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–

TSH 38.56

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. 

This… 

 
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…

Rebekah on the left

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?)

  
So. The ONE and only “symptom” she has–elevated TSH, may or may not go away…even if she takes Synthroid. And, she could have any of these other listed side effects. 

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

  
Hm. 

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

  
Hm. 

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.

I didn’t pick up the prescription.
  
 

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27 thoughts on “Congenital Hypothyroidism 

  1. I can’t say I know a thing about this condition but I am familiar with misdiagnosis and improper treatment of a condition due to that misdiagnosis. I’m also familiar with side effects.

    Unfortunately, I’m also familiar with going against the advice of a “medical professional” when it comes to children.

    Years ago a friends child was misdiagnosed with a mental disorder and was forced onto meds the parents didn’t think he needed. They were treated with Child Protective Services when they stopped giving it to him. They eventually moved and were told the initial diagnoses was wrong but that their child had been so messed up from taking the wrong medication for the wrong disorder that it had CAUSED the disorder to form in him. Mentally and emotionally he was never the same.

    My daughter blessed me with a grandchild two years ago. My daughter was concerned about the things we’d heard about vaccines and wasn’t sure if she wanted her daughter to have them. While I personally was on the fence about it, my daughter tried to talk to her pediatrician. She was told, basically, that if a doctor says your child has something, or needs any type of medication, you don’t really have a choice. Going AMA (against medical advice) is considered medial neglect and they threatened to call CPS (Child Protective Services) if she didn’t comply.

    Now, they’re saying her iron is too high and they don’t know why and she’s been in and out of a lab for blood work. She isn’t showing any symptoms of iron poisoning. No one can find a source.

    I’m not saying NOT to follow the advice of your pediatrician but I am saying that if a doctor says your child has something and needs a certain type of treatment for it, they threaten and bully you and make you do it or threaten to take your child (here at least) if you don’t comply.

    I’ve been very upset lately about all of this. Parents no longer have any real say or control over what’s done to our children (and grandchildren). If we refuse, they threaten us, if they screw up, nothing happens to them. It’s not fair.

    At the very least, I would try to get second opinion if you believe the doctor is wrong. If you decide to go AMA, especially with a child, be prepared to be threatened with medical neglect. It’s wrong, but it does happen.

    Personally, I lost faith in modern medicine a long time ago but they’ll also tell you that you can’t treat your child naturally either.

    Good luck and I genuinely wish you, your family and your little one all the best.

    Liked by 1 person

    1. Wow, I’m sorry for your personal struggles with your grandchild and for your friend’s child.

      I don’t vaccinate any of my 5 daughters. Almost every state has medical, religious, and/or philosophical exemptions.

      I’m not advising anyone else to follow my logic on that. But I refuse to be bullied, threatened, belittled, guilt-tripped and cornered by anyone.

      Patients DO HAVE RIGHTS. I get a little tired of doctors who seem to be drug vending machines.

      Liked by 2 people

      1. You and me both. I would have preferred that my granddaughter not be vaccinated (I think the simple fact that they made my daughter feel she had no choice tipped the scales) and my daughter couldn’t afford to get a lawyer at the time. It’s that whole “Big Pharma” thing. They get paid to force people onto meds they don’t really need.

        Liked by 2 people

        1. I did a paper in college about Big Pharma, and the ethics behind it. It’s amazing how the U.S. is the only country permitted to actually advertise for a drug. We see it everywhere…tv, magazines, etc. You’re absolutely right – physicians are given perks for pushing specific drugs, and that’s not right. As a mom and patient, you absolutely have rights. Don’t let them bully you. My daughter was diagnosed with abdominal migraines about 2 years ago when she was 6, and they talked about putting her on an antidepressant! At 6! We refused, and now control them with her diet and stool softeners to relax her intestines. It’s crazy!

          Liked by 2 people

  2. I was told I had meningitis one time when I went to the E.R. Ended up being strep throat. Rebekah DOES NOT LOOK LIKE THAT AT ALL omg. I think get second and third opinions and talk to naturopathic docs too.

