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15 Things which Thyroid Patients should teach their Doctors

Screen Shot 2015-08-07 at 4.28.31 PMMany thyroid patients will tell you they have, or have had, doctors they love! I, Janie, have had many of them.

But it doesn’t take away from the fact that those in a medical profession have been sorely lacking for decades about correct knowledge on how to diagnose and treat hypothyroidism or Hashimotos, besides have inappropriate familiarity about all the issues related to being hypothyroid. Even their knowledge on how to correctly read labwork has been lazy.

Because of that poverty of correct knowledge, patients were forced to take the bull by the horns and figure things out for themselves! Stop the Thyroid Madness, the flagship of “patient experiences and wisdom”, represents all that wisdom!

Here are 15 things that any thyroid patient not only has to learn, but needs to teach any medical practitioner the best way they know how:

1) My fatigue and weight gain is not simply because I need to exercise more and eat less.

Granted, we know that exercise and how we eat is important! But being undiagnosed hypothyroid, or poorly treated due to Synthroid or any other T4-only medication, or being held to the TSH, keeps many of us with a low metabolism. The latter results in very easy weight gain, or the failure to do the kind of exercise which would help us!

2) Depression is strongly related to continued hypothyroidism!

We know there can be a variety of reasons for depression, but for most thyroid patients, our depression is a sure sign that we are either undiagnosed due to the lousy TSH lab test, or undertreated due to being on only one of five thyroid hormones like T4-only, or being held hostage to the TSH, a pituitary hormone.

3) The TSH lab test has been a failure for too many years.  

Yes, though a seriously low TSH can detect if we have hypopituitary, for most of us, we’ve had a “normal” TSH yet obvious hypothyroid symptoms. Additionally, when we are optimally treated on Natural Desiccated Thyroid, T4/T3 or T3-only, our TSH lab test is always below range without one hint of bone loss or heart problems. We want to go by the free T3 and free T4, plus symptom removal and a good heartrate and blood pressure instead. //www.stopthethyroidmadness.com/tsh-why-its-useless

4) To figure out if I have Hashimotos,  BOTH antibodies labs need to be tested, not just one. 

To detect if we have the autoimmune version of thyroid problems, patients saw right away that one antibody could be high, but the other one not.  So we need both the anti-peroxidase AND the anti-thyroglobulin lab tests. And by the way, many Hashi’s patients soar on Natural Desiccated Thyroid if they raise it correctly. See #5.

5) Natural Desiccated Thyroid (NDT) has been changing patient lives for years now, just as it did for decades before Synthroid hit the market. 

Though some patients do better on T4-only meds than others…at first..there is simply too many reported experiences by patients for 15+ years that it’s not the way to go. And those same reports show that being on the five hormones that NDT gives makes much more sense.  Even adding synthetic T3 to synthetic T4 has produced better results.

6) I can’t wait six weeks before having a raise!

Thyroid patients found out the hard way that if they stay on a starting dose of NDT (which is usually one grain) longer than a few weeks, the feedback loop causes hypothyroidism to come back with a vengeance in some way or another. So we raise every two weeks and start slowing those raises in the two grain area or close to three to start finding our optimal dose. //www.stopthethyroidmadness.com/natural-thyroid-101

7) My lab results are not about being in the “normal” range.

This was a huge discovery by informed thyroid patients as they kept observing each others lab results for years: it’s about “where” the lab result falls that tells the story…not just because it falls in a suspicious “normal” range based on the testing participants the lab facility chose. //www.stopthethyroidmadness.com/lab-values

8) If I react poorly to NDT, it’s not because NDT isn’t right for me. 

Patients who have had problems with NDT found out that there are five correctible reasons for most of them:  a) being kept on lower doses far too long b) not raising high enough because of being held to the TSH range c) having low iron d) having a cortisol problem 5) having Lyme. This page explains: //www.stopthethyroidmadness.com/ndt-doesnt-work-for-me

9) Yes, there really is such a thing as adrenal fatigue/adrenal insufficiency/hypocortisolism.

