Hypothyroidism and Autism: The Story of Micah Boy Genius

Hypothyroidism and Autism: The Story of Micah Boy Genius

Micah (image via Jadranka Isabel Photography)

In August 2013 an article appeared in Endocrine Today entitled Gestational hypothyroxinemia associated with autism occurrence. It referred to a large-scale study published in the Annals of Neurology that revealed mothers with severe hypothyroxinemia (defined as maternal free T4 in the lowest 5th percentile with normal serum TSH) were four times more likely to give birth to a child with autism. I think of this article often and wonder about the madness of a medical system that fails to protect our children. Despite the research showing the potential dangers of thyroid disease in pregnancy, there is currently NO routine thyroid testing in pregnancy.

A mother named Jessica wrote a comment on my Hypothyroid Mom Facebook page. Jessica has hypothyroidism and her two sons have congenital hypothyroidism. Her son Micah has congenital hypothyroidism and autism. This photo of Jessica’s son Micah on their Facebook page Micah Boy Genius (the same one I’ve used above for the photo of this article) grabbed my heart. I just knew that I had to hear more of his story.

I write Hypothyroid Mom for us the adults with hypothyroidism. However to tell you the truth, I really write Hypothyroid Mom to create change for our children, so they do not suffer the same struggle for proper diagnosis and treatment as us. A child is never too young to be tested for hypothyroidism. Watch your children for signs. You must read Micah’s story and you will be convinced. Micah was born February 2009. Happy 5th Birthday Micah. Thank you to you and your family for sharing this unforgettable story. I have no doubt your story will help many children.

Written by Jessica Wade, Micah’s mother & founder of Micah Boy Genius

I suspect I had undiagnosed subclinical hypothyroidism after my third pregnancy, which happened to be an early miscarriage. I struggled with my weight and had all the symptoms of hypothyroidism, but my doctors told me my labs were fine. I believed them. I went on with my life and attributed my health concerns with being stressed out with the many responsibilities of a single mother.

After I married my husband in 2007, we tried to get pregnant for 8 months before we were finally at the point of giving up. We both were seen for fertility reasons and then I started taking a prenatal vitamin and prayed for a positive pregnancy test. A month later, we got those 2 little blue lines. I was pregnant with my second son, Micah. I wasn’t diagnosed with hypothyroidism and treated until after I had my youngest son in 2012.

1 in 88 children are affected by Autism Spectrum Disorders (ASD) and typically symptoms appear before the age of three and will last throughout a person’s entire life. My son, Micah, is one of those children. He didn’t receive his ASD diagnosis until the age of 3 after being on Synthroid for one year. Here is his (our) story:

Micah is my third child. He was born in February of 2009 and within 26 hours of birth, he had his heel pricked for the standard newborn screening. The results? Normal. His growth and health told a different story.

Each time we visited his pediatrician he had something going on. He was hospitalized for jaundice after his first well-child visit and then for the next 2 years he would develop a series of medical issues that were unexplained.

He had poor feeding, poor growth, constipation, and choking episodes. I remember feeding his solids at 10 months and his eyes would roll back in his head with a terrified look on his face like he was choking. It was very scary. He had horrible GERD, so we assumed the choking episodes were due to this. He slept constantly and while this was great for us, we didn’t realize it was a sign of congenital hypothyroidism (CH).

After his 1-year well child visit is when we really saw a decline in his health. He stopped eating. If he would eat it would be salty foods or processed baby meals. His nose was orange at his first birthday party and I assumed it was from too many carrots. Knowing what I know now, it was probably a sign of liver dysfunction.

He lost all vocabulary and began many OCD and autistic behavior between 1 and 2 years of age. He lost eye contact and his anxiety in public was at it’s worst. Everywhere he went there was “stranger danger!” Autism still wasn’t on my radar. But, something still wasn’t “right” with my son.

We took him to his pediatrician and told him we were concerned about his health and developmental delays. His suggestion, “Wait and see.” Something told me this wasn’t a good idea. So, we sought out a second opinion. Within 24 hours we got a call telling us he needed to be seen at a pediatric endocrinologist. What?! Why?! His TSH was 11.

After confirmation from a pediatric endocrinologist, Micah was diagnosed with unspecified hypothyroidism at age 2 years, 7 months old. He began treatment with Synthroid that same day. He also underwent growth hormone stimulation testing due to his low growth hormone levels last January and he’s being monitored for his short stature at this time.

