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The Problem that Aging Hypothyroid Patients Face and How to Deal With it

Perhaps because millions of baby boomers are hitting their “senior citizen” ages, we are seeing an increase in statements by doctors, websites, and pharmaceutical reps implying that seniors should not have T3 in their treatment like NDT (Natural Desiccated Thyroid) or synthetic T3, calling it “dangerous”.

So I hope you are as impressed with the words below of this wonderful 72-year-old lady named Pat as I was…because her experience refutes the growing and ridiculous fallacy that T3 is globally and inherently “dangerous”.

I am 72 years old and up until four years ago, I was on Synthroid for over 30 years. Back then, I noticed my hypothyroid symptoms about six years after my second child. But if I’m honest and look back on my life, I now know that even as a teenager, I had brain fog….actually pretty serious brain fog. But I learned how to cover it up…

During all this time, I was diagnosed with multiple problems (which are typical for too many people on the poor treatment with T4-only or those undiagnosed): fibromyalgia, high cholesterol, high blood pressure, arthritis in my fingers, fatty liver syndrome and more. 

I also had the inflammatory disease called sarcoidosis in one nerve and in my lungs. I can’t actually connect sarcoidosis to my hypothyroidism and poor treatment with Synthroid, even if hypo people can report seeing increased inflammation. But it did happen when I was taking Synthroid. I had to take prednisone to beat it back and have been in remission for 15 years now.

But the bottom line is that for all those other issues mentioned above, I used to take multiple medications to treat all of them.

And guess what? Changing to Natural Desiccated Thyroid (NDT) four years ago took away all the above issues I was having, meaning I was also able to get off most of my prescription meds. I have less fatigue. I now have the flexibility of a 40 year old. The arthritis I had in my fingers just went away. I don’t need cholesterol or blood pressure meds anymore.

I sometimes add in compounded T3 if my RT3 (reverse T3) inches up.

My latest doctor now takes Natural Desiccated Thyroid after she saw how well I was doing. She has hypothyroidism and Hashimoto’s. We share a lot of ideas on how to conquer this disease.

My husband often goes to my appointments and says he does not understand a thing we discuss. I gave my doctor my copy of the “Stop The Thyroid Madness” book.  Interestingly enough, i knew when I went to my doctor that she used to recommend Synthroid, but also recommended herbs and other things to help with this disease. She was open to change, I think, because of her own experience.

So I think I blew their office up on my first appointment. I came in with all my labs and history. It was a 3-hour appointment with 2 people plugging in my info – my doctor and her assistant. It was later that I realized, when she asked me how I took my NDT, that she had switched to an NDT herself!

On our last appointment when we were talking about my slowly rising antibodies she told me that hers were in the thousands (my mouth dropped) and that she was taking 6 grains of her NDT. I’m thinking of recommending that she take LDN (low dose naltrexone) as I have heard it can reduce the antibodies.

Bottom line, it wasn’t staying on Synthroid that changed my life. It was moving over to Natural Desiccated Thyroid that has direct T3 in it. And in my opinion, my experience tells me the drug companies are lying! They want to keep people unhealthy so they will buy their drugs and then buy more drugs to take care of the damage the first drugs caused.   ~Pat

Here are some of the crazy issues seniors face (and there are more):

1) Medicare in the United States dropped all NDT’s from their Part D formulary—i.e. they won’t be paid for if you rely on Medicare. Armour on page 2, Naturethroid on page 16, NP Thyroid on page 17, Westhroid and WP Thyroid on page 29. See here.  Luckily, most prescription NDT brands are not that expensive anyway. Armour did go up, while the others stayed less expensive like NP Thyroid. Some use the prescription comparison called GOOD RX to find the best price in your city. 

2) Medicare in the US states “….the serum TSH test is reliable, valid, and acceptable to patients.”   To the contrary, patients of all ages have found it to be the most ridiculous test to either diagnose or treat by. It should always be about clear symptoms along with the free T3 and free T4, plus about where the latter fall in those so-called normal ranges. This is why you HAVE to be informed and be prepared to stand up for what is right and wrong. Read http://stopthethyroidmadness.com/tsh-why-its-useless There is also a complete chapter against the lousy TSH lab test in the STTM II book, and written by an MD! THAT is a chapter your doctor should read. 

Even worse, the ATA (American Thyroid Association) has stated that the target serum TSH should be 4-6 mIU/L in hypothyroid individuals age 70 or older.  That is in spite of the fact that so many of us at ANY age can have raging hypothyroid symptoms even with a TSH in the 2’s.

