Several months ago, I wrote an article on how to use the Internet skeptically to find the best resources for information on hypothyroidism.  Recently, I was informed by a reader that some of my information was incorrect; I had wrongly attributed a footnote to a layperson when I should have cited an MD, and I had not taken a critical enough look at the work of Mary Shomon of About.com Thyroid. I have modified the article accordingly, thus, this is Version II of the same article.

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 fact 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 it 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 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 lack of sleep or general burnout.

Thyroid disease is common and predominates among women, but sources disagree as to the prevalence. Wrong Diagnosis.com states that one out of every 13 people will have a thyroid disorder in the US,[3] with a one-in-eight risk for women, whereas author Mary Shomon says that women have a one-in-five chance of developing a thyroid problem during their lifetime, and at least half of the afflicted are undiagnosed.[4]

Establishing the incidence of thyroid disease depends on what measurement tool is used.  The most acceptable way of testing is to run a TSH, which measures thyroid stimulating hormone; 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 dilemma is that there is controversy as to what constitutes a normal TSH. Most reference ranges in laboratories in North America use a TSH between .5 mIU/liter and 5.0 mIU/liter to indicate normal thyroid function.[5]  However, in 2002 the American Association of Clinical Endocrinologists (AACE) declared that a TSH of .3 to 3.0 was normal. Dr. Jeffrey Garber, president of the AACE, wrote that the "AACE is currently in the process of creating new medical guidelines where this same topic will be addressed. These guidelines are forthcoming within the next year or so… However, as a result of a number of follow analyses and studies based on NHANES III [The Third National Health and Nutrition Survey conducted by the Center for Disease Control and Prevention] and the more recent Hanford study, it is almost certain that the new guidelines will not cite 3 as the upper limit of the normal range."[6]

Thyroid function is also assessed by looking at levels of T4 (thyroxine) and T3 (triiodothyronine) in the blood. But there is a raging debate as to whether T4 adequately converts to T3 within the body. Most conventional doctors believe that it does and they’re likely to prescribe T4 only, or synthetic, thyroid replacement. 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 that are made from a pig’s thyroid; they were no longer prescribed after the arrival of synthetics, but 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; and you’re 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 only feel slightly better at that time and remain unwell.  Your Toronto doctor tells you that your thyroid is fine because your TSH is at 4.3; 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 symptoms.”

Up come 467,000 hits.[7] Unbeknownst to you, many of them, including

listservs that you assume to be reputable, are very anti-medicine, frequented by people who have been sick for years and did not receive help from their doctors, so they took their medical care into their own hands.  They discovered that they could buy desiccated 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 time to talk to you, and while he may be clipped and abrupt at times, they’re warm and supportive.  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.[8]  Likewise about treating your own thyroid.  It’s not smart and excess thyroid can cause osteoporosis as well as heart arrhythmias.  But many people are doing it because they feel abandoned by doctors who say that they’re fine if they have a normal TSH. Some online groups believe that the TSH is worthless.[9]  They recommend relying on free T3 and T4 values, and finding a doctor with an alternative specialty who will prescribe T3.[10] Stop the Thyroid Madness advocates treating yourself by symptoms alone and completely disregarding lab work.[11]

About.com Thyroid takes a middle of the road approach.  It has good solid information along with ideas that have not been scientifically proven. About.com says that adding T3 can be beneficial, and often recommends desiccated thyroid over the preferred synthetic that most doctors prescribe.  Mary Shomon, activist, author and guide for About.com Thyroid, has said that a TSH level of less than 2.0 is optimal,[12] although there is no empirical evidence for this.

Alternative doctors have declared that lab tests are either unreliable or unnecessary.  Dr. Broda Barnes established 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 was low, eureka.  Your thyroid was underactive.[13] 

Dr. Kenneth Ain, 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 labeled as “close minded” if they won’t prescribe T3 to their self-diagnosing patients.[14]

If you want to approach your thyroid treatment from a skeptical point of view, know the facts. Follow the current TSH guidelines of .3 to 3.0, set out by the AACE, until they are revised, unless your doctor uses the old range of .5 to 5.0. Adrenal exhaustion is a serious endocrine disorder, known in its extreme form as Addison’s disease;[15] it’s only within the alternative medicine community that the term is tossed around loosely to mean 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 ACTH test (which measures the amount of adrenocorticotropic hormone in the blood), but don’t buy cortisone over the Net to treat yourself.