We suspected he had congenital hypothyroidism (CH) and it was left undiagnosed. These suspicions were confirmed when our son Eli was born with CH in 2012 and had a TSH value of 35. However, this very week, after finally receiving Micah’s newborn screen results, those suspicions were solidified. His TSH value at birth was 30.

You see in 2009, the newborn screen cut-off in our state for borderline positive congenital hypothyroidism (CH) was 33, so technically his physician wasn’t notified.

However, according to the American Academy of Pediatric’s Updated AAP Guidelines On Newborn Screening And Therapy for CH, “Abnormal test results should be communicated immediately to the responsible physician so that follow-up testing can be arranged. Because of the potential for errors in testing, serum free thyroxine (FT4) and TSH levels should be determined regardless of newborn screening results when clinical symptoms and signs suggest hypothyroidism.”

Also, I found studies out there about the possible link between congenital hypothyroidism and autism.

I decided to switch to Armour for my own hypothyroidism two months after taking Levothyroxine because I was still having symptoms and I wanted to see if it would be beneficial. I’m so glad I did. Because I felt so much better. I asked Micah and Eli’s endocrinologist to switch them to Armour but he refused. So, I asked their PCP to do the switch. He did and it has truly made a difference. Please note this is our story. I can only share with you what has worked for us. Every person is different in terms of which treatment is right for them so this isn’t necessarily right for everyone, but it’s worth it to discuss the thyroid medication options with your doctor.

Micah grew a whole inch in less than 5 months on Armour! He barely grew that much in an entire year on Synthroid. He seems more active, less tired, and he seems to be learning new concepts a lot easier. He is still non-verbal, but because of his unique dual diagnosis, we are really unsure what part of that is due to the failure to diagnose congenital hypothyroidism (CH) and what part is autism. Seeing the great results of Armour, the pediatric endocrinologist concurs with our decision and was happy to continue monitoring Micah’s progress.

As for Eli, he began treatment by 6 weeks after his TSH dropped from 35 to 12.27 on its own. He hasn’t suffered any of the health problems Micah dealt with. He has met all developmental milestones, is verbal and beginning to speak in 2 word sentences and has no red flags for ASD.

THREE. This value stood between my son being treated early for congenital hypothyroidism and his symptoms being ignored.

My advice is, DON’T WAIT. EVER. Find another doctor or specialist. If your child isn’t growing or is experiencing any symptoms of congenital hypothyroidism or developmental delays, please ask your physician for a thyroid panel. Not because of fear of them being diagnosed with autism, but because they deserve the best chance at health and development. A diagnosis of autism isn’t a tragedy. In fact, the prognosis of Autism Spectrum Disorder (ASD) can be excellent. However, a failure to diagnose congenital hypothyroidism can be devastating and the brain damage can be permanent. DON’T WAIT AND SEE.

Find MicahBoyGenius on Facebook, Twitter @MicahBoyGenius, and Blog micahboygenius.com

Helpful articles and links:

A 7-year experience with low blood TSH cutoff levels for neonatal screening reveals an unsuspected frequency of congenital hypothyroidism (CH)  http://www.ncbi.nlm.nih.gov/pubmed/19486019

Updated AAP Guidelines on Newborn Screening and Therapy for Congenital Hypothyroidism  http://www.aafp.org/afp/2007/0801/p439.html

Clinical Report: Update of Newborn Screening and Therapy for Congenital Hypothyroidism. Pediatrics Vol. 117 No. 6 June 1, 2006 pp. 2290 -2303 (doi: 10.1542/peds.2006-0915) Reaffirmed December 2011  http://pediatrics.aappublications.org/content/117/6/2290.full.pdf+html

Neurological problems such as spasticity and gait abnormalities, dysarthria or mutism, and autistic behavior http://www.rightdiagnosis.com/c/congenital_hypothyroidism/complic.htm

Children With Congenital Hypothyroidism and Their Siblings: Do They Really Differ?  http://pediatrics.aappublications.org/content/115/1/e52.abstract

Prevention of intellectual disability through screening for congenital hypothyroidism: how much and at what level?  http://adc.bmj.com/content/96/4/374.full.pdf+html

Difficulties in selecting an appropriate neonatal thyroid stimulating hormone (TSH) screening threshold  http://adc.bmj.com/content/95/3/169.full.pdf+html

Treating patients not numbers: the benefit and burden of lowering TSH newborn screening cut-offs  http://adc.bmj.com/content/96/2/121.full.pdf+html

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About Dana Trentini

Who knew that little butterfly-shaped thyroid gland at the base of my neck could affect my life so completely? I founded Hypothyroid Mom in memory of the unborn baby I lost to hypothyroidism. Winner of two 2014 WEGO Health Activist Awards: Health Activist Hero & Best In Show Twitter. *Hypothyroid Mom includes Affiliate links. Connect with me on Google+

Comments

  1. Shawnae Morey says:

    Thanks for sharing this is a great story! Micah is adorable :-) my sister is having trouble finding a way to get my oldest nephew (who is 10) tested. The docs she has been to say hypothyroidism is not inherited. Grrr. Good for you for being persistent.

