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Year: 2012

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 water. Considering 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.

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Ladies: Hypothyroidism in pregnancy can be dangerous, says this woman who suffered a miscarriage

This Guest STTM blog post was written by hypothyroid mom Dana, who strongly feels that her miscarriage was due to her treatment with T4-only medications. She now has two healthy sons of which the second one came into the world after she switched to natural desiccated thyroid. 

On a cold snowy day in New York City in early 2009, I lay on a medical exam table on what would be one of the worst days of my life. I had miscarried at 12 weeks and was preparing for a D&C. A technician had just taken an ultrasound and walked out of the room to confirm to the medical staff that my fetus had no heartbeat. I sprang off my bed and ran to the image on the screen. I felt my body shake and my fists clench as I stared at the image of my unborn child. What happened to my child?

I was diagnosed with hypothyroidism following the birth of my first son in 2006. I trusted my doctors and followed their synthetic thyroid drug protocol to the letter …never once thinking they might not know everything there was to know about hypothyroidism. I trusted them as the experts especially when I became pregnant that second time.

In my first trimester, I was overcome by a sick, tired, weak feeling. I recall the night I told my husband, “I am worried that something is wrong with the baby.” My body was whispering a warning to me, but I trusted my doctors and didn’t question them when they responded that my thyroid levels were safe for pregnancy and that it was normal in early pregnancy to be tired. Somehow this “sick, tired, weak” feeling didn’t seem normal but I disregarded my body’s warning.

I would later learn that my Ivy League medical school trained and top awarded NYC doctors did not know enough about hypothyroidism especially as it related to pregnancy. Under their care my TSH soared far above the safe range for pregnancy and endangered my baby’s life. I miscarried at 12 weeks pregnancy.

A study presented June 2012 at The Endocrine Society’s 94th Annual Meeting in Houston recommended that all pregnant women should undergo thyroid screening in the first trimester of pregnancy. The study was conducted on 1,000 pregnant women in their first trimester in Ludhiana in Punjab, India. According to the study’s lead author Jubbin Jagan Jacob, M.D.:

“The study found that even mild thyroid dysfunction could greatly increase the risk of serious problems. Women with mild thyroid dysfunction had double the risk of miscarriage, premature labor or low birth weight as compared to pregnant women with normal thyroid function. They also had seven times greater risk of still birth.”

In the Journal of Medical Screening, researchers in a large study of 9,400 pregnant women demonstrated that pregnant women with hypothyroidism had a second trimester miscarriage risk four times the risk of women who were not hypothyroid.

According to a 2008 study in the Indian Journal of Medical Sciences, hypothyroidism has a statistically significant relationship with recurrent pregnancy loss in the first trimester. According to researchers:

“Thyroid hormones are essential for the growth and metabolism of the growing fetus. Early in pregnancy the mother supplies her fetus with thyroid hormones. If the mother is hypothyroid, she cannot supply her fetus with enough thyroid hormones. Hence hypothyroidism is a risk factor for pregnancy loss.”

So why had I trusted my doctors unquestioningly?

My doctors tried to assure me there was no link between hypothyroidism and miscarriage, but my instincts told me they were wrong.

As the medical staff prepared me for my D&C that fateful day, the warrior mom came out of me. Don’t mess with my babies! I vowed that I would do everything in my power to research everything there was to know about this disease and warn women everywhere about the dangers. I would never trust my doctors unquestioningly ever again.

After 3 years of intense research and a quest to find the top thyroid health professionals, I am now in the best health ever. I changed to a great thyroid doctor who listened to my symptoms and discovered abnormally low free T3 levels despite my synthetic drug treatment. Thanks to a switch to the natural desiccated thyroid Nature-throid I am feeling great. I got pregnant naturally with my second son and gave birth to him in 2010. Dreams do come true for moms with hypothyroidism.

By Dana Trentini, creator of Hypothyroid Mom (http://hypothyroidmom.com).

You can read more about hypothyroidism and pregnancy in research here:

1.  Endocrine Society (2012, June 23). Mild thyroid dysfunction in early pregnancy linked to serious complication. Newswise. Retrieved July 3, 2012 from http://www.newswise.com/articles/mild-thyroid-dysfunction-in-early-pregnancy-linked-to-serious-complications

2. Allan, W.C., J.E. Haddow, G.E. Palomaki, J.R. Williams, M.L. Mitchell, R.J. Hermos, J.D. Faix, R.Z. Klein. Maternal thyroid deficiency and pregnancy complications: implications for population screening. J Med Screen 2000; 7:127-130. Retrieved from http://171.66.127.126/content/7/3/127.full.pdf

3. Rao VR, Lakshmi A, Sadhnani MD. Prevalence of hypothyroidism in recurrent pregnancy loss in first trimester. Indian J Med Sci 2008;62:357-61. Retrieved from http://www.indianjmedsci.org/text.asp?2008/62/9/357/43122

HO! HO! HO! Did you know the Stop the Thyroid Madness book is now also in German and Swedish? You can order your copy as a Christmas present for your loved one or friend here. 

