hypothyroid tags

YEEHAW!!

Three years ago this month, the book Stop the Thyroid Madness: A Patient Revolution Against Decades of Inferior Treatment came out with quiet fanfare–a complete patient-to-patient book chock full of information based on the successful experience of thyroid patients worldwide.  As the messenger of that information, I had a strong purpose: to create INFORMED patients who can then demand change in their doctors offices. Pro-active patients!  Educated patients!

But the reaction to it wasn’t quiet!

Thyroid patients have reported it was changing their lives.  To date, the STTM book has been sent, and in multiple copies, to Antiqua/ Barbuda, Austria, Australia, Belgium, Canada, Cyprus, Denmark, Finland, France, Germany, Iceland, Ireland, Israel, Malaysia, New Zealand, Netherlands,  Norway, Singapore, South Africa, Spain, Sweden, Switzerland, Thailand, and the UK. That doesn’t include the high volume amount of copies sent to US patients, doctors, and individuals in all 50 states and Puerto Rico.

Amazingly, yet not surprisingly, patients were discovering new information even a few months after the First Edition was published three years ago.  As a result, Laughing Grape Publishing LLC had to add, and continually update, a bookmark of updated information into all its books ordered directly from the publishing company.

Today, in the REVISED SECOND EDITION, all that extra patient information has been added, plus a LOT more.

• 36 more pages, by and for patients, plus changes & additions in every single chapter
• Much more detail on adrenal and HPA dysfunction and how to treat it
• Recognizing and dealing with Reverse T3
• Identifying and treating gluten issues as related to Hashimotos disease
• Iodine-use information in relation to hypothyroid, breast disease, Hashimotos, adrenal dysfunction, etc.
• More details on labwork preparation, plus what to look for in your results
• Why you need more than ferritin testing, and details on iron testing
• Updated information on brands of desiccated thyroid throughout the world, T3-only products, hydrocortisone, and more
• A completely NEW CHAPTER on supplements & foods which thyroid patients appreciate and use!

And, the price has been kept exactly the same.  Our loss; your gain, in the name of an important movement of needed education and change!

This was NOT an easy book to revise!  I had to go through it with a fine-toothed comb, removing some information, correcting other information, adding a lot more…besides working on making it more readable. I am not a writer by profession. Sometimes I felt like a “cuckoo’s nest mental case”  trying to balance the work on the Revised edition with my other activist responsibilities and a busy private life.  Is it perfect?  Nope.  But as I stated in the First, some information is right on target, some is at least close to the bulls-eye, and other info will fall into place as we continue to learn. That’s why you need to see it as “guide” of patient experience, and to use it to become PROACTIVE in your relationship with your doctor and the entire medical profession.

Today, you can order either copy. As of today, the First Edition has been lowered to 14.95 until supplies run out, which will be soon. The Revised Second Edition is taking pre-orders, and it looks like books will start being sent out in about 7-10 days.

You can go here to see a stand-alone website about the book, as well as here to be among the first to pre-order your copy.

THE STTM BOOK IN OTHER LANGUAGES

Yes, you will eventually be seeing the Revised Second Edition in various languages. That’s in the works right now, and no, I don’t yet know the dates. I’ll announce that here, so be sure and be signed up for this BLOG NOTIFICATION to the left under the links.

KINDLE and E-BOOKS

With no projected dates other than much later this year, you will first see an E-book. Later, we’ll be looking at Kindle. Again, announcements will be made, and you’ll have to be patient.  In the meantime, ordering the book is your best choice right now. Besides, having this book in your lap in the doctor’s office is powerful to many of them, since doctors can have silly thoughts about “internet” information.

And more is coming which will be announced as they occur.

Wendy is one of those gals that tries to adhere to “natural” in regards to her medication choices. She switched over to Armour from Synthroid about three months ago.

The transition was slightly trying, says Wendy. Her doc didn’t believe her that she shouldn’t be on a low dose for more than a couple weeks without upping it. So she  went hypo all over again. (See why here.)