Easily more than 50% of thyroid patients end up with a cortisol problem, either due to being undiagnosed for years thanks to the use of the faulty TSH lab test, or being put on only one of five thyroid hormones–T4. And to learn more about it, one of your doctor’s own colleagues has written a brilliant chapter as to biologically why we get low cortisol, found in the Stop the Thyroid Madness II book, chapter 15. And this:  //www.stopthethyroidmadness.com/adrenal-info

10) Saliva testing for cortisol is far more accurate than blood testing

Saliva is said to be testing one’s cellular levels of cortisol, plus it does so at four key times during a 24-hour period, which is important to know. And patients found that the results (from reputable companies) fit their symptoms! Whereas blood cortisol testing is measuring both bound and unbound cortisol, and most of the time does NOT fit the symptoms, showing high cortisol when we are really low, or vice versa. //www.stopthethyroidmadness.com/adrenal-info

11) If some or most of my saliva cortisol results are low, there are safe and effective ways to treat it. 

The adrenal area is one which thyroid patients took great time and care to learn, based on what we read from experts, plus our repeated experiences and wisdom. This is where our doctor, need to be open-minded enough to learn from Stop the Thyroid Madness, both on the website and in the revised STTM book, chapters 5 and 6.

12) If I have acid reflux or stomach problems, it’s usually due to low stomach acid caused by our hypothyroid state, not the need for Prilosec (Omeprazole). And some of us need to be off gluten, especially if we have Hashimotos.

i.e. what we need is to restore a better level of acid in our stomachs, which our hypothyroid state lowers–the latter which causes problems in absorbing vitamins and minerals. That’s why we need to put lemon juice or apple cider vinegar in the liquids we use to swallow our meds and supplements. And a large body of us with Hashimotos need to be off gluten.

13) I’m not stupid just because I didn’t go to medical school, plus I live in my own body. So I need you to see us as a team. 

Because of what Stop the Thyroid Madness gives me, both the website and the books, it’s important to me that you see us as a team–BOTH my knowledge and your own.

14) No, thyroid cancer is not the easy cancer.

Thyroid cancer patients hate their cancer as much as anyone does…plus it’s worrisome, surgery nor RAI is not a picnic, and recurrence is on our minds. //www.stopthethyroidmadness.com/2015/01/31/thyroid-cancer-easy-cancer-thyroid-cancer-patients-appalled/

15) My thyroid labwork should be done before I take my thyroid meds for the day. 

Patients discovered that the T3 is NDT will peak about two hours after meds are taken, then a slow fall. If patients are on T3-only, it’s a 4-hour peak. We want to measure what still lingers in us, not the peak or rise.

What else do you think our doctors need to learn?

JanieSignature SEIZE THE WISDOM

* Join the STTM Facebook page for daily information, tips and inspiration!
* Get your STTM books here and become INFORMED: //www.laughinggrapepublishing.com You can also consider buying them for your favorite doctor (and perhaps get reimbursed when you check out of his or her office after a visit.)

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Walter Reed Medical Center proclaims desiccated thyroid SAFE…and there’s more to the story!

CLAPPING HANDSPatients have known by their experiences the past 110 years that natural desiccated thyroid (NDT) was safe and effective.

Yet it took a recent study at Walter Reed Military Medical Center, and lead by the U.S. National Institutes of Health, to proclaim what patients already knew: Desiccated thyroid extract a safe alternative to levothyroxine in hypothyroidism, as reported on Endocrine Today. Good for Walter Reed Military Medical Center and Thanh D. Hoang, DO, the staff endocrinologist who reported it:

“At the end of the 16-week study, 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.”

In other words, those doctors throughout the years…and especially negatively-biased Endocrinologists…who have outright proclaimed that NDT was….