    • Dana Trentini says:

      Hi Shawnae, I’m sorry to hear your sister is having trouble getting testing for your nephew. So upsetting. I have a list of resources to help readers locate good doctors. I don’t know if they see patients your nephew’s age but worth finding out.

      http://hypothyroidmom.com/top-10-resources-to-find-a-great-thyroid-doctor-in-2013/

    • Petronella Clark says:

      Hypothyroidism IS inherited! And it is related to diabetes.
      My mother’s family suffer from both, and no doubt I could trace them back several generations. (I should add that my mother was South African, an Afrikaner, and her family tree shows cousins marrying cousins, so bad genes got concentrated – good ones too luckily!)
      I have the hypothyroidism but so far no diabetes – I do avoid eating too many sweet things, just in case.

      • Dana Trentini says:

        Hi Petronella, yes many of us can trace our thyroid disease through our family tree. My mother and brother also have hypothyroidism. Interestingly they were only diagnosed after I insisted they get testing. They thought their symptoms were normal part of aging and so did their doctors. Sad.

  2. Thank you SO much for this!!!

    Your experiences with your son as an infant sound exactly as if you were writing about MY son, down to the orange nose on the 1st birthday. Mine doesn’t have ASD, but does have Developmental Coordination Disorder , Sensory Processing Disorder , and related issues, and now I am convinced he should have thyroid panels run. He still won’t eat, but his weight is in the normal range on that stupid graph of theirs…. Will push now. I have known for ages something isn’t right. Thank you.

  3. Hey there, my 14 year old son was just diagnosed with hypothyroid. His TSH is 8.38 and has just started synthroid for 3 months before review. I have been looking for more information in hypothyroidism in teens and boys on particular. I want to answer his questions or be aware of any changes I should be looking for. This is fairly new to us and of course most information seems to be generalized and more specific to women. Just wondering if you have any helpful links or resources that we could look to

  4. i have a 5 year old boy, I was on thyroid meds during my pregnancy, his normal and happy, there’s just 1 problem, he doesn’t talk, he says 1 or 2 words, he has been 2 speech threapist and other specialist. I read online dat kids born 2 mums wit thyroid problem have low IQ, and develop slower, I really don’t know wat 2 do, its so heart breaking as a parent, knowing dat because of my thyroid my son is like this. I’m currently 4 months pregnant and so scared 4 the bby I’m carrying, cos I’m on thyroid meds

  5. Barbara says:

    Hi This may help others. Our boy now 12 was diagnosed in Nov 2010 with high functioning PDD-NOS w/ ADHD on the Autism Spectrum. I have went crazy trying to as he calls it Fix him. He knows he is different. A friend said to get a hair follicle test for heavy metals & they just sent me their report and guess what it says low thyroid production. I have a low thyroid and I guess he inherited it from me. So they give some suggestions about what to do going thru the PCP so that is my next stop. Your story has helped. Thanks. Maybe if all of us mom’s band together we can FIX this!

    • Felicia Brewer says:

      Im hoping this is the case for us , My son is 16 now. Very similar story. but never heard of hair follicle test, what Dr. did this for you. Did what number level was your son? What is cut off for our kids? I have read it is different but 25 is not it, still searching…So you wrote this in June, has your son been on meds for it? and have you seen difference?

  6. Felicia Brewer says:

    I just recently came upon this link with Autism from a Mom’s, searched more and came across you. I think this is me! Ive always thought I had it,, and never got any anwsers on why my twins came at 26 weeks. After therapies they started to develop normally. Then around age 3 my son started showing the signs of Autism, although peditrician would not diagnose then. My son is 16 now. I have spent year trying to solve his puzzles, medication, biomedical treatments. I have run out of answers, he is worse and my husband and I dont have the mental and physical strentgh to care for him anymore. I am so worried about his future. I have taken him for the regular blood test but have read that a TRH stimulation test is what is needed because the TSH T3 T4 will misdiagnose. Pediatrician said that test is thousands of dollars..Still have not gotten the results yet? What do you think about this? Is there a number I should look for instead of 33? I read somewhere 25 but that still may not be accurate for Autism.I am just thinking I should ask if he can get on the meds anyway and see if there is a difference.

