TestNearly 25 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 hurt when I turned my head. The dry skin was coarse and almost scaly, so severe that lotions or moisturizers were useless.

And I suffered from constant fatigue, the kind of stuck-in-molasses tiredness that comes when your blood sugar is super-high — even when it wasn’t. I felt exhausted from the moment I woke up in the morning, and I felt I couldn’t function throughout the day without a nap or concentrate on simple tasks.

Frankly, it was all 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 little 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 actually National Thyroid Awareness Month, so that’s why I’m revisiting my teen experiences today. It’s a good time for a refresher on this little gland with a big job to do. 


What Does the Thyroid Do Again?

The thyroid is a little butterfly-shaped gland that lives in the middle of your neck, and it’s part of the body’s endocrine system, where diabetes also dwells. This system controls your body’s metabolism. One of the thyroid’s primary responsibilities is to manage your metabolism by producing two thyroid hormones: T3 and T4. An overactive thyroid can cause weight loss, a quick heartbeat, and other signs that your body is “on the go” a little too much. The opposite, an underactive thyroid, leaves people feeling sluggish, and causes weight gain and slow heartbeat. Essentially, your body’s normal equilibrium slows down.

Turns out, thyroid issues are incredibly common. According to authorities, up to 59 million Americans have a thyroid problem and a majority don’t know it (kind of like the whole pre-diabetes problem). This ailment is so widespread, in fact, that Oprah was all about it a few years ago.

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.

Note that “thyroid disease” is actually an umbrella term for several different conditions that can affect this gland, including:

  • hypothyroidism
  • hyperthyroidism
  • autoimmune thyroid disease, which includes Graves’ Disease and Hashimoto’s Disease
  • goiter, which is an enlargement of the thyroid
  • thyroiditis
  • thyroid cancer

As you can imagine, none of these are good news for your body.

There are a whole host of different risk factors for thyroid disease, and you guessed it, diabetes is one of them! Experts estimate that about 30% of people with diabetes will be affected with some kind of thyroid disease, so it’s a big one for us.

Diabetes itself does not cause thyroid issues, but those with an autoimmune condition are automatically at an increased risk for other conditions. In the case of thyroid disease, PWDs (people with diabetes) are at risk for the two autoimmune-type of thyroid diseases: Graves’ Disease (hyperactive thyroid) or Hashimoto’s Disease (underactive thyroid).

Approximately 10% of PWDs with type 1 diabetes (the autoimmune kind) will have a thyroid condition. Although type 2 diabetes is not an autoimmune disorder, there’s also an increased incidence in thyroid diseases, but for reasons that researchers can’t explain. One theory is that thyroid disease and type 2 diabetes both affect the elderly, although we’ve learned that’s not 100% true in all cases.


How Can You Tell if Your Thyroid is “Off”?

The symptoms of hyperthyroid and hypothyroid are starkly different, but it can be difficult to tell there’s an issue at all because symptoms can develop very slowly. They also often match symptoms for a whole list of other conditions, so it can be tricky to figure out the culprit. This is why regular thyroid screenings are important.

Hyperthyroidism symptoms include: quick pulse and pounding heart, weight loss despite an increased appetite, shortness of breath when exercising, muscle weakness or tremors, and trouble concentrating.

As you can probably guess, hypothyroidism symptoms are the polar opposite: fatigue and sleepiness, persistent feeling of being cold, dry skin, brittle hair, weight gain despite no change in diet, low blood pressure or a slow pulse. Hypothyroidism can also affect fertility in women. Yikes!

Symptoms of thyroid conditions can sometimes be confused with symptoms of diabetes, or attributed to other circumstances. Take the late veteran diabetes journalist David Mendosa, who wrote about his diagnosis with hypothyroidism a number of years ago: “My feet were cold most of the time. Even when I wore thick woolen socks to be,  my feet were often so uncomfortable that they interfered with my sleep. Since I have diabetes, I assumed that my problem was that I had one of the most common complications of our condition, peripheral neuropathy. So I focused all the more on controlling my blood glucose levels in hopes of reversing my problem some day. Good strategy in general. But worse than useless when the assumption is faulty. My problem was hypothyroidism.”


Does the Thyroid Affect Diabetes Care?

One thing to note is that although hyperthyroidism and hypothyroidism do not directly affect blood sugar levels, not treating thyroid disease can cause lots of issues in managing your blood sugars due to the effects the symptoms have on how your body metabolizes glucose and insulin. For instance, with hyperthyroidism, insulin “clears” through your body faster, leaving you with higher blood sugars.

