Skip to content

Tongue-in-cheek yet sincere thankfulness from Thyroid Patients…and more

As the United States approaches Thanksgiving, it’s appropriate to offer our thanks as thyroid patients to the following:

THANKS go to the American Thyroid Association (ATA), who in their Nov. 10th email newsletter, had a NATURE-THROID desiccated thyroid ad right under their logo and gave us a great chuckle! Why? The ATA has always rigidly recommended T4-only medications and the TSH–both which have failed too many thyroid patients for sixty years. Loved your faux pas, ATA, in the name of making $$!! Are we going to see it again? Huh??

THANKS to Forest Labs, who though patients feel they ruined one of the oldest and best desiccated thyroid medications ever made when they reformulated it in 2009, gave thyroid patients the memory of a desiccated med far superior to press for from other pharmaceuticals in the future after the FDA gets their act together about the safety and efficacy of desiccated thyroid. (p.s. chew your Armour thoroughly before swallowing for better effectiveness, say patients)

THANKS to Erfa in Canada, who makes their own version of desiccated thyroid just like the old Armour, where we can do it sublingually and where it still has a touch of sugar to help with dissolution. Glory be to Erfa!

THANKS to the FDA, who had enough wisdom to allow thyroid patients to order Erfa desiccated thyroid from Canada–a far superior product than the lousy T4-only medications for a huge body of thyroid patients. We hope your wisdom continues.

THANKS to all the makers of important supplements–many which have played HUGE roles in the lives of thyroid patients trying to undo the damage done to us thanks to T4-only and the TSH lab test. They include high potency B-vitamins, selenium, minerals, sea salt, iodine, and so many more. We are behind you in the freedom to choose nutritional supplements without a doctor’s prescription.

THANKS to the growing body of doctors who have been listening to patient experience and email me of that fact. We bow to all of you who have LISTENED to the whole body of knowledge thyroid patients have learned, which is also Chapter 3 in the STTM book with more details.

****************************************

FULL BODY SCANS AT AIRPORTS: should thyroid patients be concerned?

If you are going to fly anywhere and are a thyroid patient, you may need to understand that you could be subjected to radiation in a full body scan. And since thyroid patients in various groups have expressed concern about the effect of radiation exposure on their own thyroids, this can be a concern.

Oh sure, John Pistole of the Transportation Security Administration says they keep us safe.  And the FDA website is saying that these X-ray scanners pose “very low health risks.”   But the FDA is also the agency who has always approved a certain kind of thyroid medication, T4-only, which has left millions of us with lingering hypothyroid symptoms for years, and which calls a medication which HAS worked for over 100 years as “unapproved”.

So, if you are going to fly anywhere while this controversial procedure continues, you might want to choose the intrusive pat-down instead, or look into a train.

***************************************

DO COSMETIC LASER DEVICES CAUSE THYROID PROBLEMS?

In the same vein as my comment above about radiation scans when you fly:  I received an email from a gal who feels that a cosmetic laser device has not only injured her eyes, but may be the culprit in the fact that she now has hypothyroidism and a pituitary tumor. And she’s not alone, as others are wondering the same thing with support groups on the net.  These laser devices are used to correct sun damage on your face, improve acne scars, improve rosacea, tighten skin, remove melasma spots, and even help with eyesight.  She called herself and others with damage from these devices “modern day radium girls” . If you want to be more informed, research this on the net and decide for yourself.

******************************************

SEND THE STTM BOOK AS A CHRISTMAS PRESENT

The publishing company will do the work for you, sending a book as a holiday present for to a friend or loved one who needs to read what patients have learned.  Included will be a holiday card with your name in it, or you can remain anonymous.  Go here.

*****************************************

HOW TO TACKLE A BAD COLD AND CONGESTION AS A THYROID PATIENT

A gal emailed me, asking if I knew of something that would help her terrible nasal congestion. She found out the hard way that using Afrin, a strong nasal spray, caused her thyroid to ache. I then recommended she look into a Neti Pot, which can do wonders to clear your compacted nose, and I faithfully use it if I do have congestion (which I did last week when I failed to take enough Vit. D at the onset of symptoms of an upper respiratory infection). Check it out here.  And when you first try it, don’t panic. Let it do its miracle, because it really works!

COMMON QUESTIONS and ANSWERS are here.

HOW TO FIND A GOOD DOC is here.

WHERE TO TALK TO OTHER PATIENTS is here.

CURRENT OPTIONS FOR GOOD THYROID TREATMENT here.

Senator John McCain–what in the HECK were you thinking?? Huh??