  • ineffective
  • dangerous
  • inconsistent
  • unnecessary
  • “fill-in-the-blank”

…might want to eat a bit of the dirt from that potted plant in their office’s waiting room.

And what’s the “more to the story”??

In all probability, there were several patients who had either low iron or a cortisol problem—a common problem for many hypothyroid patients who’ve remained undiagnosed with their hypothyroidism. And with either or both, patients don’t do as well on NDT until they optimize either. And once they do, patients have soared on NDT, as reported for more than ten years!

Also, the TSH lab test was used in this study, and if patients are kept in the TSH “normal” range, they don’t do as well ! Dosing NDT should have NOTHING to do with a pituitary hormone lab result, we have learned over and over.

Bottom line: we might have seen that 48% much higher if the above had been recognized. But frankly, the results of this study are still POSITIVE and underscore what patients have already known and experienced for a long, long time!! Hooray!!

DO YOU HAVE SPANISH-SPEAKING FACEBOOK FRIENDS?

WIth 20130611_191811the Spanish version of the Stop the Thyroid Madness book being out, I could use help in reaching folks who really don’t understand English well-enough to know why they are having problems with their thyroid treatment.

Please consider posting the following on your Facebook page to help reach your spanish-speaking friends from the misery of being undiagnosed or being on T4-only meds like Synthroid:

Pre-ordenar su copia de la versión española del libro DETENGAN LA LOCURA TIROIDEA: Una Revolución de Pacientes en Contra de Décadas de Mala Calidad !! http://www.stopthethyroidmadness.com/spanish/

EVEN WITH DAILY SUPPLEMENTATION, MY OWN VITAMIN D LEVEL FELL

I found myself with a Vit. D level of 45 two weeks ago. That was a shock considering I have been supplementing with 5000 IU’s almost daily and it was, in fact, lower that last time I checked. Sure, there have been intermittent periods where I would run out of my supplement, or forgot it on a vacation. But this was a drastic drop…considering. And my progressive doc wondered out loud if SUNSHINEsomething is going on out there, as she’s seen this with several of her patients.

Granted, we know that one culprit which is huge for thyroid patients is low stomach acid. But are there other causes? Possibly.

In 2011, the National Center for Health Data reported on 9 reasons your D levels can fall. They include living in higher latitudes, pollution, having darker skin, obesity, and getting older. Two other important reasons include gut problems or kidney/liver issues. i.e. if your gut is compromised due to low stomach acid, Celiac, or any other digestive/absorption issues, you will probably need to keep a close watch on your levels and supplementation. And a stressed liver is not helping you either. That’s where doctors will test your ALT and AST to gauge the stress level of your liver.

For me, I’m back on 10,000 IU’s daily.

WANT TO SEE MORE MEDICAL STUDIES WHICH SUPPORT WHAT WE ALREADY KNOW? 

STTM has a page showing several medical research studies which you might enjoy, and can use with your narrow-minded, research-obsessed doctor.

**Have you Liked the STTM Facebook page? You’ll get daily tips and information!

 

 

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Warning!! STTM is about bat-guano crazy conspiracy theorists…and more Thyroid Tidbits!

ANNOUNCINGACELLA’S NP THYROID IS ON BACKORDER  

It’s a back-handed compliment. i.e. Acella‘s brand of Natural Desiccated Thyroid has been in great demand! But…success can equal problems, because they weren’t keeping up…or that’s how we understand it. So when you go back to get a refill, the pharmacist may try to put you another brand if they are already out. So hang tight. Acella states that they will be back into better production by the end of April.

DO YOU REALLY NEED COMPOUNDED DESICCATED THYROID?

Progressive doctors have been having a love-affair with compounded medications for several years. And for some medications, as well as for patients who are sensitive or allergic to certain fillers, it makes complete sense! (Compounded means that the pharmacist “combines, mixes, or alters ingredients in response to a prescription to create a medication tailored to the medical needs of an individual patient”).

