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Year: 2013

More BAD news if you are on T4-only like Synthroid??: It might cause Lung Cancer, says a study!

Lungs

After worldwide patient experience has revealed that T4-only treatment results in a slew of continuing hypothyroid symptoms, now we have a study which implies that T4-only treatment could be raising your risk of LUNG CANCER.

This complete study came out just last Thursday, August 8, 2013, in the Reproductive Biology and Endocrinology journal and it’s certainly not good news, if true, on top of what thyroid patients already know has been a failure in so many ways.

The Italian authors said the correlation between lung cancer and T4-only treatment was “significant“!

In other words, says the study, as hypothyroid patients raise their T4-only levothyroxine medication to chase continuing symptoms of hypothyroidism, it can lead to medication-induced hyperthyroid state, which in turns leads to an overproduction of oxidative stress.  The latter oxidative stress is a known cause of cancer and other chronic diseases. But with T4-use, it’s specifically problematic for lung cancer, implies the study.

Oxidative stress can be defined as a that which results in “significant decrease in the effectiveness of your iinherent antioxidant defenses, such as glutathione” (Wikipedia). And there are two main consequences:  your body doesn’t detoxify itself well, nor does it repair any damage well because of free radicals.

The study states:

The prevalence of breast, colorectal, gastric and lung cancer in 18 Italian Regions during 2010 was correlated with the sales of LT4 in 2009. The cancer prevalence was analyzed in women aged 30—84. This age range corresponds to more than 80% of the consumers of the drug and to about 99% of all malignant cancers. The correlation between sales of LT4 and cancers was determined with the technique of Density Ellipses. The age and smoking contribution for lung cancer was determined with the Sequential test.

It also adds:

Lung cancer was the only tumor found directly correlated with LT4 supplementation.

It’s particularly interesting to note that simply being hypothyroid results in increased oxidative stress, but the use of T4-only medications creates the same problem via a different route, explains the study. “LT4 can alter the oxidative balance in lungs and behave as a negative factor because of oxidative stress….” 

The authors conclude that “hypothyroidism might also be involved in the development of lung cancer”, but the study does send an alarming message about the correlation between T4 use and lung cancer, as well.

The website Green Med Info, which promotes natural and integrative modalities, goes further into the discussion about the problematic nature of treating hypothyroidism with T4-only, stating

One of the main drawbacks of administering T4 in isolation is the possibility that it will not convert adequately to T3, and will therefore ‘back up’ causing excessive T4 activity, i.e. hyperthyroidism. There is also the very real possibility that T4 will not only not properly interact with thyroxine cellular receptors, but will block out what remaining natural levothyroxine the thyroid is still producing (and whose conformational state is far more health-promoting), essentially acting as an endocrine disrupter at the very moment that it is acting as intended as a ‘TSH suppressor.’ This T4 blocking/endocrine-disrupting property of the synthetic form would also activate a negative feedback loop within the endocrine system, further suppressing remaining thyroid function, and resulting in the atrophy of the compromised thyroid, a iatrogenic ‘self-fulfilling prophecy’ if you will.

And they conclude: “There is also compelling research indicating that desiccated thyroid extract (Armour thyroid) results in superior clinical outcomes versus the synthetic hormone, especially as concerns improved body weight.” And of course, patients who have switched to natural desiccated thyroid (NDT) have reported FAR better results repeatedly! Brands are not limited to Armour. Other brands which patients like include Erfa, Acella (NP Thyroid), Naturethroid, Westhroid-P and more.

Message to those still using T4-only

Millions of hypothyroid patients have reported millions of prices in their own degree and kind thanks to their use of T4-only medications. Now we have a study that implies your risk of getting lung cancer is increased. What’s next?? It’s not a pretty picture, if the correlation turns out be accurate for some. Time to take a strong and open-minded look at what patients have learned.

ADDENDUM FROM JANIE: Please note that this study doesn’t say that every single T4 user is going to get lung cancer. My mother was on Synthroid her entire life, and though she had many miserable symptoms from it being a poor treatment for her, she never got lung cancer. It just seems to say that the researchers noted increased oxidative stress with T4 use, and they saw a correlation between that and lung cancer in some. Read the entire study information here and decide for yourself. 

 

 

 

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Followup to recent Wall Street Journal article–my video

Screen Shot 2013-08-07 at 6.56.40 PMIn yesterday’s blog post, I wrote about an article that appeared on the Wall Street Journal Online website on Monday, August 5th, 2013. I gave extra information that would have made this article far more timely and important.

