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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

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* 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.)

Depression? High blood pressure? Weight gain? Need a nap? On a T4-only med like Synthroid? TEN RESULTS YOU NEED TO KNOW!

(This page was updated in 2015. Enjoy!)

STTM Thyroid Awareness MonthJanuary is THYROID AWARENESS MONTH, but no matter what month you are in, it pays to be an informed patient!

A healthy thyroid, or the right treatment, will create the following TEN RESULTS: 

 

1) Bodily warmth

Because the active thyroid hormone T3 stimulates your metabolism is the right way, patients find themselves getting close to or at 98.6 F/ 37 C in the afternoons, plus warmer hands and feet.

2) Better mood

The right thyroid hormones increase neurotransmitter responsiveness in your brain (like serotonin), meaning it’s your natural anti-depressive…and depression is kicked to the wind.

3) The ability to concentrate 

Just as they are anti-depressive, thyroid hormones promote better thought processing in your brain.

4) A healthy heart and blood pressure 

Thyroid hormones play a strong role in the health of your cardiovascular system

5) Softer skin and better hair

The right thyroid hormones keep you moister, so you don’t have problems with dry hands, dry hair, eyebrow loss, hair thinning….etc.

6) Better weight maintenance

Your metabolism stays at a point where it’s easier to maintain your goal weight with healthy eating habits and exercise.

7) The ability to avoid naps 

The right metabolism from the right thyroid hormones (after a good night’s sleep) keeps you awake and feeling fabulous even in the afternoons.

8) Healthy cholesterol 

Thyroid hormones appear to have both an indirect and direct relationship to healthy cholesterol levels.

9) Easier and more regular bowel movements

Because of the extra moisture that the right amount of thyroid hormones give you, bowel movements are better, and constipation and hard stools belong to someone else.

10) A stronger immune system

Thyroid hormones play a direct role in the strength of your body’s ability to withstand infections and disease, or at the least, fight them quicker and more stronger if you do get sick.

So my friends, if anything above seems off to you, there are important things you need to do:

  1. Find a doctor who will do the Free T3 and Free T4, NOT just the TSH. Just using the TSH lab test has kept many folks UNdiagnosed, or UNDERtreated. 
  2. Learn how to read those lab results here. Lab results have NOTHING do with just “falling in the range”.
  3. Look into natural desiccated thyroid (NDT). It gives you all FIVE thyroid hormones, not just one left to depend upon like T4-only (aka Synthroid, Tirosent, Levothyroxine, Eltroxine, etc).
  4. Find out about all problems associated with being left undiagnosed due to the TSH and undertreated due to T4-only meds, such as non-optimal levels of iron, high or low cortisol, low B12, depression and mental health issues, low Vitamin D and other problems. Any of these can also contribute to problems with the above ten results.
  5. Order the revised STTM book. This is a compilation of successful patient experience and wisdom to help you achieve the above ten results. Learn from patients! Right now, it’s in ENGLISH, GERMAN, SPANISH AND SWEDISH.

**The above graphic was lovingly created by thyroid patient Marivia Gonzalez of Panama.

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* ADD A BLUE THYROID AWARENESS RIBBON to your Facebook profile pic here. It will end up on the lower right….

* Did you know there’s a STTM II book? Every chapter is written by medical practitioners! A great followup to the revised STTM book! 

* Join the STTM Facebook page to get daily tips and inspiration!

 

The Good, the Bad and the Ugly: 2012 in perspective for thyroid patients worldwide

2012 represented my tenth year as an activist, which has given me great perspective of where we are today as to compared to where we were ten years ago. And it’s huge. We had NO Stop the Thyroid Madness compilation of successful patient experiences to learn from and very few patient groups. We’ve come a long way, baby and the fight for better thyroid treatment and wisdom continues!

To summarize, Clint Eastwood couldn’t have said it better as to the mix of what 2012 gave us as informed thyroid patients!

THE GOOD: 

  • Armour returns to a softer tablet  After Forest Labs disastrous reformulation of Armour natural desiccated thyroid in 2009, which made the tablets harder and caused a return of our hypothyroid symptoms, we started to see Armour tablets becoming softer again in mid-2012. And that meant we could choose to do Armour sublingually once again. In the meantime, this disaster allowed many patients to discover NP Thyroid by Acella, which has turned out to be a great product.
  • More doctors are getting it! I probably see this in a more widespread way than individual patients do thanks to all the emails I get, but it’s clear that a growing body of doctors are finally understanding the efficacy of natural desiccated thyroid and the idiocy of the TSH lab test in diagnosing and dosing NDT. Sure, the field of Endocrinology is still as backwards as it gets, as are many other doctors, but others are listening here or there. (But do note that even the best doctors aren’t caught up in other areas, so become informed and expect to guide them as to patient experience! STTM book helps you do that.)
  • STTM book now in German and Swedish  I was proud and excited to offer these two translations to help spread the word to those who may not speak English.
  • Study being done comparing NDT with Synthroid Walter Reed National Military Medical Center in Bethesda, Maryland is doing a study, and seeking participants from the military, to compare the results of natural desiccated thyroid (which they call Natural Desiccated Extract or NDE, and will be Armour) and T4-only aka levothyroxine (and will be the infamous Synthroid). But there is a clear bad…..see below 
  • Wichita, Kansas says no to Fluoride in their waterConsidering that many of us suspect that the fluoride we are constantly exposed to could explain the huge influx of thyroid disease, this is extremely good news and we can only hope that other cities get this smart.
  • Thyroid Change In an attempt to unite all thyroid websites, leaders and focuses came this new website, Thyroid Change.