Now let me start this post by saying that Senator John McCain and Senator Byron Dorgan’s anti-supplement bill…yes, a dim-wit ANTI-supplement bill…was squashed for now because he backed down thanks to plenty of public protest.

And thank God, because it would have especially affected thyroid patients who have suffered thanks to Synthroid or other T4-only meds, and are working diligently to regain their health with their freedom in choice of important supplements, besides natural desiccated thyroid and T3.  Think selenium, iron, B-vitamins, Vit.  D, iodine, Grape Seed Extract, Isocort, St. Johns Wort, and a slew of other supplements we freely and wisely take to undo the damage done to us by our TSH-and-T4-worshipping medical establishment.

In case you didn’t know, McCain sponsored a bill called the The Dietary Supplement Safety Act (DSSA). It would have nullified the protection of supplements from the 1994 Dietary Supplement Health and Education Act (DSHEA). Those protected supplements are either those found in food without any chemical alteration, or those sold prior to 1994…i.e. it would somewhat stop the FDA from either banning those kind of supplements or reclassifying them as “drugs”.  And with the FDA being in a financial bed with Big Pharma, you betcha we would have seen those bans and reclassifications.

And what else might have happened? We would have lost our lower cost, safer, and more effective alternative to side-effect drugs. I have helped my husband lower his high cholesterol, high LDL and high triglycerides WITHOUT the nasty statins and WITH supplements.

I like how Dr. John C. Lowe put it in his latest newsletter:

We appear to have won this time around. But a price we must pay for continuing freedom in our health care choices is to keep our noses in the air. Before long, the stench of Big Pharma’s greed will waft down upon us again in the form of some legislator’s bill. When it does, we must pay another price to keep our freedom: that is to organize once again and deliver a resounding “No!” to Congress.

Want to read more about this?? Just google “mccain’s supplement bill” and get an eye-full.   And I hope to see you respond to this post with a list of IMPORTANT and LIFE CHANGING SUPPLEMENTS and how they are helping you.

*************************************

Are you from Europe and would like to see your own NTH group?? I’ve just started NTH EUROPE and if you live in Europe, you are invited to join.  Note that new groups can be slow to build, so put yourself on Daily Digest or Individual Emails and watch its growth.  We will be looking for level-headed moderators and your donation of good European information in the Files and Links.

Confessions of an Undercover Thyroid Advocate

The following guest blog post is written by Amy McMullen, who had undiagnosed & symptomatic hypothyroidism for 20 years due to the sole use of the TSH, resulting in multiple health problems. She is now treating per the guidelines on STTM including T3 for thyroid hormone resistance, adrenal support, and desiccated thyroid.

I found her story below as an undercover advocate fascinating,  and think Amy is caring and committed,  in spite of severe restrictions! Bless you, Amy.

I spend an inordinate amount of time these days contributing to a well-known online thyroid disorders forum I’ll call “Thyroid Health Forum” (not its real name).

It’s a tricky forum with draconian rules: they don’t allow you to post any links to resources, talk about where you get your online labs done, include quotes from studies, or post any names of thyroid advocates. You can’t use a username you’ve used on any other forums and you can’t mention using their personal messaging system.

I’ve received a few “infractions” from the ever-vigilant board “administrators” and “moderators” (never could color inside the lines, I guess) and have been warned to never, under any circumstances, use the words “Stop the Thyroid Madness” or any references to this website or book in my posts.

At more than one point I was ready to walk away and just give up on it.  How can you share your experiences when there were so many rules that seemed designed to inhibit a free flow of information, to the point of not being allowed to mention the title of a good book by name or type in the word Google?

But I would read the following posts submitted by desperate people and this would keep me coming back to try, somehow, to help:

  • “Hi, my doctor says my labs are all normal but I’ve got so many symptoms, I can hardly function…”
  • “My doctor says that free T3 and free T4 testing is not useful, that my TSH is normal and that unless my TSH is high he won’t order any antibody tests…”
  • “My doctor says that my TSH is too low and wants me to cut back on my thyroid hormones, but I know I will start feeling bad if I do this… Help!”
  • “I am taking Synthroid but I feel terrible and my hair is falling out and now my doc wants me to take an antidepressant…”

You see, I was in this very same boat for far too many years. About 20 years back I started noticing symptoms:  fatigue, depression, menstrual irregularities, and dizzy spells. I went to see my doc who did the usual TSH test and when it came back “normal”, prescribed antidepressants. The antidepressants did help, but my menstrual problems intensified and other symptoms increased until I finally underwent a hysterectomy for dysfunctional uterine bleeding. Shortly thereafter, I collapsed with heart irregularities and autonomic nervous system dysfunction in the fall of 2006.

