Why thyroid science is important to a thyroid patients campaign

why are we thyroid patients learningOkay it’s time once again to rally the troops of my dear fellow thyroid patients … and to rant and rage at the things we’re fighting against. I’ve been pondering things lately.

Here’s where I’ll start, with what really gets under my skin.

WE’RE MOCKED. WE’RE SCOLDED.

In the doctor’s office we as thyroid patients are routinely diminished, scolded, mocked, and dismissed for our symptoms, and we are told not to overstep our role as patients.

I have been given this attitude too many times.

which person holds a medical degree

Early on in my thyroid journey, I was even accused of “harassment” of my doctor for bringing medical articles to my appointment when I wanted to try a dose raise instead of going on antidepressants. She took the articles from my hands and threw them in the examination room’s dustbin and declared “that’s what is making you crazy. Now come back when you’re ready to take those antidepressants.” I left the office in tears. And I was the one harassing her? (I did go immediately for a second opinion and the other doctor gave me a dose raise that greatly alleviated my mental health issues.)

I hear of similar reports by other thyroid patients; each story is unique but it comes from the doctor’s feeling of professional entitlement, their position of power, and the subconscious annoyance of seeing a patient learn more than they themselves know.

It infuriates me that some doctors demand we never, ever research our own condition by reading scientific articles (if we do, we are assumed to be consulting “Dr Google” rather than Pub Med and the Clinical Journal of Endocrinology and Metabolism).

Instead, they demand that we put our faith in their limited thyroid knowledge and their deeply ingrained blind faith in T4 monotherapy and the TSH test.

If we do research on our own condition, we often have to dump our expertise at the doctor’s office door, enter the office with dutiful deference and feign ignorance, asking questions and subjecting ourselves to be lectured like children about things that are simplistic recipes that medicine has cooked up to dismiss our suffering.

I know. I have had a doctor send his intern to me to explain the perfection of the HPT axis, despite the fact my thyroid lab test history blatantly contradicted it. What a travesty.

We can never truly advocate for our case in the doctor’s office.

WE are at their mercy while we are the ones who need our prescription renewed or we are begging for a test, when we know how hard it is to find a good doctor, when we can’t afford to pay for a naturopath or functional medicine specialist, and the doctor we have may be treating us for other health conditions as well.

WE NEED A PUBLIC, WELL-RESEARCHED CAMPAIGN

Because of the power inequities in the doctor’s office, we as thyroid patients need a public voice. That’s partly what this campaign is for. I don’t just see it as a petition, the end. I see the opportunity to build collective knowledge and make a difference… yeah, to “turn the tide.”

2019-Together we CAN turn the tide

In a public forum, we have more freedom to speak what we have learned, not just from experience, but from science.

I believe that our public campaign’s best way forward, long term, is to roll up our sleeves and wrestle with the complexities of thyroid hormones.

Therefore, I write scientific posts not just for an audience of fellow thyroid patients, many of whom have just been diagnosed, but for our campaign’s broader goals — there are medical, political, and scientific audiences that we need to win over to our side to help us.

OUR CASE, OUR CHALLENGES

I even write for future lawyers. Apparently many of our doctors’ hands are tied.

if our best doctors can't speak

What if a courageous lawyer were to ponder trying to fight for more thyroid patients’ rights? He or she would need to see that we have a case we can win.

We DO have a sound scientific case and health-justice case for our thyroid campaign. I want to show it bit by bit, post by post.

In a nutshell, here’s the case. Since we have the medical tools and tests at hand to attain it, we have the right to T3 equity and T3 optimization and individualized thyroid therapy. Being just a little “off” from optimal T3 certainly can affect the rest of our lives and worsen other chronic diseases.

WHY SHOULD THYROID PATIENTS LEARN?

Patient by patient, knowledge is our only hope.

Because doctors are refusing to learn.

I can only hope that we as thyroid patients can learn a little, bit by bit, by listening in to the thyroid patient’s argument. Eventually, many of us can and will grasp things, bit by bit.

Some of us WILL have to learn together if we’re going to fight this battle together. Without you, I am not going to keep doing this. And if I die tomorrow, you have to carry the torch.

I say these things with deep respect and compassion for my thyroid patient peers, knowing the challenge I ask you to take on at my side.

I know from personal experience that we as thyroid patients struggle with cognitive difficulty due to our disease and often because of its therapy.

It is not easy for the most intelligent patients to grasp the concepts and vocabulary when they are suffering from non-optimal T3 levels that affect their brains and make them want to cry or scream at the drop of a hat.