THE BAD:

  •  John C. Lowe dies  It was a terrible shock to lose this helpful medical professional in January due to the effects of a head injury the previous year. And his websites went with him for awhile due to probate. He will be sorely missed, as he was a champion for the use of NDT and understood SO much about better thyroid care.
  • The passing of Edna Kyrie  Edna of the UK worked hard on the website Thyroid History, aka Thyroid Research, compiling everything she could find pertaining to thyroid research and science, even while dealing with the effects of MS (multiple sclerosis).
  • US now confiscates medications if they come into the country  In July, Obama passed a bill called the FDA Safety and Innovation Act (S. 3187) which allows the government to destroy a package of personally imported drugs at their point of entry to the United States…even if some patients feel they need them when they can’t find any doctor wise enough to prescribe NDT, or enough NDT thanks to the poor use of the TSH lab test. And several patients have already had this happen to them.
  • Walter Reed National Military Medical Center study will sadly be using the TSH  i.e. though it looks exciting to see a study comparing NDT to Synthroid, they are going “to keep TSH in normal range” (which for the majority can mean they are still hypothyroid) and aren’t even testing the FREE T3, just using the total T3, total T4, free T4, T3 resin uptake, sex hormone binding globulin (SHBG), and a lipid panel.  Give me a break….
THE UGLY:

Good thyroid patient discussion groups here.

Things we have learned here.

What’s new on STTM here.

What your Road to Recovery can look like here.

The revised STTM book here.

Washington spits in your face, anti-depressant problem, and the STTM book is now in German and Swedish!

The US Government is going to confiscate your meds sent from overseas!

Fall is in the US, but as you were enjoying your summer, it happened in a flash:  last July, President Obama signed into law the FDA Safety and Innovation Act (S. 3187). And that Act includes a section that might negatively affect your life as a thyroid patient if you are among those feel forced to get your life-saving natural desiccated thyroid (NDT) or related medications from overseas (because your doctor was too clueless to either prescribe NDT or give you enough thanks to the medical stupidity about the TSH lab test).

i.e. in Section 708, the US government now has the authority to destroy a package of personally imported drugs at their point of entry to the United States…even if you badly need them. And this potentially includes NDT like Erfa coming to us from safe, reputable Canadian online pharmacies by prescription! Or your T3-only from other places. Both the latter are unclear, but it’s a possibility.

And do you know why they state they are doing this?? For your “SAFETY”.  Janie’s eyes rolling here.  Can someone tell me how they know if a thyroid med from somewhere else is “unsafe” simply because it wasn’t made in the US?? Are US-made drugs SAFE??? Give me a break. Ask that of folks whose lives paid big prices because of side effects from our FDA-approved medications like Synthroid and many other NON-thyroid related drugs pushed upon us. It’s all a bunch of Big Pharma-influenced, greedy hooey, say thyroid patients.

Now as far as we know, this isn’t going to affect anything really soon. The US Secretary of Health and Human Services has up to two years to decide how to make the new law a reality. But it may happen far sooner than later in that time frame and I would count on it.

Says Lee Graczyk, RxRights Lead Organizer, “It’s critical for people to stand up and get organized to fight against this harmful regulation!”

Anti-depressant use and your adrenals: not a helpful connection for some

Sure, having depression is not fun and it’s understandable if you want to do something about it. My own mother had depression so bad thanks to her lifelong use of Synthroid that she used anti-depressants her entire adult life. This was long before we, as thyroid patients, discovered the strong connection between low T3 levels in the brain and depression (and a connection which all too many doctors miss!)

She also had an extremely “emotionally apathetic” personality, which I assumed was solely due to the electric shock treatment she had while in her early 40’s in an attempt to reverse the depression. But turns out her impassive and flat personality could have also been from the nasty side-effects of my mother’s long-term antidepressant use. i.e. while they made her “happy”, they also made her more dull, flat and detached. This has been reported by all-too-many patients

But now we are seeing the problems that anti-depressant use can cause for your adrenals. A study done in September 2011 titled Antidepressant use and salivary cortisol in depressive and anxiety disorders reveals that

  1. Tricyclics* flatten your cortisol awakening response
  2. SSRI users** had higher evening cortisol levels
  3. Most antidepressants are associated with distinct alterations of the HPA axis (hypothalamus, pituitary and adrenal feedback loop)

*A common form of Tricyclics is Elavil (Amitriptyline).  **Common examples of SSRI antidepressant (Selective serotonin re-uptake inhibitors or serotonin-specific reuptake inhibitor) include Lexapro, Prozac, Celexa, Paxil, Zoloft, etc) 

The alternation of your HPA axis is a common finding when you peruse several research studies. And it’s even more obvious when thyroid patients with adrenal fatigue start using the T3 Circadian Method. i.e. it can take longer to get the right response from the T3. ***Please note that this is simply providing information in the name of being informed patients, not a recommendation to get off your antidepressant!  Talk to your doctor.

(Speaking of mood issues, a study was done showing cherries help with mood. Who would’ve guessed. You can read about it here.)

The revised Stop the Thyroid Madness book is now in German and Swedish! 

You can read about the translations here and I included an autobiography of each translator!  Please do not comment asking if a particular language is coming. I’ll announce them when the day comes.  If you know someone in Germany or Sweden who could badly use the patient-to-patient information in this book, go here.

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.

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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.

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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.

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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.

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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.