But after successfully upping the dose, she will now shout that it’s been the BEST thing  in every way!  She tells folks that being on Synthroid was like having your hand amputated and replaced with a hook, while being on Armour was like have it replaced with a fully functional prosthetic.  Her skin is softer, hair is not shedding nearly as much, her mood has changed in a good way, memory has returned, fogginess has faded. She feels closer to her old self than she has in almost give years.

Now the bad news…

All this time, she only paid $15 for her Armour at the local Walgreen’s. But as of April 1st, it will be considered a Tier 3 drug under her insurance plan–United Healthcare.  Exclaims Wendy in outrage and sadness:  “This means that the natural drug I love, that has restored my in so many ways that the synthetic t4 only drugs never could, will now cost 85 bucks! Who can afford that?! ”

And here’s the awful irony: Synthroid, the worst medication ever thrust upon us in the treatment of hypothyroid, is Tier 2 (i.e. costs less), and generic T4-only is Tier 1 (costs even less).  i.e. if you are under this insurance, you have to pay big bucks to feel a thousand times better.  She has no clue why this is happening, but warns that it might start to happen across the board for others as well!

Here’s what happened: most insurance companies classify drugs under Tiers.  Tier 1 is generally generics.  And since the Acella “generic” brand of desiccated thyroid entered the market last November, her insurance company decided Armour is now a brand name, thus under Tier 3 and now $85 for Wendy. Seems a bit greedy when it could have risen to Tier 2….

But here is potentially good news for some of you. There is a bill to stop the Tier expense. You can read about it here. Unfortunately, tho, it “will not impact self-funded health plans which cover about half of all employees with health insurance. Federal legislation is needed to change that.”

Does your health insurance cover your desiccated thyroid?

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Canadian Pharmacy price updates for Erfa: See the latest prices here.

How medical journals affect the prescription practice of your doctor: An interesting article on this found here. And here’s an article about how the author of a medical article fails to state his association with the pharmaceutical of the product he is writing about–one more conflict of interest and influence on your doctor!

Ridiculous! Basing “normal” for Hashimotos patients by the TSH, a pituitary hormone, NOT a thyroid hormone: Read it here and weep.

Vit. D can help you stay sharp: So many benefits from optimizing your Vit D, and here’s one with your brain.

Need to talk to others? See all your alternatives here.

A guy posted about this one of the STTM Facebook groups, and I found it hauntingly familiar. When I was in my early 30′s, I was forced to quit my beloved career as a well-trained and talented fitness instructor due to hypothyroid complications causing debilitating dysautomia reactions thanks to T4-only medications. It was very grievous and hard.

But famous Brazilian soccer football player Ronaldo, who was the all-time leading scorer at the 2006 World Cup,  has had to retire because the game rules FORBID him from taking the hypothyroid meds he needed, even if they have been the lousy T4-only levothyroxine meds. i.e. the rules see taking thyroid hormones as against the anti-doping rules.

What a shame. He’s young, 34 years old, and could have continued with a great career. But you also have to wonder how long he would have lasted at that, because Brazil doctors are still putting people on T4-only medications like so many other clueless doctors around the world.

You can read about it on CNN here.  Did you identify with losing a career or hobby thanks to hypothyroidism? What’s your story?

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I get really interesting emails from folks, and one arrived last week from Brian, the creator of a YouTube video called Our Holy Miracle of the Infallible TSH Test that he wanted me to view.

I confess that when I first saw it, I thought it was quite bizarre! Wasn’t sure what I thought of the humor with the female as she was dressed.  But the more I thought about it, I also see it as extremely creative, a good sense of humor, and a pertinent message. In fact, it may strongly appeal to younger folks because of it’s intentional hip irreverence.  So, go there with an open mind and sense of humor, and you just might like the message as I do and others are! http://www.youtube.com/watch?v=tOb2POQGE6g

Note: if you are reading this via the Blog Notification and want to comment, click on the title of this post, which will take you directly to the blog and where you can leave your comment.

* The hip (cough) Stop the Thyroid Madness t-shirts are slowing running out, so before they do, you can order yours from here.

* Prefer talking one-on-one? You can schedule a paid consultation with Janie at the bottom of this page.

* If STTM has helped you, make a donation to the hosting fees here.  The popularity of this site has resulted in much larger fees and your help is very appreciated.

