Thyroid-isms: Beware of Tricky Symptoms and Questionable Care

Nearly 20 years ago, it was the sleepiness and crackly, dry skin that first alerted me something was wrong. Not diabetes, as I’d already been living with type 1 for close to a decade at that time.

No, these symptoms were different.

I had a visibly enlarged gland on the side of my neck, so swollen that it would sometimes hurt when I tried to turn my head. The dry skin was coarse and almost scaly, so severe that lotions or moisturizers were useless.

PAISLEY RIBBON = new universal symbol of thyroid disease awareness (and you thought we had it tough with the Blue Circle!)

And I suffered from constant fatigue, the kind of stuck-in-molasses tiredness that comes when your blood sugar is super-high. But I felt exhausted from the moment I woke up in the morning — as if a dozen hours of sleep weren’t enough — and there was a sense of not being able to function during the day without a nap.  There was also the inability to focus or concentrate on simple tasks.

Frankly, it was a bit scary, because I couldn’t put my finger on how all these seemingly unrelated symptoms might tie together.

As it turned out, all were signs that the butterfly-shaped thyroid gland in my neck was not working properly — which causes an array of symptoms that are easily overlooked or worse, mistaken for other ailments. Thankfully, what came next for me was a correct diagnosis of hypothroidism, which in layman’s terms meant that my gland wasn’t producing enough of the thyroid hormone that controls metabolism.

This all happened when I was about 15. Not a great time for additional hormone issues — although I guess there’s never a great time for any type of diagnosis, right?

January is Thyroid Awareness Month, so that’s why I’m revisiting my teen experiences today.

According to authorities, roughly 59 million Americans have a thyroid problem and a majority don’t know it (kind of like that whole pre-diabetes problem). Those of us in the Diabetes Community are more prone to thyroid issues (probably related to our metabolic systems already being whacked out). Women are more prone than men, but that doesn’t exclude guys like me.

There were times I remember in those teen years being ashamed of my white-looking, parched hands, and trying to keep them hidden in my pockets so people wouldn’t stare. My skin pigment got paler and paler, and I was always cold. In those days, I was on the high school swim team, so I didn’t notice any weight gain — I was a skinny guy and that didn’t change much with all the pool action I was getting twice a day.

So that was my life leading up to the diagnosis. Then when the doc told my family what was up, he put me on a medication called Synthroid, which later became controversial, but is still the first-line defense treatment, and which I have been taking (nowadays as a generic) since then, with the dosage going up as needed through the years. When I go a few days without taking my daily pill, I definitely feel myself getting sleepy more often and becoming unfocused.

It’s weird, though, trying to pinpoint the reason for those feelings — is it my diabetes, hypothyroidism, depression, or just run-of-the-mill lack of sleep and stress? So many disorders overlap and it could be anyone individually, or a combination. I trust I’m not the only one in the DOC who’s such a mess (at least on paper)…

Actually, as we mentioned in a post earlier this month, it’s good to see the American Diabetes Association actually taking more notice of thyroid and other related conditions that so often affect PWDs. That will hopefully be a significant boost to getting this condition noticed.

Awareness-raising for thyroid conditions is also being done at a grassroots level by patient communities online, just like those focused on diabetes, although they began much more recently. The feeling is that thyroid conditions were much-neglected and mistreated among the Medical Establishment for far too long.

A group called the Coalition for Better Thyroid Care, established in 2010, states:

“Our primary focus is hypothyroidism, because no matter what the initial diagnosis, almost all thyroid diseases result in lifelong hypothyroidism. It’s the most common thyroid condition and yet unlike thyroid cancer and Graves disease, hypothyroid patients have never had a dedicated advocacy group — until now.

“We are working toward the goal of a world where all legitimate thyroid tests and treatment options are better understood, better known, widely accepted, affordable, and available…a world where there is greater understanding among doctors, insurers, pharmacies, medical societies, and patients of the full range of tests and treatments. In addition, we want to see that clinical signs and symptoms, virtually ignored now by some within the medical community, once again receive the careful consideration they warrant.”

Another new patient-led site launched this past summer is Thyroid Change, which features blogs, patient discussion forums, and news updates about anything related to thyroid dysfunction. They are taking Thyroid Awareness to the next level by working with the online petition platform Change.org.

They’ve just launched a new awareness petition drive called “Patients with Thyroid Dysfunction Demand Better Care,” which calls on the International Society of Endocrinology to adopt two core changes going forward:

1) Doctors must demonstrate proficiency in diagnosis of and treatments in thyroid disorders BEFORE receiving his/her board certification in Endocrinology.

and

2) Board-certified endocrinologists who treat thyroid disorder must keep up-to-date on current thyroid disorder treatments.

These demands seem like no-brainers, but apparently thyroid care has been haphazard and inconsistent to date. This does not make us feel good about Endos on the whole…

Perhaps as a counter to this kind of distrust, just yesterday, the American Association of Clinical Endocrinologists (AACE) sent out an announcement touting its own new thyroid awareness website, featuring their new “SAME/SAME/SAME” campaign, to reinforce the importance of thyroid patients taking the same dosage of the same medication at the same time every day:

“Even the slightest variance in the manufacturer of the prescription (whether generic or brand name), the time of days meds are taken or the medication dosage can interfere with the delicate balance thyroid medications are designed to achieve, sending the body into a tailspin and resulting in a host of side effects that can range from mildly uncomfortable to severe.”

Hmm, we did not actually know that. But whether this AACE-run website will actually “assist with medication compliance” as the organization claims remains to be seen.

It seems that in 2012, AACE also determined that the blue paisley ribbon icon (pictured at the top of this post) would be the new universal symbol of thyroid disease awareness and advocacy. They say paisley was chosen “because of its resemblance to a cross-section of thyroid follicles, the tiny spheres that the thyroid gland is made of.”

If you think about the struggle the DOC has had gaining recognition for the Blue Circle as a symbol of diabetes, you can pretty much figure the Paisley Ribbon’s gonna be an uphill battle.

What we find encouraging, however, is lots of online activity and awareness-building among this burgeoning patient community itself. Patient empowerment at its best!

And we hereby encourage all effected PWDs (people with diabetes) to help where they can with Thyroid Awareness, so that others will be more prepared to recognize those scaly white hands and always-exhausted feelings when they come at us, and to know where to look for the best possible care.