Wednesday, October 5, 2016

Down Syndrome Awareness and Advocacy Month Day 5: Hyper-vigilant about Hypothyroidism

Down Syndrome Awareness and Advocacy Month Day 5:

Since Jackson's birth, I have tried to learn as much as I can about several health topics. One of these is thyroid function. People with DS often have thyroid issues, specifically hypothyroidism, and they are often underdiagnosed. In fact, as the graphic shows below, many of the characteristics long associated with Down syndrome mirror the common issues seen in untreated hypothyroidism.

From early on, Jackson had many symptoms of hypothyroidism. Here are some of the most common symptoms: mottled (lacy) and dry skin, cold extremities, constipation, sleepiness, low muscle tone, slow growth, and dry/brittle hair. Jackson had most of these! We thought we just were super lucky to have a baby who slept ALL the time, and no matter how much coconut oil I slathered on his little body, his skin was still so dry, rough, and almost purple. 😔

When we had his first thyroid tests run at his pediatrician's office, a mom told me very early on to always ask for a copy of all lab results. Thank goodness I took her advice! When testing for thyroid issues, many doctors only run the test for TSH and Free T4. Jackson's first TSH results came back at over 8. This was within range, and his doctor told me everything looked good. However, research shows that optimal function occurs with a TSH closer to 2. Jackson clearly had many of the commons symptoms, but his doctor refused to look at the research and would not treat.

Thankfully, other moms encouraged me to seek out another doctor who was more open treating thyroid. This was my first time to put on my big-girl pants and advocate for what I knew my son needed.

With a new doctor, we were able to get Jackson on synthroid, a common thyroid drug, and many of his hypothyroid symptoms improved and his TSH and free t4 went to optimal numbers. However, this was just the start of our thyroid journey!

Jackson had always had reflux, and when I say he had reflux, I mean he was a fountain. Pretty much whatever liquid went in came back up. We both smelled like sour breast milk for the first 9 months of his life! Reflux medicine did nothing to stop the fountain, but they did keep him from being in pain. What I didn't know is that constant spitting up was also symptom of hypothyroidism.

So even once he was on thyroid medication and his numbers were where they were supposed to be, he still constantly spit up. It became worse when he started eating solids. He would vomit up chunks of undigested food hours or even the next day after having eaten it. I knew something was not right.

We took Jackson to see a pediatric gastroenterologist in November of 2014 because we assumed something was wrong with his GI tract, and the doctor ordered several invasive tests that would require Jackson to be put under. We scheduled the tests, but something in my Mama gut told me to hold off on them.

In mid-December we had our first appointment (via Skype) with Dr. Erica Peirson scheduled. She is a board certified naturopathic physician in Portland, Oregon, who has become known in the DS community as one of the go-to doctors for thyroid treatment. We decided to wait until our appointment with her before moving forward with the GI tests. Thankfully, we made the right call!

Dr. Peirson had us have a full thyroid panel run for Jackson, and these results showed what we were missing by just testing TSH and Free T4. She informed us that reverse T3 should be 20 or below, and Jackson's was 58!! Also, when we told her about his spitting up liquids and vomiting undigested food, she said that delayed gastric emptying (what was causing the food to sit in his stomach for hours) was a classic hypothyroid symptom as well.

She suggested that we switch to Liothyronine, a thyroid drug that contains only the T3 hormone (Synthroid, what Jackson had been on, is a straight T4 drug). She explained at the time why this would lower his reverse T3, and I'd like to say I remember what she said- but I don't and won't try to explain it for fear I would get something incorrect. What I DO know is that the new drug did what it was supposed to do!

Within a couple of weeks, Jackson was no longer spitting up or vomiting food. His skin was already looking healthier, and he started to have more regular poops. At his next thyroid check, his reverse t3 was down where it was supposed to be! Thanks to Dr. Peirson, we avoided unnecessary anesthesia, and we never have had to return to the GI doctor.

Because of our experience, I have become passionate about sharing our story with other moms who have questions about thyroid. Here are some of the takeaways I've learned that I want to share with others. I am obviously not a medical professional. These are just observations and tips others have shared with me along the way:

• Always ask for a copy of any lab results. Some doctors accept a wide range of thyroid numbers that do not lead to optimal function.


• Some doctors accept higher numbers for thyroid within children with DS, saying that it's just a "part of DS." I've learned never to accept that statement; if they would treat a typical child for the same issue, they should consider treating my child. (This goes for all health issues, not just thyroid!)


• Many doctors will only run labs for TSH and Free T4. To get a full picture of thyroid function, you should ask for a full thyroid panel, which includes TSH, Free T4, Free T3, Reverse T3, and thyroid antibodies. 


• The "wait and see" approach many doctors apply to treating thyroid in children with DS can be detrimental to their development, both short and long term. Thyroid hormones regulate the production of new neurons, so untreated hypothyroidism can slow cognitive development, stunt growth and impair digestion, which can lead to additional developmental issues.

•For the above reasons, make finding a doctor who fully understands treating the thyroid in children with DS a priority.


Below is a list of resources I have found helpful when trying to learn more about thyroid:



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