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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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43 replies

An Open Letter to All Physicians from a Nurse about thyroid treatment

pen-writing

A Thyroid patient who is also an RN was shocked to see the contents of a letter that a patient’s doctor had sent out to this patient. It was filled with terrible inaccuracies about thyroid treatment, she exclaimed, and she was horrified. No wonder so many thyroid patients are exasperated with their doctors!

So she compiled this excellent letter, refuting several comments made by this doctor, but directing it to ANY doctor who holds these false views.

Take the time to share this on your Facebook pages, your blogs, to your doctor, you name it. Spread the word as we work to Stop the Thyroid Treatment Madness!!

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An Open letter to physicians regarding the use of “Pig Thyroid Hormones”

I am writing this letter in response to any physician’s stance against the use of any forms of Natural Desiccated Thyroid (NDT) hormones as replacement for inadequate thyroid hormone levels. I will attempt to include links to medical-journal/peer-reviewed/scientific-based information to help you catch up on the latest in thyroid treatment and information.

I know that you, as a physician, have very limited time when it comes to researching various information on treatment protocols. I acknowledge that you were given limited training on thyroid diagnosis and treatments during your medical school programs, as well as in internship and residency programs, and have likely had to rely on the information provided by Pharmaceutical sales reps.

As such, I believe that your views are unfairly skewed and not fully fleshed out towards the use of T4-only medications such as Synthroid, Levoxyl, and others.

1) Regarding your assertion that Synthroid/T4 only medications are “bio-identical” in structure and thus, are an “adequate replacement” for a thyroid that makes 5 hormones (T4, T3, T2, T1 and calcitonin)

Please review the following photos, showing the chemical structure of human thyroxine (T4) and the chemical structures of T4-only medications such as Tirosint and Synthroid: (source: Synthroid Manufacturer’s Full prescribing information). As you can see below, there is a great difference between the molecular structure of Synthroid and human thyroxine.

Screen Shot 2014-02-17 at 11.55.23 AM

 

 

 

 

 

 

 

 

 

 

And below, in the top photo, is the human thyroxine (T4) molecule (Source: Chemical and Engineering news: https://pubs.acs.org/cen/coverstory/83/8325/8325thyroxine.html)  Compared that to the T4 molecule found in Nature-throid, bottom photo, which is one of several commonly-prescribed forms of Natural Desiccated Thyroid (NDT) medication.  (source: Nature-throid prescribing information http://www.nature-throid.com/images/Nature-Throid-PI-Rev041121-03.pdf)

As you can see, the molecules are identically formed, and therefore are the ones which are truly “bio-identical in structure”.

Screen Shot 2014-02-17 at 12.00.13 PM

 

 

 

 

 

 

 

 

 

 

2) Regarding your assertion that the TSH is a stable and reliable test which should be looked at first, while T4 and T3 levels fluctuate frequently and are not stable enough to be considered. 

Here are several medical journal articles which should make anyone rethink the use of the TSH lab test:

http://www.sciencedaily.com/releases/2010/03/100315230910.htm

http://jcem.endojournals.org/cgi/content/abstract/90/9/5483

http://www.thyroid-info.com/articles/david-derry.htm

http://thyroid.about.com/od/thyroiddrugstreatments/l/blderryb.htm

And not only the above, but there are a large body of thyroid patients who, for decades, have reported having a very “normal” TSH lab test while having very obvious symptoms of hypothyroidism, including a low temperature, fatigue, exercise intolerance, feeling cold, dry skin, depression, hair loss and more.

3) Regarding your idea as to what amount of T4 or T3 a human thyroid produces in a day (such as 100 mcg T4 and about 6 mcg T3 daily).

That information will vary. For example, another source states that a human thyroid makes on average between 3-5 grains of thyroid hormone per day:  “Estimates of average normal secretion for euthyroid humans are 94-110 µg T4 and 10-22 µg T3 daily (300).  If  you need more, it can be due to exogenous desiccated thyroid (giving it to yourself) vs. the superior absorption of natural release of thyroid hormones.” 

Source: http://www.thyroidmanager.org/chapter/thyroid-hormone-synthesis-and-secretion/

Either way, it varies according to each individual as to what amount of NDT will remove all symptoms.