And the more I thought about this,  it simply bothered me to no end. Sure, we’ve heard a lot this bunk before, but it’s time for doctors to STOP THIS THYROID TREATMENT MADNESS in their clueless view of their T4-only treatment patients as well as the inane use of the TSH lab test, which is LOUSY and has harmed patients since its inception in the early 1970’s!!

VIDEO REBUTTAL TO CERTAIN INFORMATION STATED OR INTERVIEW QUOTES in recent Wall Street Journal article: http://www.youtube.com/watch?v=ugQvmJ18b8c Share this where you think it will be influential.

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Wall Street Journal’s recent thyroid article: 13 ways it could have been SO MUCH better!

Screen Shot 2013-08-06 at 1.05.29 PM(This post has been updated to the present day and time! Enjoy!)

As usual, informed thyroid patients can only roll their eyes about the latest example of a watered-down, thyroid-themed article in the media. This time, it’s from Wall Street Journal Online and appeared Monday, August 5th, 2013.

Now on the positive side, the title looks good: New Call for More Thyroid Options. 

But let’s set it straight: this is NOT new! Informed thyroid patients have been clamoring about better treatment for more than a decade!!

I started the Yahoo Natural Thyroid Hormones group in 2002 as a way to begin the important discussion about the efficacy of Natural Desiccated Thyroid as a treatment for hypothyroidism over T4-only. The Stop the Thyroid Madness (STTM) site first went up in December 2005–a compilation of worldwide patient experiences which included lives being changed thanks to natural desiccated thyroid (NDT). The STTM book by the same name first appeared in 2008, and the revision in 2011. The STTM II book came out in late 2014. Today, there are numerous thyroid groups all over Facebook which have been extolling the virtues of better treatment.

Let’s break the article down and go into further detail, correction or clarification–all which might have made this a MUCH more informative and accurate article:

1) Grass roots patient-activist organizations….and the doctor-founded National Academy of Hypothyroidism, say that the current screening test for hypothyroidism leaves out some symptomatic patients and that the main medication used to treat patients, doesn’t always alleviate many symptoms.

True! And let’s be more specific about that so-called “screening test”: it’s the inane use of the TSH lab test which has been a monstrous screening failure! The TSH is a pituitary hormone, NOT a thyroid hormone! And it can consistently look “normal” for years (according to the parameter of an erroneous man-made “normal” range), yet we have raging hypothyroid symptoms…all the while the patient has to hear his or her doctor state they need to “exercise more and eat less”. The “main medication” is the all-too-often lousy T4-only medication like Synthroid, Levoxyl, Levothyroxine, Eltoxin, etc. Yet, a healthy thyroid makes FIVE hormones, not just one.

2) They are calling for doctors to be open to other therapies, including a combination of synthetic hormones and the use of natural, animal-based ones.

True. But though adding synthetic T3 to synthetic T4 is a huge step in a much better direction and can be applauded (and so can being on T3-only), a multitude of worldwide patient experience has found that Natural Desiccated Thyroid has given these patients even better results (in the presence of good iron and cortisol levels). Doctors need to listen to that!

3) Hashimoto’s Disease: A Primer (box on the left side of the article) 

What a perfect way to lower the quality of an article. As usual, it contains the dark ages information about the use of the TSH, and mentions the “common” treatment of T4-only. They might as well have inserted a primal on blood-letting.

4) [In reference to Dr. Ridha Arem’s correct comment that “There are so many unhappy thyroid patients,”] :  Many of his mainstream medical counterparts disagree. “The vast majority of people are fine on the standard therapy,” says Jeffrey Garber, an associate professor of medicine at Harvard Medical Center and chair of the American Association of Clinical Endocrinologists Thyroid Scientific Committee. Still, he says, “there’s a whole group out there who just thinks we’re clueless. 

Yup, millions of informed thyroid patients worldwide would definitely put you in that clueless category, Dr. Garber.

5) The wide range of symptoms, so similar to those of many other diseases, can make diagnosis tough. 

Totally untrue, say thyroid patients! Thyroid disease has a common cluster of symptoms in patients, which can include one or more of depression, fatigue, the need to nap, rising cholesterol, rising blood pressure, achiness, hair loss, weight gain, inability to lose weight, dry skin, dry hair, achiness, a low mid-afternoon temperature (below 98.6F/37C) and so many more symptoms.