I went to over 10 different specialists spending thousands of dollars for medical bills with no real answers–just a lot of shrugged shoulders and a fibromyalgia diagnosis.

It wasn’t until my mother was hospitalized and routine blood testing came back with a TSH of over 6 that I looked again at my own thyroid. My TSH was never above 3. I had one free T4 test done following my initial collapse but, again, all tests were flagged “normal” and thyroid was passed over once again.

But a search about TSH lab ranges led me to Mary Shomon’s About.com articles, and while she seemed to be stuck on the idea that 3 was an acceptable number for the top of range for TSH, based entirely on the American Association of Clinical Endocrinologists recommendations, I finally found the Stop the Thyroid Madness site and learned otherwise.

It was here that I learned about other testing like free T3, free T4, thyroid antibodies, vitamin and ferritin levels and, very importantly, that the TSH should be the LAST test done for diagnosing hypothyroidism instead of the ONLY test. I finally caught on to how the medical establishment has failed miserably to adequately diagnose and treat hypothyroidism. I felt both incredibly empowered and very, very angry.

I quickly delved into the thyroid forums to share what I’d learned and to learn from others. The first forum I found was the aforementioned  “Thyroid Health Forum”, and since this is one of the best-known, it is where many of the newbies, like me, find themselves. There were both natural and synthetic hormone proponents on the board and the advice ranged from very good to quite bad. I soon found there were better forums like Realthyroidhelp and the natural thyroid hormone Yahoo groups that had really smart people who were happy to share resources and information that was truly useful. I spent a lot of time on these and learned a great deal.

But for some reason I couldn’t seem to leave the “Thyroid Health Forum”. The people who stumbled on there seemed so lost and I felt compelled to impart what I had learned to them. I would offer alternatives to the synthetics and explain why natural desiccated thyroid (NDT) was a superior treatment option and, more importantly, that they did have an option for their treatment, despite what their doctor told them. I’d relay what I had learned from other boards about access to NDT during the shortages.

When I figured out I had adrenal fatigue and later thyroid hormone resistance as a result of being undiagnosed for so long, I started relaying information about these issues to the many who were having difficulties getting optimized on their hormone replacement therapy. I found it to be both rewarding and enormously educating for myself as I would spend time researching questions that were asked about supplements, lab tests, and studies. I was not allowed to post links so had to summarize things I had learned and this taught me even more. The main messages I pushed were (and are):  get the right labs done, learn how to interpret them correctly, be your own advocate, know your treatment options, and don’t implicitly trust doctors.

I will continue to contribute what I’ve learned to the “Thyroid Health Forum”. So far I’ve managed to fly under the radar and play, however grudgingly, by their rules. I figure if I can get just one or two people to question the present thyroid clinical guidelines, as written by our friends at big pharma, I’ll be more than satisfied. I actually believe that by getting good information out there to as many sufferers as possible, we may create a groundswell of people who will no longer accept being dismissed as depressed complainers by their healthcare providers. And this is one more way we can help enact real change to the currently abysmal medical practice of thyroid diagnosis and treatment. Well worth it in my book!

*******************************

Latest news from RLC: Shipments of Naturethroid are beginning Monday, January 4th and the first two weeks with backorders going out ASAP.  Medco should have some by the end of January. Their Patient Information Line: Naturethroid/Westhroid: 877-600-4752

Thyroid  patient guest posts can be read about here: /writing-a-guest-blog-post-on-sttm/

Want to honor someone who has helped you?? See the blog post below and thank someone.

NOTE: if you were receiving email notifications about these posts,  the company doing them is out of business. Instead, use an RSS Feed.

Ten reasons you may still feel bad: health is like a chocolate cake

Screen Shot 2015-08-13 at 2.45.21 PM

(This post has been updated to the present date and time! Enjoy!)

I frequently bake chocolate cake for birthdays in my family. Of course, part of it is so I can lick the beaters and bowl. **blush** But in my family, we are chocolate lovers. So any cake I bake is THE BEST cake in world.

Why? Because of the combination and/or amounts of several important ingredients that make any cake “great”… by anyone. Leaving out any of those specific ingredients, or putting in too little or too much, could result in a cake less than great.

And your health and feel-goods as a thyroid patient are like a good cake: the combination of ingredients and amounts that you have to get right.

Below are ten healthy “ingredients” to investigate to make sure the “chocolate cake of your life” is great!