Read about Pregnancy and Thyroid disease here.

 

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Scandanavian thyroid patients sickened…and US thyroid patients don’t blame them!

The following was sent to several thyroid leaders and websites yesterday from Scandanavia. And if you don’t understand the full story, read what I have to say about it below…and you’ll see why thyroid patients find this disgusting:

To Whom it may concern in the matter of The H. C. Jacobaeus Lecture Prize 2012 by the Novo Nordisk Foundation

With grief we become aware that The H. C. Jacobaeus Lecture Prize 2012 will be awarded to Anthony Weetman at The International Thyroid Symposium on 29 November this year, in Gardermoen, Norway.

Anthony Weetman is painfully well known by thyroid patients worldwide in a way that is miles afar from the honor and gratitude.

Can it really be true that Novo Nordisk Foundation will honor Anthony Weetman from the UK, despite the fact that this doctor treats the majority of thyroid patients as mentally ill?

Is it a position on thyroid diseases and patients that Novo Nordisk Foundation shares with Anthony Weetman?

It is well documented that Anthony Weetman is practicing a simplistic approach to thyro-endocrinology.

Does this mean that when Novo Nordisk Foundation wants to dignify this doctor with The H. C. Jacobaeus Lecture Prize 2012, the Foundation supports Anthony Weetman’s oversimplification of thyro-endocrinology?

Considering HC Jacobaeus’ honorable contributions to the history of science, the H. C. Jacobaeus Lecture Prize 2012 to Anthony Weetman is to be considered as an affront to HC Jacobaeus and as an Novo Nordisk Foundation’s active contribution to the gap between doctors and thyroid patients that will become even wider and deeper than it is already.

Sincerely,
Administrators and users of thyroid forums in Scandinavia
Ref: http://www.sonjas-stoffskifteforum.info/showthread.php?t=15164

So what’s the story?

First, let’s look at the players: Novo Nordisk “is a global healthcare company with 89 years of innovation and leadership in diabetes care. The company also has leading positions within haemophilia care, growth hormone therapy and hormone replacement therapy.”

Anthony “Tony” Weetman has been a Professor of Medicine at the University of Sheffield in the UK for many years. Since 1991, he was also a Consultant Endocrinologist at the Sheffield Teaching Hospitals Trust. From 2005 – 2008, Weetman was President of the British Thyroid Association and presently is Chair of the Medical Schools Council and a member of Council of the Royal College of Physicians of London.

Why the disgust?  Weetman condescendingly believes the majority of thyroid patients have a somatoform disorder, which is just a medical way to say that millions of thyroid patients are no more than hypochondriacs. As a result, you are chronically exaggerating your symptoms and problems due to stress and worry. Thus what you think is wrong with you is actually the result of a MENTAL DISORDER! In 2006, Weetman revealed his true colors in an article titled “Whose Thyroid Hormone is it Anyway” (Journal of Clinical Endocrinology) by stating:

“The majority of patients who demand thyroid hormone treatment for multiple symptoms, despite normal thyroid function tests, have functional somatoform disorders…”

Bottom line, my fellow thyroid patients, Weetman is basically saying that your depression, heart problems, high blood pressure, low blood pressure, rising cholesterol, easy weight gain, hair loss, fibromyalgia pain, chronic fatigue, sluggish adrenal function, low iron, high liver enzymes, and a host of other very real hypothyroid-caused symptoms….ARE IN YOUR HEAD…especially if the TSH lab test (which patients know is a failure) says you are normal.

You can read my blog post from 2006 on Weetman here. And US thyroid patients support and understand the disgust of our friends in Denmark, Norway and Sweden!

WANTED: YOUR BEFORE AND AFTER PHOTOS OF HYPOTHYROIDISM TREATMENT

I have started a page where you can showcase how you looked before the right thyroid treatment, and afterwards, here. Combine a photo of how you looked before treatment, and after treatment, into one JPG, and use the Contact at the bottom of any page on STTM to send me the photo, your first name, age (not required) and treatment. Let’s show the world what thyroid treatment can do for your mental disorder. 😛

ARE YOUR DUCKS IN A ROW?