3) Or take the British Thyroid Association (BTA), which has stated that British thyroid patients shouldn’t be put on any thyroid meds whatsoever until their TSH is over 10, and that seniors should have a TSH around 4-10…in spite of the FACT that no matter what age, we can have raging hypothyroid symptoms even with a TSH in the 2’s–symptoms which UK doctors may blame on something else!!  Equally as bad, the UK National Health Service only endorses levothyroxine, and refuses to provide T3 to patients anymore.

4) The American Thyroid Association (ATA) states “As with the younger patient, pure synthetic thyroxine (L-T4), taken once daily by mouth, fully replaces the function of the thyroid gland and successfully treats the symptoms of hypothyroidism in most patients”  YET, we know that’s a joke. Time to inform whomever you can that a healthy thyroid does NOT make the human body solely depend on conversion of T4, a storage hormone, to T3. A healthy thyroid gives some direct T3 to counter any issues with conversion.  Read http://stopthethyroidmadness.com/natural-thyroid-101

But you CAN bypass this craziness, say informed seniors, with these steps

  1. Finding the right doctor: As with any age, senior patients state they all-the-more need to DO THE WORK to find a smart doctor who WILL let you be on T3 or NDT, and will NOT go by the lousy TSH lab test. It can be work, but it’s possible to find one. http://stopthethyroidmadness.com/how-to-find-a-good-doc
  2. Understanding the iron and cortisol issue: Seniors who have either been undiagnosed or on T4 for years say it’s extremely important to check iron and cortisol levels, since they can be off from all the years of no treatment or a poor treatment with T4. If they are off, they can cause reactions to T3 or NDT, causing the misinformed doctor to proclaim “See, I told you so”, when in reality, reactions to NDT or T3 are revealing inadequate iron or a cortisol issue. They will need to be treated. See http://stopthethyroidmadness.com/iron-and-cortisol
  3. Commiserating with other seniors: If you are OVER 60…consider joining the Facebook FTPO 60-and-over discussion group and see where others have found a good doctor. (FTPO stands for For Thyroid Patients Only) https://www.facebook.com/groups/FTPO60andover/ NOTE: you canNOT be approved if the admins can’t discern that your age fits this group, or we can’t see either your wall posts or friends list–the latter to know you aren’t a spammer.
  4. If you have to go in the hospital…have an informed family member or friend) who will advocate for you about your current NDT or T3 treatment. Too many patients have reported they were taken OFF their needed T3 or NDT and put on T4-only…and they regret not bringing their own meds or having an advocate.
  5. Keep a document stating what thyroid meds you are on, and why, that your advocate can have access to.

To read more: https://stopthethyroidmadness.com/thyroid-patients-getting-older

To get the very important STTM Books: http://laughinggrapepublishing.com …. because YOU have be informed!! If we put all our apples in a doctor’s cart, the risk is high we’ll stay sick or poorly treated. We have to be prepared to guide our doctors!

 

 

 

 

Here we go again, thyroid friends: Endocrinologists wear their pointed DUNCE hats.

Duncecap

Ah me.

Ever heard of Clinical Thyroidology?

It’s a physician-targeted publication by the American Thyroid Association (ATA). The ATA states they are the “leading organization devoted to thyroid biology and to the prevention and treatment of thyroid disease through excellence in research, clinical care, education, and public health.”

And a Letter to the Editor in the December 2013 publication of Clinical Thyroidology only underscores why so many thyroid patients report that they…

  1. Avoid Endocrinologists like the plague for the treatment of their hypothyroidism.
  2. Can hardly contain their disgust about Endocrinologists they have seen!

The letter is based on the March 2013 study I have mentioned before, titled “Desiccated thyroid extract compared with levothyroxine in the treatment of hypothyroidism: a randomized, double-blind, crossover study.” It was done by the Department of Endocrinology at Walter Reed Military Medical Center and headed by Thanh D. Hoang, DO and associates.

The objective of the study was to investigate the effectiveness of DTE (acronym for Desiccated Thyroid Extract, which is more popularly termed Natural Desiccated Thyroid for thyroid patients) compared with L-T₄ (more popularly known as T4-only for thyroid patients).

At the conclusion of the 16-week study, they found that…

34 patients (48.6%) preferred DTE therapy, whereas 13 (18.6%) preferred levothyroxine; 23 (32.9%) did not specify a preference, he said. Further analysis confirmed those who preferred DTE lost even more weight over a 4-month period.” i.e. the patients who preferred it “lost 4 lb during the DTE treatment, and their subjective symptoms were significantly better while taking DTE as measured by the general health questionnaire-12 and thyroid symptom questionnaire (P < .001 for both).”

