I received a phone call early on Friday morning, March 18. This was the call with the results from the second test. Keith was at work. My oldest three daughters at school. I was home alone with Clara (2) and Rebekah (4.5 weeks).
I stood there in my pajamas and tried my best to remember all the high points, so that I could learn more about everything I was being told–Primary Congenital Hypothyroidism. Synthroid. Brain damage. Daily prescription for life. Referral to a pediatric endocrinologist at a Children’s Hospital 2.5 hours away.
Rebekah’s newborn screening, done when she was exactly 7 days old on February 22, had had an abnormal result for her thyroid function.
On March 10, the state nurse had called me because she said my pediatrician’s office told her they couldn’t reach me. The day she called and left a message saying the initial newborn screening had abnormal results was–Audrey’s 11th birthday, and also cheer tryouts day for Margaret and Hazel; I’m not surprised I missed the call(s).
I listened to the voicemail late that night and barely slept, called her back the next morning, March 11. The state nurse told me that there were often elevated numbers that ended up being “false positives” after further testing. So I tried not to be too worried.
We had a more conclusive test done on Rebekah’s thyroid on Wednesday, March 16. The doctor explained the basics of TSH and T4.
So during my phone call with the pediatrician’s nurse on March 18, I asked what her test results were and what prompted them to prescribe Synthroid. I wrote this down–
T4 free 1.21
I asked for the numbers from the newborn screening as well, but apparently they weren’t handy. I asked if I could have all of Rebekah’s lab results mailed to me. I was told I would have to come and sign a medical release in person; though I was positive that I had filled one out at the first visit. But okay.
I was being told–we believe your baby has this condition. I was told in this one phone call–her results indicate primary congenital hypothyroidism. I was also told–this is not something babies “outgrow” over time.
They did not assess her for symptoms. They did not ask me if she had any of these symptoms. They based their decision to prescribe a lifetime prescription on her test.
So I start looking up the symptoms…besides her thyroid numbers they’ve given me…
Hm…no. She doesn’t have ANY of these symptoms. Maybe I’m being biased somehow? I start comparing photos of babies with the condition to photos of my baby…
Some websites said most babies with primary congenital hypothyroidism would start showing signs around 3-4 weeks old. Some sites said babies may show no signs.
Okay well 1 in 4000 babies is diagnosed with this disorder. There are about 4 million babies born in the US yearly, so that’s about 1000 newborn CH diagnoses a year. I can’t be the only one who has ever asked questions. So I start searching out more information from scholarly articles and parent forums.
The words “BRAIN DAMAGE” were used on the phone with me. What mother wants to hear those words? And I was told, she is being prescribed Synthroid and being referred to a pediatric endocrinologist.
Yes I understand that thyroid function is necessary. But I also understand science, and I would like proof of brain damage that they are threatening she will develop. Where are the recent statistics from our country that prove brain damage is imminent?
I’m not talking about photos and studies from iodine-deficient countries. Or studies from the 1970s and earlier (when the subjects were diagnosed because they actually manifested CH symptoms and not diagnosed by this screening.)
I cried. Right there on the phone with the nurse. Are you serious? Are you sure? What else can cause this result? And it never changes? I don’t want her on a prescription medication this young, definitely not FOR LIFE. I need more information and proof that this is the only option.
Synthroid (Levothyroxine), I searched user reviews and the listed side effects…
Sure. Most of these side effects are listed as rare. But here I have this tiny, perfect little newborn daughter…who has no visible symptoms of this disorder, and who is happy and healthy. And I am supposed to want to give her this drug…for LIFE? Starting immediately.
She had two very fussy weeks, week 6 and 7. But besides those 2 weeks, she’s content, alert, pooping once a day, peeing several times, nursing happily, smiling social smiles at her family, reaching developmental milestones, gaining weight…not as rapidly as they want her to, but she’s gaining.
I thought people with hypothyroidism had trouble LOSING weight.
If she took Synthroid and had some of these bad side effects, most of them…she wouldn’t be able to tell me. And clearly listed side effects were–weight loss and growth and developmental delays in children.
I should give her this drug why? To improve her thyroid numbers only. Is that even a guarantee?
I searched–Does Synthroid, always improve TSH levels? No, it doesn’t. I found this article, which states–
“Persistent elevation of TSH levels in patients under treatment for hypothyroidism is a relatively common clinical problem in endocrinology practice.” (How do You Approach the Problem of TSH Elevation in a Patient on High-dose Thyroid Hormone Replacement?)
I just…I need some time to process.
It seemed like most user reviews of Synthroid were adults who talked a lot about how it helped them with weight loss. I’m not saying these adults don’t need or benefit from the drug. I am saying–the last thing Rebekah needs…is weight loss.
Rebekah was 5lbs 10oz at birth even though I had her at 39 weeks and 6 days. My other daughters were 7lbs 14oz, 8lbs 8oz, 7lbs 6oz, and 8lbs 4oz. So Rebekah was small for one of my babies, and I have been working so hard to help her GAIN weight.
Rebekah had velamentous cord insertion, which can cause delivery complications and a low birth weight. This condition causes low birthweight because the cord is attached abnormally, so the baby struggles to gain weight in the last few weeks of the pregnancy especially. Thankfully her delivery did not have complications; it was smooth and problem free, so now I’ve just been working on her weight gain.
