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Feel better on T4 than you did on Natural Desiccated Thyroid?

Occasionally, hypothyroid patients will exclaim with conviction and truth that they outright feel better on Synthroid or Levothyroxine (T4-only meds) than they did when they tried Natural Desiccated Thyroid (NDT) or even T3-only.  And we believe them.

But…there is an explainable reason which does not mean T4-only is better for you. It really isn’t. Bear with me and read on…

Years ago, as many of us were starting on NDT after being on T4, we were seeing our lives change in a huge way, far more than T4 did! It was like a miracle! Those five hormones really made a difference.

But some others were having problems when raising something so miraculous for others. Huh?? We didn’t get that.

It took awhile longer to finally see why and to answer the “huh?” i.e. we began to see that there were three strong and correctible reasons why someone was not seeing the miracle of NDT as others were, and instead, were blaming the NDT (or T3) and moving back to T4-only…

The three main and correctible reasons why NDT, which gives all five thyroid hormones, seems to fail…

1) NOT BEING “OPTIMAL” WITH YOUR NDT DOSE (it’s NOT about just being in range and not about being held hostage to the TSH)

We all have had a tendency to believe that our doctors know what they are doing with NDT or T3. But, the majority do not. They tend to leave you on too-low doses, and/or pay attention to the lousy TSH. Thus, due to the natural suppression of the feedback loop (hypothalamus to pituitary to thyroid), you will get worse on those lower doses, sooner or later. i.e. you will get more hypo, and/or have rising adrenaline, cortisol, anxiety or other. And because of that, some exclaim “NDT didn’t work for me!” and they rush back to T4-only.  But NDT, with all five thyroid hormones, could have worked well IF you had known to be more optimal. Optimal puts the free T3 towards the top of the range and the free T4 mid-range, and puts the TSH below range…all three…and removes all symptoms. What amount does that is very individual—some start to achieve that in mid-2 grains, others are in the 3-5 grain area, others may be higher.

What if you tried to raise to be optimal, but had worsening problems? Read #2 and #3 below.

2) NOT BEING OPTIMAL WITH YOUR IRON LEVELS (it’s not about just being in range)

When this is brought up to patients who once tried NDT and failed, they will exclaim with all sincerity “But my iron levels were great”. We know that a very small percentage may have had good iron. But what is common with the majority is they did NOT have good levels “Falling in the normal range” does not equal a good level of iron. It’s WHERE one falls that tells the story.

For example, with two types of ranges for serum iron (NOT ferritin):

a) When the range is approx. 40?155: women who have optimal serum iron tend to be close to 110, or 109, or 108, etc. They are NOT in the 90’s and definitely not lower when optimal. Men tend to be in the upper 130’s.
b)  When the range is approx. 7-27: women are optimal around 23ish; men are towards the top.

If they are lower than the latter examples, it messes up the ability to raise NDT and feel great without issue. Why? Inadequate iron levels tend to raise the reverse T3 (RT3) as one is raising their NDT.  As the RT3 goes up due to inadequate iron, you will feel worse. And because of that, some exclaim “NDT didn’t work for me!” and they rush back to T4-only…but if they had had optimal iron, NDT WOULD have worked…as long as they also had optimal cortisol (See #3 below) and were working to find their optimal dose of NDT (see #1)

See more details about iron here: http://stopthethyroidmadness.com/ferritin

3) NOT BEING OPTIMAL WITH YOUR CORTISOL LEVELS (it’s not about just being in range, and it’s NOT about blood cortisol)

We noted years ago that at least 50% of those with hypothyroidism had a cortisol issue as revealed by saliva, not blood. What does a cortisol issue mean? Either their cortisol was too high (due to the stress of being undiagnosed, poorly treated, or being on T4) or was too low (due to the stress of being undiagnosed, poorly treated, or being on T4), or had both high and low (due to the stress of being undiagnosed, poorly treated, or being on T4).

And what happens with a cortisol issue when you are trying to work with NDT? Either RT3 will go too high (the inactive hormone), or one’s T3 will pool in the blood and not make it to the cells, or both…and you won’t feel well or have bad reactions like excess adrenaline, anxiety, shakiness, feel-bads.