Yet the study concludes: “DTE therapy did not result in a significant improvement in quality of life”.

And why did the study conclude there was no significant quality of life improvement? Is it possible that this study was flawed in ways they don’t understand…

Two easy answers:

  1. Patients canNOT be held hostage to the TSH lab test (which the study did for those participants) if we want to find that “significant” quality of life improvement!   When thyroid patients are at their very best with desiccated thyroid, they end up finding their TSH is below the so-called “normal” range, and without one iota of “hyper-like symptoms, i.e. no bone loss or heart issues”. (Hyper symptoms will only occur if there is an undiscovered or untreated cortisol or iron issue. See #4 below).
  2. We have to have optimal cortisol and iron levels with desiccated thyroid to achieve that “significant” quality of life improvement!

Back to the Letter to the Editor….

Doctors David S. Rosenthal, MD and Kenneth H. Hupart, MD proceed to present misinformed criticism and obtuse conclusions. The last part of their letter states the following…and I have bolded what I’m going to respond to:

…..Such nonphysiologic changes in serum T3 [serum T3 rose 23% and 36% in the participants] after DTE administration and resultant risks have long been known (2) and are the subject of concern (3). 

 

Exploring a role for DTE in the treatment of hypothyroidism with a well-designed, blinded, randomized clinical trial is laudable. However, when evaluating a therapy for a condition that affects millions of patients and for which an effective treatment already exists (4), this clinical trial should be powered and designed to detect adverse consequences. When the goal is physiologic replacement, care also needs to be exercised that normal physiology is restored. The study of Hoang and colleagues is provocative, but it does not achieve the minimum standard required to alter current clinical practice.

And my response to what I bolded:

  1. Risks? Concern? When are the risks and concern going to be mentioned about T4-only medications—the latter which forces us to live on ONE hormone, in spite of the fact that a healthy thyroid would be making FIVE. Where is the concern about the fact that a huge body of patients worldwide have continuing hypothyroid symptoms in their own degree and kind, either at the beginning of T4-only treatment, or the longer they stay on it? To the contrary, WE have concern when our doctors repeatedly ignore or blame those clear symptoms of continued hypothyroidism on other issues!
  2. Why are you so concerned about a higher FT3?? Thyroid patients have been doing fabulously, and have seen their lives change, on desiccated thyroid for over a decade now, and especially when we find our FT3 in the upper quarter of the range. Before that, there were a good sixty years of near-exclusive desiccated thyroid use! A higher range FT3 has done nothing more than strengthen our hearts, lower our cholesterol and blood pressure, rid us of depression and anxiety, improved bone strength, helped us lose weight, taken away the need to nap, improve our gut health, given us back our lives…and so much more.
  3. Can you be SO blind as to think that T4 treatment is that “effective”? Are you that destitute of observation about the clinical presentation of your T4-treatment patients who, sooner or later, complain of depression, rising cholesterol, higher blood pressure, aches and pains, hair loss, gut problems, the need the nap, heart problems, anxiety, weight gain and more symptoms of a POOR treatment?
  4. Have you not figured out that “adverse consequences” on desiccated thyroid, or even T3-only, are related to either inadequate iron and/or a cortisol problem? Patients are so FAR ahead of you in knowledge about the problems that cortisol and iron problems can cause with desiccated thyroid…and what to do about it. Once we correct those, we SOAR on desiccated thyroid.

A better way to look at the Walter Reed study

Nearly 49% preferred desiccated thyroid! That is nothing to sneeze about! It means something. It sends the beginning of the right message. And yes, it would have been a far greater percentage if those in the Endocrinology department had understood why it’s important NOT to go by the TSH, and why the participants needed to first be properly screened for their iron and cortisol levels, then property treated! And by the way, lab results have NOTHING to do with just “falling in the normal range”.

To all thyroid patients and friends worldwide:

Sadly, we all know that the majority of Endocrinologists we have seen wear Dunce hats. Of course, there are some exceptions in the Endocrinology field! We applaud those few courageous Endocrinologists who have dared to listen to our experiences and positive clinical outcomes.

But too many remain in a stubborn, dark world of their own, represented by the comments above—a mindset which only keeps us sick.

Your solution? Give your money elsewhere!!! Give your money to medical professionals who live in a lighter world and have an understanding of the efficacy of Natural Desiccated Thyroid (NDT), or even T3-only use, and who will let you teach them about the problems of cortisol and low iron, how to treat both, and how to read labwork (as the book will also help you do). P.S. Spanish in on sale for a limited time.

Seize the wisdom,

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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