Sunday, September 12, 2010

Congential Hypothyroidism

Do you know what that is?  I didn't either when Margot was born.  In fact, I had never heard of it at all until she was 9 days old.  That is when her pediatric endocrinologist gave us her diagnosis.  It's been a whirlwind adventure in her sweet 8 weeks of life, but we are finally adjusting and headed down this new path.

When Margot was born she was a happy and healthy 8 pound baby girl.  Everyone commented on her beautiful coloring and how sweet she was.  When we left the hospital she had lost a few pounds like all babies do, but I wasn't concerned at all.  When we went for her two day post hospital weight check and she had lost even more weight, despite nursing well, I knew right away something was very wrong.  Call it mother's instinct, but I knew, I just didn't know what.

Eight days after Margot was born, we had taken the big tikes to my mom's house to go swimming.  Margot and I stayed inside and rested while Josh and the kids had a ball, it was just a normal, fun, relaxing day.  When we got  home from the pool about 3pm. our little world was turned upside down.  We had a message on our answering machine from a pediatric endocrinologist office regarding Margot's appointment.  I was confused....endocrinologist...Margot....what the hell.  I think those were my exact words.  My heart dropped, because that mother's instinct kicked into full gear....I had known something was wrong, it was like a sixth sense.

The message was as follows....and yes I can repeat it, because it is a message I'll never forget....

"Hi this is the Dr. M's office calling from the Children's specialty clinic, I was calling to set up Mar-"gots" appointment (really no one pronounces it's always mar-got, yes mom you were right, but still I don't care, I love the spelling I chose.)  You have an appointment tomorrow (Thursday) at 11:00am, if you cannot make that I have also set one up from Friday at 1:00pm, but the doctor feels it is imperative that you be here tomorrow if you can.  Please call us back to confirm at this number..."

Can you say I was freaked out, confused, scared and everything wrapped into one.  Margot had not seen her pediatrician or anyone else with MD behind their name except her dad, since we left the hospital when she was 2 days old.  She had been continuing with weight and Bili checks, but we had not seen any pediatricians, so needless to say we were more than stumped as to why we needed to suddenly see a specialist.  No clue. 

The first thing we did was call the specialty clinic to see if the appointment was really for my sweet, perfect baby.  It was.  We then asked why?  The receptionist said for her thyroid.  We asked if she was sure it was for Margot, because we were not informed about any thyroid problems.  She said yes. 

We then called our pediatricians office.  Dr. B was out of town.  Her office did not have a clue why we were being sent 2 hours away to see a specialist.  There was nothing in her chart.  We got no where.  Josh did find out which pediatrician referred her, and after many tears and phone calls, Josh realized she failed her newborn screen for hypothyroidism.

The tears started flowing.  I was so ignorant when it came to congenital hypothyroidism.  I knew nothing about it.  I had no clue and was so afraid of google.  I called a friend of mine and the tears started flowing and even though I couldn't even talk to tell her what was wrong, I didn't need to.  She just cried right along with me, until I calmed down enough to explain things.  Sometimes you just need a good cry first.

We headed up to see the pediatric endocrinologist that will now follow Margot throughout her childhood.  She was only 9 days old and already in a waiting room for a specialist, never what you want to have to do with your newborn or any child for that matter.  After waiting about two hours we finally saw Dr. M.  He walked in and explained that based on Margot's newborn screen she was being diagnosed with congenital hypothyroidism.  Apparently a normal THL number for her thyroid would be 0.8  and hers was about 178.   He didn't even repeat blood work to make sure, he immediately started her on a daily thyroid medication that she will require for the rest of her life.  He also explained that this occurs in 1 of 4,000 babies and predominately in females.  He also explained how nothing I did or did not do during my pregnancy caused this  to happen, it just occurs during fetal development.  It didn't relieve the guilt that I had inside, not even one tiny, little bit.