And because of having a cortisol issue, some exclaim “NDT didn’t work for me!” and they rush back to T4-only…but if they had…

a) done the 4-point saliva test, not blood
b) compared the saliva results it to the lab-values page (it’s not about that normal range)
c) CORRECTLY treated it (see this page, plus Chapter 6 in the updated revision STTM book if saliva is VERY low, which also applies to Adrenal Cortex),

….they would have soared on NDT…along with good iron and being OPTIMAL on NDT (or T3)

Note: it’s always about the results of a saliva test, NOT blood cortisol.

Bottom line, it’s not as simple as “feeling better on T4”. It’s more about that you are NOT experiencing the side effects that you did on NDT from any of the above three problems, which were all correctible. That is different.

“That all sounds like too much trouble–I’m staying on T4-only!”, you may be exclaiming….

There is a big problem with that reasoning that I hope you will be open to….Namely, T4-only outright…

  • CAUSES low iron
  • CAUSES a cortisol problem
  • CAUSES many other issues like lowered B12, lowered Vitamin D, rising blood pressure, rising cholesterol, depression, anxiety, heart issues, bone thinning, chronic pain….and more. The individuality is in who gets which…but T4 users do get problems of their own kind, sooner or later.

Please note that the above is not an empty strong opinion. It’s based on years of reported patient experiences from many who were on T4! i.e. most of the following hypothyroid symptoms were experienced by T4 users!! They were still hypo!

Now you may state “But I know people on T4 who do not have those problems!”.

First, some outright DO have some of those problems, but don’t realize it or they deny it (while others see it in them). Adrenal issues, even those denied, can make certain people awash with defensiveness, argumentativeness, denial, anger, paranoia towards others observations, low patience, moodiness, etc.

Yes, some on T4 do, in fact, do better than others. But you know what we have observed? The longer they stay on T4-only, the more problems WILL, in fact, raise their ugly heads eventually…like either adrenal issues, or low iron, or low B12, or depression, or rising cholesterol, or rising blood pressure, or heart problems, or dry skin and hair, or chronic pain, or bone loss, or rising illnesses…..on and on. Forcing the body to live for conversion alone backfires….sooner or later.

Summary: A working Natural Desiccated Thyroid, or adding T3 to that T4 as a second choice and getting those frees optimal, is a much better way to go than being on nothing but T4, according to years of worldwide patient experiences

A working NDT gives you all five thyroid hormones, and does NOT force you to live for conversion of T4 to T3 alone, i.e. some of NDT is direct T3. Additionally with T4-only, some people have genetic mutations which hinder the conversion of T4 to T3 and may not realize it.

There is a good reason that millions of patients found out that T4-only is not the way to go for many reasons, and NDT is the way to go if you correct the reasons you did NOT to do well...or even adding T3 to your T4 in an OPTIMAL amount. But you will still need optimal iron and cortisol!

P.S. The above three reasons are the most common for not doing well on NDT (or T3) and should be considered first. A 4th less common reason: chronic inflammation of any cause. Read about inflammation. If this is true for you, the sad part is that T4-only will also backfire, as it raises RT3.

Mold exposure can also effect conversion.

Click on the graphic to order an excellent saliva cortisol test.

101 replies

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!

 

 

 

 

42 replies

7 examples of buffoonery from The Endocrine Society of Australia about desiccated thyroid

The Endocrine Society of Australia (ESA) came out with their final position paper on Natural Desiccated Thyroid. Ready to throw up at what many hypothyroid patients will state is overt ignorance and condescending arrogance?? Are we not surprised??

Below are 7 excepts from this position paper.

Please note: the following terms are referring to the same product: desiccated thyroid, thyroid extract, NDT, natural desiccated thyroid. By prescription, it’s usually porcine, but there are over-the-counter bovine versions. Thyroxine refers to T4-only, aka levothyroxine, one of five thyroid hormones and a storage hormone alone. In Australia, common brands are Oroxine, Eutroxsig and/or Eltroxin. 

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

1) “Desiccated thyroid or thyroid extract is not a pure product, not approved by the TGA [Therapeutic Goods Administration], not available on the PBS [Pharmaceutical Benefits Scheme], not produced by a pharmaceutical company, not subject to existing TGA regulations, has limited quality control, and is marketed as a “bioidentical hormone”, while “bioidentical” has been determined by the FDA in the USA as a marketing term.”

Now who wouldn’t want their meds to be pure?? But wouldn’t you love to know what their definition of pure is in their swipe of desiccated thyroid?  But ultimately, this negatively pudgy paragraph is only a set up for the rest of the paper, which is full of baloney statements.