Additionally, we have noted that if our free T3 is mid-range or lower, or our Free T4 is low, along with the above symptoms, it’s a sure sign that we are hypothyroid. Finally, family history underscores it for others, as can an ultrasound. It’s not that difficult when you understand the clinical presentation of hypothyroidism over an ink spot on a piece of paper!

6) Newborns and pregnant woman are routinely tested. Experts recommend screening all women over the age of 35 every five years. 

And how does that help when the testing/screening is with the inadequate TSH lab test, which we, as patients, already know leaves millions of us undiagnosed for years.

7) For treatment, guidelines generally call for the prescription of levothyroxine, a synthetic version of a hormone called thyroxine, or T4, which is produced by the thyroid. The gland also produces one other hormone, Triiodothyronine, or T3. 

A healthy thyroid gland produces FIVE known thyroid hormones: T4, T3, T2, T1 and calcitonin. So what’s the motive to prescribe only a storage thyroid hormone???

8) Most doctors, says Dr. Arem, generally prescribe T4-only medications. But such medications may leave some patients with lingering symptoms such as fatigue and depression and, in some cases, low T3 levels. 

He’s right! But there’s more to the story. Even those T4-only treated patients who see a removal of those lingering symptoms still end up seeing them crop up the longer they stay on T4! T4-only treatment is NOT a pretty picture.

9) Some patients go to alternative health professionals to get prescriptions for drugs such as desiccated thyroid extract (DTE) prepared from animal thyroid glands, which include a combination of T4 and T3.  

Thyroid patients are NOT just getting their natural desiccated thyroid (NDT is the common term, not DTE) from alternative health professionals. They are also getting it from open-minded and progressive regular doctors who LISTEN to their patients experiences!

10) The danger here, Dr. Arem says, is such patients could end up with an excessive amount of T3, resulting in symptoms of overactive thyroids, such as anxiety and a fast or irregular heart rate. He advocates a combination approach with amounts tailored to the individual.  

With all due respect to Dr. Arem, who is light years ahead of his colleagues in many areas, an excessive amount of T3 is not because of the use of NDT. It’s because NDT will reveal the problems of inadequate iron or inadequate cortisol–either of which can cause T3 to pool high in the blood and not make it to the cells. When patients correct those, they eventually soar on NDT. A newer page on STTM explains why NDT appears to cause problems.

11) Most studies looking at combination approaches show conflicting results. 

This is because those doing the studies made several key mistakes!! a) they dosed by the TSH, which leaves patients underdosed, b) they had no clue about the problem of inadequate levels of iron or cortisol, either which will leave a patient hypothyroid! Learn from patients!

12) The study’s authors said in a news release that it showed DTE may be a good alternative therapy for a limited number of patients. Harvard’s Dr. Garber says there may be certain subsets who are genetically programmed to respond to such combination therapies. 

That’s like saying a “limited number” of human beings and only those “who are genetically programmed” will do well with a healthy thyroid (NDT gives the exact same hormones as a healthy thyroid!! T4, T3, T2, T1 and calcitonin).

13) Dr. Garber, like many endocrinologists, uses T4 medications with the vast majority of his patients. Occasionally he’ll also use conservative doses of a synthetic T3 drug, but he virtually never prescribes the animal-derived form, he says, because of complications that could arise for women trying to get pregnant or in early pregnancy, as well as individuals with heart disease.  

And this is why most thyroid patients, when they report about their doctor experiences, find Endocrinologists to be the worst doctor they ever went to, using descriptive words such as arrogant, close-minded, blind. And by the way, even some heart surgeons know that T3 SUPPORTS healthy heart function, not hurts it! See the Medical Research page on STTM which supports what we already know by our experiences!

See the actual Wall Street Journal article here.

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* Did you know that the original and revised Stop the Thyroid Madness book is in four languages?? English, Spanish, German and Swedish. Wooo hoooo!!  And now, there’s a STTM II book with each chapter written by medical practitioners! 

* The STTM Facebook page is very active and informative about successful thyroid patient treatment! Come join us! Discussion groups listed on the Talk to Others page.

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Thyroid Patient Experiences vs Medical Research: do they jive or not?

Lightning2There was a long time in my life – more than 20 years in fact – that I suffered immensely, in spite of managing to live my life.  I paid hefty prices….and suffered constantly. You can read my story on STTM, and read even more details in the Introduction of the revised Stop the Thyroid Madness book.

Ultimately, science-based, mainstream medicine failed me…and others.

