“Theirs not to make reply,

Theirs not to reason why,

Theirs but to do and die:

Into the valley of Death

    Rode the six hundred.”

(“The Charge of the Light Brigade,” Tennyson)

 

Liberty Leading the People, Delacroix
 

I’ve had some people ask for an update–Rebekah has an appointment on May 16 (earliest available) with a new pediatrician for a second opinion. 

She was diagnosed with congenital hypothyroidism over the phone at 4 weeks old. She was prescribed Synthroid, which we chose not to pick up or give her. She weighed 5lbs 10oz at birth, and she’s currently 7lbs 7oz at 10weeks, 5 days old.

We called to reschedule her appointment with the first pediatrician for a few days later because of a conflict. The nurse flipped out. She talks over us, doesn’t listen whatsoever, and this last time threatened to report us for neglect. 

Hang on, let me make some room in my pending lawsuits file. 

This is a decision that is going to affect Rebekah’s quality of life for the REST of her life. No, I’m not going to be forced to make it under coercion and fear tactics and threats. 

I’ll post about how it goes with the new pediatrician some time after May 16. 

ANALYTICAL BY NATURE

I don’t write or share life experiences to make sure everyone stays comfortable or to hope that everyone agrees with me. I’m also not stirring up controversy for the sake of controversy, hoping that people will join forces against me to get me “back in line” with popular opinion. I’m also not hoping to win anyone over to “my side.” Life is not red rover. 

It doesn’t rattle me when I feel attacked; I’ll listen to them, but I will always look for intentions and motivations. Are they trying to justify their own choices? Trying to convince me for the sake of convincing? Or…is this genuine concern?

I like to hear it all. And if someone gets pushy, I can go toe to toe. That’s never been a problem for me. But there are shy people, who have concerns similar to mine on many issues,  and they would never be comfortable getting attacked, so they send me quiet support. 

Why then? Why do I share?

I have a very genuine, very real desire for answers that convince me to take action or not take action. I have huge choices to make for myself and for my children, the people who matter most to me. 

Also, I am analytical by nature. I am unconventional in many of my personal choices, especially health choices. I own the right to be, and I don’t mind reminding anyone who steps into my space or acts like I don’t own that right. 

“You don’t have to love me; you don’t even have to like me, but you will respect me…” (“Bossy,” Kelis)

When something happens in my life that opposes the beat of my own heart, I don’t easily accept it. And I ask–why? 

And I want proof. I don’t want regurgitated, unsubstantiated fear-mongering. I want actual proof. 

And I look up what information I can find on both sides of the issue. And I look for controversy among the experts. And I ask-why? 

And I look for the source of the studies. And I look for the changes and trends over the years in treatments and diagnoses. And I ask–why?

And I’ve never minded being a gadfly. And I don’t mind now. And again I ask–why? 

PERSONAL BACKGROUND

Rebekah (born February 15. 2016) was diagnosed over the phone with Congenital Hypothyroidism when she was 4 weeks old. More about that, here.

Her TSH was 38.56 at 4 weeks of age; T4 free was 1.21. I read that TSH often spikes after birth, especially in newborns with lower weight. The nurse didn’t know the appropriate ranges for Rebekah’s age, and yet…she told me that Rebekah was very out of normal range for her age. Oh? But we don’t know normal range. The doctor prescribed Synthroid and they said she would be referred to a pediatric endocrinologist. 

I had a hard time finding the appropriate ranges myself. I found this chart that lists ranges, but to be honest, I don’t know what the “n column” refers to…I assumed the number of subjects tested in each age group…to determine these percentiles. (A few people confirmed to me that the “n column” is the number of test subjects.) 

So I don’t know if this chart is just a graphic from one particular study of levels or what. I hope so. I hope this isn’t the standard or accepted chart for “normal ranges,” because it’s not based on many test subjects, especially ones under 1 year. 

But if someone knows (or finds) the “normal range of TSH” for different ages of infants and children, send that my way. PLEASE.

  

The nurse said Rebekah needed to start treatment immediately because brain damage and mental retardation are linked to congenital hypothyroidism. Again, I was given no proof or evidence of this scary threat. 

When I looked up congenital hypothyroidism, the only evidence of brain damage I could find were severe cases from other countries or from our country from decades ago–when the diagnosis was made based on seeing actual symptoms in the baby’s appearance and behaviors and not on TSH and T4 numbers only. What were the levels of TSH and T4 for these severe children?

