guess i’m not the

guess i’m not the

People are so scared of…everything. So much damn fear. It’s exhausting.

The DHS investigators came over on Wednesday, May 11. Come on in, ladies. That’s all you will ever hear when you knock at this house. It’s not scary, don’t ever concede because you think it’s scary to have DHS visit.

They were so nice, much like the other two ladies who came in August last year when another Jewel in my eye called them over. I listened to them read the allegation from Nurse Benedict about Rebekah. Okay. Well, that was certainly full of half-truths, exaggerations, and easily-disproven lies.

I had my version organized and ready to email, much like I had in August when Clara had 10-12 flea bites. One of the nice ladies fed Rebekah her bottle while I emailed them tons of facts. I’ll relay both DHS experiences in full detail soon.

The DHS ladies explained to me that 85% of the claims they investigate are completely unfounded. It’s not a shock to them, but it is a lot of red tape and paperwork. They see a lot of spite, retaliation, petty-tattling, and outright lies.

I appreciate them and their jobs, and feel sorry that so much of their time has to be spent on claims that they know aren’t legitimate.

I just wanted to encourage my friends–don’t live in fear. And also, when you know some Billie Badass has her scope zeroed in on you–document, document, document. Be an expert on your own self, and on your children. Keep a detailed factual journal…because as nice as the investigators are, it’s hard to rely on your memory alone. And documentation holds up better in court.

We thought about retaliating. You know…that’s only human nature. Find out if Dr. Dilk knows how his nurse treats patients, and if he condones it. Report them to the state medical board for a review of how they mishandled our dealings with them. Pay the $1200 charge for 3 well-child checkups in $5 a month; harassment is expensive. But, no. No. Like so many other unwarranted stabs at us, Keith and I decided to walk away from it.

They are not our concern. They deserve no such attention.

Our focus, our true concern actually IS our beautiful daughter Rebekah Ruby Kate. She’s not a rope in a tug-of-war. She’s not a bundle of numbers. She is not a diagnosis. She is in fact…our beloved baby. (Side note…she weighed 8lbs and 8oz last night. She is getting small little chub rolls by her bum. It is our hope that she will be 8lbs 10oz for her appointment with the new doctor tomorrow…3lbs over birth weight at her 3-month checkup).

We removed Rebekah from their “care” on Friday May 6, because we are seeking a second opinion (appointment is tomorrow at 11am). Nurse Benedict left our May 9 appointment on the books (as well as 3 other appointments that she kindly made for us with no communication).

I assume she didn’t cancel them in an attempt to make us look like “no show” negligent parents. The thing is…I document EVERY detail of the truth when I start seeing the target lasers all over me. I have screenshots of every call she made to us, every call we made to her, days and times and call lengths…and notes on what was discussed.

I’ve had lots of friends and family message me individually with prayers and questions and true love and concern. I appreciate every one of you, and I will give updates. I will. It may take a few days after the appointment to get her next results in, and then it may take a few more days before I have the emotional energy to talk openly. But I will update. I will.

On Wednesday and Thursday, I was MAD. And it all makes me sad, too. Such a broken, backwards world. What are people’s true motivations and thought processes? Their TRUE ones. Keith and I both seem to have been born with an innate ability to piss off annoying people. Thank God we were also born strong.

Keith and I talked it over at length. The nurse may have crowned herself our personal browbeater…but we aren’t hers. Nope. Not going to do it. Part of me wishes we would’ve recorded some of her ludicrous calls. It was like trying to talk to an angry auctioneer.

We will not bow down to anyone, except God or Christ. This angers people, but it’s not a pride war. We aren’t playing her games. And then…I have to look for a benefit of the doubt, too. I have to try to think why, and I have to force myself to think…maybe it was just some CYA? But why the obvious lies?

He that is faithful in that which is least is faithful also in much: and he that is unjust in the least is unjust also in much. Luke 16:10

But it wears me out. I’m tired today. I’m tired. I’m tired of using my shield and armor to deflect. I’m tired of the bullshit, but most definitely…not defeated.

img_4342-2
Rebekah at 10 weeks old; she is now 13 weeks old…but alas my phone/camera is broken
IMG_2069
a few hours after Rebekah’s beautiful water birth

A lovely song for a tired soul…

 

“A Bad Dream”

Why do I have to fly
Over every town up and down the line?
I’ll die in the clouds above
And you that I defend, I do not love

I wake up, it’s a bad dream
No one on my side
I was fighting
But I just feel too tired
To be fighting
Guess I’m not the fighting kind

Where will I meet my fate?
Baby I’m a man, I was born to hate
And when will I meet my end?
In a better time you could be my friend

I wake up, it’s a bad dream
No one on my side
I was fighting
But I just feel too tired
To be fighting
Guess I’m not the fighting kind
Wouldn’t mind it
If you were by my side
But you’re long gone
Yeah you’re long gone now

Where do we go?
I don’t even know
My strange old face
And I’m thinking about those days
And I’m thinking about those days

I wake up, it’s a bad dream
No one on my side
I was fighting
But I just feel too tired
To be fighting
Guess I’m not the fighting kind
Wouldn’t mind it
If you were by my side
But you’re long gone
Yeah you’re long gone now 

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Rebekah update: Congenital Hypothyroidism 

Rebekah update: Congenital Hypothyroidism 

“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

Congenital Hypothyroidism 

Congenital Hypothyroidism 

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.