2) “Is the reason some people fail to have complete relief of symptoms when tests show normal levels simply because there are other causes of fatigue, depression, and weight gain that are mistakenly attributed to the thyroid? Could a placebo effect explain the better relief of these symptoms from thyroid extract?”

Condescending ignorance to the max, say patients. For one, we know that “falling in the normal range” has nothing to do with it–it’s about where we fall in those ridiculous normal ranges that does have something to do with it.

And gee, funny that with an optimal amount of desiccated thyroid or T3 (along with good iron and cortisol levels, which is crucial), that “fatigue, depression and weight gain” goes away as reported by patients for YEARS.

And the TSH lab test, which we know is one of the labs being referred to, is useless while on desiccated thyroid–i.e. optimal, life-changing amounts of desiccated thyroid nearly always push the TSH quite low, which has NOT caused bone loss or heart problems (as a low TSH with Graves disease does). To the contrary, the right amount of desiccated thyroid has REPEATEDLY been known to improve bone and heart health in measurable outcomes.

Finally and more egregious, to use “placebo effect” as a way to explain the numerous and common positive effects patients get on desiccated thyroid is the height of condescending arrogance, many patients would exclaim.

3) “Despite claims of proponents that desiccated thyroid or thyroid extract are superior to thyroxine or combinations of T4 and T3 for most people with hypothyroidism, no controlled clinical trials have been published, and most endocrinologists are concerned that superiority is due to a placebo effect or an effect of overtreatment.”

Claims?? Since when are CLEAR and MEASURABLE health changes on desiccated thyroid by Australian thyroid patients (and worldwide) simply “claims”?? They include lowered cholesterol, better blood pressure, improved bone density, less weight gain (and in some, weight loss)…besides the obvious reported improvements in depression, better energy, softer skin and hair, removal of pain and so many more results.

And once again, the condescending conclusion that if one feels better on thyroid extract, PLUS has measurable changes, then SURELY it has to be in their heads and nothing going on physiologically. Let’s see, I’ve been on NDT for 15 years now, and if this logic is maintained, I have somehow continued to simply “delude myself” for a decade and a half that I have felt much better in my thyroid treatment THAT long…andddd somehow manipulated the measurable results in my health.

4) “Thyroxine is “Monitored; accurate and consistent “; Thyroid Extract is “Monitored; may be inaccurate or inconsistent” “

Yawn. The same weak and unfounded conclusions about desiccated thyroid we’ve heard before. Since when is giving us back all five thyroid hormones “inaccurate” or “inconsistent”? If it’s inaccurate or inconsistent, why have so many seen their lives change on NDT as they find their unique optimal amount, and for years?? If thyroxine is so wonderful, why do millions report continuing or worsening symptoms on the “accurate and consistent” thyroxine?

Oh wait, all of you whose lives have changed are just fooling yourself with placebo outcomes….

5) “The controversies surrounding the safety and efficacy of “bioidentical hormones” such as desiccated thyroid or thyroid extract illustrate the need for further scientific and medical scrutiny of these substances. Until such studies are completed, physicians should exercise caution when prescribing “bioidentical hormones” and counsel their patients about the controversy over the use of these preparations.” 

Really?? Is it SAFE to be on only one of five thyroid hormones when there are numerous reasons why the conversion to T3 can be blocked, either from the beginning or the longer someone is forced to rely on conversion alone??  See those reasons on this page.

Is it SAFE on thyroxine when so many see rising cholesterol, rising blood pressure, bone thinning, heart problems, and/or a lowered immune function?? The “controversies” are those manufactured by clueless Endocrine Societies, NOT by thyroid patients who worldwide have had lives changed on desiccated thyroid if they are allowed to find their optimal amount (which has to have good iron and cortisol levels).

And by the way, there is ALREADY science about the efficacy of NDT or T3 in one’s treatment…BESIDES that fact that a huge growing body of thyroid patients are reporting lives changed in totally positive ways.

6) “In general, desiccated thyroid hormone or thyroid extract, combinations of thyroid hormones, or triiodothyronine [T3] should not be used as thyroid replacement therapy.”

In other words, as the most damning, cruel and ignorant part of this statement, it’s saying that we, the Australian Endocrine Society, don’t give a damn if you are suffering on thyroxine…don’t give a damn if you have genetics which prevent the conversion of T4 to T3 and thus might need T3-only to reclaim your health and well-being…don’t give a damn if you have high RT3 on thyroxine that being on mostly T3 would lower…don’t give a damn if there are a huge growing body of thyroid patients whose lives have changed on thyroid extract (of which many changes ARE measurable)…and don’t give a damn that a healthy thyroid also gives people direct T3 and does NOT force people to live for conversion alone.