I am a PhD-trained researcher in a non-science area. While I was suffering the most from the aftermath of years of poor thyroid therapy, that’s when I did my first foray into the depths of thyroid scientific literature, even though it cost me the most time and effort because my brain was not working well. I could hardly rub two neurons together to do my paid job, much less my voluntary self-education, between being wracked with mysterious pains. I was motivated to learn because I knew something was very wrong, I was in a health crisis, and I was not about to let myself get sicker and die in ignorance. Apparently nobody was capable of listening to me or learning the science.

Some things about what I suffered in the distant past are just coming clear to me now, years later.

It takes time. We have time. This is a lifelong disease.

the rest of your life to learn

Of course it angers me that we as patients should have to learn on our own what the doctors should have learned in med school.

But when your health depends on it, you can learn. When you are being denied a thyroid hormone test and an alternative thyroid therapy that can radically improve your life because of blind medical dogma and economic reasoning, you may need to use some scientific knowledge and print out a journal article as your weapon in self-advocacy.

As hard as it is for us as fatigued brain-fogged and busy patients with complex lives and health issues, I think it is worth our time to try to gradually learn and master this field as much as, and sometimes better than, the doctors who dismiss us.

It’s not that hard to surpass the doctors, really.

From what we hear from patients in our private forums, the state of thyroid knowledge out there is absolutely dismal.

I have looked at some textbooks. A lot of it is mere hand-me-down dogma and propaganda, not genuine knowledge and inquiry. So much is written in the interest of medical self-defense and passing down the status quo across generations of doctors. They are not questioning their assumptions.

Most of us thyroid patients have a high school education and some of us have post-secondary training.

If we have learned the vocabulary of our professions, we can certainly learn how to say the words “deiodinase” and “ubiquitination” and know what they really mean to our lifelong health or suffering.

If our doctors don’t know thyroid science vocabulary and concepts, and if they have never pondered the tables in Gullo et al 2011’s article “Levothyroxine monotherapy cannot guarantee euthyroidism in all athyreotic patients,” then maybe they should feel ashamed that their patients know more than they do, and maybe they should start reading the science we’re reading.

No endocrinologist who treats a single thyroid patient should be ignorant of what the journal articles in the past 5 or 10 years have said about the issues their patients struggle with.

No endocrinologist should be permitted to skip the unit on thyroid and choose to focus on diabetes or sex hormones instead.

This is a disease affecting almost as many patients as diabetes, and its complexities are hiding under professional self-protectionism, a historical desire to make our therapy simple and convenient so that millions can be “processed” through the medical system and managed and monitored rather than given their lives back.

Yes, outside of the doctor’s office, I wag my finger at those medical so-called experts. I throw down the gauntlet to them.

I think we can all throw down the gauntlet in a public setting, the more we know.

WHAT HAPPENS WHEN PATIENTS HAVE NO SCIENCE, ONLY COMPLAINTS?

When patients have no voice that speaks based on evidence, then medical practitioners’ own priorities take over. The state’s money-saving priorities take over. The pharmaceutical market’s priorities take over.

For decades, for way too long, (hypo)thyroid therapy has been simplified to two knobs on a machine, two numbers: our TSH test result and our T4 hormone dose.

doctors want simplicity

Given this gross oversimplification, what endocrinologist in their right mind would desire to specialize in thyroid in 2019? How boring!

Oh, unless it’s the complexities of thyroid cancer or the medical emergencies of hyperthyroidism that could lead to thyroid storm. There’s such drama! Such affirmation of success!

But to ponder saving a middle aged overweight woman … with an ugly rash … and constipation … to rescue her from slowly fading away for the next 20 years with suboptimal Free T3 on Synthroid? Where’s the heroism in that? Gosh, send her home with a prescription for some skin cream and an antidepressant and laxatives, because we don’t want to deal with her anymore.

Indeed, we are mostly post-middle aged women whose symptoms are attributed to being busy moms, or busy professionals, or our aging, or any other disease. Our TSH has become their shield and our worst enemy.

We’re not cute puppies. We’re dismissable.

cute puppy sad cuz low t3In medicine today, it seems that lifelong thyroid therapy has been downgraded to people with little thyroid expertise and even less compassion.

Crucial life-changing decisions about access to thyroid hormone tests are being handed over to the health system administrator running health care budgets, the politicians they report to, who have to be accountable for tax spending.