I asked the doctor if her abnormal thyroid results might be related to her struggle to get nutrients in utero. That made sense to me. If her body had trouble getting nutrients because her cord was attached abnormally…maybe THAT was why her thyroid numbers were still off. She had been fighting to gain weight. He said…no.
Yet this scholarly article addresses that EXACT concern of mine–Thyroid Function in Small for Gestational Age Newborns: A Review. And the article addresses the fact that there is medical controversy around diagnosing and treating SGA (small for gestational age) babies using the same criteria as AGA (appropriate for gestational age) babies.
And this scholarly article addresses my thoughts/questions, too…TSH levels in newborn with low and very low birth weight vs rescreening for congenital hypothyroidism.
So the usual protocol with Synthroid and congenital hypothyroidism, as I understand, is that the baby MUST stay on it for 3 years. At age 3, they will do a trial off for one month, and retest the thyroid. If results are still in abnormal ranges, then the prescription is “needed” for life.
Wait. There’s a chance that the results might be NORMAL at age 3? What about–this condition is never outgrown? I think I’m confused. Did I miss something? Is the diagnosis sometimes…wrong?
They won’t say the diagnosis can turn out to be wrong later. They will call it transient congenital hypothyroidism. But that doesn’t mean it was WRONG? You’re telling me she has this. That it won’t change. Throwing around the words brain damage (with no proof and statistics offered for this threatening claim).
And I have to do my own google searches to even find out about the transient version. Wait. Doesn’t transient MEAN changing…
I don’t know much about the chemistry involved with synthetic hormones. I’ve heard and read that when guys take steroids, their balls shrink and don’t produce natural testosterone as well when they first cycle off steroids.
Maybe I’m wrong to assume that screwing with a newborn’s thyroid and hormones would cause similar damage to their thyroid? Cause it to shrink and not produce hormones correctly when/if they cycle off of their synthetic hormone that they have been prescribed…for life.
So parents are supposed to scramble over to the pharmacy to get a “magic pill” for an unchanging, lifelong diagnosis (…that might change) to prevent brain damage (…of which I’ve found no proof).
But I wasn’t told that transient congenital hypothyroidism exists; I wasn’t given any links to point me to statistics of brain damage in untreated CH from the US in recent times. I was told to START THAT MED.
Even if I am wrong to assume the fake hormone might damage her thyroid’s ability to function on its own. Even if I don’t know the exact chemistry. I do still have patient rights, don’t I? Am I allowed to ask questions about my own daughter’s health and her doctor’s unsubstantiated claims about brain damage?
I like facts. I don’t respond well to bullying, manipulation, guilt and fear tactics. I respond like–hold up. I’m going to need you to go over there, and let me think and breathe over here.
I wondered to myself–Could synthetic thyroid drugs, like Synthroid, actually make your thyroid condition worse?
I asked myself questions like–Have doctors ever steered us wrong before? Ever recommended or endorsed products that they later agreed/admitted were harmful?
Have I ever seen commercials that list tons of adverse side effects of drugs? Or had I seen commercials about class action lawsuits related to “you or one of your loved ones” who have possibly taken a certain drug?
Does the medical community ever change its collective mind about treatments? Do they ever recommend treatments that are later proven to be harmful? 10 Most Insane Medical Practices in History
I am allowed to ask questions and draw my own conclusions and make my own choices, right? Because I’ll be honest, I often don’t feel like people offer me that respect and space.
I look around at a world full of prescriptions, and you all go ahead. Not that you are waiting on my permission. But I respect your right to make that choice for yourself.
I have one main question for Rebekah’s doctor when I go for her followup appointment on May 2–Do you have proof of brain damage in children who didn’t take Synthroid?
Because that is a scary threat to throw at a mother of a newborn. And I found many parent forums discussing how their infant on Synthroid had lost weight and was not growing and not reaching developmental milestones.
But I didn’t find any information about parents who chose a different route. I didn’t find any recent proof of brain damage in children in our country. I’m not saying it isn’t there. But where is it?
All the photos I saw were children from third-world countries who had severe iodine deficiency. And I found vague, unsubstantiated claims that mental retardation and brain damage must be avoided by starting the med ASAP, but I found no proof of this actual happening.
I’m more than willing to look at that evidence. And yes it would have a profound effect on my decisions.
But I didn’t find any recent photos or articles talking about all the brain damage that children developed by not taking Synthroid soon enough. Where is it? Someone let me know.
Congenital hypothyroidism is diagnosed at a rate of at least 1000 per year for the past…I don’t know how many years. I can’t be the ONLY parent who didn’t immediately start Synthroid. So where is the proof that a delay in “treatment” caused brain damage?
Where. Is. It?
I am Rebekah’s voice. It’s okay to ask questions on her behalf. Don’t tell me you are concerned for my daughter, and think that your concern trumps mine as her mom.
I make choices that scare the crap out of many people. Okay. Just thank God you weren’t born one of my kids. And thank God that I’m not the one making choices for you and your kids and your prescriptions. I don’t know what else to say really.