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10 Gray Areas about Thyroid Treatment and related issues: The Anomalies

Screen Shot 2015-09-01 at 2.34.02 PMEver heard of the word “anomaly“? It means that which deviates from what is standard, normal, or expected. You could also call it the “gray areas”.

And when you’ve observed and compiled thyroid patient experiences and wisdom as long as I have, one thing certainly stands out: though something may be true for the majority of thyroid patients, it may not be true for others.

Here are 10 of those anomalies when it comes to thyroid treatment and issues related – – all based on repeated observations: 

 

  1. HASHIMOTOS and GLUTEN:

    Though the majority of Hashimoto’s patients seem to need to be off gluten to control their antibodies and improve nutrient absorption, there have always been a small percentage of those who have never had problems with consuming gluten….ever.

    i.e. though their once-high antibodies revealed their Hashimotos state, eating gluten didn’t make them worse, nor did gluten consumption bring their antibodies back up after they had gotten them down due to a better thyroid treatment or use of iodine. (Yes, iodine use has helped many Hashi’s patients bring their antibodies down).

  2. SYNTHROID OR OTHER T4-ONLY MEDS:

    Though we’ve observed that the biggest body of Synthroid or T4-only users see the failure of their treatment either from the beginning or within the first few years (in their own degree and kind), there is a small percentage who may not see the failure for 15, 20 years or more, and an even smaller body who feel they never have problems from it (though they usually do and don’t recognize them as problems related to being forced to live for conversion alone).  

    Informed thyroid patients have observed that in fact, some T4-users convert to T3 (the active hormone), better than others…for awhile.  Other T4 users may never have needed treatment at all. My sister-in-law is an example. Her doctor once found her TSH was high, so he put her on Synthroid. She seemed to do fabulously for about 4 years. Then she stopped and was fine. Looking back, there’s a good possibility that chronic stress was pushing her cortisol high, which promotes a hypothyroid state and higher TSH…thus the appearance of thyroid disease. When the chronic stress is resolved, the “hypothyroid state” goes away.

  3. ADRENAL ISSUES:

    Though we’ve observed that at least 50% or more of thyroid patients end up with an adrenal problem due to being on the inadequate T4-only or other stressors to their adrenals, there is another body of patients who never seem to acquire adrenal problems yet had every stressful reason to. 

    Who knows why some escape it. My mother was on Synthroid her entire adult life and paid horrible prices, yet I saw no evidence of an adrenal problem. I was the same–had a million reasons to see my adrenals become sluggish, yet it didn’t happen. Something about our biological or genetic makeup in response to stress? Our way of handling stress? Supplements we took?

  4. HOW MUCH NDT CAN BE TOLERATED WITH LOW CORTISOL

    Though a large body of low cortisol patients can only tolerate “up to” 1 1/2 grains of NDT without having problems, if they go higher, they start to see either pooling of T3 or rising RT3. A smaller percentage can go much higher without noticeable issues, and another small percentage can’t even go as high as one grain without seeing those issues. But they are there.

    When one’s cortisol is a problem, especially when it’s too low, NDT at certain raises will reveal the low cortisol. i.e. NDT is not the problem; it’s revealing the problem via the raises. //www.stopthethyroidmadness.com/ndt-doesnt-work-for-me

  5. WEIGHT GAIN:

    Though it appears the majority of thyroid patients will either gain easy and/or have trouble losing weight, there is a smaller minority with hypothyroidism who stay thin.

    There are so many possibilities as to why some hypothyroid patients stay thin, ranging from not being one who uses food to treat emotions…to all the genetic differences in how each of us burns fat or what one craves. http://www.theguardian.com/world/2012/jul/17/food-metabolism-calories-obesity-diet

  6. WOMEN VS MEN AND HYPOTHYROIDISM

    Though the majority of hypothyroid sufferers appear to be women, there are a body of men who will find themselves in a hypothyroid and/or adrenal state, as well. 

    There is speculation that because of women’s hormonal changes, it makes them more susceptible to having a thyroid problem. But men get thyroid problems, too, so the problems of toxins in our environment and/or low iodine may be other issues affecting both males and females, even if females with their hormonal issues get it more often.

  7. OPTIMAL AMOUNTS OF NATURAL DESICCATED THYROID (NDT)

    Though it appears that a large body of thyroid patients, when optimal, end up in the upper two grain area AND HIGHER…there is a much smaller body who are even higher than the 3-5 grain area, and the very minority are optimal less than 2 grains. 

