Should Thyroid Patients Self-Medicate?

An Editorial from Mary Shomon

One of the most controversial issues facing thyroid patients in the US and worldwide is whether patients should medicate themselves to treat thyroid problems, and in particular, an underactive thyroid/hypothyroidism. When I say "self-medicate," I mean buying prescription thyroid hormone replacement medication without a doctor's prescription, and then taking that medication without a doctor's oversight. (I am not referring to those patients whose doctors prescribe thyroid medication but then allow the patients to go up or down in dosage between visits.)

Self-medication for hypothyroidism clearly has some obvious drawbacks for patients.

First, if a person has not been diagnosed as hypothyroid, but instead, self-diagnoses, then another condition may be missed - and go untreated. Symptoms like fatigue, weight gain, and depression are common in hypothyroidism, but they are also symptoms of dozens of other conditions--some serious. Failure to get proper diagnosis and treatment could, therefore, be a danger to a patient who mistakenly self-diagnoses and self-medicates for presumed hypothyroidism.

Second, thyroid function is not always stable. People can have temporary periods of hypothyroidism due to medications, thyroiditis, or postpartum thyroid issues after having a baby, followed by a return to normal thyroid function. A proper level of treatment can quickly become overmedication when the thyroid is fluctuating.

Third, there is the risk of undertreatment. Being undermedicated increases the risk for many other conditions including heart disease, obesity, and depression. (Of course, receiving no treatment at all for hypothyroidism also carries an even greater risk of these health problems.)

But the fourth and greatest concern for many is the risk that those who self-medicate will become overmedicated. Taking too much thyroid hormone replacement medication can cause a variety of symptoms, including anxiety, panic attacks, tremor, chronic diarrhea, high blood pressure, tachycardia (fast heart rate), heart palpitations, heart arrhythmia, and a potentially dangerous heart rhythm irregularity known as atrial fibrillation. Atrial fibrillation - sometimes referred to as "a-fib," can cause a stroke, which can sometimes result in permanent disability and even death.

Some patients suggest that self-medication is safe as long as patients are knowledgeable. I know a number of patients who have successfully self-treated. At the same time, I've also heard from dozens of thyroid patients who ended up in emergency rooms suffering from atrial fibrillation after periods of self-medication. Many of these patients were extremely well-versed and well-read on the subject of thyroid disease, and considered themselves highly knowledgeable about self-treating their hypothyroidism. Still, they ended up overmedicated and had to face a potentially serious health crisis.

While most patients - even those who feel confident in their own knowledge -- are aware that there is some risk to self-medicating, the practice still takes place because patients face many major obstacles that prevent them from getting accurate and effective thyroid diagnosis and treatment. What are these obstacles?

First, there are people who have been diagnosed with hypothyroidism in the past, but who no longer can afford to pay for doctor visits. In the US alone, we have many millions of uninsured, millions of seniors on fixed incomes, and millions more Americans who have lost their jobs during the economic downturn. Many people simply cannot afford to pay out of pocket for doctors. Around the world, access to decent doctors and medical care is a luck of the draw, and depends on geography, the economy, the prevailing health care system, and one's personal financial situation.

Second, many doctors remain confused about how to interpret the thyroid stimulating hormone (TSH) test - the test they themselves call the "gold standard" for diagnosing hypothyroidism. If a patient has symptoms of hypothyroidism, and has a test result that falls in the TSH test's "limbo" area -- above 2.5 and below 4.0 to 5-5.5 -- the patient's TSH result is labeled by US labs as "normal" on the lab report. A TSH in that range is considered subclinically hypothyroid by some experts, however. Endocrinologists have been fighting about and debating this issue for almost a decade, ever since the American Association of Clinical Endocrinologists (AACE) recommended in early 2003 that the normal reference range for the TSH test be narrowed to 0.3 to 3.0. Many doctors, however, still follow the old cutoff point, and will only diagnose and treat hypothyroidism if a patient has a TSH that is higher than 4.5 to 6.0.

Third, there are patients who have hypothyroidism symptoms, and who have so-called "normal" results on the TSH test- falling anywhere in the range between .3 to 6.0 -- but who have elevated thyroid antibodies indicative of autoimmune Hashimoto's disease. Many doctors are either unaware of - or do not practice according to -- research that suggests that in some antibody-positive patients, thyroid treatment may relieve hypothyroid symptoms and prevent progression to overt hypothyroidism.

Fourth, there are patients who have a "normal" TSH, but the actual circulating levels of thyroid hormone - the Free T4 and Free T3 - show clear deficiencies in these hormones. Many doctors refuse to recognize that deficiencies or low-normal levels of Free T4 and/or Free T3 - as well as elevated levels of Reverse T3 or improper ratios of Reverse T3/Free T3 -- are indicative of hypothyroidism. T4 is converted to T3 -- the active thyroid hormone at the cellular level. Many physicians assume, however, that everyone can convert T4 to T3 well and equally. Meanwhile, integrative physicians, and some innovative endocrinologists, acknowledge that some patients may have antibodies, enzyme deficiencies, nutritional deficiencies, or physiological defects that impair T4 to T3 conversion, and that this impairment may warrant treatment.