  7. Hi I am Amber and I am the mother of Annabell. She is now 9 years old and ever since birth I have told the Dr that there was something not right, she met none of her milestones, had no control over her body and many many things that set my mommy radar off. The dr told me I was a worried mom and to stop comparing her to my other children. We contacted the local birth to 3 support group and they deemed her needing therapy all across the board. Speech, physical, cognitive all were delayed. They gave her therapies until she was 3 and after that we kinda fell threw the cracks. It wasn’t until she was about 5 that a trip to the local er that gave us a clue to what was going on. The Dr. on call that night had the lab to rerun her blood for thyroid problems and he was calling my house before I got home telling me to get her to the Dr now that she had no thyroid hormones in her blood. Now 4 years later she is still delayed, has been dx with ADHD and autism plus hypothyroidism. We will never know if she would have been “normal” or not but if they would have did a yearly screening or even checked when I kept asking what was wrong she might not have been in this shape. She struggles every day to do some of the most simple things. and even tho she is the way she is I wouldn’t trade her for anything!

  8. I am absolutely certain this was the case for my son. I have been diagnosed with hashimoto’s, and looking back, I definitely had severe symptoms right when my son with ASD was born. I also recently realized that my symptoms are very consistent with my son’s symptoms. And there have been times when he did not seem “autistic” at all. And he is also very intelligent. He is 20 years old. I recently had him tested for hashimoto’s, his antibodies were in reference range. I will keep pursuing this avenue.

  9. Hello my name is nicole in 26years old I was diagnosed with hasimoto thyroiditis 6months adter I had my first child when on synthroid (levo) was fine for a while until I got pregnant with my second child everything started to go back to the way I was feeling before I was on meds they bumped me up from 50 to 200 I was very sick with that dosage and stopped it went down to 150 after my daughter was born she developed normally till she hit her one year birthday and stopped talking didnt walk till 18 months old she was diagnosed in january for autism was the change in meds really that much of a difference

  10. Hi, my interest is piqued by this post, but I haven’t read it all since it’s quite long, and that’s difficult to do while hanging out with my little man! Could you write a quick summary? I have hypothyroidism and hashimoto’s, and I was monitored while pregnant. Only by my ob with my first and by my endocrinologist with my second. So are my kids at risk for autism, or do i not have to worry since i was monitored? Thanks!

  11. Natasha says:

    I have hypothyroidism and had it before my second child- during pregnancy I was tested regularly to make sure my medication didn’t need to be adjusted. I only told my doctore I had it and did not request regular testing but she did t anyway. My child does not have autism so for that I am thankful. I don’t believe everything I read as everyone is different. My point is that if you have been diagnosed and your midwife or obgyn is aware when you do get pregnant – they should test you and if they don’t you need a new doctor!

  12. i was diagnosed with Hypothyroidism before having both of my children 8yrs old & 10month old. After having my youngest I did not continue to take my synthyriod because I was nursing. However I just found out I’m pregnant again! I have had trouble getting pregnant with both my children and that why there is such an age difference! This will be my three child & obviously wasn’t planned and never in a million years would I have thought I could get pregnant again being off my meds for so long!! But I am now concerned since I conseved when not on my medication! Has this ever happened to anyone?

  13. Emily Miller says:

    As I lay here at 3am reading all this information, I don’t know if I want to cry, vomit or scream. I do know one thing I want to do: go wake my sleeping 6 1/2 year old son up and rush him to the nearest doctor and demand that he is given every thyroid test under the sun. I have watched him struggle for the majority of his life…he was recently diagnosed with IDD and Autism. However, our second opinion doctors are currently shuffling their feet (for the past year) on many other concerns that are effecting his every day life. He’s lethargic. All the time. It’s so bad, his days at school have been shortened and I pick him up every day at 12:30. He comes home and takes a 2 hour nap. Every day. He’s in bed by 8pm and still exhausted every morning. He suffers from anxiety, OCD, and severe constipation as well. Oh and did I mention that I was diagnosed with hypothyroidism 2 years after giving birth to him? I’m currently on Synthroid. I’ve seen a little improvement in myself but not a lot. So at this point, I want to call every doctor on the list in the state of Ohio until I find one that will run thyroid tests on my son. I want to thank everyone for all the helpful information. If anyone knows of any more good doctors who will run the tests on children and actually listen to the parents concerns, please let me know. The information would be greatly appreciated. This has been a long journey but I refuse to give up hope for my little guy! Hopefully we will finally get some answers. Thank you again!

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