During those 20 years, and more so during the final ten years, I went from doctor to doctor. Thank the good Lord for insurance!! I visited premier medical centers and was subjected to numerous tests and medical procedures. One in particular resulted in a scar on my left bicep that I still carry today – an attempt to see if my extreme fatigue and weakness had an answer in a muscle biopsy.

But I got NO answers, and no relief. There was no pharmacological drug, nor any physical intervention, or a lab result analysis, or any medical diagnosis that changed my misery. I was left to deteriorate on my own. And that pushed me to apply for Social Security Disability. It was only through my own drive in discovering a better treatment I finally got well.

And turns out my experience, both the negative and positive, has similarities with millions of others, to their own degree and kind, as we discovered in patient groups all over the internet.

Reported patient experiences became the gold, NOT medical science

When I started the Natural Thyroid Hormones (NTH) group on Yahoo in 2002, oh did we learn!! (See STTM’s Talk to Others page). It was NOT science that helped us get better. It was learning from each other!! And all of that reported patient experience and wisdom birthed the STTM website, the STTM book, and many more groups. Because we were now getting WELL thanks to all those reported experiences. And others still are getting well–NOT because of “medical science”, but because we have been listening to each other’s experiences and wisdom!

Does “science” support the success we have achieved?  

At first, there was little science to support what we knew to be true by our combined and growing experiences in getting well. And we didn’t care. We were FINALLY getting well!

And as we’ve been getting well, we simply roll our eyes when we occasionally run into a “science snob” who looks down his or her intellectual stuffy nose with ignorant criticism like “It’s nothing more than “anecdotal BS”!!  i.e. you can’t POSSIBLY know what you are talking about if there’s no rigorous scientific analysis, debate, or documentation. 

**crickets chirping**

But it turns out there ARE medical scientific studies which support some of what we already know by our experiences. Many readers of Stop the Thyroid Madness may not have discovered this yet, but STTM has a page which lists medical studies which support what we already know. So take a peek.

On the other side of the coin, how science can be completely flawed

One 1993 scientific study titled “Levothyroxine Therapy in Patients with Thyroid Disease” is one of MANY studies that informed patients came to realize was faulty. The concluding paragraph stated:

With proper patient monitoring, levothyroxine replacement therapy should be effective, inexpensive, and free of complications. Recommendations for thyroid-stimulating hormone suppression with levothyroxine are based on riskbenefit considerations of the biologic characteristics of the thyroid disorder and the individual patient.

Effective? Free of complications? It didn’t take long for a growing body of thyroid patients, who were comparing notes with each other (besides looking back at the experiences of their relatives) to see that this was FAR from the truth for many of us, to our own degree and kind. I started compiling plenty of non-effective results plus complications of being on T4-only medications from the mouths of patients worldwide over the years.

And the longer we’ve been talking to each other, we also discovered that even when some T4-treated patients report good results on these meds at first…or for several years…they were coming into groups to honestly report seeing more and more symptoms of a poor treatment crop up the longer they stayed on their Synthroid or any other T4-only treatment.  It’s not a pretty picture overall.

(And by the way, natural desiccated thyroid is CHEAPER.)

Medical school training is just as much the problem as is flawed science

The Carnegie Foundation did a study about medical schools,  and in a particular paragraph, concluded (italics mine):

Medical training is inflexible, excessively long and not learner centered. They found that clinical education is overly focused on inpatient clinical experience, supervised by clinical faculty who have less and less time to teach and who have ceded much of their teaching responsibilities to residents, and situated in hospitals with marginal capacity to support their teaching mission. They observed poor connections between formal knowledge and experiential learning and inadequate attention to patient populations, systems of health care delivery, and effectiveness. Learners have inadequate opportunities to work with patients over time and to observe the course of illness and recovery; students and residents often poorly understand non-clinical physician roles. The team observed that medical education does not adequately make use of the learning sciences. Finally, time and again the researchers saw that the pace and commercial nature of health care impede the inculcation of fundamental values of the profession.

And sadly, patients will report problems with their doctors long after they attended medical school. Common descriptions include unteachable, clueless, rigid, narrow-minded, arrogant, and/or blind to the “clinical presentation” of their patients clear symptoms of continued hypothyroidism (for example, depression, anxiety, high cholesterol or other fatty acids, rising blood pressure, aches and pain, and so much more!) These same doctors will then bandaid these symptoms with anti-depressants, statins, pain meds, blood pressure meds and more.