Fifth, many patients are treated with a levothyroxine drug - i.e., Synthroid, Levoxyl, Levothroid, Eltroxin, or generic levothyroxine/l-thyroxine, but still have obvious hypothyroidism symptoms, even after treatment has returned these patients' thyroid blood test results to "normal." Some of these patients request the addition of a T3 medication -- i.e., Cytomel (liothyronine), or time-released T3 -- or ask for prescription natural desiccated thyroid -- i.e., Armour, Nature-Throid , or Erfa. The use of T3 is controversial, however, and many doctors do not believe in using T3 drugs or natural thyroid medications whatsoever. These doctors often claim that no additional thyroid medication is needed because the symptoms are not thyroid-related, or that the symptoms are evidence of a mental health problem and warrant antidepressant treatment. Frequently, we hear "no one needs T3 or natural thyroid" because "everyone converts synthetic T4 to T3 perfectly anyway." This "you don't need it/everyone converts T4 to T3" mantra is a popular and enduring myt

h in hypothyroidism treatment. Some doctors refuse to prescribe T3 and/or natural thyroid drugs because they categorically feel that these medications pose a risk of cardiac side effects for everyone. But the risks are minimal when the medications are properly used and prescribed. For otherwise healthy patients, the risk of T3 and natural thyroid drugs is if the patient is seriously overmedicated. Doctors are understandably cautious however with elderly patients and patients with pre-existing heart conditions/heart disease, as these subgroups may be particularly sensitive to T3 or natural thyroid medications that contain T3. (Interestingly, there is also research that shows that untreated hypothyroidism increases the risk of heart disease.)

Sixth, there are some patients covered by health maintenance organizations (HMOs) or medical insurance, whose doctors refuse to even test for hypothyroidism, refuse to treat borderline/subclinical hypothyroidism, refuse to treat autoimmune Hashimoto's disease, refuse to test for or treat Free T4/Free T3 imbalances/irregularities, and/or refuse to prescribe T3 medications and/or natural thyroid drugs. Some of the patients seeing these physicians are financially unable to pay out of pocket for a visit to a more thyroid-savvy physician.

Finally, outside the US, self-medication becomes almost a necessity for some patients. In the United Kingdom, for example, most residents use the National Health Service (NHS) for their medical care. The NHS doctors are required, however, to follow very rigid -some would say, outdated and in many cases wrong -- criteria in diagnosing and treating hypothyroidism. At the same time, there are few private doctors to properly diagnose and treat hypothyroidism, and those doctors are often very expensive.

A Challenge for Thyroid Patients

So, in the end, should patients self-medicate, or not? I have recently caused concern among patients who self-medicate because I have said that I do not advocate self-medication, and that the Save Natural Thyroid Coalition - the group I founded during the summer of 2009 to help patients cope with shortages, unavailability and FDA crackdown on natural desiccated thyroid drugs - also does not advocate self-medication.

There is no question that patients are in a difficult situation. And it makes complete sense to me that some patients feel that they have no other option but to self-medicate. I'm not criticizing the individual decision to self-medicate - that is something that each person has to decide for him or herself. It's heartbreaking that some people are forced by circumstance to make that choice, and I am furious at how cavalierly some doctors view thyroid disease, an attitude that forces some patients to make that choice. I also fervently hope that those who do self-medicate do so with extreme caution and are able to avoid any complications.

A controversial aspect for some patients is my belief that actively promoting self-medication - and in particular, promoting self-medication with natural desiccated thyroid -- ultimately can work against thyroid patient interests.

We've already faced agonizing periods of natural thyroid drugs being in short supply or totally off the market, unexplained raw materials shortages, and mysterious developments seemingly driven by behind-the-scenes FDA actions. Natural thyroid drugs are also on the FDA's long list of "unapproved" drugs that will eventually be forced to go through a time-consuming and costly approvals process. The FDA has made it clear that natural thyroid is an unapproved drug, and not grandfathered, and that it will eventually need to go through the approvals process in order to remain on the market. When and how that will happen is still being decided. The FDA's decision-making process for unapproved drug approvals is NOT transparent. What we do know is that political and economic forces behind the scenes - forces that are not concerned with patient welfare - are frequently driving the decision-making process.

Some doctors, as well as officials from the FDA have told me, off the record, that they feel that negative publicity - including in medical journals -- regarding thyroid self-medication has moved natural desiccated thyroid drugs into an unwanted limelight - and has resulted in them getting greater scrutiny by the FDA.

Another obstacle to natural thyroid drugs is Dr. Sidney Wolfe of Public Citizen, who was appointed to the FDA's Drug Safety and Risk Management Advisory Committee. For some reason that is still inexplicable, the confused Dr. Wolfe - who at times has stated unequivocally that natural thyroid is an over-the-counter supplement (it's not), and that it's made from cows (it's porcine, from pigs) -- is a rabid opponent of natural desiccated thyroid (or at least whatever he currently believes natural desiccated thyroid to be.) He published error-filled diatribes against Armour Thyroid in Public Citizen's "Worst Pills, Best Pills" newsletter long before he was tapped to serve on the FDA committee. He is now in a position to decide which drugs end up in the crosshairs for FDA's Unapproved Drugs campaign.