Oh and remember the reasoning above that desiccated thyroid is not pure–implying that thyroxine is…yet now we have a widening of the cruelty by lassoing in triiodothyronine (T3) as a product which IS approved by the TGA, yet now is also not recommended??

7) “A registry of adverse events related to the use of bioidentical hormone preparations, including desiccated thyroid or thyroid extract, should be supported by the TGA and could be managed by an external organization, as the TGA does not regulate or monitor these compounds.”

At face value, registering adverse events to any drug is a good thing.

Yet, we KNOW for a fact that most “adverse events” with desiccated thyroid are due to the FAILURE of doctors or research studies to understand that patients have to have the right amount of iron levels or cortisol when raising NDT to avoid those “adverse” reactions….just as patients should NEVER be dosed by the TSH “normal” range, which leaves patients underdosed and thus, continued or growing symptoms of hypothyroidism which could be termed “adverse events”.  Other situations which can cause “adverse events” with NDT include Lyme disease, chronic inflammation, and high heavy metals, of which of course, clueless organizations would simply blame the NDT instead of understanding the results of Lyme, inflammation and/or high heavy metals.

To see this position paper in its entirety: https://www.endocrinesociety.org.au/ESA_Position_Statement_%20Thyroid-Extract.pdf

Rattle, thyroid patients!! Speak loud and clear. Send the URL to this blog post to your private Facebook pages. https://stopthethyroidmadness.com/2017/06/27/7-examples-australian-endocrine-buffoonery/ Make this information even better by your informed comments here. Don’t be silent!!

BEST LIST OF HYPOTHYROID SYMPTOMS on the net (of which many occur while on thyroxine): http://stopthethyroidmadness.com/symptoms 

WHY T4-ONLY HAS RUINED MILLIONS OF LIVES over the decades: http://stopthethyroidmadness.com/t4-only-meds-dont-work

WHY DESICCATED THYROID or even T3 added to T4 has changed lives and how: http://stopthethyroidmadness.com/natural-thyroid-101

TWO MOST WIDELY READ and LIFE CHANGING THYROID BOOKS: http://www.laughinggrapepublishing.com 

43 replies

LYME SUCKS!! In Loving Memory of Paige Adams, FNP, B-C

Paige Adams, FNP, B-C UPDATED(Paige Adams died Sunday night/early Monday morning, due to her Lyme disease. And if you didn’t know her, I want you to.

In honor of Paige Adams, the Lyme Warrior….)

When I was contacting certain medical practitioners in 2014 to be in the STTM II book, one that I knew I wanted in there was Paige Adams.

Paige was a Nurse Practitioner with a fabulous reputation among patients as owner of The Center for Proactive Medicine in Nashville, Tennessee.

And Paige herself was a fighter! She had problems for many years and successfully treated her hormone imbalances like PCOS and infertility, Crohn’s disease, severe adrenal fatigue and Hashimoto’s disease. Perhaps that is why she specialized in treating difficult cases at her clinic…

And oh was Paige a fun and extremely loving individual, as so many others know! In our many email correspondences, she would start her message with things like “Hey Lovely Lady!” or “Hey Gorgeous!” or “Hi Ladybug!”. Or she would end her emails with “Much Love n Blessings”.  She always made me chuckle with her exuberant, sweet and loving personality.

Paige strongly supported this thyroid patient movement for better health care as well as our power in being informed patients and our best advocates. Her chapter happened to be about Reverse T3 in the Stop the Thyroid Madness II book, titled “Moving Forward with Reverse T3: The Causes and Health Implications”. And she wanted me to include all sorts of wonderful and cute graphics in the chapter, which you will see in Chapter 11. You can discern her dynamic personality in the way she wrote that chapter.

She concluded her wonderful chapter with the following words of wisdom:

The best best advice I can give to my patients is this:

– Eat clean (preferable gluten-free)
– Drink plenty of filter spring water
– Exercise to tolerance
– Find time to enjoy life and to laugh. I mean laugh a LOT!
– Get your face in the sun for even a few minutes every single day
– Keep your [internal] gutters and downspouts clean
– Get your caboose in bed for plenty of uninterrupted sleep every night

Paige also knew about the importance of B12, supported the use of Low Dose Naltrexone, understood personally about the MTHFR mutation, was concerned about the connection between certain viruses and cancer, was interested in genomics, supported the use of Natural Desiccated Thyroid in the treatment of hypothyroidism, and had an special interest in autism in children, many of whom she treated.