4) Regarding your assertion that very few thyroid patients have issues with conversion of T4 to T3: 

As you may or may not know, many situations can cause problems with the conversion of T4 to T3 within the body, including a) mineral deficiencies (particularly low iron – a common issue in hypothyroid patients), b) gastrointestinal problems, c) liver problems, d) adrenal cortisol deficiencies (VERY common in T4 only-treated patients due to the inadequacy of being on nothing more than a storage hormone 5) the use of many commonly-prescribed medications including beta blockers or pharmacological doses of corticosteroids.

Source: http://www.naturalendocrinesolutions.com/articles/do-you-have-a-t4-to-t3-conversion-problem/

See Also:

http://press.endocrine.org/doi/abs/10.1210/jc.2008-1301

http://press.endocrine.org/doi/full/10.1210/jcem.84.2.5534

In addition to all the above, there are many thyroid patients who report that their FT3 “looked right” on T4-only, yet they continued to have symptoms of hypothyroidism while on thyroxine.

5) Regarding your assertion that there is no good way to dose Armour and other Natural Desiccated Thyroid Products

The growing body of thyroid patients around the world have frankly not had any issues with dosing NDT. Most dose it twice a day, such as first thing in the morning, and then the early afternoon. And it’s worked well.

Additionally, there are a variety of different strengths to choose from by the manufacturers of Natural Desiccated Thyroid meds such as Armour, NatureThroid, WP Thyroid, NP Thyroid, Erfa etc. For example….http://www.nature-throid.com/available_strengths.php

http://www.nature-throid.com/images/Nature-Throid-PI-Rev041121-03.pdf

6) Regarding the idea that a supposed “high dose of T3” has a stimulant effect…or is like a large dose of caffeine…or makes you feel good…or is addictive…or doesn’t make much sense physiologically…or may actually be dangerous, especially for the heart. 

I would hope that any doctor who proclaims to be a hormone-balancing “expert” would have a basic working knowledge of the need for T3 hormone in adequate levels for optimal cardiac functioning. Here are some helpful links which demonstrate the need for adequate T3 in order for cardiac functioning to be considered “optimal.”

The Journal of Clinical Endocrinology & Metabolism has reported that long-term levothyroxine replacement therapy in young adults is associated with cardiovascular abnormalities. http://jcem.endojournals.org/cgi/content/abstract/93/7/2486

And from this article: http://www.ncbi.nlm.nih.gov/pubmed/18221125 “Clinical studies have shown that mild forms of thyroid dysfunction, both primary (subclinical hypothyroidism and subclinical hyperthyroidism) and secondary (low T(3) syndrome) have negative prognostic impact in patients with heart failure. In these patients, the administration of synthetic triiodothyronine (T(3)) was well tolerated and induced significant improvement in cardiac function without increased heart rate and metabolic demand “

From this article: http://jcem.endojournals.org/content/93/4/1351.full.pdf  “Altogether, our data indicate that short-term administration of substitutive doses of synthetic L-T3 state reduces activation of the neuroendocrine system and improves LV SV in patients with ventricular dysfunction and low-T3 syndrome”

And this study: http://www.hindawi.com/journals/jtr/2011/958626/abs/ “The potential of TH (thyroid hormones) to regenerate a diseased heart has now been tested in patients with acute myocardial infarction in a phase II, randomized, double blind, placebo-controlled study (the THiRST study)”

And this statement, from this American Heart Association-sponsored study states: http://circ.ahajournals.org/content/107/5/708.long “…low T3 concentrations are a strong independent predictive marker of poor prognosis in cardiac patients and might represent a determinant factor directly implicated in the evolution and prognosis of these patients. “

To the contrary, hypothyroid patients are not seeking “high doses of T3”. Instead, they seek an amount of NDT that removes their symptoms of hypothyroidism, improves their temperature and metabolism, results in a strong heart and good blood pressure. When we achieve all the latter, we’ve noticed our free T3 in the upper quarter of the range, and the Free T4 around mid-range…and we have no symptoms of excess (if iron and cortisol is also corrected).  It’s all the result of adequate, physiologic doses for replacement, not high doses of NDT with its inherent direct T3.