Some information on 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[16]; T3 will help with depression or weight loss[17] (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)[18]; T4 fails to convert to T3 properly within the body;[19] and the TSH is an unreliable test for thyroid dysfunction.[20] (According to the “AACE Medical Guidelines for Clinical Practice for Evaluation and Treatment of Hyperthyroidism and Hypothyroidism,” the TSH test has become the single best screening for thyroid dysfunction.)[21]

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[22]; take it at least four hours away from calcium, iron or multivitamins[23]; maintain an adequate iodine intake[24]; use a brand-name thyroid not generic, and stay on the same brand when you refill your pills[25]; 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)[26]; or consider changing synthetic brands.[27] And you’d be wise to avoid soy products, particularly liquid soy, which may interfere with thyroid medication absorption.[28]

But what about Mary Shomon, and patient advocate Janie Bowthorpe and her Internet following, who insist that they feel terrible on T4 only meds? Or Dr. Rhida Arem, who treated scores of patients over the decades who did not improve on synthetic replacement? Although I emphasize with anyone who has not found satisfaction with traditional medicine and feels substantially better on a different protocol, treatment with desiccated thyroid or T3 supplements has not been clinically substantiated. If you have been on an adequate dose of synthetic thyroid, and you're not feeling better, Dr. Kenneth Ain and his co-author, and thyroid patient, Sara Rosenthal, would advise you to look elsewhere for the source of your problems. Remember that taking too much thyroid can contribute to heart disease as well as osteoporosis.  Focusing on the thyroid as the source of your problem when blood tests are normal may also blind you to the presence of other conditions that could be sapping your strength like fibromyalgia, depression, low iron reserves or low blood sugar.  Having said that, if you are aware of the risks and feel significantly better on Armour thyroid or its equivalent, you’re an adult; you can make your own educated choices.

The Internet has quite a bit of good information, as long as you don't use it as a substitute doctor.  Aside from the confusion 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, Medline Plus or Snopes, which 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.

Bibliography

About.com Thyroid. “Diagnosing Thyroid Conditions,” Shomon, Mary J,

[http://thyroid.about.com/od/gettestedanddiagnosed/a/diagnosis.htm], website accessed January 23, 2009.

_____. “Thyroid Disease 101: The Basics,” Shomon, Mary J,

[http://thyroid.about.com/cs/basics_starthere/a/thyroid101.htm], website accessed January 12, 2009.

_____. “Thyroid Disease Symptoms and Risk Factors,” Shomon, Mary J,

[http://thyroid.about.com/od/symptomsrisks/a/symptomsrisks.htm], article updated June 21, 2008, website accessed January 12, 2009.

_____. “Treatments for Thyroid Diseases and Conditions,” Shomon, Mary J, 

[http://thyroid.about.com/od/thyroiddrugstreatments/a/treatments_2.htm], 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.

American Association of Clinical Endocrinologists.  "2004 Thyroid Awareness Campaign Encourages Patients and Physicians to Take Control of Thyroid Health," [http://media.aace.com/article_display.cfm?article_id=4597], website accessed December 7, 2009.  

_____. “Thyroid Imbalance? Target Your Numbers — January is Thyroid Awareness Month,” January 10, 2006, [http://media.aace.com/article_display.cfm?article_id=4646], website accessed December 10, 2009.

American Association of Clinical Endocrinologists Newsroom.  "Jeffrey R. Garber, MD, FACP, FACE, [http://media.aace.com/article_display.cfm?article_id=4900], website accessed December 10, 2009.

American Thyroid Association. “Patient Brochures,” [http://www.thyroid.org/patients/patient_brochures/hypothyroidism.html], website accessed January 12, 2009.

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

Barnes, Broda, MD. Hypothyroidism: The Unsuspected Illness.  HarperCollins, 1976.

Broda Barnes, MD, Research Foundation, Inc. “Membership,” [http://www.brodabarnes.org/membership.htm], website accessed January 23, 2009.

Blanchard, Ken, MD and Brill, Marietta Abrams. What Your Doctor May Not Tell You About Hypothyroidism: A Simple Plan for Extraordinary Results. Grand Central Publishing, 2004.

Bowthorpe, Janie. Stop the Thyroid Madness: A Patient Revolution Against Decades of Inferior Treatment. Grape Publishing, 2008.

Center for Disease Control and Prevention. “NHANES III — Laboratory Data File,”

[http://wonder.cdc.gov/wonder/sci_data/surveys/hanes/hanes3/type_txt/lab.asp], website accessed December 7, 2009.

The Doctors’ Medical Library, “Broda Barnes” by Ron Kennedy, [http://www.medical-library.net/content/view/310/41/], website accessed January 23, 2009.

Mayo Clinic.com. “Hashimoto’s Disease,” [http://www.mayoclinic.com/health/hashimotos-disease/DS00567], website accessed January 18, 2009.

Medicine net.com, “Hashimoto’s Thyroiditis: Signs, Symptoms, Causes, Diagnosis, and Treatment, [http://www.medicinenet.com/hashimotos_thyroiditis/article.htm], website accessed January 18, 2009.