He gave her the first dose of medication right there in the office, it kind of took me by surprise.  Shouldn't we do more testing?  I mean look at my sweet baby, she was perfect!  Medication, daily, seriously.  I couldn't even wrap my head around this a little bit.  I was scared, I was confused, I was in denial.  Because although I was sitting there in the room, with a specialist, listening to all the information, part of me was still thinking this was not real.  The test results were not hers, this was just a mistake or a really bad dream.  This didn't happen to me, this happened to one of the other 4,000 families. Dr. M just kept talking, I caught bits and pieces, I listened as he explained how very important taking this medication is, and how important it is that she get this medicine daily and at the same time every day and how it needed to be taken on an empty stomach. And there I had something more "tangible" to worry about.  An empty stomach, how in the hell do you give a newborn who is nursing every 2 hours and not really on any type of schedule medication on an empty stomach at the same time daily.  I finally had something smaller to wrap my head around.  I didn't need to worry about hypothyroidism or the long term effects, or if it would cause problems during her pregnancies one day, or how would she do taking this medication as an adolescent or in college, or if it would affect puberty or if she would fight obesisty.....  I could worry about the here and now and how in hell I was going to get this medication in her and on an empty stomach.

He also explained how taking this medicine daily and at the right dosage is especially critical in the first three years of life for normal brain development.  And that we would closely monitor her dosage this year due to how rapidly babies grow this first year.  And then he explained how it is also important for the rest of her childhood for normal growth and development.   And in my head I was still thinking about getting it in at the same time on an empty stomach....would 9am work best or 4pm or 9pm....I was in denial.  After going over all this with Dr. M, we headed home with our new prescriptions, samples of medication, a return appointment to recheck her levels, a headache and a heavy heart.

Margot is now two months old, we have been back to see Dr. M for her follow up and have received some very good news.  Her THL numbers are now normal, her thyroid levels are within normal limits, we are doing the best we can with getting the adult pill crushed in water down her and on an empty stomach, she is reaching age appropriate milestones on time, and she is getting chunky.  I cannot tell you how very blessed I feel about all this good news. 

So yes, throw all that on top of being the momma of three tiny tikes and just trying to survive the day and it is enough to drive you insane.
All that being said, I am now in a better place.  When I got the letter from Dr. M Friday letting me know her levels were all normal I felt like the elephant that had been parked on my chest for the last two months had finally got off of it and I could breathe.  It hasn't been easy.  I've thought about getting on medication myself.  I've been in a constant state of shock, denial, heart ache and very anxious.  But I've gotten better and feel like I am not returning to normal or to my new normal...I'm still adjusting to three, but it is good.

Life threw us for a loop, we are going down a slightly different path than the one we set out for and planned for with our baby girl.  And while the path is not better or worse, it is only different, it is still taking some navigating to meander through.  I know I am very fortunate, and that this could have been much worse, I hate hearing those words.  I'm not sure why.  I hate that Margot will need to take a daily medication forever and yet thankful that such a medication exist.  I hate that she needed to go to a specialty clinic at 9 days old and yet I am thankful they caught it so early.  I hate hearing that at least what she has is treatable when I tell people her diagnosis and yet I am so thankful that it is.  I hate when people say I told you everything would be okay when I tell them our recent good news and yet I am so thankful things are turning out to be okay....actually they are more than okay, I am the mother to three beautiful babies and I'd say life is pretty damn good.  I'm not sure why I hate those things....I just do and I'm just being honest.  I'm getting it off my chest along with that elephant.

So there is an update Internets.  It's been a long two months.  Lots of ups and downs and somersaults in between.  I'd love to share some updated pics, but in true third child fashion I really don't have any of Margot.  And it's not because my day is too busy to snap a quick photo although most days are, it is because my camera is broke.  And because I can't find my other one.  I promise to get some of her on here soon, because she is so damn cute.

I also apologize for my abscense...again.  It took me a long time to get this post up here.  There is so much I wanted to say about it, but at the same time so much I didn't' want to say.  I was wanting to make sure I was in a good place first and finally I am.  Rejoice with me in her good news and I promise now I am back.


Shannon said...

Thanks for sharing Margot's story with us, Mandi. You have been blessed on so many different levels.