Hyperthyroidism can cause rapid heart rate and increases the risk of abnormal heart rhythm, so it increases the risk of heart problems, compounding the heart risks posed by diabetes.

Hypothyroidism can cause insulin to move through your body much slower, which could leave you with lower blood sugars, because the insulin “sticks around” longer. Hypothyroidism can also cause an increase in cholesterol and LDL levels, and an increase triglyceride levels, which adds to the danger of high cholesterol with diabetes.

So clearly it’s all bad news if you don’t catch the thyroid problem quickly!

In fact, the American Diabetes Association recommends screening for thyroid problems soon after a diagnosis of type 1 diabetes, with a standard TSH blood test (which is in fact controversial, details below). The ADA currently has no specific screening guidelines for people with type 2 diabetes.


What’s Up with Thyroid Diagnosis & Treatment?

If you’re experiencing any of the symptoms described, you’ll want to see your endocrinologist or primary care physician ASAP. You may be referred to a doctor who specializes in thyroid issues (as opposed to diabetes), but your endocrinologist will know exactly how to diagnosis you. The primary way to diagnose thyroid disease is something called a TSH (Thyrotropin Stimulating Hormone) test, which checks the amount of thyroid-stimulating hormone in your system. It’s a very easy and inexpensive blood test, so don’t delay if you think you have symptoms!

However, sometimes the test will come back false-normal, so testing for antibodies or having a full Thyroid Panel can also turn up things that the TSH test might leave out.

Autoimmune thyroid diseases, like Hashimoto’s Disease, are usually much easier to manage than diabetes. The hormone replacement treatment comes in pill form, so taking the medication is easy-peasey. But some patients have difficulty finding the right type of thyroid replacement pill. While there are two types of natural thyroid hormones, called T3 and T4, only T4 is found in the common thyroid replacements. For many people, this doesn’t work well. In theory, T4 medication would also convert to T3, but research suggests this doesn’t always happen. You’ll want to do your homework and make sure you get on the right treatment for you!

Patient Lindsay O’Rourke writes on the TuDiabetes group for Hypothyroidism: “I went on my generic prescription, levothroid, and even at a very low dose it was an extreme difference. I felt back to normal. My energy was back, and a slew of other symptoms went away.”

Hyperthyroidism can be treated with anti-thyroid medicines such as methimazole (Tapazole) and propylthiouracil (PTU), but the most common way of treating hyperthyroidsim is radioactive iodine therapy. Weirdly, it kills off the thyroid, causing permanent hypothyroidism. So you’re really just trading one problem for another.


Thyroid Patient Activism

Because of the common problems with misdiagnosis and mistreatments, there’s a whole movement of Thyroid Patient Advocacy, both in the U.S. and abroad.

This article from VeryWell Health offers tips for the newly diagnosed and outlines the big controversy: “There is a great divide in treatment and you will need to be aware of the seeming conspiracy to only run certain tests, to only prescribe certain meds and to minimize the devastating health issues we suffer!”

The essential issue is that the “gold standard” TSH Level Test is not entirely precise and lab errors and misinterpretation can lead to over or undertreatment. In recent years, patients have begun to push back on traditional advice and advocate for treatment that increases their quality of life.

Mary Shomon, founder of Thyroid-Info.com and author of New York Times best-seller “The Thyroid Diet Revolution: Manage Your Metabolism for Lasting Weight Loss” writes: “Even a ‘normal’ TSH may be abnormal for you… If your TSH levels don’t seem to reflect how you are feeling, speak up!”

Also note that a group called Thyroid Change has a long-running 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.
  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 traditionally been haphazard and inconsistent.

Perhaps as a counter to this kind of distrust, a few years ago, the American Association of Clinical Endocrinologists (AACE) set up a thyroid awareness website, with advice for patients. It emphasizes the importance of 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.

Also, back in 2012, the AACE determined that a blue paisley ribbon 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.”

Nice idea, but if you think about the struggle the Diabetes Community 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. Patient empowerment at its best!

Personally, I’ve been taking the generic form of Synthroid to treat my thyroid for years, despite the fact that it also became controversial at one point. When I go a few days without taking my daily pill, I definitely feel myself getting sleepy more often and becoming unfocused, so I’m glad to have it in my arsenal.

What about you all? If you’ve dealt with hyperthyroidism or hypothyroidism, we’d love to hear your story.