Have you been doing your complete thyroid treatment protocol correctly? Because for most all of us, there can be several bases to cover to feel wonderful again. You will find the following information covered on an actual page on STTM, here, as well. Using the revised STTM book can be an important in-your-hand reminder, as well, of the bases you need to cover.

Numbers 1-6 below are key elements to feeling better again, and must be maintained, as well. You will be making a mistake if you underestimate the importance of these.
  1. Thyroid hormones: being on natural desiccated thyroid and finding the right amount, or the amount you can tolerate until you correct #2 and 3 below. (See Chapter 2 and 12 .)
  2. Adrenals: bringing cortisol to right amounts whether through the T3CM or HC ( Chapter 6 of the revised STTM book)
  3. Iron: you need optimal amounts, not just in range. (See Chapter 13)
  4. B12: should be in the upper quarter of any range. Lower and you could have symptoms which resemble hypo. (See Chapter 13)
  5. Vit. D: should be closer to 80 (We go by the Vitamin D Council. Addendum C in book)
  6. Better Absorption: Putting one tablespoon ACV or any acid in the drink you use to swallow your supplements will enhance absorption—key for the low stomach acid too many thyroid patients have.
 Once you have made SURE all the above is corrected and then maintained, and if you still have issues….then it’s time to look at these:
  1. Re-activated EBV (Epstein Barr Virus): very common for hypothyroid patients under stress. My Med Lab tests this. 
  2. Lyme disease
  3. Other viruses: get your doctor to identify and test any other potential viruses.
  4. MTHFR defect: look this up if you seem to need high doses of T3 for “resistance”, have high iron, hard time getting nutrients up, high B12….http://mthfr.net/
  5. Chronic inflammation: can be discerned by too-high ferritin or a CRP test. You need to get this down. Can affect many things in your body negatively!
  6. Candida: promotes inflammation!
  7. Blood sugar
  8. Sex Hormones: low levels can make you feel bad. Also look into PCOS.
STOP THE THYROID MADNESS book is now in SWEDISH, GERMAN and ENGLISH. Get yours here….or send one to your friend or family member and let it help change their lives!
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Check out this photo, about Vitamin D, 64 symptoms removed, and life after thyroid cancer~

OOPS. THIS GAL’S DOCTOR WAS A BIT CLUELESS…

Look carefully at the photo to the left. You will see the actual outline of this woman’s thyroid. It’s obvious. It’s swollen. A swollen thyroid is called a goiter, and can be due to an autoimmune attack of the thyroid called Hashimotos, aka thyroiditis.

Yet, this woman’s doctor insisted she just had a throat infection, gave her penicillin for 12 days, and the outcome?  It’s still inflamed and sore. Jeez, doctor!! WHAT were you thinking!  She states: I always feel something pressing down on my neck and food gets stuck and then I’m having a chocking session. CLEAR thyroiditis and a blind doctor!

Thanks to this gal’s participation in the Stop the Thyroid Madness Facebook groups, she knows the truth, is empowered, and is going to try and get the RIGHT labs and treatment this time! Her biggest challenge is where she lives–the UK with a very dark- ages medical system that worships T4-only and doesn’t get the efficacy of Natural Desiccated Thyroid. It’s not a pretty picture in the United Kingdom or a lot of European countries if you have thyroid disease.

VITAMIN D–DON’T DISMISS THIS IMPORTANT VITAMIN FOR YOUR THYROID HEALTH!

Vitamin D is considered a steroid plus a prohormone, i.e. it’s not yet a hormone, but has affects on real ones. And your body can get it from sunshine exposure, or you can supplement with it. Why is it a great vitamin? It helps balance out your calcium levels and bone density, can help lower stress and blood pressure, and promotes a good immune system.

Vitamin D is found in two forms: cholecalciferol (vitamin D3) which is made via skin exposure to sunlight, or ergocalciferol (vitamin D2). D3 is the natural form and why it’s often preferred for supplementation over D2. After vitamin D3 is formed in your skin or taken as a supplement, it is then metabolized into two different substances: 1) 25-hydroxyvitamin D (25(OH)D), known as calcidiol and your storage Vitamin D, and 2) 1,25-dihydroxyvitamin D (1,25(OH)2D3), known as calcitriol. The former is the Vitamin D you measure via blood.  Good information on both can be found in the abstract here.

So why bring it up?  First, it’s important for your thyroid, i.e. it has to be in sufficient amounts for thyroid hormones to work in your cells. And second, a huge body of thyroid patients find themselves with low levels of this important vitamin! How to raise it? It can take 10,000 IU’s of D3 daily. Some doctors even prescribe more and sometimes once a week in these very high amounts. Add an acid to the drink you use to swallow your Vit. D–like one tablespoon Braggs Apple Cider vinegar, or lemon juice. It will promote better absorption.

