Understanding Inadequate Thyroid Care

I got in an internet discussion a few weeks ago about the alternative medicine joke:

Q. What do you call alternative medicine that works?

A. Medicine.

There seems to be a misconception that alternative medicine is everything from healing crystals to all-juice diets, and “real” medicine is stuff that works.  One person said, “if a treatment were proven, my doctor would do it.  If he doesn’t, then it’s bullshit.”

Unfortunately, I have learned that thyroid treatment is a perfect example of why it is a lot more complicated than that, and how there is a massive gray area between “proven” and “BS”.

I was reminded of that discussion after The Coalition for Better Thyroid Care posted a link to this article today, which addresses the problems a lot of thyroid patients face in their medical treatment.  Most notably:

“The lag between the discovery of more effective forms of treatment and their incorporation into routine patient care averages 17 years.”  

17 years.  Seventeen years for something that is “proven” to make its way into routine patient care.  That’s an entire human being who has gone through puberty and acquired a drivers’ license.

It took me five tries to find my current thyroid doctor, and his clinic is considered an “alternative” clinic.  This is because he does things like:

Nothing he does is unsupported by science, and he’s happy to point to medical studies and literature for his patients to read.  One could argue that other doctors are aware of the debates about thyroid treatment and have simply made an informed decision that there isn’t enough compelling evidence to support them.  However, that hasn’t been my personal experience.

From of the four doctors I saw before my current doctor, questions were met with “I haven’t heard about that” or worse, “it doesn’t matter what new research says, because this is the gold standard for thyroid treatment”.  I have relatives whose doctors have never heard of dessicated thyroid medication, which has been used successfully in thyroid treatment since 1891.

All four doctors used the “whatever it says on the lab results page is correct” treatment method (if the lab says your TSH is too high, increase Synthroid dosage, if the lab says your TSH is too low, decrease Synthroid dosage, and if the lab says your TSH is in the normal range, you’re fine and your symptoms are in your imagination).

So what does this mean for patients?

It’s our responsibility to advocate for our own health.  Read and research (not to be confused with looking at WebMD and self-diagnosing every ache and pain as cancer), and learn how to have a conversation with your doctor as an active participant in your health care, and not be told what’s right for you.  Respect your doctor’s expertise, but still understand that you know if something isn’t right, and dismissing it is not an option.  And if you need to?  Find a new doctor.

Hopefully, the things listed above will be the gold standard for thyroid treatment sooner than 2030.

Comments

  1. Lisa says

    Would love the info for your doctor as I’m in Toronto myself. Recently got an abnormal TSH result (5.75) and my doctor said it’s perfectly fine and won’t do a thing! Several symptoms, too. So I need someone else! Help!

  2. says

    I think that the main problem with thyroid treatments is that doctors and patients are focused mainly on different types of thyroid medication to treat hypothyroidism. After trying different brands and thyroid drugs many patients are very surprised to discover that they still continue to have hypothyroid symptoms even if their labs are in the normal range.

    The reason for it is that the underlying cause of hypothyroidism was never addressed. Thyroid medication only replaces the missing thyroid hormones but does absolutely nothing to correct the cause of thyroid dysfunction. If you rely solely on your thyroid drugs to treat hypothyroidism, you are basically only masking your hypothyroid symptoms and may not feel 100% again.

    • says

      True. This is what happened to me on Synthroid. I should have added “treats symptoms and not blood test results” to the list since that’s really the #1 most important thing.

  3. says

    So happy to have found your blog! I can soooooo relate to this post. I’ve had hypothyroid disease (probably my whole life) diagnosed in the last 10 years. It’s a fight to stay healthy and not succumb to the popular medical community on this subject (and others, actually). I’ve been on dessicated thyroid for several years and, though I’ve had ups and downs, am doing well. It’s a battle worth fighting. So glad to hear you’ve found a great doc! They’re hard to come by where I live. I’ve found a doc who is very open to my research and is willing to work with me on it. Also working with a jam-up nutritionist who’s also helped tremendously.

    Thanks again for a great post!
    Jen

  4. says

    Great article Jen. Thank you for including a link to my article to find a new thyroid doctor at Hypothyroid Mom. I appreciate it. I was born and raised in Toronto Canada before moving to the US. It is great to connect with other hypothyroid Canadians!

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