comment came from Lorraine about the National Health Service (NHS) listing of medicines, which she stated includes 82 for Diabetes, 47 for depression, 45 for acne, 16 for athletes foot, 3 for hiccups, 3 for dandruff….AND ONE FOR THYROID. “There’s something very wrong” says Lorraine, when T4 is the only medicine listed (in spite of the availability of natural desiccated thyroid, also called thyroid extract, or T3.) 

When asked for evidence as to where the problem is with General Practitioners (GPs), it was mentioned there are no guidelines for the treatment and diagnosis of hypothyroidism, and everyone defers to the Royal College of Physicians guidelines, which is inadequate and does not provide for problems with T4-only or recommend T3 or thyroid extract (natural desiccated thyroid).

Sandra asks “Why are we keeping people ill?“.  She mentions that patients are told it’s in their heads, have “lazyitis”, and antidepressants are prescribed everywhere.  Lorraine sadly mentions being told by doctors that her problems are not thyroid related (when she knows they are, and so do millions of us).

Mention was made of a Swedish study showing that 70% of thyroxine-treated patients are not symptom-free, going against the idea that taking one little thyroxine pill is going to solve the problem. 

Lorraine mentioned that even doctors, like a particular Endocrinologist she has seen, feel ham-strung themselves (by the pressures put on them from their fellow professionals to prescribe T4-only).

BRAVO TO THESE THREE LADIES FOR BRINGING THIS TO THEIR PARLIAMENT!  And I can’t help but believe that if we see the right outcome in Scotland about this, it will play a role in spreading throughout the world. Have your own T4-only nightmare to share? You can send it to the Scottish parliament to back up what these ladies have already one, here: petitions@scottish.parliament.uk

And from Janie: we see many T4-only patients who do seem to convert well, yet still have issues related to a poor treatment. I was one. There are many others. Additionally, even those who convert well eventually find themselves with problems as they get older. T4-only treatment is not a pretty picture.

For further reading:

To see research which proves what we already know as thyroid patients, go here.

To see patient-recorded symptoms from being on T4-only, go here.

Speak your truth to the American Association of Clinical Endocrinology (AACE)!

megaphoneA grass-roots campaign has been started by thyroid patients after the glorious AACE comment that “the TSH is best in most cases”. From ThyroidChange:

THYROID FRIENDS, TELL THE PROMOTERS OF TSH TESTING AND LEVOTHYROXINE (T4) TREATMENT WHAT YOU THINK!!!

PLEASE tell the ATA and AACE how YOU feel about their treatment guidelines that encourage TSH only testing and treatment with Levothyroxine (T4) only.

WE NEED CHANGE NOW!

Please write something that explains how their emphasis on the TSH test and Levothyroxine (T4) only treatment has impacted your life and health. Write as LITTLE or AS MUCH as you want. JUST WRITE!

Tell these organizations the consequences of their guidelines.

The way to do this is to post your comment on the first link and then copy & paste it on the other 3 links:

ATA FB post regarding their 2012 guidelines:https://www.facebook.com/ThyroidAssociation/posts/228435853958522

ATA main wall:
https://www.facebook.com/ThyroidAssociation

AACE FB post regarding TSH supremacy:
https://www.facebook.com/TheAACE/posts/757086797712215?comment_id=2587944&notif_t=like

AACE main wall:
https://www.facebook.com/TheAACE

POST THE COMMENT YOU MADE ON ANY OF THE ABOVE…also as a comment below. Let’s share what we are posting.

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SEND A VISUAL MESSAGE THAT YOU WANT THIS THYROID TREATMENT MADNESS TO STOP!!

See the new campaign here: flatsttm.com  Just have a photo taken of you in front of some kind of landmark where you live, holding your STOP THE THYROID MADNESS sign!

You can also add under the STTM name: THE TSH LAB TEST FAILS US! Or T4-ONLY IS NOT THE BEST TREATMENT!!  Or I SUFFERED BECAUSE OF THE TSH LAB TEST AND T4-ONLY. etc

The Good, the Bad and the Ugly: 2012 in perspective for thyroid patients worldwide

2012 represented my tenth year as an activist, which has given me great perspective of where we are today as to compared to where we were ten years ago. And it’s huge. We had NO Stop the Thyroid Madness compilation of successful patient experiences to learn from and very few patient groups. We’ve come a long way, baby and the fight for better thyroid treatment and wisdom continues!

To summarize, Clint Eastwood couldn’t have said it better as to the mix of what 2012 gave us as informed thyroid patients!

THE GOOD: 

  • Armour returns to a softer tablet  After Forest Labs disastrous reformulation of Armour natural desiccated thyroid in 2009, which made the tablets harder and caused a return of our hypothyroid symptoms, we started to see Armour tablets becoming softer again in mid-2012. And that meant we could choose to do Armour sublingually once again. In the meantime, this disaster allowed many patients to discover NP Thyroid by Acella, which has turned out to be a great product.
  • More doctors are getting it! I probably see this in a more widespread way than individual patients do thanks to all the emails I get, but it’s clear that a growing body of doctors are finally understanding the efficacy of natural desiccated thyroid and the idiocy of the TSH lab test in diagnosing and dosing NDT. Sure, the field of Endocrinology is still as backwards as it gets, as are many other doctors, but others are listening here or there. (But do note that even the best doctors aren’t caught up in other areas, so become informed and expect to guide them as to patient experience! STTM book helps you do that.)
  • STTM book now in German and Swedish  I was proud and excited to offer these two translations to help spread the word to those who may not speak English.
  • Study being done comparing NDT with Synthroid Walter Reed National Military Medical Center in Bethesda, Maryland is doing a study, and seeking participants from the military, to compare the results of natural desiccated thyroid (which they call Natural Desiccated Extract or NDE, and will be Armour) and T4-only aka levothyroxine (and will be the infamous Synthroid). But there is a clear bad…..see below 
  • Wichita, Kansas says no to Fluoride in their waterConsidering that many of us suspect that the fluoride we are constantly exposed to could explain the huge influx of thyroid disease, this is extremely good news and we can only hope that other cities get this smart.
  • Thyroid Change In an attempt to unite all thyroid websites, leaders and focuses came this new website, Thyroid Change.

THE BAD:

  •  John C. Lowe dies  It was a terrible shock to lose this helpful medical professional in January due to the effects of a head injury the previous year. And his websites went with him for awhile due to probate. He will be sorely missed, as he was a champion for the use of NDT and understood SO much about better thyroid care.
  • The passing of Edna Kyrie  Edna of the UK worked hard on the website Thyroid History, aka Thyroid Research, compiling everything she could find pertaining to thyroid research and science, even while dealing with the effects of MS (multiple sclerosis).
  • US now confiscates medications if they come into the country  In July, Obama passed a bill called the FDA Safety and Innovation Act (S. 3187) which allows the government to destroy a package of personally imported drugs at their point of entry to the United States…even if some patients feel they need them when they can’t find any doctor wise enough to prescribe NDT, or enough NDT thanks to the poor use of the TSH lab test. And several patients have already had this happen to them.
  • Walter Reed National Military Medical Center study will sadly be using the TSH  i.e. though it looks exciting to see a study comparing NDT to Synthroid, they are going “to keep TSH in normal range” (which for the majority can mean they are still hypothyroid) and aren’t even testing the FREE T3, just using the total T3, total T4, free T4, T3 resin uptake, sex hormone binding globulin (SHBG), and a lipid panel.  Give me a break….
THE UGLY:

Good thyroid patient discussion groups here.

Things we have learned here.

What’s new on STTM here.

What your Road to Recovery can look like here.

The revised STTM book here.