Be Your Own Health Advocate

I credit this title to my friend Donna, who works in health care. I wanted to write a post cautioning against blind faith in doctors and diagnoses and this sounds much better than "Don't Trust Your Doctor." Chances are your doctor may be a kind wonderful person with all your best interests at heart. My mother-in-law, one of the nicest, cheeriest people I know, is a doctor. But you should still be your own advocate when it comes to your health.

What Do I mean by Health Advocate?

Take a proactive approach to all stages of health and illness: prevention, diagnoses, treatment, and again prevention. Take a daily vitamin or two. Eat more fruits and veggies. Exercise. Research your symptoms. Go ahead, WebMD that sucker. Just be sure to write down all your symptoms first, so you have in mind the difference between what you are actually experiencing and 101 more seductive sounding diseases you might have, according to your inner hypochondriac. If you aren't incapacitated by your illness, maybe try a few home remedies first. And if you do make an appointment with your doctor, bullet list symptoms and questions you want to discuss. Mention your relevant family history two or three times. If your Aunt Myrtle recently tested positive for such-and-such, go ahead, ASK if you should also have the test. It never hurts to ask.

Your Doctor is Not God

If you are like me, you have probably been giving your doctor both far too much credit and far too much responsibility.It is only over this past year that I have reexamined my perception of doctors. Typically I only go to the doctor when I believe something is wrong with me. I go the appointment believing that if I list my symptoms and the doctor pokes and prods me, they will unequivocally know what is wrong with me and how to fix it. WRONG. Doctors are human and thereby make mistakes. They are working off two things: their own medical expertise and the context you give them. Even the best of doctors may never have encountered, experienced or researched your condition and the fewer details you give them, the more it is like guesswork.

Why My Doctor Missed My Cancer

One of the greatest conundrums I have met with since my cancer diagnosis is the question of why I was not diagnosed sooner. Obviously, my doctor and I were both at a disadvantage, given that neither of us knew about my family history of thyroid cancer. I have two aunts with thyca, which I found out only after my throat sonogram. However, I did go to my PCP 6 months before my diagnosis, specifically for the purpose of getting tested for thyroid conditions. My mom insisted that a faulty thyroid could be the source of the many health difficulties I was facing. So I had my blood tested for TSH levels (Thyroid Stimulating Hormone) and everything came back normal. 

This is the part that confused the heck out of me. How could my test come back NORMAL? I had severe Hashimoto's Disease, a 3cm malignant tumor, and 9 malignant lymph nodes. I must have been (and certainly was displaying the symptoms of being) severly hypothyroidic at the time I was tested.

Well, the other day, I found the answer. Or at least as close as I am ever going to get. I was browsing the internet for articles on Hashimoto's and found this article on TSH testing. (The article is actually a series of 8 slides, and well worth reading in full. This links to slide #6.) Well, guess what! According to Mary Shomon, founder of Thyroid-Info.com, "Currently, most laboratories in the United States still use the old 0.5 to 5.0 range as their normal reference range for the TSH test."

So what, you ask? "New" guidelines, recommended by the American Association if Clinical Endocrinologists, state that anyone with a TSH level between .3 and 3.0 should be flagged for further testing and treatment. These standards were changed in 2002!!!! But today many doctors either do not know about these guidelines or purposely ignore them. I can't fathom why they would simply ignore them; too many sick people = inconvenient? The article goes on to say that the "AACE believes the new range will result in proper diagnosis for millions of Americans who suffer from a mild thyroid disorder, but have gone untreated until now."

As long as these standards are ignored, people experiencing hypo and hyperthyroidism are not being diagnosed because they fall into the old normal range. Like me. My TSH level was a little over 4.0 (I'll have to check my records to find out the exact #.)When my doctor came back and said everything was fine, I just accepted it. I took her word for it. I can't help but wonder how long I would have gone undiagnosed if that dog had not bitten me. And how much further the disease would have metastasized.

 The moral of this story is to question everything. If your doctor says you are fine, check and double check. Don't be shamed into suffering a treatable illness! If you have a family history of thyroid disease or multiple symptoms, follow up your test with these questions:

If your doctor is simply unaware of the changes in TSH standards, you can help all their patients, by getting them the right information! This article tells you what to give your uninformed doctor.

