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Highest TSH Since Birth--But Why?

A lot has changed since I last posted about Hadley and life with congenital hypothyroidism. Let me catch you up.

First, Hadley's provider (almost since birth), Nurse Practitioner S, left the Endocrinology department. She discussed the fact that she was leaving and asked for our input in choosing Hadley's new provider. Her care was transferred to Dr. S and we met her at Hadley's December 2022 regular check up. Let me start by saying...woah. We were not expecting what Dr. S brought to the table. As most of you know, we have been more than happy with the care Hadley has been under. Whenever there were issues or concerns, they were thoughtfully considered and addressed. We didn't doubt we were in good hands. However, Dr. S brought a new set of eyes and a new perspective to Hadley's medical care.

Dr. S spent 45 minutes in the office learning about Hadley and teaching us about congenital hypothyroidism. She went over some of the factors that may cause TSH and T4 levels to be abnormal. We knew about many of these like illness, growth spurts, and physical development. Then she talked about things like gluten allergy and absorption issues. She mentioned alternative medication formulas that are gluten and preservative free. She reviewed Hadley's lab results in great detail with us and honed in on the TSH spike between August and October 2022. While this spike had been addressed and treated by Hadley's former provider, the root cause was never identified. Dr. S asked questions about Hadley's health during that time period and if she had been on any medications like steroids (she had not). She mentioned that sometimes pharmacies change manufacturers and get medications that are slightly different than before.


Some of you may recall my post from a few months ago where I voiced my frustration and ultimately switched pharmacies. Well, that just so happened to occur in August. New pharmacy, new manufacturer. You do the math.

We left this appointment with so much new information and gratitude for Hadley's new doctor. She instructed us to find out the name of the manufacturer of Hadley's medicine and to ask each time a prescription is filled. She also wrote orders for labs to test for celiac disease and her regular TSH/Free T4 check. The celiac labs came back negative (yay, we love gluten) so nothing to change in her already sparse diet. Hadley's TSH had come down from 48 (October) to 17 (December). While this is still quite elevated, we were headed in the right direction.

Fast-forward to February and time to recheck her TSH and Free T4. We have noticed that Hadley has been sluggish lately and sleeping more than usual. She tells us verbally that she's tired often. She says her legs and arms feel tired and she lays around a lot. We considered that fact that Kindergarten, dance, and other activities keep us all busy. Is this just too much for a 6 year old, or is it her thyroid levels? Results came back via MyChart disturbingly high at 73 ulU/mL. This is the highest it's been in years. Since birth actually. So what now? I ask myself that all the time. Hadley's medical team gave us instructions to fill a new, higher dose of medication at the pharmacy and repeat labs before her next appointment in a month. Hadley is now taking a whole pill, 75mcg of levothyroxine. She swallows it like a champ and never complains. We'll follow up in month.

This is life with congenital hypothyroidism.

Thank you all for keeping up with us and for caring.

Love to you all,


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