For those with thyroid issues from one of our advocates

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http://thyroid.about.com/cs/doctors/a/crazy.htm Why Your Doctor Thinks I'm Crazy! by Shomon I was talking with a reporter the other day, who is interviewing various doctors for an article on thyroid disease. The reporter said that in speaking with some of the mainstream endocrinologists, one of the doctors had said " Shomon is crazy." The reporter was a bit confused as to why some doctors would suggest such a thing. It's a safe bet that some of you reading this will also have doctors who think that I'm crazy. One very well-known East Coast endocrinologist actually did a presentation to his fellow endocrinologists, and to start off the session, he did a Letterman "Top 10" style list of "The Top Ten Signs You Have a Crazy Thyroid Patient on Your Hands." (Isn't it comforting to know that when the endocrinology community gets together for educational

sessions, they start out by making fun of patients?) In any case, "She walks in carrying a copy of Shomon's book" was actually number 2 on the list! Hearing that doctors say I'm "crazy," and that they dread patients who walk in carrying copies of my book is the BEST thing anyone could tell me. Because that means that I'm doing my job as a patient advocate...and the endocrinologists are taking notice!! But let's take a look at some of the reasons why some doctors say I'm crazy, while at the same time, millions of visits are made each month to my websites, and hundreds of thousands of copies of my books, guides and newsletters are in the hands of thyroid patients around the nation and the world... 1. Endocrinology is a specialty that attracts "accountant" personalities -- who want to

view you as a "lab value." If practiced properly, endocrinology is a specialty that actually requires great finesse and subtlety, people skills, and the ability to integrate the complicated workings of the endocrine and hormonal systems. Unfortunately, endocrinology does not seem to attract warm, people-oriented personalities -- in fact, it seems to attract just the opposite. The ranks of endocrinologists are filled with doctors who view things in a very rigid, very black and white manner. I call them the "accountants" of medicine, because endocrinologists typically focus on diabetes or thyroid disease, both conditions that are "diagnosed and managed by the numbers." In diabetes, blood sugar and insulin levels are measured, and drugs are given to keep the numbers "normal." In thyroid disease, TSH levels are measured, and drugs and treatments are given to keep the numbers "normal." If the numbers are ok, the patient is ok. It's as simple as that. Or is it? My

motto as a patient advocate has always been "We're patients...NOT lab values!" But this is totally opposite to this "your lab values are normal, therefore you're fine" approach to diagnosis and treatment. No wonder some doctors think I'm crazy! 2. Most doctors don't know what to do to help patients besides giving levothyroxine, and besides, it's easier to just do the minimum. In a study of Graves' disease patients post-RAI treatment, the Thyroid Foundation of America found that the majority of patients studied did not feel well, despite being treated to "euthyroid" status (normal TSH range). My quality of life study conducted last year -- the first of its kind ever conducted among a substantial number of thyroid patients (the survey population was almost 1000 patients) -- found that more than 50% of patients were not satisfied with their treatment, and more

than 90% complained of still feeling fatigued, and almost 65% finding weight loss difficult or impossible. More than half of all patients had difficulty concentrating, a feeling like their mind was in a "fog," reduced or nonexistent sex drive, inappropriate weight gain, pains/aches/stiffness in joints, and forgetfulness. Interestingly, these are the same patients who many doctors declare so "easy to treat." Yes, it's easy to treat, especially when "treatment" consists of having your nurse draw blood, sending the blood out for a TSH test (the cost of which you mark up 300% or more), fill out a prescription pad, and send the patient away for a year. Patients who complain of continued fatigue, weight problems, depression, aches, pains, hair problems, skin problems, etc. -- this actually requires WORK! These people are NOT easy to treat. So, the answer? "It's not your thyroid." Even if you never had these problems before your thyroid condition was diagnosed, and now you

do -- "It's not your thyroid." Even if these are all symptoms of a thyroid condition, if your TSH is now "normal," then "It's not your thyroid." Many doctors do NOT believe that... Different patients feel better at different TSH levels Free T4 and Free T3 levels may reveal information that can help fine-tune treatment Some patients may do better on a different brand of levothyroxine Some patients may require the addition of T3 (via Cytomel, compounded T3, or using the T4/T3 drug Thyrolar) Some patients may feel their best on natural desiccated thyroid, such as Armour So, what ELSE can they do but keep you on your levothyroxine, tweak the dose up or down a bit, if at all, and declare your problems to be unrelated to your thyroid, and send you on your way? I dare to suggest that there are options, options you should ask the doctor to discuss, and challenge patients to insist on trying options if they don't feel

well. No wonder some doctors think I'm crazy! I'm making too much WORK for them!! 3. Most doctors have a cushy incentive to support Synthroid and its manufacturer. Synthroid is one of the top five selling drugs" in the U.S., and is a consistently profitable drug for its manufacturer. The drug has always been savvily marketed, and the company provides patient literature, and sponsors endocrinology meetings, med school lectures, and funds medical organizations and patient organizations. The American Thyroid Association, Thyroid Foundation of America, and American Academy of Clinical Endocrinologists, among others, all have a history of receiving substantial funding from Synthroid's manufacturer, currently Abbott Laboratories. If you want to get ahead in endocrinology, get grant money, advance in one