    Liked by 2 people

  3. Patients do have rights. I have 4 boys. What’s funny is that my last kiddos check up the pediatrician was telling me something about child proofing and making sure he couldn’t get into cleaning supplies. I put my hand up and told him with a straight face “this ain’t my first rodeo”.
    I don’t give my kiddos meds unless I feel it is absolutely necessary like life threatening. I use as much natural alternatives as I can.
    Mommas instincts or intuition are my best doctors!

    Liked by 2 people

  4. I can certainly empathize with your concern. However, if it was my child I would give the synthroid to baby. The risk of her having some really serious complications from the hypothyroidism by far outweigh the risks of taking the medication. I understand that you don’t want her to have to take a medication for the rest of her life! It’s heartbreaking.

    Also, while its already been addressed here, I want to also warn you that you are very much risking the physicians calling CPS/DCF and your baby getting taken away. It happens everyday. I’m not threatening you by any means. I just want you to be very careful.

    I’ll be praying for you and little one. Perhaps the pediatric endocrinologist has some ideas to help ease your mind?

    Liked by 1 person

  5. Emily, I have been reading your blog because I believe you to be a talented writer. As a physician I disagree with your stance on vaccinations and home birth but have kept my opinion to myself. This post however is extremely upsetting to me. The hubris of believing your google search trumps decades of scientific research is dangerous. Synthroid is one of the absolute safest medications out there. Hypothyroidism in an adult and hypothyroidism in a newborn are two completely different entities. Babies with hypothyroidism often do not gain weight well. There is a reason that there isn’t any “recent proof of brain damage in our country”. We do a newborn screen and treat the babies before it occurs. If you do not trust your pediatrician then get a second opinion. But just choosing to not treat your baby girl based on an internet search and unsubstantiated fears is risking her health and her future. Her brain is still developing. Delay in treatment can result in damage that lasts a lifetime. Please reconsider your stance on this issue.

    Liked by 3 people

    1. Thank you for taking the time to comment and give me your expert opinion.

      I am not ignoring her diagnosis or refusing to treat Rebekah. I just needed some more information and some space to think this over. And I do think additional testing and/or a second opinion is in order.

      I think it’s also dangerous not to ever ask questions.

      Rebekah was born small because of her abnormal cord attachment. She has been gaining.

      I understand from my reading that hypothyroidism is very different for a newborn than it is for an adult. Why is the same drug used then? And why is weight loss still an issue with infants on Synthroid?

      I also understand there’s a big difference in a scholarly article and a parent forum. I’ve looked at both. Google is the resource I have. If you know of some other place that a layman can research statistics and studies, please let me know.

      I respect your opinion and certainly don’t mean for my questions and decisions to be personally insulting or upsetting.

      Emily

      Like

      1. Have you looked at Google Scholar? A lot of people just don’t know that side of Google exists. It has lots of great medical journal articles, etc. If you already know this, ignore me. I’m in Research this semester so it’s always on the brain!

        Like

      2. Emily, upon re-reading my post I realize that it came off much harsher than I intended. I realize that you deeply love your baby girl and just want to do everything in your power to protect her. I think sometimes tone gets lost on social media. And I WAS a little annoyed after reading the “doctors are drug vending machines” comment above. Believe it or not I didn’t sacrifice 11 years of my life to training just to be a big pharma patsy. I really do care about my patient’s well being. I cry after giving bad news, I worry about them to the point I can’t sleep sometimes, I pray for them, I pray for my own wisdom and that I make the right recommendations. Just I am sorry if my post hurt you. I’m sure this is a shock and you are naturally full of questions. If repeat testing confirms the diagnosis of CH, I do recommend you treat her. I’ll be keeping you all in my prayers over the coming weeks.

        Liked by 2 people

        1. Thanks Kelli. That comment of MINE and probably several others in the blog do seem insensitive toward ALL doctors. I know that…like all people, every one of them has a different manner. I am sorry if anything upset of offended you.

          I’m not even mad at her pediatrician. I like him. It probably seemed like I am.

          I don’t doubt those are her numbers; I feel like people think I’m in denial, but I do have lots and lots of questions and hesitations.

          Thanks for all your time and all your messages yesterday.

          We aren’t ignoring this. Quite the opposite actually. I have to force myself to stop reading. And to go back to sleep and not read more.