SHE ELIMINATED 64 SYMPTOMS THANKS TO NDT AND TREATING HER LOW CORTISOL!! 

Next time you hear that NDT is not good, think twice. Her name is Mary, and you should check out the 64 symptoms she eliminated thanks to NDT, here.  You will see that she’s still working on a few more, but the difference is stunning!

A TESTIMONY FROM A COLLEGE STUDENT OF HOW NDT CHANGED HIS LIFE AFTER THYROID CANCER (even more than being on T4 with T3!)

I’m a male college student and in 2008 I was diagnosed w/ thyroid cancer. Cancer aside, I was placed on Cytomel followed by Synthroid. When I asked my doctors for natural options they said there were no such meds. For four years I was a prisoner in my own body. I had rapid mood swings, I was always cold, had a lack of energy and worst of all dry skin. The dry skin became so bad that I started to develop cystic acne covering my entire back and many on my face–I had no confidence and work out 5x a week yet I was scared to take off my shirt. I knew that there had to be a solution being that I didn’t have any of these symptoms prior to getting my thyroid removed so I began to research. This website, Stop the Thyroid Madness, got me in the right direction as far as understanding the role o f T3 and T4. After many lies, and doctors who denied to write for Armour or Naturethroid, I finally found a woman who knew about the “madness”. I have only been on Naturethroid for one month and my TSH, T3 and T4 levels may be off but I feel like the old me again! I have energy, I have steady moods, I have less brain fog and my skin is finally producing oil again and my acne is almost cleared 100%! Thanks for your work your site had changed my life for the better!

DID YOU KNOW THAT THE STTM BOOK IS AVAILABLE IN ENGLISH, SWEDISH AND GERMAN?? A perfect gift for your friend or loved one who speaks any of those languages. Go here.

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We are sad at the passing of Edna Kyrie of the Thyroid History website

From Sheila Turner of TPA-UK:

Some of you, probably the majority of you, will have heard about Edna Kyrie of ‘Thyroid History’ fame website: http://www.thyroidhistory.net

It is with great sadness that I write to you  to let you know that Edna died earlier this week, following serious digestive tract complications arising from her MS diagnosis. Her condition deteriorated a lot this past year, leading to a couple of long hospital stays. She died at home in her London flat with her main carer and friend, Kieron. Edna was in her mid to late forties.

In 1985,  Edna was diagnosed with Multiple Sclerosis — a diagnosis she still questioned, right up to the day she passed away. In 1998 Edna also found out she had an under-active thyroid, it was this diagnosis that encouraged her to found the wonderful scientific web site ‘Thyroid Research’. She said: “I read a book on the thyroid and was amazed by how much could be affected by it, I decided to follow up the references at the back of the book, and so the project began.”Today, thyroidhistory.net holds over 1,200 abridged articles on the diagnosis and treatment of thyroid related illness, photocopied from books and journals in The British Library and scanned onto her computer at home. She said: “At one point I was spending £70 a week on photocopying. I just feel so passionately about this.” What has shocked Edna most, and what she talked about most animatedly, is the medical research by long-dead doctors that has been lost over the passage of time. Edna said “In the 1880s when they wrote about the thyroid they thought they’d found the elixir of youth. There is all this incredible work that had just been forgotten about.”The website sprang from a determination that the knowledge of thyroid function in many common illnesses is made available. Edna thought at the start that if she could just help one person it would be worth it, and she soon learned that she had helped many, many more than that – and will continue to help so many more in the future.

Edna’s health had declined in recent months and she was not getting to the British Library as much as she used to, but she continued adding to the website from a backlog of copied articles. She said “I worship The British Library and I feel I have this queue of long-dead doctors and physicians looking over my shoulder encouraging me,” and “This is what I have built my new life around — before all this happened I was a singer and a psychotherapist, I just can’t believe how much things have changed.”

Edna will be greatly missed, but her work lives on. I was fortunate enough to have met Edna and we have corresponded since. I first met her at Dr Skinner’s original IOP Hearing in London. Everybody found her to be a warm, kind, funny person who was totally dedicated to thyroid research and to make this available to all who will read it. I know that without her research, Thyroid Patient Advocacy would not be where we are today.

Edna and her work has been an inspiration to me personally. Thank you dear Edna. Details of the funeral will be posted as soon as possible.

Our condolences have been passed to Kieron Deahl, a very close and dear friend of Edna’s.

Sheila
Thyroid Patient Advocate
www.tpa-uk.org.uk

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