    If a line is drawn with the least amount of NDT on the left, and the highest amount of NDT on the right, and with a dot representing each person on an optimal amount of NDT, the majority of dots start to fall in the upper 2 grain area and into the 3 grain area. A lesser amount of dots fall in the 4-5 grains area, and fewer dots are higher. Same with the other direction, Much lesser dots are in the lower 2 grains area, and even less in the 1-2 grain area. Of course, this observation is only true when participants understand what “optimal” really means (which many do not) and is explained on the Natural Thyroid 101 page.

  8. DOCTORS

    Though patients have reported over the years that the majority of their doctors are overtly clueless about either diagnosing or correctly treating their thyroid disease, there are a small and growing percentage of medical professionals who are bucking the trend and taking the time to listen to informed patients and Stop the Thyroid Madness, both website and books. 

    And honestly, we all play a role in strengthening that trend by politely yet confidently being your own best advocate, learning what patients have learned, and having the courage to explain it to your doctor, besides make it clear that “this” is how you want to do “that”. If a doctor will not listen, we put our money into the hands of those who will. A doctor works for YOU, not you for him or her. Here’s how to find a good doc.

  9. PROGESTERONE

    Though many (not all) females see their sex hormones mess up in conjunction with having hypothyroidism…and thus, can need progesterone supplementation to counter estrogen, there is a risk of having the progesterone convert to too much cortisol and causing miserable symptoms of high cortisol!

    In the hormonal pathway of conversions, there are some who convert progesterone to cortisol far easier than others. So each person has to figure out how much progesterone they can handle, which is probably individual. If cortisol is low, though, progesterone converting to cortisol can be a slight boon! 🙂

  10. ACID REFLUX/GERD

    Though it’s very common for doctors to prescribe acid reducers like Prilosec or over-the-counter antacids like Tums for your GERD or Acid Reflux….in reality for thyroid patients, turns out they have LOW stomach acid causing the reflux, not high. 

    Though antacids will seem to relieve the symptoms, it’s actually making the low stomach acid now worse, which in turn makes your ability to absorb nurtrients worse. Read about this issue right here: //www.stopthethyroidmadness.com/stomach-acid

JanieSignature SEIZE THE WISDOM

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A continuing MEDICAL SCANDAL which is just too close to home and I grieve. WAKE UP DOCTORS!!

Tonight was a beautiful night to do my aerobic walking. It had poured this afternoon for 30 minutes, so the early evening air was slightly cool and very clean.

And on the last leg of my journey, I stopped and said to Carlin as she was walking out of her front door “Where you have been lately? I haven’t seen you out walking with your husband.”

Carlin and her husband Clint are probably in their late 70’s–both vibrant individuals and frequent walkers in the same area.

“Well”, she said wistfully as she glanced down the street I had just walked, “I have to go in Monday for a Pacemaker.”

Turns out she has fibrillations and other heart issues, and even walking from her bedroom to her living room can exhaust her.  I told her how well my mother-in-law has done with her pacemaker. She told me she’d be in the hospital for at least 3-4 days for the surgery and observation.

And as we were chatting over the low white fence, I couldn’t help but notice the scar on her neck–the same scar my own mother had from the removal of her thyroid years ago.  And the rest of Carlin’s story, and the reality of her story, made me want to punch the nearest electrical pole in disgust.

Carlin’s thyroid was removed over 40 years ago.  She remembers being on “2 grains of something”–clearly it was desiccated thyroid. And she says she felt really good. But she wasn’t on it long, as her doctor removed it and put her levothyroxine over 30 years ago. You know, that “new and modern” T4-only CRAP which doctors fell for like the blind following the blind beginning in the 1960’s until today. (The story behind the introduction of T4 onto patients in the early 1960’s is in Chapter One of the STTM book)

So I knew. Her heart troubles could be one of the many side effects of the inferior treatment of T4-only medications (which also include Synthroid, Levoxyl, Eltroxin, Oroxine…all of them). My own mother suffered the same fate while on Synthroid her entire life. And patients chat about this all the time on thyroid groups–heart issues while on T4.

I started probing. She has had issues with high blood pressure. Another typical side effect of the crap T4-only medication, and which is removed with desiccated thyroid. She has had issues with depression–another typical side effect of the crap T4-only medication, and which is removed with desiccated thyroid. She talked bitterly about the slew of medications she’s had to be on for years to counter all her problems, and which had given her bad side effects.

And the next worse thing she told me? She had acid reflux so bad a few years ago that they did surgery on her stomach. She had surgery for a condition which is VERY common with thyroid patients who are on T4 meds–low stomach acid from a lower metabolism, which causes acid reflux. i.e. a symptom of continued hypothyroidism which is CORRECTED when on desiccated thyroid.