Annie said...

I'm glad to hear Margot's levels are normal and you are in a better place now Mandy. There is nothing worse than having that haunting fear that something is wrong with your child and then having your fears confirmed. I was diagnosed at one year old with diabetes and my brother at 11 months- he also has Addisons disease (another endocrine issue) and even though they are sometimes difficult to treat, like you said, thank God they can. If you ever need someone to talk to that understands, I am here for you. And I'm sure my Mom wouldn't mind talking to you either. She knows first hand what you are going through.

Lots of love and hugs coming your way my friend. Sweet baby Margot is perfect! Like Shannon said, you have been blessed.

Laura @ Twenty5seven said...

How scary for you!

Thyroid disease is one of those things where google can be your worst enemy because although there are so many possible implications and so many things that *can* go wrong, most of the time it's no more dramatic than taking a daily vitamin tablet is.

I was diagnosed with my hypothyroidism when I was a teenager but it seems pretty clear I had it much earlier than that. Sometimes I get sick, my weight changes, my hair falls out, my skin gets flakey and dry. But at least I know what's causing it and how to fix it. There's a wealth of information on the thyroid with new things being discovered all the time. The problem most people have is being taken seriously and being diagnosed. You're in the USA, right? treatment options in the USA and UK are much better than here in Australia, you have several brands of thyroxine medication and even dessicated thyroid which isn't available here. So you're in a relatively good situation to be dealing with this. I can't imagine how awful it must be trying to give a 2mth old tablets!! I'm surprised there isn't a liquid or suspension available. I suppose thyroid conditions are mainly the concern of the elderly. has been a pretty good resource for me (although there are very few members with experience with congenital hypo). Mary Shomon is also very good although she seems to know a little bit about everything so it's hard to tell what is important and what is not.

Good luck with it all!!!

jennlagdavis said...

Mandi, this is something I worried about during my 2 pregnancies. I too had hypothyroidism and it runs strongly thru the family, and my dad has the kicker of all endocrine diseases - he has Addison's Disease. So the enocrine system is something I worry about OFTEN!

After Emma was born a lump was found on my thyroid and after a biopsy, cancer couldn't be ruled out, so I had it removed. I too will take medication the rest of my life to keep levels in check and I am constantly wondering it the children will inherit this disease.

The pediatrician is aware of the family history and is keeping his eye on the kids.

I pray for little Margot, that her levels stay in check and she never has any struggles other than remembering to take her pill every day.

Hugs to you!

Amy said...

It seems so odd to me that essentially out of nowhere a specialist contacts you for an appointment. I would have been in a great deal of denial as well.

Why all the secrecy?? Couldn't they just have said Margot's thyroid levels were off and we need to investigate? Seems that would have alleviated alot of stress and questions.

I am so happy to hear that Margot's thyroid levels are back to noraml. That is a blessing! I, like you, tend to look at the broader picture with everything, which in turn results in an anxious and frantic mommy/wife.
I think it's healthier to take things one at a day at a time. All my best to your beautiful family.

Also?? What kind of moron would look at Margot and pronounce it Mar"got"

Stupidity at it's best Mandi!

Blair said...

I cannot tell you what emotions this post brought up for me! It was so beautifully written and I will probably read it daily until Christmas Baby makes his/her debut. It is so difficult to not worry and stay sane.

I am so thankful Margot's levels are within normal range and I pray they are able to keep them that way for the first few years of her life. I know it will be a journey for you and your family and I will continue to pray for you all.

And for the record, I love the name Margot...and the spelling! :)

Can't wait to see pictures of that precious baby!

Anonymous said...