          I keep trying to give it to God. And I appreciate your prayers soooooo much.

          Like

  6. Trust God and his word,
    “And again, I will put my trust in him. And again, Behold I and the children which God hath given me”. -Hebrews 2:13

    For the wisdom of this world is foolishness with God. For it is written, He taketh the wise in their own craftiness.
    And again, The Lord knoweth the thoughts of the wise, that they are vain.
    Therefore let no man glory in men. For all things are yours;
    Whether Paul, or Apollos, or Cephas, or the world, or life, or death, or things present, or things to come; all are yours;
    And ye are Christ’s; and Christ is God’s. -1 Corinthians 3:19-22

    Much Love, in Christ

    Liked by 2 people

  7. These are the facts
    1. Hypothyroidism in infants is the most treatable and common form of mental retardation.
    2. Time is of the essence, the longer a child with hypothyroidism goes without treatment the worse the developmental delays
    3. Children who are treated properly and quickly go on to have normal cognitive abilities.
    Now I state my opinion, get in the car and take your daughter to Arkansas Children’s Hospital. Do not let your own issues with the medical community or your emotions get in the way of making a sound decision for your child.

    Like

    1. You are spouting off something you found in 2 minutes of research, and there’s no evidence that NOT taking Synthroid is going to result in mental retardation. Yes, you can find that claim listed allllll over, but where is the evidence that proves it? Please, send me those links to those studies in recent times, if you found some.

      I have read hundreds of parents’ experiences with giving their children Synthroid. Some seem to mostly do fine. But most have tons and tons and tons of issues with dosage and side effects.

      This is the most crucial time period for brain development–exactly why I’m being so analytical about this CHOICE.

      I assume you’re someone I know because you say Arkansas Children’s, when I never said that.

      I do understand you are concerned, but I promise you, you’re not more concerned than I am.

      If you want to have a private conversation with me about your concerns, shoot me an email. I have been reading a lot about the controversies surrounding the tests used to diagnose, the side effects and struggles of children on this synthetic hormone, normal fluctuations in thyroid numbers, and the prevalence of more diagnoses in low birthweight and high birthweight babies.

      I do have an appointment to go back and get Rebekah’s levels tested again. I am not going to it blindly. And I am not going to jump based on unsubstantiated fear-mongering.

      Yes, I have a skeptical attitude. But no, I’m not using that bias to make this decision. As I’ve said, I’m open to reading studies about all the mental retardation that NOT taking Synthroid has caused.

      Like

  8. My heart goes out to you and I will pray more for your family. What you said about your decision trumping all others because you are Rebekah’s mother, is the truth even if the manifold pressures of society want us to believe otherwise. God is with you and is giving you these tears, but is also giving you the much-needed space you say you need. There is a reason God has not put it on your heart to go forth with the medicine right away. Maybe He will soon, but let God move you, so that when/if you do make the decision to treat this condition the decision is not fraught with anxiety and worry, but with God’s peace.

    Liked by 1 person

  9. I am praying for peace in your heart. I’m praying for a peaceful night’s rest because I think you probably need it. I’m asking for God to give you wisdom and discernment to know which paths to take regarding her treatment. I’m asking for your faith to be strengthened and your confidence as a daughter of God to be more fully realized. I’m praying for Rebecca- that her precious little body will be protected and healthy. I feel sure that Rebecca knows her mommy loves her very deeply. You are doing a wonderful job loving her and doing your best to figure out what to do to give her the best life. God sees that. Our love may be imperfect, but his is perfect. He will cover you with his feathers, and under his wings you will find refuge. Love vibes sent your way!

    Liked by 1 person

  10. Praying for your baby and you’re doing the right thing,after all mom’s instinct is the best thing to listen to.My experience is in no way similar to yours but after my brain surgery I was told because they had to cut threw my pituitary gland that I I would be on hormonal replacement for life and it didnt happen, the gland recovered on its own…..my baby had high levels as well but after retest everything back to normal…..it just seems so strange they would diagnose and treat over the phone,the right doctor would want to see the baby and evaluate the possible symptoms and retest…..you may just wanna search for the right doctor….

    Liked by 1 person

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