I couldn’t find that answer either. But I did find several parent forums where they discussed their children’s levels at different ages, and I saw them post TSH numbers in the hundreds and even over a thousand. And they posted crazy numbers before AND AFTER their kids were on Synthroid. Because the crazy numbers don’t stop with Synthroid. 

It’s very different to compare numbers of babies and children with adult numbers. And as I found in my reading, lower birth weight babies (and large babies) have very different hormonal profiles than average weight babies. 

CHOICE

I had to make the choice about whether or not to start Rebekah on a fake hormone for life. So I looked up information and questions that I had. 

I wondered if introducing a fake hormone would cause an internal fight between her thyroid hormones (because she did have them) and the artificial one. I had heard of people who had to have their thyroids killed. If her natural gland has a chance of normalizing on its own…I want to give it that chance. 

It’s very different to make the choice to start a newborn on Synthroid or for an adult to make that choice for himself. Brain damage was threatened. Yes, that sounds incredibly scary. Precisely why I’m so hesitant to start her on this DURING her brain development years. 

An adult who chooses to take Synthroid has a brain that has finished developing; their bodies have finished growing, they’ve gone through puberty, and in some cases maybe even through menopause before they start the fake hormone. They can also TELL people if they notice improvements or bad side effects. 

I wanted to read the stories of the people who had BABIES on Synthroid for life. Was it a miraculous experience for them? They are the ones who live it.

So I found plenty of stories. And I read them. And I dug deeper. 

WHAT CAUSES THYROID DYSGENESIS?

I was told that her thyroid levels were most likely out of range because her thyroid was misshapen or missing. 

What causes that to happen?

I was also told that since the start of screening newborns, the diagnosis of CH has more than doubled. 

Why would the numbers double? 

After reading, I got the sense that the experts don’t know. And also…that they don’t think the cause matters. 

As a parent of a child they are wanting to diagnose with this, the cause matters to me.

Why isn’t her thyroid functioning properly? What are the reasons her levels might be off? Did IUGR (intrauterine growth restriction)or low birthweight play a role in throwing her numbers off? Are there ways to improve thyroid function? (Instead of simply trying to take over its function by administering fake hormones and then altering that dosage for the rest of her life as she grows and changes.)

I’ve included some quotes from Congenital hypothyroidism, by Maynika V Rastogi and Stephen H LaFranchi–

“In iodine sufficient countries, 85% of congenital hypothyroidism is due to thyroid dysgenesis.” 
 

“…an exact cause for the vast majority of cases of thyroid dysgenesis remains unknown. This has not been a significant issue, however, as management of CH is based on restoring thyroid function to normal, not necessarily knowing the exact underlying cause.”

“It should be borne in mind that an underlying etiology may not be determined for many cases of CH.”

  

“Congenital hypothyroidism is classified into permanent and transient CH. Permanent CH refers to a persistent deficiency of thyroid hormone that requires life-long treatment. Transient CH refers to a temporary deficiency of thyroid hormone, discovered at birth, but then recovering to normal thyroid hormone production. Recovery to euthyroidism typically occurs in the first few months or years of life. ”

“Prior to the onset of newborn screening programs, the incidence of congenital hypothyroidism, as diagnosed after clinical manifestations, was in the range of 1:7,000 to 1:10,000 [1]. With the advent of screening of newborn populations, the incidence was initially reported to be in the range of 1:3,000 to 1:4,000 [2].”

“A recent report showed that the incidence in the United States increased from 1:4,094 in 1987 to 1:2,372 in 2002 [5]. The reason(s) for the increased incidence is not clear, but one possible explanation may be a change in testing strategy. ”

It is not clear whether the congenital hypothyroidism in preterm infants is transient or permanent.”

So many unknowns and so much vague information. The experts freely admit so much of the information surrounding the disorder is still unclear, and also…that it doesn’t matter. And that is supposed to ignite my trust?

CONTROVERSY

Controversy existed in my own heart and head the more I read on this topic. Did controversy exist among the doctors and experts?

I looked–

Remaining controversy centers on infants whose abnormality in neonatal thyroid function is transient or mild and on optimal care of very low birth weight or preterm infants.” Update of Newborn Screening and Therapy for Congenital Hypothyroidism

Were there studies/articles that discussed the Correlation of congenital hypothyroidism with birth weight and gestational age in newborn infants? Yes, there were. 

Congenital hypothyroidism rates–

low birth weight infants 1/575

normal weight infants 1/1,505

macrosomia 1/473

“The prevalence of low birth weight infants and macrosomia was significantly higher than that of normal weight group (P<0.01).”

