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Now that we’re just one click away from accessing the greatest medical library in history, for the first time ever the general public has easy access to published medical articles, a host of medical blogs and websites, and a vast array of health-related support groups. Is this a good thing? Are most of us able to discern facts from fiction? And do Internet support groups embrace evidence-based medicine, or do many espouse ideas that are actually pseudoscience?

When we’re looking up information on a particular disease or condition, we have to consider the source. Websites that are run by the government or various health foundations are generally reliable. Internet support groups and individual blogs are another story.

For example, take thyroid disease. The thyroid is a small gland about the size of a walnut that’s right in front of the trachea (windpipe).^[1] The word thyroid comes from the Greek word "thyreoeides" for "shield-shaped," and indeed the gland is often said to look like a shield or a butterfly.^[2] As part of the endocrine system, the thyroid affects every cell in the body — it regulates our energy levels and acts as a thermostat, so when the thyroid is underactive, a person may feel cold, clammy, constipated and exhausted. When the thyroid is overactive, people may experience flushes, restlessness, insomnia, heart palpitations and ironically, exhaustion, due to feeling a lack of sleep or general burnout.

Thyroid disease is common, with an estimated 200 million people affected worldwide.^[3] It predominates among women, who have a one-in-five chance of developing a thyroid problem during their lifetime, according to author Mary Shomon, who believes that at least half of the afflicted are undiagnosed,^[4] but other sources say that these figures are too high and that one out of every 13 people will have a thyroid disorder in the US, with a one-in-eight risk for women.^[5]

The most acceptable way of testing for thyroid disorders is to run a thyroid stimulating hormone (TSH) test.^[6] The less well the thyroid is functioning, the more the pituitary gland manufactures thyroid stimulating hormone to get the thyroid moving again. Thus, a high TSH indicates an underactive or low thyroid.

But one of the reasons that patients often run to the Internet for answers to their thyroid dilemmas is that there is controversy as to what constitutes a normal TSH. Most reference ranges in laboratories in North America use a TSH between 0.5 and 5.0 to indicate normal thyroid function.^[7] However, in 2002 the American Association of Clinical Endocrinologists (AACE) declared that a TSH of 0.3 to 3.0 was normal,^[8] and many practitioners believe that a TSH of less than 2.0 is ideal.^[9] Unfortunately, many doctors and labs insist on using the old reference ranges, so if you’re experiencing symptoms and have a TSH of 4.6, you may be considered perfectly healthy in some locales but underactive in others.

Thyroid function is also assessed by looking at levels of T4 (thyroxine)^[10] and T3 (triiodothyronine)^[11] in the blood. However, there is a raging debate as to whether T4 adequately converts to T3 within the body. Most conventional doctors believe that it does, and so they’re likely to prescribe T4 (or a synthetic thyroxine replacement) only. But another school of thought, which predominates on the Net and among alternative practitioners, believes that T3 is the active and essential ingredient in the thyroid. These doctors and laypeople propose that patients take combination T3/T4 medications, or revert to using desiccated thyroid, which was prescribed before the advent of synthetic T4s like Synthroid, Levoxyl and Eltroxin. Armour and Nature are desiccated thyroid hormones made from a pig’s thyroid. They were no longer prescribed after the arrival of synthetics, but nevertheless they've made a big revival within the alternate medicine community within the last decade.

How does this affect a skeptical patient who wants to find reliable thyroid information on the Web? Let’s say that you’re a woman who has just been diagnosed with hypothyroidism - an underactive thyroid. You feel rundown, lethargic, and cold; are gaining weight and feel irritable. Your doctor prescribes 100 micrograms of Synthroid and asks you to return in six to eight weeks for a blood test. You feel slightly better at that time but remain basically unwell. Alas, your Toronto doctor tells you that your thyroid is fine because your TSH is at 3.4; he says that you may be depressed. You're not aware that a doctor in another city, say Chicago, may have increased your dose to 125 micrograms based on the same exact lab work. All you know is that you still feel ill, so you jump onto the information superhighway and type in the words "underactive thyroid."

Up come 695,000 hits.^[12] Unbeknownst to you, many of the sites, including listservs that you assume to be reputable, are very anti-medicine. They are frequented by people who have been ill for years and who did not receive the help they needed from their doctors, so they took their medical care into their own hands. They have discovered that they can buy Armour thyroid online without a prescription, as well as Cortef, a form of cortisone.