If your doctor simply disagrees with today's TSH standards, find another one!

You can even circumvent a doctor altogether and order your own thyroid blood tests from MyMedLab:

Doctors Forget What it Means to Be a Patient

Medical Degrees do not require communications courses. They Should. I absolutely believe that our health care system and patient satisfaction would improve if doctors had to take at least one course on communicating with patients. Hospitals and medical programs do, ironically enough, offer classes for patients on How to Talk to Doctors (but not often the other way around.) Too often patients leave an appointment confused or fearful when it could have been prevented. The thing is, you HAVE to be your own advocate, because your doctor EXPECTS you to be. Your doctor expects you to tell them everything. In fact, they probably anticipate hypochondriacs, while getting reticent introverts. If you go to the doctor with a suspicion, fear, question or purpose, but never voice it, how will they know?

Something else you may want to keep in mind is that doctors are motivated by money. We all are. Drug reps visit the same hospitals and doctor's offices weekly. They hold lunches in their break room. They leave behind little "freebie" presents of food, notepads, pens, mugs, samples, etc. If someone gives me something, I feel indebted to them. I'm not going to trade my ethics for a sandwich, and your doctor probably won't either, but when prescribing something for you, how likely are they to ignore the brand names that have treated them so well and now decorate their office or even write out your prescription? And of the dozens of times doctors offered me "free samples" of some new drug, I never once thought that maybe it wasn't such a good idea. That is might have more to do with convenience and ease than my actual health. Free is very seductive. 

Where it starts to cross the ethical line is when doctors start prescribing pills and treatments you DO NOT NEED. Like I said before, I have found countless forums on Hashimoto's Disease, where patients have been prescribed unnecessary thyroidectomies. A few of them questioned their doctor's suggestion, looking for second or third opinions, or seeking alternative treatments, but most do not even believe they have an option. They do not distinguish between doctor's words and doctor's orders.

Are You a Fully Informed Patient?

This is the question you should ask yourself every time you visit a doctor. There are a million and one things that I learned about my body, my thyroid, and thyroid care over the last year that I simply did not know before. The best way to be your own advocate is to be self-educated. I'll give you an example.

In an earlier blog, I talked about unnecessary x-rays, known to be a cause of thyroid cancer when delivered in excess. Today's dental standards recommend that patients receive only one diagnostic dental x-ray per year. Unfortunately, many dentists are indiscriminately prescribing these x-rays every 6 months!

The American Dental Association cautions that patient history, health, age, family history, risk and symptoms should all be considered when using x-rays as a diagnostic: "However, the dentist must weigh the benefits of taking dental radiographs against the risk of exposing a patient to X-rays, the effects of which accumulate from multiple sources over time."

Yet, BOTH my husband and his father were refused dental treatment because they refused to get a dental x-ray at their 6 month checkup. Obviously, something sketchy is going on here. And I suspect it is more fiscally motivated than anything. If you REQUIRE that all your patients undergo expensive albeit needless procedures, you make more money. Period. The end. 

Oh! And here is some fine print on the ADA website, you may not be aware of: you should be wearing a thyroid collar during these dental x-rays!!!! Their MouthHealthy website states: ". . .  a leaded thyroid collar can protect the thyroid from radiation, and should also be used whenever possible. The use of a leaded thyroid collar is recommended for women of childbearing age, pregnant women and children."

Did you know that? I didn't! I have been of childbearing age for sixteen years now and I have never once requested a thyroid collar!!!! Don't be afraid to do your own research. Yes, the internet is a tricky place to navigate. There is a lot of unsubstantiated crap out there, and you have to go through a lot of sources and know what to look for in order to find reliable information. Your doctor might even look at your list of questions and printed WebMD pages and laugh. But think of how much better it is to be an active advocate than a silent sufferer!

1 comment:

  1. Having a health advocate is essential! If it takes too much out of you to be your own health advocate, consider appointing someone else to be your health advocate. A trusted loved one or friend, or even a professional advocacy company, can all be counted on to help. Read more about how an advocate can help you here: http://www.examiner.com/article/ask-a-health-advocate-how-can-advocacy-benefit-you