Tag Archives: dos and don’ts

Dear Thyroid Doctor

22 May

Dear Thyroid Doctor,

Did you know that 25% of women will develop a thyroid condition during their lifetime? Look out into your waiting room…you will see at least 3 of these patients every day. According to the American Thyroid Association, up to 60% of those with thyroid conditions are unaware of their condition. They are coming to YOU for help. So why don’t you care?

You dismiss us. Ignore us. Pass us off to your staff members who care even less about us. You accuse us of lying, exaggerating, not trying hard enough, being clinically depressed. You alone hold the key to our quality of life, but you refuse to hand it over. You spend hours and hours diagnosing and treating other chronic diseases with the latest and greatest options. But if one 1960s thyroid drug doesn’t work for us thyroid patients, we must be the crazy ones.

Well, I’ve got news for you. The jig is up. We are smarter than you think we are. Smarter than the people you pay $10/hour to act on your behalf and deliver our “normal” test results. You can’t talk circles around us anymore. We’re not going to take it. We are banding together to expose your lack of compassion and lack of knowledge about our disease. So, unless you want to see your patient list decreased by 25%, I urge you to take this advice.

Do a little bit of research. TSH is fine for an initial diagnosis, but why on EARTH would you use a pituitary hormone as the sole marker for successful thyroid hormone treatment? Would you diagnose and treat a diabetic on their postprandial blood sugar alone? At a minimum, please check the TSH, FT4, FT3, and ALL THREE sets of thyroid antibodies. What do you have to lose? If our insurance won’t cover the tests, ask us if we will pay out of pocket. Nine times out of ten, WE WILL. We will do ANYTHING to feel better.

Please acknowledge that we are more than our lab values. Normal ranges do not apply to everyone. Talk to us about our symptoms. You are comfortable dosing an antidepressant until a patient feels better with absolutely no accompanying bloodwork. I am begging you…release us from the TSH prison!

Do not accuse us of lying about how much we eat or how much we exercise. You tell us “everyone can lose weight,” and “you just need to work harder,” and to “join Weight Watchers.” I challenge you to join me in the gym sometime. I log everything I eat into an online food diary, and I eat 1200-1400 calories a day. How much do you eat? How do you explain that I was thin before my diagnosis? Magically I started eating cupcakes all day at the exact same time my thyroid was removed? YOU need to work harder at optimizing our thyroid treatment. I assure you, it is easier than putting us on antidepressants, cholesterol drugs and insulin.

Take the time to train your staff. Frankly, they are jerks. They roll their eyes at us, they won’t answer our questions, and they have no idea what they are talking about when they deliver your messages. More and more, we are paying cash for your services. You are running a business. Accept accountability for your employees and their behavior. Hold yourselves to a higher standard. Do things right the first time. In the end, it makes less work for all of us.

Finally, explore thyroid treatment options beyond Synthroid. Synthroid alone works for very few patients…it’s like replacing an entire car with just an engine. (Sure, the engine is important, but how are you supposed to steer?) When a sick patient doesn’t respond well to one of the many antibiotics available, what do you do? You try another one. When a depressed patient doesn’t do well on an SSRI, you try an SNRI. Why are thyroid patients any different? What do you have to lose by trying a T3-T4 combination of drugs, or dessicated thyroid? Make yourself familiar with the other available options – Cytomel, Armour Thyroid, Nature-Throid, Westhroid. Consider using a compounding pharmacy. If you are concerned about the risks, then talk to us about them. Let us make that choice. But honestly, have you looked at the side effect profile for the top 5 most prescribed drugs in your practice? If you are comfortable with the risks of Zoloft, then you should be THRILLED to prescribe any of the thyroid replacement drugs.

If you partner with us in our quest for optimal health, we will be fiercely loyal to you. We will recommend you to the world. We will make sacrifices in budget to make sure you get paid on time. We will wait as long as it takes to see you, and we will greet you with a smile. So what’s holding you back? The only thing you have to lose is 25% of your patients.

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Dos and Don’ts for the Thyroidless

10 Mar

Throughout my thyroid cancer experience, I have had unlimited amounts of support from my family and my closest friends. I have even been supported by new friends online who are having the same experiences. I am one of the lucky ones. I only have to deal with the annoying “helpfulness” of acquaintances and strangers. So, to help those of you who know someone who had thyroid cancer or is struggling to overcome uncontrolled hypothyroidism, here is a list of dos and don’ts.

DON’T EVER SAY…

“I know someone who had thyroid cancer and they’re totally fine!”

Would you say that to someone whose house burned down? “My friend’s house burned down and they are fine now!” No, you wouldn’t say that. So don’t say that to someone who also just had a devastating, life-altering experience.

“If you had to get cancer, that’s the best one to get, right?”

This one is my favorite, because even I said it when I was first diagnosed. What it really means is, “I’m not going to look sick to you and I probably won’t die from this, so people around me won’t have to feel guilty and uncomfortable.”

“At least you are alive.”

Again, is that something you would say to someone who told you their house burned down? Yes, I am happy I am alive. At least we are ALL alive. That doesn’t mean it is okay when crappy things happen to us.

“Have you tried (fill in the blank here) to lose weight?”

No, I haven’t tried that! Wow! What a lifesaver you are! Let me assure you – I have tried EVERYTHING.

“Were you a smoker?”

No. But would that make you feel better about my diagnosis? Like I brought it on myself or something?

“Not everything is because of your thyroid.”

You’re right! Not everything! Just my body temperature, my metabolism, my hormone regulation, my digestion, my ovulation, my energy level, my brain processes, my hair, my nails, my skin and MY MOOD.

DO SAY…

“What can I do to help?”

We are tired. ALL THE TIME.

“…”

That’s right – just don’t say anything. Listen to us vent, and then just don’t comment.

“It’s okay.”

Be there for us, and cut us a lot of slack. Sometimes we get overwhelmed and we overreact to things. Imagine waking up one day and not having any control over how “off” you feel. Imagine having the rug pulled out from under you and everything you have ever known as normal is GONE. Sometimes we just don’t have the energy to pretend that we are the same. We’re not.

I am doing well…I really am. And I know how blessed and lucky I am. I know how much worse it could be, and I am grateful for what I have. But that doesn’t mean I don’t miss life as I used to know it. That’s why I keep fighting. I am working so hard to put the missing pieces back together, and I have to believe that someday I will. Just don’t tell me that you know someone else who did…and now they’re totally fine.