Issue 4: Lack of regular (or any!) thyroid ultrasound testing

Ultrasound
Thyroiditis? Get an ultrasound! Image: “Ultrasound station” by Michael Coghlan, August 16, 2012, from https://flic.kr/p/cToEsJ

This series of 6 blog posts tells my story and outlines the six challenges I’ve faced.

This post focuses on the importance of ultrasound imaging in the diagnosis and management of hypothyroidism, especially autoimmune thyroid gland disease.

At almost every turning point in my experience with Hashimoto’s thyroiditis, I have had to do my own research and take initiative to ask my doctors for tests that should have been done years earlier.

On top of my hypothyroid symptoms (during treatment as well as pre-treatment) and the fact that chronic hypothyroidism increases risk for other health issues (such as heart problems), I have struggled with systemic barriers in the health care system:

  1. Delayed diagnosis of hypothyroidism
  2. Misdiagnosis of thyroid-related depression
  3. Ignorance of Hashimoto’s autoimmunity
  4. Lack of regular (or any!) thyroid ultrasound testing
  5. Lack of testing for Free T3 and Reverse T3 levels
  6. Lack of referral to an endocrinologist who understands

Let’s dive into issue four …

Issue 4: Lack of regular (or any!) thyroid ultrasound testing

The onset of my hypothyroid symptoms had been accompanied by goiter / inflammation of the thyroid.  I had experienced symptoms of neck inflammation, trouble breathing and swallowing, in the years before diagnosis.

Why was I not sent for an ultrasound upon diagnosis? You’d think that would be logical, even if I was not currently feeling any inflammation in my neck.

I was also somewhat overweight at the time of my initial diagnosis with hypothyroidism in 2003, and had puffy face/neck due to hypothyroidism itself, so my neck was not as slender as a fit and healthy person’s, and the fat and general inflammation might have cloaked the visual appearance of a goiter.

Not all goiters grow outward:  sometimes a thyroid can get inflamed internally in the neck, or the inflamed gland can grow downward into the throat and even the chest (under the sternum).

Given that the thyroid would be likely to undergo future episodes of inflammation and possibly nodules and or cancers, would it not be important to get a baseline of what the current state of my thyroid was, in terms of nodules, structure, and size?

If an ultrasound confirmed a diagnosis of Hashimoto’s thyroiditis, it would mean, according to recent research, a larger risk for cancer, and the cancer risk increases with age. The largest risk of cancer is within the first 3 years of diagnosis with Hashimoto’s.

  • Chen, Y.-K., Lin, C.-L., Cheng, F. T.-F., Sung, F.-C., & Kao, C.-H. (2013). Cancer risk in patients with Hashimoto’s thyroiditis: a nationwide cohort study. British Journal of Cancer, 109(9), 2496–2501. http://doi.org/10.1038/bjc.2013.597

Recently, when I felt like my thyroid was inflamed again, I asked for my first thyroid ultrasound test. My doctor felt my thyroid area and thought that it would be warranted, so I received a requisition.

When booking the appointment, I found out I had to wait a month for the test. It would eventually be scheduled 1 day AFTER my appointment with an endocrinologist.  Since both appointments were such a hassle to book and I’m grateful I had them at all, I did not want to reschedule the appointments.

When I saw the endocrinologist and told her I was having an ultrasound of my thyroid, she said that “an ultrasound is not indicated” in my case. In other words, it was not worth doing at all.  I guess she did not know about the correlation between Hashimoto’s and cancer. I was so surprised to hear this that I did not know what to say.

The next day, I learned that I have a severely atrophied thyroid gland. In fact, it was so small that the ultrasound technician asked me to wait while she checked with a colleague to ensure she had made the measurements correctly.

The measurements of my atrophic thyroid gland confirmed that I had autoimmune (Hashimoto’s) thyroiditis.

It was also important to know that the swelling feeling in my neck was not likely the thyroid, but could have been related to my vascular symptoms I’ve been having in various arterial branches of my aorta.

It’s great that we have We have no previous ultrasound records to compare with.

  • How much has changed in my thyroid’s structure since 2003, or since any point in the past?
  • If I had discovered I had nodules or cancers, could we even know how long they’ve been there? How fast have they been growing? Has thyroid nodule/cancer growth been correlated with my past thyroid test results or treatment doses, or other factors?

You can’t know if you don’t test.

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