But to be clear: patient reports don’t equal that they feel their doctors are purposely trying to do harm! Instead, thyroid patients clarify that even their most well-liked doctors just aren’t listening, or aren’t willing to learn from patient experiences, or feel threatened if a patient wants to guide part of his or her own care, or are condescending, as if a patient couldn’t possibly have a brain of their own about what they need. So patients leave…and search for a doctor much more willing to listen to patient experiences and wisdom.

Bottom line: some of reported patient experiences and science jive to some degree. For the rest, medical research studies need to catch up with the truth of our successful experiences, or continue to look stupid.

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How a hospital can royally mess a thyroid patient up!! And here’s what YOU can do to avoid this!

hospitalLinda was an informed thyroid patient. i.e. she knew that Natural Desiccated Thyroid (NDT) gave her the best results and had been on it for years and successfully. It changed her life in so many wonderful ways as a survivor of polio.

At 3 grains, it was an amount that removed her symptoms and helped so many issues that T4-only like Synthroid in the past did not.

But she was faced with major heart surgery–the replacement of her heart valve. The current one was quickly failing, and it became serious and necessary to get her into surgery!

And here’s what happened after she was admitted into the hospital:

  • She was immediately put on T4-only

    Their reasoning: her FT3 was too high. They failed to understand that her biological stress was probably causing pooling of T3–common in response to high cortisol, and the latter also causing more Reverse T3, the inactive hormone.. Patients will usually just lower the NDT, not get on T4-only, the latter which is a lousy treatment for all too many. And Linda had once been on T4-only and did absolutely lousy!

  • One of the surgical team doctors, while visiting her several days before surgery, defended the T4. 

    Linda reports that the doc seemed to have no knowledge that a heart needs T3 to function well.

  • She was told she could NOT bring her NDT with her and take it. 

    Linda reports here that she was treated like a moron who couldn’t possibly have a brain on what is best for her.

  • Another doctor gave in, but she was only allowed 1.5 grains  

    A much better treatment plan, says Linda, based on years of her NDT use, even though lower than she wanted. And she credits her insistence for this change.

  • She was put back on T4 for the surgery.  

    “I don’t do well on T4!!”, Linda exclaims. “Why do they think I should be on an inferior treatment when I need direct T3 the most in my recovery? They are so uninformed and brainwashed!”

  • Upon being sent to a nursing home for several days for further recovery, she was also forced to stay on T4-only.

    Linda had a friend come get her and take her home for the rest of her recovery!

She is now back on her NDT, though less until she recovers from the stress of her surgery, which can cause T3 pooling and rising RT3. Lesson learned, says Linda!

HOW TO AVOID LINDA’S EXPERIENCE

  1. Designate a loved one or a few friends ahead of time to agree to be your advocate if you have to go into the hospital. 
  2. Teach your advocates by letting them know what you are on today, why it’s a better treatment for you, and what you want to stick with (even if in lower doses due to the stress effect)
  3. Inform your doctor of what you want or don’t want in a hospital setting.
  4. Create a MEDICAL INFORMATION POUCH. Inform your advocates where this pouch will be.

WHAT SHOULD BE IN YOUR MEDICAL INFORMATION POUCH

Try and find a clear plastic pouch or envelope of some kind. If it’s not transparent, label it with you name and info, such as JANIE’S MEDICAL INFORMATION POUCH, 2013. Place it in a memorable place in your house to be taken to the hospital, if needed. It could even be placed in your vehicle.

Or, create a google doc with all your information, and designate someone’s email as always having access to this information.

Add the following information on a sheet of paper:

  1. the amount of Natural Desiccated Thyroid and/or T3 you are on. Suggest an amount to lower to during the stress of the hospital stay, and to be continued after coming home until better recovery. Explain how you dose it. Make it clear that you do not want to be put on T4 of any kind.
  2. the amount of HC/adrenal cortex/adrenal supports you are on and why.
  3. any other important meds you are on and why.
  4. the name of your doctor and phone number.
  5. the name of close relatives or other friends and phone numbers.

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20130611_192609HAVE SPANISH SPEAKING FRIENDS?? PLEASE POST THIS IN YOUR PRIVATE FACEBOOK PAGE: Porfavor ayudame a difundir que la version en español del libro STTM esta disponible. Porfavor peguen la liga de arriba en sus paginas personales de Facebook. No lo puedo dar a conocer sin su ayuda! //www.stopthethyroidmadness.com/spanish

It translates: Please help me to spread the word that the Spanish version of the STTM book is available. Please post the above link in your personal Facebook. I can’t spread the word (about the book) without your help.

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