Reading and responding to my daily emails is a huge job that takes a lot of time. My 92 year old mother-in-law thinks I’m obsessed with my computer. ha!  If only she knew.  But some of those emails stand out in my mind.

As a recent example, one gal wrote to tell me she had suffered from depression for so many years due to her poorly diagnosed and inadequately treated thyroid condition. And because her use of desiccated thyroid had hugely improved her mood, she was inspired by and had purchased the STTM bumper sticker about depression. You can see it here.

And unbeknown to her innocent husband, the bumper sticker went on HIS car.

And just two days later, she explains what happened:  My husband was coming from his cardiac rehab exercises to the shopping center locally, and when he got out of his car,  another car pulled behind him, blocking the lane.

Turns out that the other driver, a man, jumped out and wanted to know what the bumper sticker means.

She continued: My husband figured the guy meant his Marine Corps stickers but no, he meant the thyroid sticker. So my husband says, bewildered ‘What Thyroid sticker’?

After realizing it was there, the other man explains how his wife has been diagnosed with thyroid disease and her dr. wants her on antidepressants.

She said: “My poor hubby only knew that I feel so much better on Natural hormones and I am not as depressed as I was before. All he could tell him was “she got it off the internet”.

I’ll bet he saw the URL on the sticker, and his wife is going to get some life-changing information from Stop the Thyroid Madness.  So we can never underestimate how little things we say, or show, or do are going to make a difference in someone’s life.

I hope each and every one of you are being “thyroid patient advocates” and spreading the word to others. If you like using bumper stickers or t-shirts, go here.

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ABOUT PROBLEMS WITH THE STTM SITE: There have been numerous problems with folks getting on STTM the last few weeks. The first problem was due to a software installed by my web designer to prevent attacks by spam bots. That was fixed. But if you visited during that time and use IE, just clear your caches. Others may need to use a different browser.  You then may be able to go back to your original browser.

But since then, more problems have creeped up. It’s called GROWING PAINS. i.e. STTM has become so popular that more problems pop up. And since we have limited resources, we just have to deal with them, one at a time. So please announce on all your groups that STTM has not gone away, that we are working to fix problems related to growing pains,  and to try again if they at first can’t get on. If you want to contribute to the hosting fees, go here:  http://www.dreamhost.com/donate.cgi?id=8074

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TWO SITES YOU NEED TO REGISTER WITH:

1)  http://www.tpa-uk.org.uk/register_of_counterexamples.php A Register of Counterexamples to levothyroxine-only-therapy, set up by Sheila of TPA-UK.  ”Counterexamples” means all those symptoms which proved that T4-only meds do NOT work.  She will be using this to get the attention of doctors and authorities in order to re-examine the use of T4-only for all forms and degrees of hypothyroidism.

PLEASE NOTE: This questionnaire is only for those prescribed levothyroxine (T4-only) and who failed to get relief for the elimination of their symptoms, and who then started using a T3 containing hormone (either synthetic or natural). It’s also for those who were denied a diagnosis and treatment, and tried a T3 hormone containing product and found your symptoms became less.

2) http://www.worldthyroidregister.com/ A site established by Dr Gorder Skinner to gather as many signatures as possible to establish a Worldwide standard treatment for thyroid sufferers.

As a hypothyroid patient, think you are fine drinking that purely fine mineral water from a plastic bottle? Think that fluoride and chlorine are the only substances we need to worry about when it comes to our thyroid health?? Think again.

Thyroid patient Amy McMullen, who has contributed before on STTM’s blog as a GUEST POSTER (Confessions of a Undercover Thyroid Advocate) and has a passion about human rights, has written another important article below which should be of keen interest to all of you.

BPA—A POWERFUL ENDOCRINE DISRUPTER THAT AFFECTS YOUR THYROID

Perhaps you have read recently about how the chemical Bisphenol A (BPA) is found to be prevalent in our food and water. As a hypothyroid patient, I was surprised to see that not all articles about this harmful substance adequately describe the connection between thyroid function and BPA. This is an oversight that should be addressed since hypothyroidism is estimated to affect over ten million people in the US and this number is growing. It makes perfect sense to look to environmental toxins as a likely culprit in this serious health epidemic.