And the main obstacle remains the thyroid "establishment" -- and here I would include endocrinologists, conventional doctors, thyroid medical societies, the FDA, other legislators, and the big drug companies making levothyroxine - who are only happy to seize on and make hay out of ANY and ALL negative publicity, bad outcomes, or perceived problems with natural thyroid and/or T3 treatment, hoping to use bad news as a way to get these drugs removed from the market. Sadly, but not surprisingly, the "concerns" more often have nothing to do with patient welfare and everything to do with self-interest, financial gain, thyroid groupthink, or misinformation.

My Thyroid Advocacy Mission: Working To Overcome Thyroid Groupthink

As a patient advocate, I want to focus my efforts on helping to educate and raise awareness, and advocate for changes to the system itself. Ultimately, I would like us to live in a world where fewer thyroid patients are forced to make the difficult choice between self-medication- and its associated risks and benefits - and going without treatment.

Make no mistake, this is a challenging objective. The fight against the dogmatic world of endocrinology, and the "business" of thyroid medicine - and what a number of doctors have referred to as "the tyranny of the TSH" - is a hard one. It's a battle many of us have been fighting for more than a decade. We've seen some improvements, and some setbacks along the way.

As we know, from a medical/scientific perspective, many endocrinologists and endocrinology organizations are slow to adopt changes, and, sadly, often seem more interested in the numbers on a lab report than in the patient sitting before them and whether that patient is enjoying any quality of life. Doctors rely on the TSH test - a secondary test of a pituitary hormone - to diagnose and manage hypothyroidism, while feeling justified in totally ignoring the levels of Free T3 - the active hormone that actually goes into cells to deliver oxygen and energy. Many doctors don't even bother to test for thyroid antibodies - which can tell us when a thyroid is in autoimmune failure.

Meanwhile, several generations of endocrinologists and physicians have been told that synthetic thyroxine (T4) -- known as levothyroxine/l-thyroxine - or more commonly, by the brand name Synthroid - is the one-stop solution. They've been told that levothyroxine alone is superior to combination therapy with synthetic triiodothyronine (T3) - known as liothyronine (Cytomel). They have been told that natural desiccated thyroid - which was, for half a century the only hypothyroidism treatment -- is "old-fashioned," "unstable," and inferior to the synthetic thyroxine. The actual science is all over the place, however, and whatever treatment protocol a physician advocates - whether it's levothyroxine monotherapy, synthetic T4/T3 combination therapy, or use of natural desiccated thyroid - there are studies that can back up their chosen position. And when a doctor is faced with a study that contradicts her or her opinion, you'll often hear them say, "well, it's a 'bad' study."

Apart from the medical/scientific debate, pharmaceutical industry dollars have a chilling effect on the mindset of thyroid practitioners.

It's no secret that the key thyroid medical societies - i.e., the American Thyroid Association, and American Association of Clinical Endocrinologists - get hundreds of thousands of dollars every year in grants, funding, support, and event sponsorship from the makers of Synthroid. And many of the doctors who have leadership roles in these organizations also receive funds from Synthroid's manufacturer.

The Synthroid brand of levothyroxine has been a top-selling drug in the US for decades, and it is extremely profitable. At medical schools, endocrinologist's offices, and in hospital staff cafeterias around the country, lunch trays and muffin baskets arrive regularly, paid for by Synthroid's manufacturer, as a way to help ensure that their vision of thyroid treatment - one that does NOT include T3 and natural thyroid -- is the one that doctors, nurses, office staff, medical students and young doctors hear. And don't forget the marketing pitches--as well as free drug samples and swag like pens, mugs, literature, prescription pads, plastic model thyroids, and other items - that the drug reps are delivering by the thousands every week to doctors offices, and handing out at every thyroid medical meeting.

The end result: we have several generations of doctors who march in lock-step, believing - and continuing to be hear the message everywhere they go -- that Synthroid is the one-stop solution for anyone and everyone with hypothyroidism, that everyone converts T4 to T3 perfectly, that no one needs T3, and that there is no role for natural desiccated thyroid in hypothyroidism treatment.

Thyroid groupthink and the susceptibility of some doctors to financial influences are so prevalent that there are even some endocrinologists and physicians who publicly condemn and vilify their fellow physicians who do prescribe T3 drugs or natural thyroid medications for patients.

Doing whatever I can to help dismantle this sort of rigid thinking -- thinking that condemns so many people to a life of illness -- is a key focus of my advocacy.

My mission is to promote awareness of the full range of treatment options that can be legally prescribed - including T3 and natural thyroid drugs. My goal is to work toward a world where the full range of legitimate thyroid treatment options will become better understood, better known, better accepted, affordable, and legally available... a world where there is greater understanding among doctors, insurers, pharmacies, medical societies, and patients of the full range of legitimate thyroid treatment options. And by extension, my mission is also to help protect these options against attacks by the various interest groups who would like to see them taken off the market.