“CONCLUSION: The prevalence of CH is associated with the birth weight and gestational age…

Do babies with different weights have different hormone profiles? Growth hormone levels in relation to birth weight and gestational age.

“The study was done to evaluate the growth hormone profile in relation to birth weight and gestational age. There was statistically significant difference in the cord blood growth hormone levels between babies weighing > 2500 gms (28.1 +/- 12.83 ng/dl) and low birth weight babies (76.8 +/- 55.7 ng/dl).”

Growth hormone levels were higher in preterm babies and low birth weight babies as compared to term babies weighing > 2500 gms…”

Did any experts think Congenital Hypothyroidism was overtreated? And did they find that the over-treatment  during early life was worse than under-treatment?

Overtreatment of Congenital Hypothyroidism in the First Two Years of Life May Result in a Worse Cognitive Outcome Later in Childhood than Undertreatment, Rosalind S. Brown, Clinical Thyroidology

Overtreatment in the first 2 years of life as reflected by the free T4 concentration is more detrimental to later cognitive outcome than undertreatment. The rapidity of normalization of serum thyroid hormone and TSH levels, though associated with a short-term benefit, is not associated with a sustained improvement in neuropsychological performance later in childhood.”

“This provocative study should cause us to pause and reconsider what constitutes optimal therapy for babies with congenital hypothyroidism…”

“I await with interest data concerning the long-term neuropsychological outcome of babies treated with a higher initial l-thyroxine dose (12 to 17 μg/kg/day) as advocated by some (1). Only when these data are available will it be possible to decide more rationally what truly constitutes optimal therapy in babies with congenital hypothyroidism.”

I can’t help but feel that the above quote^^ sounds very dehumanizing. Let’s keep recommending this, and then wait and see what happens to the babies…and we can always change our minds if the data continually proves the treatment is detrimental. 

Detrimental to whom? That data is people. That data is my baby. I have a right to hold my hands up and ask people to step back.  I’m not crazy about having the nurse threaten to call report us for child neglect over this, but I’m also not about to just sit down. 

The last thing I’m doing is neglecting this or neglecting Rebekah. Call them. Come on over. I’ve been wanting to do a local news interview anyway. This isn’t the first time someone wanted to have control over my decisions and probably won’t be the last. 

Now this next article is about adult hypothyroidism, but it also shows there’s a lack of concern for CAUSE, and it offers some answers to similar questions–Is Hypothyroidism Overdiagnosed And Overtreated?

“…at no time did any of these researchers account for the numerous reasons why people have low thyroid symptoms in the first place. The only things they are accounting for are: 1) TSH levels and 2) T4 levels.”

ALTERNATIVE TREATMENTS

After Rebekah is tested again, if her numbers are still out of range, I am going to ask about natural dessicated thyroid hormones (NDT).
T4-only meds like Synthroid do NOT work, exclaim many patients!

I found that the reviews and information about NDT definitely caused me to be more interested in this treatment than the info I found on Synthroid. 

“Did you know that a healthy thyroid makes five hormones?? They are T4, T3, T2, T1 and calcitonin.”

“T4, also called thyroxine, is simply a storage hormone meant to convert to T3, the active hormone. But a healthy thyroid doesn’t make you totally dependent on conversion alone, and also gives you a certain amount of direct T3 plus the other hormones above. So in other words, being on a T4-only med means you are missing out on direct T3 as well as the compliment of all five hormones. Also, calcitonin is a hormone that helps keep calcium from leeching out of your blood.”

QUOTES FROM PARENTS

Do you have a baby with congenital hypothyroidism?

Keep in mind, these kids are ALL ON SYNTHROID, and all of them started it very early. Doesn’t sound miraculous and easy on the babies/kids to me. 

  
“My son has almost completely quit eating in the past few weeks. I could literally hold in one hand the amount of food he has actually eaten in that time frame. …My boy is such a little guy already and I feel like he has definately lost some weight.”

“my little guy has been poked and prodded so many times in his short life…

…the older he got the harder it would be to distract him from the inevitable.”

“We were concerned about my son’s ability to walk because he would fall so much. It was like his little leg would just give out on him or he would drag his leg and that would cause him to fall.”

“It was a tough first year with all her eating problems.”