We are NOT stimulant addicts or drug-seekers, and find that offensive. We are only seeking to replace what our thyroids are not giving us, and to regain a non-hypothyroid state as a result.

We are seeking human decency, wisdom and open-mindedness from our physicians. You would not deny a diabetic patient replacement with the hormone insulin, so why would you deny a person without adequate thyroid function all the right hormones, including the T3 hormone which is critical for every cell in the body to function properly? This seems cruel and unusual treatment in my book, and does NOT correlate with the “first, do no harm” portion of the Hippocratic oath!

7) Regarding the idea that patients are full of “bitter, angry, contentious discourse.”

Do try to understand how it feels to live in a body with a damaged or under-functioning thyroid and to have a doctor replace your missing thyroid hormones with nothing more than a storage hormone. We do not see healthy thyroids only producing a storage hormone. Living life without adequate thyroid hormones (particularly direct T3- the “active” thyroid hormone which every living cell in your body needs to function properly) leaves patients frustrated.

Additionally, put yourself in our shoes when you proclaim us “normal” based on a pituitary hormone, in spite of the fact that we continue to have hypothyroid symptoms. The latter test has repeatedly failed to correspond with how patients feel and function on a daily basis.

Imagine being held to a medication such as Synthroid, which then leaves you with inadequate thyroid hormones to obtain functional levels of daily living, optimal heart function and optimal hormonal balance. Imagine living your life in pain, depression, and with high blood pressure and cholesterol, with inadequate adrenal function, and all your sex hormones thrown off balance simply because your doctor is not open-minded or educated enough to grant you the use of natural desiccated thyroid which can make those symptoms disappear (in the presence of good iron and cortisol). Imagine being unable to get out of bed in the morning due to severe unrelenting fatigue and being unable to think properly due to brain fog caused by lack of thyroid hormones. Imagine missing out on the joys of life, and family, and being a functional member of society, simply because your doctor would not allow you to try a better form of medication. Would you not be upset with your physician if you knew there was a simple solution, yet you were repeatedly brushed off, symptoms ignored, and told to go on with living your half-life and to just “deal with it?”

8) Regarding the idea that Natural Desiccated Thyroid has not worked for some patients

Janie Bowthorpe has compiled several reasons why NDT doesn’t seem to works based on over a decade of reported patient experiences: //www.stopthethyroidmadness.com/ndt-doesnt-work-for-me Can that many patients and their important experiences be unworthy of your open-mindedness and investigation?

In conclusion, I hope that you will read all the above with a more open-mind and rethink your stance on the use of Natural Desiccated Thyroid hormone. It is a proven safe and effective form of treatment for over 122 years and counting. Your patients are counting on YOU to do what is right!

Sincerely,

A Hashimoto’s and Graves patient for over 28 years, Post Total Thryoidectomy 2012. Happily out of heart failure and OFF BP and Cholesterol meds, OFF Cholesterol meds since June 2013- when my thyroid doctor put me on Natural Desiccated Thyroid.

66 replies

Thyroid Patients and their Doctors: all the information you need

DoctorI’m so glad I wasn’t yet into hypothyroidism when I was a child. I had a doctor named Dr. Roach. Yes. Really. And he was quite tall and very serious. Not the kind of guy who should have been a pediatrician. So when my mother took me into the office for my required childhood vaccinations, I was SCARED…TO…DEATH…of him. I would hide behind the chairs as if I could really escape this nightmare. It didn’t work…lol.

So IF I had to see Dr. very-tall-very-serious-Roach for hypothyroidism, I shudder to think how it would have gone. lol.

INEFFECTIVE DOCTORS

As adults, we have somewhat more choices on who we see. And even so, it’s not always an easy issue. Thyroid patients report far too many doctors who they feel are missing the mark in their thyroid disease treatment.

And I get that!! When I was on Synthroid and later Levoxyl and suffering miserably, I remember going to at LEAST 20 doctors over those years, trying desperately to get help for what was debilitating me…and failing!