Medline Plus. “Thyroid Diseases,” [http://www.nlm.nih.gov/medlineplus/thyroiddiseases.html], website accessed January 20, 2009.

National Endocrine and Metabolic Diseases Information Service: A Service of the National Institute of Diabetes and Digestive and Kidney Disease (NIDDK, NIH), [http://www.endocrine.niddk.nih.gov/pubs/addison/addison.htm], website accessed January 12, 2009.

Ontario Association of Medical Laboratories (OAML), “Guideline for the Use of Laboratory Test to Detect Thyroid Dysfunction,”

[www.oaml.com/PDF/FINALTSH%20Guideline%20July%2018,%2007.pdf],

Revised 2007, website accessed January 12, 2009.

Pratt, Maureen.  The First Year: Hypothyroidism.  Marlowe & Co., 2003.

RxList. The Internet Drug Index, “Cortone,” [http://www.rxlist.com/cortone-drug.htm], website accessed January 18, 2009.

Shomon, Mary J. Living Well With Hypothyroidism: What Your Doctor Doesn’t Tell You… That You Need to Know. HarperCollins, 2000.

_____. Revised. HarperCollins, 2005.

_____. The Thyroid Diet: Manage Your Metabolism for Lasting Weight Loss. HarperCollins, 2007.

_____. The Thyroid Hormone Breakthrough. HarperCollins, 2006.

Snopes.com. “Soy Sorry: Thyroid and Soy,” [http://www.snopes.com/medical/toxins/soya.asp], website accessed January 21, 2009.

Stop the Thyroid Madness.com. “Armour Vs. Other Brands” by Bowthorpe, Janie,

[http://www.stopthethyroidmadness.com/t4-only-meds-dont-work/], website accessed January 18, 2009.

_____. “T4-Only Meds Do Not Work,” by Bowthorpe, Janie, [http://www.stopthethyroidmadness.com/armour-vs-other-brands/], website accessed January 12, 2009.

_____. “Those Durn Adrenals,” by Bowthorpe, Janie,

[http://www.stopthethyroidmadness.com/adrenal-info/], website accessed January 12, 2009.

The Thyroid Foundation of Canada, [http://www.thyroid.ca/], website accessed January 18, 2009.

The Thyroid Foundation of Canada, Ottawa Chapter, [http://ottawa_thyroid.ncf.ca/links.htm], website accessed January 18, 2009.

Thyroid—Info, “Controversy Continues over Treating Symptomatic People with Normal THS Levels,” [http://www.thyroid-info.com/articles/weetman.htm], website accessed January 26, 2009.

Women’s Health.gov, “Frequently Asked Questions: Hashimoto’s Thyroiditis,” [http://www.womenshealth.gov/faq/hashimoto-thyroiditis.cfm], website accessed January 20, 2009.

Women’s Health Matters Network. “American Thyroid Association: Web Resource,”

[http://www.womenshealthmatters.ca/resources/show_res.cfm?ID=38722], website accessed January 20, 2009.

Wrong Diagnosis.com. “Prevalence and Incidence of Thyroid Disorders,” [http://www.wrongdiagnosis.com/t/thyroid/prevalence.htm], website accessed January 27, 2009.

[1] Ain, pg 4, (2005).

[2] Shomon, pg 3, (2006).

[3] Wrong Diagnosis.com, (2009).

[4] About.com. Thyroid, “Thyroid Disease 101: The Basics,” (2009). 

[5] Ain, pg 52, (2005).

[6] Garber, Jeffrey R., MD, president of the American Association of Clinical Endocrinologists, personal correspondence and phone call with Greg Willis at AACE, (December 7, 2009).

[7] Google, (December 14, 2009).

[8]  RxList, (2009).

[9] Stop the Thyroid Madness, “T4-Only Meds Do Not Work,” (2009).

[10] _____.

[11] _____.

[12] About.com. Thyroid, “Diagnosing Thyroid Conditions,” (2009).

[13]  Doctors’ Medical Library, (2009).

[14] Ain, pg 240, (2005).

[15] NIDDK, (2009).

[16]  Doctors’ Medical Library, (2009).

[17]  Arem, pg 285, (1999).

[18] Ain, pg 58, (2005).

[19] _____.

[20] Stop the Thyroid Madness.com, “T4-Only Meds Do Not Work,” (2009).

[21] American Association of Clinical Endocrinology, “Thyroid Imbalance? Target Your Numbers - January is Thyroid Awareness Month,” (2006).

[22] Arem, pg 249, (1999).

[23]  Shomon, pg 73, (2006).

[24] _____.

[25] _____, pg. 69, (2006).

[26] _____, pg. 73, (2006).

[27] _____, pg. 73, (2006).

[28] _____, pg 270, (2000).