Why is it so difficult to get thyroid disease diagnosed and treated?

We rely on doctors and technologies to prevent and treat illness. But dysfunction can occur in the medical system, not just in the human body it’s supposed to treat. Image: “2008.11.25 – The physician,” by Adrian Clark, November 25, 2008, from https://flic.kr/p/5EHjMW

I’ve created a series of blog posts that tells my story and outlines the six challenges I’ve faced as a hypothyroid patient with hormone-conversion dysfunction and various other health conditions that were worsened by this.

This post provides my summative reflections on the experience.

At almost every turning point in my experience with Hashimoto’s thyroiditis, I have had to do my own research and take initiative to ask my doctors for tests that should have been done years earlier.

On top of my hypothyroid symptoms (during treatment as well as pre-treatment) and the fact that chronic hypothyroidism increases risk for other health issues (such as heart problems), I have struggled with systemic barriers in the health care system, as explored by these posts:

If it has been this challenging for me, a very curious and assertive patient with a PhD and access to research databases to take initiative in my own thyroid health, how hard must it be for patients without such ornery character traits, advanced research education, and/or research resources?

Even in my case, I was often too busy to do my own research–and too stressed out by my thyroid symptoms and other health conditions. Being hypothyroid (fatigue, brain fog, depression) is not very conducive to being a proactive patient.

Being apparently “healthy” is not so conducive to long-term preventative health either.  During times when we are unsymptomatic, we and our doctors can be lulled into a false sense of security that all is well despite warning signs … we could be kept afloat by youth, or a good diet, or a relatively stress-free lifestyle, but we could still be heading toward a disaster when an illness or accident strikes.

I think T3 levels are like that… they are a fundamental platform for our health that we may take for granted. When the foundation starts to crack and crumble, in this case, a chronically low T3 over years, it might take a while for the whole superstructure to collapse.  Add one more small dose of stress, or an allergic reaction, or a flu, and then all the weak points in a person’s health start to collapse… and T3 is what the body needs to recover.

What happens when ill people with normal thyroids get “low T3 syndrome”?  Research tells us: They more frequently experience return and worsening of symptoms… and death.  Those who are lucky enough to make it through the illness see their T3 levels return to normal.

People like me who do NOT have a normally functioning thyroid, AND have Low T3 and a T4-T3 conversion dysfunction, AND get seriously ill, have three things working against us, not just two. We may need more help to recover from illness than those “euthyroid sick syndrome” folks with normal thyroid glands that can slowly revive and give them adequate doses of T4, T3, T2, and T1.

We, the Synthroid patients, are relying primarily on T4-only synthetic thyroid hormone replacement to do all the work of digging us out of the pit of illness.  I’m sorry, but T4 can’t always do it.  Thyroid disorders are complex.  How can we think one pill, one hormone (just T4, not T3, T2, T1, etc) and one test (TSH) can manage everything for a diseased thyroid?

I did some research years ago on Reverse T3 that got me asking my doctor to test for T3 levels, but then the theory and its importance it faded from my mind… and my doctor’s mind… as it seemed that my symptoms and dose were under control for several years.

It is sad, but I would like to suggest that we, as hypothyroid patients, need to gather all the tiny little fragments of hormonal energy we can scrape together and actively reach out to others (doctors, family, friends, institutions, experts, books, websites, patient forums).  We need to somehow find the energy and time to educate ourselves, to build up the courage to ask to get tested, to be properly monitored, and properly medicated and to do what we can to adjust our own diet, supplements, and lifestyle.

For the past 12 years, I and my doctors could have prevented many problems and distressing symptoms by testing earlier, testing more broadly, monitoring for further underlying dysfunction on a regular basis, and empowering me to support my own health in ways beyond taking a thyroid pill.

Why was it okay to be held in ignorance for so long about the relevant facts that can be known regarding my own thyroid health? Thyroid health should be part of our public education.  Within physician education and health policy, thyroid treatment should not be oversimplified into a mere matter of matching TSH levels to Synthroid doses.

It makes me feel sad and angry–not at my own doctors, but at the health care system and gaps in medical training and patient education that makes the unique, variable, and dangerous aspects of these conditions slip through the cracks.

If patients are supposed to participate in their own health, they should also be given prompt access to the relevant tests, test results, specialists, and education regarding their own condition.  Are we being kept in ignorance so that we don’t offend the sensitive egos of our doctors and experts?

I wonder sometimes if Western culture and developed nations’ technologically-rich health care systems foster a state of false confidence in minimal testing and minimal education regarding Thyroid disorders.

Canadians, especially, are a deferential people who tend to respect our doctors and tend to trust them to be more omniscient than they can ever be. We are also a rule-oriented and procedure-loving culture. Because our health care system is tax-funded, we are also continually looking for health care budget efficiencies to avoid “unnecessary” testing whenever we can, and as a result we may not do any exploratory testing that would be wise or reasonable.

In Western nations we put a lot of time and money into heart disease and cancer research and treatment. Yet thyroid disorders (both hypo and hyper) are known to be a risk factor for both of those conditions. Fund thyroid research and treatment more, and you will help people with many serious illnesses.

I also believe that Thyroid disease has not been getting the attention it deserves because it is mainly an older woman’s disease, with approximately only 10% of thyroid patients being male.  Most of the women who get it are past childbearing years.  Is it seen as “normal for women,” especially older women, to whine and complain about fatigue, emotional and congnitive disturbance,  etc.? Why should it be acceptable for anyone’s brain and physical function to be sub-optimal?

Why do still I find it so personally and socially challenging and stressful to question the expertise of my doctors, to bring my research findings to a doctor’s appointment, to ask for more tests than they may think is necessary, and to seek extra assistance from specialists? It’s so un-Canadian, un-deferential, almost impolite, yet necessary.

Despite the discomfort and stressful doctors’ visits, illness drove a person like me to research my own conditions … to logically hypothesize where research did not prove conclusively … and to shameless persistence in trying logical solutions.

Patient rights and advocacy need to be emphasized more to patients.  Patients need to be equipped with methods of doing appropriate research on their own conditions using online resources. Anyone can make mistakes when misinterpreting research and “official” advice, even doctors, so just equip everyone with critical thinking about health literature.

Physicians should not be as fearful or disdainful of the “Googling patient”: instead, they need to be humble in the light of our incomplete knowledge and spotty research. You don’t know everything, doctor: next year you will know more, and not just because of your professional education, but because of clinical experience, which means listening to patients as well as looking at their test results and bodies. We need physicians to participate in patients’ logical and resourceful inquiries into their own symptoms. Many patients are really smart people.

In an ideal world, physicians would have time and motivation to keep up to date on the new developments in their own research journals so that patients like me don’t have to bring journal articles to the office to inform them of what they don’t yet know.  But since physicians really don’t have time for that, and I have more motivation than they do to study my own health conditions, I’m doing them a favor by bringing this recent research to their office with me.



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