“My son just turned 2 and he was also born with hypothyroid,he was diagnosed at birth and been taking his synthroid since he was a week old,he walked when he was 14 months but everything else is real delayed he still dosent talk or say a word,he has all the signs of autism,hand flapping,no speech,seems like he is in his own world all the time,his endocrine said if he takes all of his medication everything would be ok,which i believed…”

“…his endocrine doctor told me it shouldnt have anything to do with his ch as long as hes been taking his medication everyday,which he has,i noticed when my son was about 3 months old he always had this glaze in his eyes i thought it was due to the synthroid,i am in contact with the other mother thats son has hypothyroid to in his therapy class,and they act very much the same way and thier foreheads are much wider than normal for some reason,his endocrine told her the same thing as long as he takes his meds everything should be alright…”

“My mom commented that his little eyes didn’t look right. She said they had a glazed look to them. He also kept his little tongue stuck out all the time. ”

“Her levels where a little high this time her TSH was 9.5 which has been the highest since she was born which it was 378.9”

“My sons levels at birth were 489.8…”

“I’m missing out on my daughter from all the worry and don’t get me wrong i love her to bits i really do but so frightenened of the whats going to happen…”

HOW I FEEL

I feel like I’m holding back an angry mob. That’s how I feel. 

I feel like everyone in the mob has a pill and/or a needle. 

Maybe I shouldn’t feel that way. 

But…there it is. That is how I feel. 

  

And I’m thinking about trying out some new makeup ideas.

 



MY ONLY COMFORT

I have to recenter myself several times a day. 

  

Rebekah Ruby Kate, 10 weeks
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13 thoughts on “Rebekah update: Congenital Hypothyroidism 

  1. Research is your best option at this point. I, too, have gone against the main stream in raising my children. I have always used the same response: “I base all of my decisions on when advantages outweigh the disadvantages”. In most cases, I do not find that to be true–thus, I do not pursue the stereotypical medical route that most people just seem to routinely follow.

    Liked by 1 person

  2. I am so proud of your strength and absolute determination. I am also completely analytical. Thank God for those who question. Praying for you sweetie❤️

    Liked by 1 person

  3. Such a hard and trying time for your family…I can’t even imagine what you are going through. Tons of prayers and thoughts for your beautiful tiny one

    Liked by 1 person

    1. Thank you!!!!

      This went to my spam folder in my comments…maybe because it has links in it.

      Anyway, so I am still learning how to use WordPress…and I didn’t know it even had a spam folder for comments.

      Like

    1. Yeah, I actually quoted this exact article in my controversy section–

      “Remaining controversy centers on infants whose abnormality in neonatal thyroid function is transient or mild and on optimal care of very low birth weight or preterm infants.”

      My daughter had IUGR and was low birthweight (5lbs 10oz, technically LBW is 5lbs 8oz), so one of my main points is that smaller babies have a very different hormonal profile.

      Like

    2. And this quote basically says…it won’t matter if they start treatment early in many cases anyway…

      “In contrast, when both maternal and fetal hypothyroidism are present, whether attributable to severe iodine deficiency, potent thyrotropin receptor (TSH-R)-blocking antibodies (TRBAbs) (or TSH-blocking immunoglobulins), or maternal-fetal PIT1 deficiency, there is a significant impairment in neurointellectual development despite adequate therapy soon after birth.6,14,15 ”

      Am I missing a reference to a conclusive study that shows that not taking Synthroid causes mental retardation? In the severe CH cases when the infant exhibits clinical manifestations (and not just abnormal thyroid levels), then yes, sadly those infants usually end up neurointellectually-impaired. But as this quote asserts…that usually happens with or without adequate therapy soon after birth.

      My daughter has no clinical manifestations, and the Synthroid side effects are enough to make me hesitate.

      Like

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  5. The thing is, the potential side effects of the Synthroid are not common (if dosed correctly, which can be checked), and are temporary — whereas mental retardation is permanent, even if the hypothyroidism ends up being transient. I try to imagine myself in the patient’s (baby’s) shoes. Would I rather deal with some temporary side effects from the drug, or with mental retardation for the rest of my life? I would choose (a) for myself. I think most people would. And it would break my heart to think I chose (b) for my child, even with good intentions.

    Like

    1. I didn’t choose not to pick up the synthroid only because of potential drug side effects. If you are truly interested, I can send you some links to read about the transient version of congenital hypothyroidism, the differences in hormonal profiles of low weight babies (and controversy around treating them), and all her labwork .

      Her TSH is at 8.18 now…appt to have levels checked again on Monday June 6, and appt with pediatric endocrinologist on June 30.

      Also, there is evidence of brain damage in untreated SEVERE congenital hypothyroidism (TSH of 750-1000), but there is not evidence of brain damage in untreated mild cases. Or none that I could find…please send links my way if you found some.

      I’ve written a few more updates on our personal journey; this is the oldest entry.

      Like

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