But…most thyroid patients are discovering that they really do NOT need compounded NDT and that is especially true for “slow release” compounded NDT.  First, compounded NDT is far more expensive than the prescription brands. Second, the T4 in desiccated thyroid is your “natural slow release” of T3 throughout your day. So it makes financial sense to go with the prescription brands if you have no sensitivities or problems with fillers. And even if you go with compounded….you don’t need slow-release!

YES, THE STTM WEBSITE HAS BEEN UPDATED, plus more pages!

In case you didn’t notice, there’s a new look to STTM. Part of it is because we needed STTM to be far more user-friendly on your cell phones. I think you’ll like what you see. You’ll also find links at the TOP of each page instead of to the left.

There are also new pages from the last several weeks: one on parathyroid issues, especially hyperparathyroidism (i.e. if you have high calcium levels, you need to read this page); another is an issues related to hypo landing page showing you several conditions which can outright be related to your hypothyroidism and you may not even realize it (like fibromyalgia); another about problems that can occur if you overeat high oxalate foods (as happened to ME!); how hypothyroid patients can have low stomach acid and its consequences (like acid reflux and poor absorption issues)….and you can always keep up with What’s New on STTM.

ALL THE BUZZ ABOUT MTHFR

If you haven’t heard about it, you probably will. Because lots of thyroid patients are finding themselves with a defect in a particular gene called the MTHFR, which is the acronym for “methylenetetrahydrofolate reductase” gene (methyl-ene-tetra-hydro-folate-re-duc-tase). This gene is supposed to make the MTHFR enzyme. But if there’s a defect, the enzyme doesn’t work right and you can be left with a multitude of health issues (or see them in your ancestors) including heart disease (and high homocysteine levels), breast cancer, other cancers, addictions, miscarriages, chemical sensitivities, IBS, strokes and so much more. Those with this defect can also find themselves with high levels of mercury, or iron, or other toxins. Go here to read what it’s all about.

BERBERINE. INSULIN RESISTANCE, and THYROID CANCER

Since it’s pretty obvious to me that I have insulin resistance (i.e. it takes twice as much insulin to do the job, which means more fat storage), I was pretty excited when I learned about Berberine. It’s a natural alkaloid salt found in a variety of different plants and it’s stated to make your insulin more effective, thus your blood sugar levels can come down. I notice that some folks are using it in place of Metformin, as well, and reporting better glucose levels. It’s supposedly been used for centuries in Ayurvedic and Chinese medicine.

***But there’s another interesting possibility about Berberine: studies have shown it to be effective in reducing thyroid cancer cells, here. Talk to your doctor about it before assuming you can use it for cancer in lieu of other treatments, please.

AND ABOUT THE TITLE OF THIS BLOG POST...

Bet ya didn’t know that STTM is bat-guano crazy, did ya?? lol. This misinformed comment was found as a comment of a random blog post, and tells me that some still don’t get that this isn’t about conspiracy or theory. This is about patients worldwide who have either found that T4-only meds weren’t doing the job in their own degree and kind, or….patients were getting bit in the behind years later thanks to the inadequacy of thyroxine. Even worse, doctor who have been diagnosing or treating by the TSH pituitary hormone were leaving patients sick!

So what you have on STTM is more than ten years of GOOD patient experiences, the good and the bad. LEARN from it, and expect to take it into your doctor’s office to help them catch up with us!

STTM BOOK IS COMING SOON IN SPANISH  

First there was English, then came Swedish, then came German….and later, you’ll see Spanish! I’ll announce it when it’s out. I also plan on updating a few parts of the current revised STTM English book by Fall–just some corrections here or there. For example, the current one states that the percent saturation should be 25 – 45% for women, but we know that most women, when optimal, fall somewhere around 35% and definitely not 25%. So I’ll correct that, because somehow, it didn’t get in Addendum C of the current revised edition! Get your book here…and consider two or three, because your shipping rate is much better. Give the extras to a friend or loved one.

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

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(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!

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