I happened upon your post while looking for information on 2 babies under 2, and want to let you know I was EXACTLY where you were in December when my first baby was born. We were instructed to go to the emergency room when she was 4 days old for the same shadowy reasons. She is now almost 10 months old, and healthy as could be. We get her thyroid levels tested every 2 months with a simple blood draw, and adjust her medication as needed. (You should be able to just pop the pill in her mouth by now- no crushing and mixing necessary! It dissolves easily and apparently tastes pretty good.) Our pediatric endocrinologist told us the medication is super stable, so while it's important to be consistent with time of day, the whole "empty stomach" instruction is impossible to meet with a baby, so don't stress too much trying to achieve it. Near Seattle where we live, we are able to get our daughter evaluated at 4 stages in her youth, to check for any possible learning or developmental disabilities. Are such resources available to you? Congenital hypothyroidism sounds so terrifying and foreign, and a lifetime medication seems like such a burden, but we truly are lucky to have such an easy fix for a potentially debilitating condition. Good luck to you and your family. Reading your story, and knowing I'm not the only one who experienced such fear and confusion, eased my mind greatly. Thank you.

mandi said...

thanks everyone for you kinds words! Thanks kellogs, welcome to my blog, it was great to hear your story!

Russell Moris said...

Another way of treating low thyroid gland is through whole-food nutritional bovine glandular from grass-pastured stock, raised without antibiotics and growth-stimulants which is found inside Desiccated bovine thyroid . Remember, it helps in better functioning of thyroid gland by promoting thyroid hormone synthesis.

Unknown said...

thank for the sharing the better and sweet experience with you and hope rest of the cases also like you

Unknown said...

I am so glad that your baby is doing newborn has been tested positive 2times in new born screening ,and again tested to conform yesterday and the result is coming tonorrow.i am so scared,its been positive twice so i dont think its gonna be any different result.i am so scared dont know what to do,where to start,how to wait for tomorrowfor the result .

Unknown said...

Thank you for sharing your story. I just got the same news as you, my newborn, at 8 days old, had been diagnosed with congenital hypothyroidism. It was a difficult pill to swallow and a lot of questions left unanswered at the moment. Your words could reign more true in my mind, things could have been a lot worse but I'm still mad and sad and not sure how to feel. I hope your little girl is doing good. I'm sure everything will be fine with my little one but definitely not how I imagined to spend my first few weeks with my baby.

fsdfasfsdf said...

we just got the newborn screening result my 3-week old baby last friday (it's his 2nd test already) and he's diagnosed with congenital hypothyroidism too. reading your post is such a relief. i felt that somehow at least I'm not alone and based on your experience, i think it wouldn't be that bad. I've been reading articles about it lately and I'm worried sick about my baby. thank you so much for sharing this.

Cookie said...

Your sweet glad you said those things. My daughter is just getting the news that maybe her new baby has CH, we pray she doesn't..but God's in control. She was born April 7, 2017 and goes to Texas Children tomorrow for testing. Life is still good and I give God all the glory good or bad everyday.

Cookie said...
This comment has been removed by the author.
Cookie said...

I'm so glad Mandi shared her story. If this happens to be our case too with my grand daughter, we can and will manage all of it with the precious new baby. It's a relief to know we're not alone.

Adventurer said...

I was in the same boat when i heard abt the results for Newborn Screening test for my first newborn , we did multiple ultrasounds as well to check the functioning of his thyroid glands etc as I wasn't ready to accept the diagnosis. To all the people reading this my little boy is now a healthy happy and a very smart 9 year old -he still has to get his bloods done every 4 months and visit to Endocrinologist but that is not stopping him from anything he wants to do or achieve. Today I am thankful that it was something like this which can be diagnosed at the right time and has a medication and not anything lot worse.

Hypothyroid Grandmama said...

My granddaughter was diagnosed with congenital hypothyroidism at just 3 days old. She was immediately sent to an endocrinologist as well as cardiologist (scary). It was rough her first year (being poked and prodded every 3 months). So thankful for the newborn screening though as undiagnosed/untreated hypothyroidism could have been life altering. With adjustment of meds to get her levels just right, she now sees the Endo twice a year, is 12 years old, has luxurious long hair, smooth skin and is a straight A student in the 6th grade! No worries mommies and daddies, there's hope!


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Mummy C said...

Hi there Mandi,

I'm currently going through the exact same thing!

I would love to chat with you more about your experience and updates.

Any way I could get in contact with you???

Melbourne, Australia