1) INGREDIENT: The right amount of thyroid hormone medication

One of the most common mistakes made by patients and their doctors is simply not raising high enough to find the right amount. I have a friend who was stuck on 3 grains of Natural Desiccated Thyroid out of habit. Now 3 grains might be right for some, but it wasn’t for her–she continued to have hypothyroid symptoms out of habit. I finally convinced her to talk to her doctor. Labs showed her free T3 was just a few points over mid-range, and having a free T3 towards the top seems to work better for most. That will also push the TSH very low…and without a problem. So she did raise, and it finally did the trick. She now had the perfect chocolate cake of health!

2) INGREDIENT: Optimal B12

Sammy felt like she was doing great on her thyroid meds, but something was off. She had occasionally weakness, a tingling in her fingers, fatigue, and sometimes walking problems. Turns out her B12 levels were not optimal, which can be common for those undiagnosed hypothyroid or on T4-only. She got a B12 test, learned where patients are optimal, and corrected it.

3) INGREDIENT: Optimal iron

Did you know that like most nutrients, being “in range” has nothing to do with anything?? It’s “where” you fall that counts. And thyroid patients who’ve been undiagnosed, undertreated due to being held hostage to the TSH, or treated with T4-only, tend to acquire inadequate levels of iron. Symptoms can include fatigue, depression, weakness, achiness, breathlessness or others.  Learn all about iron and where iron is optimal.

4) INGREDIENT:  The right amount of stomach acid via ACV or lemon juice

Hypothyroid patients can have low hydrochloric (HCL) stomach acid levels. That not only contributes to acid reflux (yes, reflux can be because of LOW iron), it means you don’t absorb nutrients well (including low B12 and iron mentioned above). As a result, it’s crucial to give that acid back to yourself.  A tablespoon of Apple Cider Vinegar or lemon juice mixed in water and taken twice day helps many. Or try taking Betaine, which is HCL in pill form, or any other quality HCL or digestive product.

5) INGREDIENT: Optimal levels of B-vitamins

Did you know that when you become healthier due to the right thyroid treatment, your demand for B-vitamins can increase? Yessiree. B-vitamins along with CoQ10, help drive the production of your internal cellular energy. Though a variety of foods give B-vitamins, patients will often supplement with a good whole food B-vitamin or one brand or kind of their choice.

6) INGREDIENT: Avoidance of gluten

Now, patient experiences have revealed that not everyone needs to remove gluten from their diet. But a very high percentage of Hashimoto’s patients (the autoimmune version of thyroid disease) find they do a great deal better if they do. Why? Gluten can raise one’s antibodies, as well as damage your stomach lining and intestines, thus reducing absorption of many key nutrients. If you have Celiac disease, removal of gluten is also important.

7) INGREDIENT: Sex Hormone balance

When your thyroid or adrenals get out of balance, your sex hormones can follow suit, from estrogen dominance to low testosterone.  When estrogen dominance occurs, you can feel depression, fatigue, and sore breasts.  Low testosterone can equal lower energy and mood. That’s why many thyroid patients also treat their hormonal levels, if needed, to feel better.

8) INGREDIENT: Iodine plus other minerals

Turns out that not only are your thyroid hormones in need of iodine to even exist, patients have reported iodine supplementation to help them feel better. Women like using it to rid themselves of fibrocystic breast disease. We do recommend doing on Iodine Loading Test to first see if you need it, though. Most do, but some may not. Other minerals are important too, like magnesium, potassium, sodium and more.

9) INGREDIENT: A good doctor

Yes, we certainly know how hard it can be to find an informed and open-minded doctor. And because of that, some patients are forced to self-treat, and we don’t begrudge that choice at all. If you do want to find a better doctor, here’s a page to help you do so. It may not always be easy where you live, but can be possible.

10) INGREDIENT: Knowledge

This is where Stop the Thyroid Madness (STTM) comes into play. STTM is the flagship of patient experiences and wisdom, ready for you to absorb all its excellent information and regain your health and well-being again, besides help teach your doctor. There are now TWO STTM books to learn from, too.

P.S. My real chocolate cake: I think cake mixes are just as good as homemade. I use Devils Food Cake a lot, but have used all the varieties for fun. But the icing is ALWAYS homemade: cream one stick butter, add about 4 cups powdered sugar, 1/2 cup cocoa, then cream or half-n-half.  Shake in a liberal amount of sea salt. Add two tsp. vanilla.  Beat, beat.  Taste. Modify as needed. YUM. There are other great icings you can make! 

JanieSignature SEIZE THE WISDOM

** Come join the STTM Facebook page for daily inspiration and wisdom!