One of several treatments that Paige loved was the Myer’s Cocktail–an intravenous nutrient mixture that could contain high doses of the B vitamins as well as magnesium, vitamin C and sometimes calcium.

Paige was an “avid and outspoken animal lover”, too, which she never hesitated to talk about in her Facebook posts. Paige also loved the Alabama Crimson Tide.

And Paige had Lyme disease

For those who don’t know, and in simple terms, Lyme is a tick born infection via a bacteria of what is called the Borrelia type. It is estimated to affect 300,000 people a year in the United States and 65,000 people a year in Europe¹, even though many more individuals get bitten by a tick without getting Lyme.  The good news about the bite is that if it’s attached for less than 36-48 hours, there is less risk you’ll get Lyme.²  But it happens.

If someone does get Lyme, the signs and symptoms of the disease vary and usually appear in stages.³ Many will get a bullseye rash on the skin within the next week or more: some do not. Others will get flu-like symptoms, ranging from achiness to fever to fatigue. Over time, which can take months to years and especially if untreated, individuals can develop viral infections, inflammation, aches and pains, shakiness and/or neurological issues…to name a few. Lyme is nasty.

Paige, unfortunately, had active Neuropsychiatric Lyme Disease, which she explained to me in the Fall of 2015 and was fighting it all with IV antibiotics and a great amount of oral medications.  Also known as Lyme neuroborreliosis, it’s the neurologic involvement of either the peripheral or central nervous system.

Bottom line, Paige was one sick lady and fought like a champion. Her dear mother confirmed that she lost her battle with Lyme during the night. There will be no service, but as soon as her mother announces it, there will be a way to make donations, which I will include as a comment to this post.

Lyme disease and you

Do know that each person’s case of Lyme is individual with many variables, both in outcomes and treatment protocols. Many do quite well after treatment. For more information…

– A video to watch about Lyme: https://www.youtube.com/watch?v=6OdP8Jndnyk

– And another video by Dr. Horowitz about the co-infections that can go with Lyme: https://www.youtube.com/watch?v=O9a-2Nb2sbk

- – Here’s an interesting page where the results of this gal’s survey questions were tabulated about Lyme treatments: http://willtherebecake.org/2015/11/11/success-rates-of-various-lyme-treatment-options-a-personal-study/ The rest of the website is excellent.

More sites:

http://ilads.org/

http://www.lymediseaseassociation.org/

http://whatislyme.com/where-to-start-lyme-info-for-newbies/

http://www.tiredoflyme.com/http://www.betterhealthguy.com/blog

Groups:

– This group is for women only and focuses on abx: https://m.facebook.com/groups/243181499182129?ref=bookmarks
– This one is all about various herbal protocols like cowden, buhner, white     https://m.facebook.com/groups/263709223729311?ref=bookmarks
– This one follows dr. Klinghardt: https://m.facebook.com/groups/712530532196662?ref=bookmarks
– LDI: https://m.facebook.com/groups/828673227222144?ref=bookmarks
– Another Cowden group: https://m.facebook.com/groups/1547743332142929?ref=bookmarks
– Cannabis for Lyme: https://m.facebook.com/groups/1506598772889860?ref=bookmarks
– Lyme and mold (mainly follows dr. Shoemaker): https://m.facebook.com/groups/1485904731739075?ref=bookmarks

Dear Paige, you will be missed by so many people! Thank you for touching all our lives with your sweet spirit, highly positive outlook, loving attitude, tireless efforts to help others in your practice and passions…and your wonderful contribution to the STTM II book! And we all send our deepest condolences to your mother and the rest of your family and closest friends.

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

  1. https://en.wikipedia.org/wiki/Lyme_disease
  2. http://www.cdc.gov/lyme/transmission/
  3. http://www.mayoclinic.org/diseases-conditions/lyme-disease/basics/symptoms/con-20019701

Here is a great article by Paige:

Intravenous Therapies – Miracle Help for All

And remarkably, this is the beautiful graphic she posted on Facebook the day before she died… We should all post it on our pages in her honor.

Paige Adams quote she posted

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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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