And boy oh boy, are there some bad memories. One doctor decided to use me for his “experiments” and I was put on a medication which really had nothing to do with what I went in there for. In retrospect, I think he was using me for a medical article he wanted to write, which he did then and still does today.

Another doctor put his foot down in arrogance when I asked if I could please get my potassium, sodium and magnesium tested to see why I was getting blood pressure problems. “That’s not your problem”, he swiftly said. i.e. he came across as “I’m the doctor; you are not. Don’t ask for anything”.

And there were many doctors who, in light of my hypothyroid-caused depression due to being inadequately treated thanks to T4-only, told me I need to see a psychologist or get on anti-depressants. NOT the right answer when natural desiccated thyroid would have ended that depression!

Yes, I finally found a couple of medical professionals who have been wonderful! And that’s because they have started listening to our experiences, and are willing to learn from me, as well.

A better direction

Today, patients have a lot more help and a sense of proactivity in their treatment thanks to the education and support that Stop the Thyroid Madness offers. Here are pages related to doctors that may help:

  • TAKE A SURVEY as to your experiences with the majority of your doctors over the years. This will become important information which STTM will use in the future. Please contribute by answering the five questions! 
  • Here’s where you can see how patients find a good doctor. It can take a little work, but the end results will be much better. 
  • Don’t know how to say things to your doctor? Here’s a letter to your doctor which can help. 
  • And of course, YOU need to become informed somewhat ahead of time, because there will probably be some areas you’ll need to guide your doctor about. Here’s a summary of what patients have learned. 
  • Also helpful is to take a copy of the revised STTM book with you. You can have it bookmarked and read to open, if needed, in the discussion with your doctor. 
  • What if your doctor is the kind that needs research proof? STTM has a medical research page you can print out and hand to him. 
  • And to make you feel empowered, here is a page which outlines the areas doctors need to change in their thinking. 
  • Finally, get support from patients. 

Bottom line about working with your doctor

Yes, thyroid patients may be disgusted and angry about the lack of good care they’ve received, but it still helps to to interact respectfully and tactfully. And definitely be INFORMED. That will give you the edge and your doctor’s respect in return. If not, move on to much better doctor! Be our OWN best advocate!

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  • Want to receive these blog posts right in your email?? Sign up to the left of this blog post on the STTM blog page. 
  • Take the Survey Monkey STTM SURVEY as to your experiences with the majority of the doctors you have seen. 
  • Want to talk to Janie and learn about patient experiences and wisdom concerning your issues? Go to the Talk to Others page. 
2 replies

Change is slow: the everlasting frustration of thyroid patients, and this one in particular

In the daily emails I get from folks,  some make my heart ache. And a recent email just underscored to me how we still have a long way to go in changing the inane stupidity of the medical establishment.

Her email today was titled OMG, THANK YOU!!!!!!

She explains that for twenty years, she has been sick, fired doctors, had them fire her for being “uncooperative in my treatment”, and more. And today, after finding STTM, she wants to cry, laugh and “talk out loud to all those charlatans who call themselves doctors”.

And I completely identified with her. I remember those 20 years myself where I went from doctor to doctor to doctor, enduring dismissive attitudes, vain condescending deaf ears, clinical blindness, ignorance, lab worship, and a slew of tests that were either useless or extremely painful–all in the attempt to find out WHAT WAS WRONG WITH ME.

Today, after finding STTM, she exclaims: “the relief of finally being vindicated after all those years!”

She continued:  “Most of the time they didn’t even have enough integrity to admit they didn’t know…they would just look at the paperwork and say,”well, the lab work looks fine.” Then would come the implication that it was all in my head.”

She spent hours and hours of online research (boy does that sound familiar) and her breakthrough after too many years of poor doctors came with a single old school family doctor who ordered the cortisol test.  And finding the patient-to-patient STTM was the final victory.

I wish I had had something like STTM, once upon a time. But so be it. The kind of long term suffering I endured, as well as many others, is the reason STTM was compiled and created, and patiently sits there, waiting for each and all who are STILL in the same boat to find it.

She ended her email with “Thank you! Thank you! Thank you!” And all of us who have been there, and have finally found our sweet spot thanks to PATIENT WISDOM as outlined on STTM, say “You’re welcome”.

24 replies