They can and will just ask the simple question, “how much money can our province save by denying these $10 Free T3 tests and $12 Free T4 tests, since we’re giving them the $10 TSH test already?”

I can imagine them reasoning this way:

“Oh Look, some 2012 and 2014 guidelines from the USA say we can get away with cutting these tests entirely, so we’re not going to look up their scientific references and question their authority.

And oh, goody! The Choosing Wisely Canada Campaign and Canadian Endocrinology association backs us up on it. With their authority covering our butts, we don’t need to question it or do any research on our own. Let’s just forbid these tests for all hypothyroid folks carte blanche. Because it’s always been this way (at least since the 1990s).

Let the silly patients whine all they want. They know nothing and have no power anyway.”

Health Canada does not even know the difference between Levothyroxine (L-T4) and Liothyronine (L-T3). According to our campaign’s pharmaceutical researcher who had a phone call with them, they are all just “thyroid agents” to Health Canada, based on their pharmaceutical category. If there’s a shortage of desiccated thyroid or liothyronine they will say — oh look, in the same list there’s Synthroid, and Eltroxin, you can take that. Now go away and have a nice day.

These are some of the people — the health admins and the health politicians, who take testing and therapeutic tools away from doctors and patients. They are the ones who make the blood testing laboratories deny the Free T3 and Free T4 tests the doctors order and send the offending doctors to thyroid brainwashing sessions if they order these tests. They are the ones who allowed there to be a monopoly on two unique “thyroid agents.” It’s their fault that we are left to the mercy of market shortages and price hikes and have to phone all the pharmacies in our region to find the meds we depend on, or buy them on vacation and come back with 3 months supply.

Therefore, as this campaign’s researcher, I write. I research, I argue. Yeah, in my spare time.

While THEIR careers are at stake if they speak up for us, OUR health is at stake if we remain silent … or if we merely whine while we lack scientific knowledge.

WHO AM I (OR WE) TO SPEAK?

I’ve been asked recently, Why do I think I can speak for all thyroid patients?

My answer: Anyone with a thyroid condition can have pathological ratios and amounts of thyroid hormone… even hiding under a normalized TSH.

We can all have challenges with optimizing our T3, whether we know it or not.

If we don’t have those challenges right now, we might later on as we age or get sick.

I research and write even on behalf of the thyroid patient who is sure they are doing fine.  I was that patient for most of the 13 years I spent on Synthroid.

I even write on behalf of every human being with a HEALTHY thyroid gland who survives and thrives based on the T3 hormone their own thyroid gives them.

Yes even the healthy-thyroid citizen’s T3 may drop very low when they have a heart attack or kidney disease or end up in the hospital very sick … and then, at that time, they may be denied T3 therapy because of the bizarre logic that it’s dangerous to give any T3 to a patient who has pathologically low T3 levels.

Low T3 Syndrome The tip of an iceberg-PAGE 2

These patients are given a ventilator if they can’t breathe, and they even get expensive CTs and MRIs, but if they go low in T3, the medical system will deny them a $10 test, a $2 pill that could give their organs and tissues a fighting chance at healing. Nope, the medical team will just shrug and focus on the surface issues, not the underlying thyroid deficiency.

If your doctors and nurses have taken a superficial review of some of the Low T3 Syndrome research, they may have learned just enough to dismiss it and say “oh well, the body apparently wants the T3 to be low, so either they’ll pull through on their own when their thyroid gland kicks in again, or they won’t and they’ll die. … We’re not allowed to test or treat their T3 because it’s controversial.”

WHO AM I (OR WE) AS THE CAMPAIGN?

canadian-thyroid-campaign-page-header-twFinally, I want to say that there’s good reasons why, for now, as your main researcher I speak as the collective voice of the Canadian Thyroid Patients Campaign.

First of all, I am not working alone; there is a team of us leading this campaign. Yeah, there is a “we.” I’m just the most wordy one in the bunch. I welcome some others to work at my side. I’m not in this to boost my ego; I’m a collaborator at heart.

Secondly, as soon as you put a name out there, you invite lowbrow ad-hominem attacks against your personal background rather than forcing people to listen to your arguments and evidence. It is too easy to judge someone by their physical appearance and resume.

And finally, I have a professional life to keep separate from my advocacy, and I have a couple of good thyroid doctors that deserve protection from a witch hunt, and I’m not the only thyroid patient that depends on my doctors.

I love you all because we suffer together from similar struggles.

So I really hope you can forgive me for writing over your heads at times.

End of rant… for now.

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