BPA is a synthetic estrogen and an endocrine disrupter that causes multiple health problems. There are over 200 studies linking it to breast cancer, obesity, attention deficit disorder, early puberty in girls, genital abnormalities in boys and girls alike, polycystic ovary disease and infertility in women and prostate cancer in men. Studies indicate that up to 92% of Americans have BPA in their urine. Also BPA doesn’t leave the body quickly; fasting adults still had BPA levels in their bodies after 24 hours.

BPA comes from many plastic sources. It’s used as a hardener in plastic manufacturing. Many tin cans have plastic linings that contain BPA including soup and tomatoes, and it’s also in plastic water bottles, some infant formulas and canned juices. BPA is also found in PVC water supply piping.

How does BPA relate to thyroid disease? According to a several good studies, BPA is a thyroid receptor antagonist. This means that BPA will interfere with the binding of the thyroid hormone T3 with cell receptor sites. This will cause hypothyroidism, not only with people with under-functioning thyroids but also for those who are currently taking medications for hypothyroidism or even those who have normally functioning thyroids. BPA was found to accumulate in many organs when injected into rats including the lung, kidneys, thyroid, stomach, heart, spleen, testes, liver, and brain. In this way, BPA has the potential to interfere with thyroid hormones in each organ that has accumulated the substance. A study also indicates that the levels of BPA that are considered safe (upper limit of emission is set to 2.5 ppm [µg/liter], which is more than 90 µM) are high enough to inhibit thyroid hormone receptors. Yet another study shows that BPA appears to accumulate in rat fetuses in significantly high levels and disrupts thyroid function in baby rats.

There’s also evidence that BPA may influence the metabolism of endogenous steroids, which may be a factor in adrenal fatigue and its treatment, as well as and its treatment, as well as dysautonomia stemming from adrenal problems. Many with hypothyroidism also suffer from co-morbid adrenal fatigue and BPA may be a contributing factor in this.

What this means for everyone, but especially for thyroid patients, is every effort should be made to remove BPA from food and water supplies. For those who are not able to get properly optimized on their thyroid meds or who are finding they are suffering from hypothyroid symptoms despite normal levels of TSH, free T3 and free T4, consider BPA as a possible source of the problem.

Steps you can take to minimize you exposure include:

• Avoid all canned foods with plastic liners and avoid bottled water. Buy your canned tomatoes in glass jars, not metal cans or stick to using fresh ingredients. Most other canned foods use BPA as well, especially green beans (Here is a list of BPA-free canned foods).
• Drink water out of glass or stainless steel containers (and make sure there’s no plastic liner or lids that have BPA) or BPA-free plastic. Low density polyethylene bike bottles contain BPA.
• Do not microwave foods in plastics or use plastic wraps when microwaving. Avoid polycarbonate (“PC” or #7 and #3) plastic food containers altogether.
• Since most municipal water piping is PVC and some houses have it as water supply lines, consider installing a reverse osmosis system for your drinking water. This will also remove fluoride and chlorine (other thyroid disrupters) and many other harmful substances from drinking water.

Most importantly we need to make our voices heard that BPA is not an acceptable substance and that its use in our food and water supply must cease. Recently Senator Feinstein introduced a ban on BPA to the Food Safety Modernization Act but this was modified to remove the ban due to pressure by industry groups. Senator Feinstein still has an effort underway to ban BPA from child drink bottles and toys and several states have enacted such bans but this does not go far enough.

Contact your representatives today and let them know that a national ban on BPA must be enacted. If they don’t listen then I suggest you make yourself heard at the ballot box this November.

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• Have you cut down on your exposure to Fluoride? Buy non-fluoridated toothpaste as a first step.
• Cut down on more chemicals by using baking soda under your arms rather than commercially-made underarm deodorants. Note that the baking soda may at first cause redness, but it will go away within days and is a great way to kill odors.
• Have a pounding heartrate that you can’t explain? You may be making too much RT3.
• Check out typical Questions and Answers about thyroid treatment and related issues.
• Want to write a GUEST BLOG POST on STTM? Go here.