of the professional or patient thyroid groups, or get your golf outing partially paid for, you had better have a good "relationship" with Synthroid, its maker, and its representatives. Then there's me. I have actively covered the various scandals involving Synthroid -- including the suppression of research that was ultimately published in 1997, the resulting class action suit, the overcharging for the drug, the failure of Synthroid to meet the FDA's deadline for approval of the new drug application for levothyroxine, and so on. I've educated patients that there are other brands of levothyroxine, that are equal to, and at certain times better, than Synthroid. I've let patients know that some patients may not feel well on just levothyroxine, and instead require the addition of T3 (via Cytomel, compounded T3, or using the T4/T3 drug Thyrolar -- drugs NOT made by Synthroid's

manufacturer). And I've helped educate patients regarding the fact that some may feel their best on natural desiccated thyroid, such as Armour. I don't have it out for Synthroid -- I just want people to know the facts, and know their options. And I don't have any vested interest in cozying up to Synthroid, as most doctors and organizations do. By making sure that the public knows the full story about this powerful, profitable drug, I'm posing a slight danger to the almighty sacred cash cow for many doctors who treat thyroid patients. No wonder some doctors think I'm crazy! 4. Many doctors look down on self-educated patients. At one point in my treatment, my regular practitioner suggested I visit another doctor to get a second opinion. So my husband called his internist and asked, "who is the best person you know to deal with thyroid disease." "Me, of course," said the internist. (Doctors are so modest!) "But up front, I want you to know that my

wife is very informed about things, she reads a great deal about thyroid disease," my husband said. "Aha," he said. "She's a petit papier woman," said the doctor. My husband inquired as to what the doctor meant by this. The doctor explained that women who come in with papers, notes, etc. to show to the doctor are often referred in a derogatory way as "petit papier" (little papers, in French) women. He said most doctors did not like "petit papier women," as we're too "high maintenance."In the end, the doctor turned out to be fairly condescending and ignorant -- he declared after 10 minutes that my hair loss problem was "stress" and that it couldn't have anything to do with the Synthroid I'd just started. (I did some further research, and discovered transient hair loss was a Synthroid side-effect, and my regular doctor switched me to Thyrolar -- problem solved a few weeks later.) But the real message is that this doctor was not alone in being

intimidated and/or irritated by "petit papier" patients -- patients who read, research, ask questions, and want to discuss options. These patients need more time. These patients read the latest journals -- which means that the doctor also needs to read the latest literature -- or risk being less current and less informed than the patient. We make WORK for the doctors! And here I am, encouraging you to become a "petit papier patient." Linking you to research articles. Summarizing the latest from medical journals. My name may even be on your little papers! No wonder some doctors think I'm crazy! What Do I Think is Crazy? I think it's crazy that most doctors spend only a few hours studying the thyroid in med school, far less than on conditions that are less common. I think it's crazy that some doctors get most of their knowledge about thyroid disease from drug representatives. I think it's crazy that your

doctor is more likely to give you a prescription for an antidepressant rather than a thyroid test. I think it's crazy that there are still "fertility experts" who put women through expensive and difficult cycles of assisted reproduction and invitro fertilization and have never done a thyroid test on the supposedly infertile woman. I think it's crazy that doctors will ignore clinical signs and their own common sense,and instead rely solely on the results of a test, in order to diagnose patients. Why did they even bother going to medical school, then, if diagnosis means being able to read a number on a piece of paper? I think it's crazy that doctors will ignore obvious symptoms and refuse to test some people for thyroid conditions, based on their own ignorance, arrogance, or financial motivations. I think it's crazy that doctors will declare a patient treated, just as long as TSH levels are normal, despite continuing and unresolved symptoms

I think it's crazy that women don't get a thyroid test during every trimester of pregnancy. I think it's crazy that doctors give more weight and credibility to lab values than to the patient's own experience of how she/he feels I think it's crazy that research protocols studying the use of T3 keep using the wrong amounts and type of T3, and then declare T3 not to be a useful treatment. I think it's crazy that doctors don't welcome informed, empowered patients, and instead want to dictate to patients I think it's crazy that some doctors routinely dismiss the use of natural desiccated thyroid, yet will not study why some patients feel better and do better -- and even maintain "normal lab values" -- using this supposedly "outdated and unstable" medication I think it's crazy that doctors don't care whether or not their patients to truly LIVE WELL, they just care whether their patients have normal lab values I think it's crazy that

we have an epidemic of obesity, and no one is looking carefully and closely at the possibly linkage to thyroid disease. Why? Because they don't even recognize the role of the thyroid in metabolism and weight gain. I think it's crazy that endocrinologists have the time to make fun of thyroid patients, when by their own admission, nearly half of all thyroid patients in the U.S. are undiagnosed, and almost half of those who ARE diagnosed and treated do NOT have "normal TSH" levels, indicating poor treatment protocols. How about a little less time joking around, guys, and more time hitting the books? So, if I'm crazy, bring it on! And I welcome my fellow patients to go crazy right along with me! And, to those doctors who say I'm crazy, I say: THANK YOU! It's a compliment coming from you!

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