I had gone to several doctors to investigate thyroid treatment for our infant daughter Moriah, who was born with Down syndrome (Ds). From my research, I knew thyroid issues to be quite common in those with Ds, but also frequently overlooked since many of the characteristics associated with Ds are the same as those seen in congenital hypothyroidism.
Also, because many doctors do not order all the appropriate labwork but rely too heavily on the TSH, many of these children remain untreated.
I was determined not to fail my girl on thyroid, so imagine my joy to finally find a doctor willing to prescribe NDT. I happily filled our prescription for 15 mg/day of Armour and scheduled a follow-up appointment for 6 weeks. What I did not know at the time is that one cannot remain on a low dose of Armour. (Patient Mistake #1)
The solution to being “a little” hypothyroid is not to take “a little” NDT. As I learned from a new friend and confirmed on the STTM website, that will cause you to become even more hypothyroid than you were to begin with due to the suppression of the feedback loop.
And that is exactly what happened to Moriah.
My friend clued me in, and I felt sick to my stomach, realizing this doctor must not be aware of that since she had not mentioned anything about ever raising Moriah’s dose. Long story short, even with labwork showing a big drop in the free T3, along with multiple new-onset hypothyroid symptoms, the doctor wanted to keep Moriah on just 15 mg/day. Why? Because, she stated “The TSH is by far the most important of the thyroid levels, and her TSH is really good!”
Sadly, the mistaken notion about how to dose NDT is all too common, even among caring, integrative doctors such as the one I had. I read many stories of doctors prescribing “low dose” NDT or adding “just a little” to be “on the safe side” and treat “borderline” hypothyroidism. But this is not how it works with NDT! This “treatment” only makes things worse! There is even pediatric dosing information on the NDT websites, but it is meaningless to a doctor who doses according to the TSH.
What a tragedy that these caring doctors are actually making their young patients even sicker!
Thankfully, we are now working with a new doctor who understands the necessity of evaluating symptoms and all the labwork and understands that, like adults, children cannot be left on “low dose” NDT. I wish there were more doctors like her.
The STTM website has been a Godsend, and I refer everyone to it, especially to check out “19 Mistakes Patients Make” so they do not make the same one I did.
• Parent of a child with hypothyroid? Join the FTPO Parents of Children group. No, it’s not to replace the relationship and guidance with your child’s doctor, but it can help educate and make you a more informed parent!
• See why going by the TSH is the WORST way to diagnose or treat hypothyroidism, here.
• For adults, here’s what we have learned about using Natural Desiccated Thyroid.
• Having what seem like bad reactions to NDT? Learn why. It’s not about NDT, but what it’s revealing!
• Have you Liked the STTM Facebook page?? Come on over for daily inspiration and information based on shared patient experiences!