You’re relieved to discover people with the same problem! After months, if not years, of searching, you’ve finally found the answer, and now you have a community of people with the same symptoms. Unlike your doctor, they have all the time in the world to talk to you, and while he may be clipped and abrupt at times, they’re warm and empathetic. You join the forums, make friends, and buy your Armour online, although fellow forum members are careful to alert you to the potential risks of self-medicating. If the medication gives you palpitations and makes you nervous, the group might say that you’re suffering from adrenal exhaustion — ah ha! Who would’ve known? Your stupid doctor forgot about that, too. You’re beginning to hate your doctor, and because other forum members are doing so, you purchase Cortef on your own because, after all, how can it hurt? It’s such a low dose.

Wrong! No one should be on cortisone without a prescription. It can cause weak and brittle bones.^[13] Likewise about treating your own thyroid. It’s not smart, and excess thyroid hormone can cause osteoporosis as well as heart arrhythmias. But numerous people are doing it online because they feel abandoned by doctors. Physicians say that all you need is the TSH test, but certain online support groups insist that the TSH is worthless and that the test can be thrown out the window.^[14] They recommend relying on free T3 and T4 values, and finding a medical doctor with an alternative specialty who will prescribe T3.^[15] Some groups advocate treating yourself by symptoms alone and completely disregarding lab work.^[16]

Certain alternative doctors have also declared that all lab tests are either unreliable or unnecessary. Dr. Broda Barnes^[17] established quite a name for himself by publishing two books that advocated testing your thyroid by taking your basal (underarm) temperature with a mercury thermometer — if the temperature is low, then, eureka, your thyroid is underactive.^[18]

Dr. Kenneth Ain,^[19] Director of the University of Kentucky Thyroid Clinic, says that there is a "cult-like mind control on some of the listservs and Internet organizations" where doctors are labelled as "closed minded" if they won’t prescribe T3 to their self-diagnosing patients.^[20]

But this vast patients' rights movement must be taken seriously. There’s a reason why millions of people google their physical symptoms, and it's not because they all suffer from hypochondria or arrogantly believe that they’re smarter than their doctors. These are real people, mainly women, who are sick and in pain. What they are seeking is good, reliable information.

If you want to approach your thyroid diagnosis from a skeptical point of view, know the facts. Ideally, your TSH should be between 0.3 to 2.0.^[21] However, if your TSH is at 3.8 and you feel fine, don’t worry about it. Adrenal exhaustion is a serious endocrine disorder, known in its extreme form as Addison’s disease.^[22] It’s only within the alternative medicine community that this term is tossed around loosely to mean a total burnout that can be effectively treated by low-dose cortisone. If you’re worried about your adrenals, speak to your doctor and have your cortisol levels measured, along with an adrenocorticotropic hormone (ACTH) test,^[23] but don’t buy cortisone over the Net to treat yourself.

Much of the information from Internet support groups is accurate and helpful, but certain statements are completely erroneous, such as:

• the thyroid can be diagnosed solely by low body temperature;^[24]
• T3 will help with depression or weight loss^[25] (early studies suggested that this was true, but they were later disproven by several larger, better designed clinical studies published in 2003 that failed to confirm the superiority of using a T3/T4 combination or desiccated thyroid over T4 synthetic thyroid)^[26];
• T4 fails to convert to T3 properly within the body;^[27] and
• the TSH is an unreliable test for thyroid dysfunction.^[28]

If your thyroid is too low and you've been prescribed medication, most experts would suggest that you take your pill at the same time every day, preferably on an empty stomach;^[29] take it at least four hours away from calcium, iron or multivitamins;^[30] maintain an adequate iodine intake;^[31] use a brand-name thyroid, not a generic one, and stay on the same brand when you refill your pills;^[32] and maintain a diet consistent in fiber (e.g., don’t have 10 grams of fiber a day one day and 30 grams the next day)^[33] — or consider changing synthetic brands.^[34] As well, you’d be wise to avoid soy products, particularly liquid soy, which may interfere with thyroid medication absorption.^[35]

But what about the antagonists of orthodox treatment? What about patient advocate and author Janie Bowthorpe and her Internet following, who insist that they feel terrible on T4? Or Dr. Rhida Arem, who has treated scores of patients over the decades who did not improve on synthetic replacement? I’m loath to dismiss out-of-hand such a large number of individual experiences and long-term results from clinical practice; thus all I can conclude is that these men and women may, in fact, be feeling better, but their mode of treatment has not been clinically substantiated. If you’re not getting well, Mary Shomon suggests working carefully with your doctor to experiment with T3, based on your symptoms and lab work.^[36] But Dr. Kenneth Ain and his co-author Sara Rosenthal, a thyroid patient herself, would advise that you look elsewhere for the source of your problems.