It was hard to contain myself. Here was this vibrant, life-loving, intelligent woman who has been on T4-only for over 30 years and has endured health problems, surgeries, side effects from all sorts of money-grubbing pharmaceutical pills, and now, has to go in Monday for a pacemaker. And in all probability, most of what she has gone though could have been prevented if some doctor had been WISE enough to keep this woman on desiccated thyroid.

I am livid and sick to my stomach.

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  • Are you chewing up your Armour or Naturethroid? It will make the treatment far better, as it will release the desiccated thyroid from the excess cellulose.  If you are on compounded, you need to tell the pharmacist to stop using cellulose as a filler. On Erfa? You can do it sublingually.
  • If you are reading this right on STTM’s blog, and would like to be notified of each blog post, just sign up to the left and under the links.
  • Have you done labs and found yourself with high RT3? Get off Selenium for the time being, as it can help convert T4 to the RT3 along with the other reasons you make too much.
  • Want to spread the word about far better treatment? T-shirts and bumper stickers are here.
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10 reasons many thyroid patients are still frustrated, angry, and sick

 

Screen Shot 2015-06-12 at 1.21.49 PMUpdated in 2015:

It’s a continuing travesty, and you see it in patient groups.

i.e. many patients still find themselves sick and disabled, stumbling miserably from one uninformed doctor to another…in spite of the wonders of natural desiccated thyroid, the testimony of changed lives, the education of patients thanks to the STTM website & book, and a small but growing body of wise doctors who seem to be “getting it”,

So what’s the problem?? It lays with our doctors and the entire medical profession.

  1. Heavy-handed control over your medication:

    You go to pick up your prescription, and find your medication has been lowered by your doctor without your agreement or knowledge, as happened to Terry here (scroll down to find her post).

  2. Ignorance about adrenal insufficiency and treatment:

    You clearly have an adrenal problem, and one doctor dismisses its existence, another doctor poo-poos the saliva test, another doctor tells you cortisol supplementation is dangerous, another doctor thrusts all his herbal supplements at you, another doctor thinks that 5 or 10 mg cortisol is enough…and on and on and on.

  3. Thinking that falling in the range is optimal:

    If a lab result within those numerical boundaries, which are based on a set of people a laboratory picked to come up with the range, says I’m normal, WHY do I still have issues??

  4. Dismissing you:

    You are wise thanks to reading, researching and living in your own body, yet your doctor calls you a problematic patient on your charts, dismisses you, or gets angry.

  5. RT3 huh?

    You have strong suspicions that your Reverse T3 is too high thanks to low cortisol or low iron or Lyme or undiagnosed gluten issues, etc, yet this doctor refuses to test you, that doctor says an RT3 excess is rare.

  6. Look at me! Look at me!

    You make an appointment with that great doc who has a fabulous website/book and who shouts that he uses desiccated thyroid with a big smile…yet some or all of the above and below occurs with him/her or his “trained” associates.

  7. Continued worship of the TSH lab test:

    Too many doctors still think the TSH lab test is from God Almighty. So when you finally start to feel well on desiccated thyroid with a TSH at zero or below…WHAM…you must lower your meds because you are somehow “hyper” in spite of no symptoms to match whatsoever and improvement in our bone density and heart health.

  8. Pharmaceutical addicts:

    You mention your lingering hypothyroid symptoms, and you are bandaided with anti-depressants, anti-anxietal meds, statins, BP pills, pain tablets, acid reflux pills, calcium for your thinning bones…instead of understanding from your doctor that these are ALL side effects of poor thyroid treatment.

  9. The country you live in:

    The desperation of UK thyroid patients is deep thanks to a thyroid association and a College of Physicians which tightens the screws if a doctor dares to prescribe a life changing medication with T3 in it.  Or just as frustrating, having a government which forbids desiccated thyroid to arrive to you in the mail, or like Denmark, refuses to dispense it.

  10. Reformulations and Big Pharma apathy:

    In 2009, then Forest Labs turned one of the most popular and effective desiccated thyroid brand, Armour, into a pill with too much cellulose and too little sucrose, causing a massive return of symptoms in many.  RLC also reformulated their Naturethroid to some degree, and though some patients still do well on it, others did not anymore. Erfa made some kind of change in 2014 which they denied, yet certain patients all over the world reported new problems they had never had before. You are left wondering WHAT is going to happen next!!

And there are more reasons you might want to bring up in the Comments part of this post.

So you see, it’s no wonder so MANY patients feel forced to self-treat, yet they are also condemned for doing so.

All-in-all, we still have a way to go, baby, and especially with the doctors we try so hard to get help from…but can’t.

P.S. Are you brave? Walk into your doctor’s office with the STTM shirt. And here’s how to find a potentially better doc. 

 

28 replies

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! 

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