You can learn a great deal on the Internet as long as you don't use it as a substitute doctor. Aside from the controversy regarding the validity of the TSH test, one of the main reasons that a disconcerting number of people are both diagnosing and treating themselves online for thyroid disorders is because they have poor relationships with their doctors. Long gone are the days when the doctor used to say, "Jump" and the patient would say, "How high?" Today we understand that patients have the right and the responsibility to choose a doctor that they like and respect. If you're not receiving the kind of care that you deserve from your doctor, try seeking a second opinion. When you're happy with your medical care, you're more likely to use the Internet as an adjunct rather than a primary form of care.

If you go surfing, rely on large and reputable sites such as MayoClinic.com, The Thyroid Foundation of Canada, The American Thyroid Association, About.com thyroid, Medline Plus or even Snopes, a skeptic website that monitors hoaxes and alleged cures for all kinds of conditions, including thyroid disease. Or join a local support group as part of the National Thyroid Foundation.

Good luck, and happy skeptical hunting.

Notes:

1. ^ Ain, pg 4, (2005).
2. ^ Shomon, pg 3, (2006).
3. ^ _____, pg 7, (2006).
4. ^ About.com.thyroid, "Thyroid Disease 101: The Basics," (2009).
5. ^ WrongDiagnosis.com, (2009).
6. ^ Medline Plus, "Medical Encyclopedia - TSH", (2009).
7. ^ Ain, pg 52, (2005).
8. ^ _____.
9. ^ About.com.thyroid, "Diagnosing Thyroid Conditions," (2009).
10. ^ _____, pg 21.
11. ^ _____, pg 14.
12. ^ Google, (January 27, 2009).
13. ^ RxList, (2009).
14. ^ Stop the Thyroid Madness, "T4-Only Meds Do Not Work," (2009).
15. ^ _____.
16. ^ _____.
17. ^ Wikipedia, "Dr. Broda Otto Barnes", (2009).
18. ^ Doctors' Medical Library, (2009).
19. ^ Thyroid Cancer Doctor.com, (2009).
20. ^ Ain, pg 240, (2005).
21. ^ About.com.thyroid, "Diagnosing Thyroid Conditions," (2009).
22. ^ NIDDK, (2009).
23. ^ Medline Plus, "Medical Encyclopedia - ACTH", (2009).
24. ^ Doctors' Medical Library, (2009).
25. ^ Rhida, pg 285, (1999).
26. ^ Ain, pg 58, (2005).
27. ^ _____.
28. ^ Stop the Thyroid Madness.com, "T4-Only Meds Do Not Work," (2009).
29. ^ Rhida, pg 249, (1999).
30. ^ Shomon, pg 73, (2006).
31. ^ _____.
32. ^ _____, pg. 69, (2006).
33. ^ _____, pg. 73, (2006).
34. ^ _____, pg. 73, (2006).
35. ^ _____, pg 270, (2000).
36. ^ _____, pg. 73, (2006).

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_____. "Thyroid Disease 101: The Basics," Shomon, Mary J, website accessed January 12, 2009.

_____. "Thyroid Disease Symptoms and Risk Factors," Shomon, Mary J, article updated June 21, 2008, website accessed January 12, 2009.

_____. "Treatments for Thyroid Diseases and Conditions," Shomon, Mary J, article updated June 21, 2008, website accessed January 12, 2009.

Ain, Kenneth, MD and Rosenthal, Sara. The Complete Thyroid Book: Everything You Need to Know to Overcome Any Kind of Thyroid Problem. McGraw-Hill, 2005.

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Arem, Ridha, MD. The Thyroid Solution: A Mind-Body Program for Beating Depression and Regaining Your Emotional and Physical Health. Ballantine Books, 1999.

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_____. Revised. HarperCollins, 2005.

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_____. The Thyroid Hormone Breakthrough. HarperCollins, 2006.

Snopes.com. "Soy Sorry: Thyroid and Soy," website accessed January 21, 2009.

Stop the Thyroid Madness.com. "Armour Vs. Other Brands" by Bowthorpe, Janie, website accessed January 18, 2009.

_____. "T4-Only Meds Do Not Work," by Bowthorpe, Janie, website accessed January 12, 2009.

_____. "Those Durn Adrenals," by Bowthorpe, Janie, website accessed January 12, 2009.

The Thyroid Foundation of Canada, website accessed January 18, 2009.

_____, Ottawa Chapter, website accessed January 18, 2009.

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