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Avatar universal

Do you have a baby with congenital hypothyroidism?

I'm sending this out to any parent out there who may have a baby with congenital hypothyroidism.  My fourth son was born with this condition and my husband and I are always looking for anyone who can relate.  It feels like no one really understands because we are from a small town and my little one is the only one around with this.  At his local doctor's office he is quite popular because anytime I bring him in they are very interested in anything he has done.  He has been on synthroid since he was a week old.  I would just really love to talk to anyone who can relate.  Thanks.
124 Responses
442073 tn?1231877632
My daughter, now 10 months old, has congenital hypothyroidism.  I am very interested in learning from other parents what they are going through, and how there child is developing.  I would also love to learn about any effects she may face as she gets older.  I don't know anyone else that has this condition, or knows much about it. My daughter has been on synthroid since she was 3 days old.  She is developing very well, actually quite advanced for her age.

Thanks
Avatar universal
Thanks for getting back to me.  My son is also 10 months old.  What a coincidence, huh?  He was born in April 2007.  He has been on Synthroid since he was 1 week old.  I feel he is also quite advanced for his young age.  He has actually already started walking, which is much younger than my three older boys did.  I was totally unaware of this condition until he was born.  Did your doctor scare you to death like mine did?  When we received the call about his blood work all my ears heard were, deformity, severe retardation, etc...  I kinda freaked out at first.  Since then we have fallen into the routine of daily medicine and blood tests.  I've come to realize that we are so blessed to have had the PKU that caught his condition.  I'm very interested in talking with you more if you would like.  I've searched for someone else who could relate since he was born so it's great to talk to you.  Is your daughter's thyroid completely absent or just not functioning?  My boy's failed to move down his neck; therefore, it does not function.
442073 tn?1231877632
It sounds like the story of my life.  My daughter was also born in April 2007, actually on the 24th of April...how about your son?  She is also walking already, she started walking at 8 months, which seems to be extremely early.  My husband actually took the call from the doctors office, we had the same reaction you did, but all they would tell us on the phone was to, "Get her to the doctors RIGHT AWAY for another blood test" I will never forget the words coming out of the doctors mouth when we ment with him...cretinism, retardation, and medication for the rest of her life.  I was extremely scared, but we have a lot of support from her pediatrition. Like you, we live in a small town where no one has ever heard of Congenital Hypothyroidism.  
The endocronologist seems to think she does not have a thyroid, but I am still holding out hope that it just isn't functioning yet.  She had a nucleur scan done when she was about a month old, but no sign of any thyroid activity.  She is now on levothyroxine, which i believe is the same as synthroid.  Do you notice any side effects on the medication? How do you give it to him?  I have heard it is more common is girls then boys.  
Thanks for sharing your story with me, I look forward to learning more from you.
Avatar universal
Oh my gosh, it's like I am listening to myself!  We are so much alike.  My boy was born on April 23, 2007!  Can you believe that!!??  My little one had his nuclear scan done when he was 1 week old.  It highlighted his thryoid which was way up under his chin.  The doctor told me it would never function and that they would not even be able to find it if they performed surgery.  We heard the same words...cretinism, etc.  I think I cried for a week.  My husband also took the call, and then, bless his heart, he tried to relay what they were saying which only made it worse. LOL  Anyway, my son is on Synthroid and his endo. actually told us that we could not give him the levothyroxine because it was not as effective.  He made it a point to inform the pharmacy that we could not substitute.
I have seen no side effects of his medicine and he has actually started taking it whole instead of crushed up, which amazes me.  He just wallers it around in his little mouth until it dissolves.  When he was newborn I would crush it up and suck it up in a syringe with some formula and feed it to him.  Then when he went to baby food I would just crush it up and mix it with a bite of food.
He has also been checked for a heart murmur.  They told us that he couldn't take his medicine with soy, peanut butter and several other foods because they bind the hormone and don't allow it to absorb.  Did your endo. tell you that?  We had to be sure his formula was soy free.  But we were blessed with the fact that he took right to his formula and never had a problem.
It is so great to be able to talk to someone who understands!  Thank you so much for sharing with me and I really hope to talk with you much more.  Hope to hear from you soon, God bless!!
442073 tn?1231877632
I was not told she couldn't take her meds with anything specific.  I have heard that it should not be mixed with any iron enriched formulas.  But we just crush it, mix it with a few drops of water, and give it to her me spoon.  I have been thinking about trying to give it to her whole.  Maybe since it is working well for you, I will give it a try.  
Can you tell me more about what your son is doing developmentally.  My daughter seems to be doing everything sooner than most, I have often wondered if the medication has helped her develop faster. She rolled over at 4 months, crawled at 5 months, sat up on her own at 6 months, and walked at 8 months. She talkes quite a bit also her her age.
Thanks for sharing!
Avatar universal
I have been so amazed at my little boy.  He seems so intelligent for his age and has actually done many things much earlier than my older 3 boys did when they were his age.  I have wondered the same thing about his medication.  He has even tried coloring already.  I know that sounds crazy but he was with his Granna and she said he picked up a crayon and came to the paper and tried his best to color.  She said it amazed her.  He interacts and plays with his older brothers so much and has for quiet awhile.  He can already call one of my sons by his name and tries his best to say "I love You".  
In the beginning I was so taken aback by the fact that he had a "birth defect" of this nature that I think I watched him so closely for anything and everything.  But my parents even remark about how advanced he seems for his age.  I'm so thankful for that because when a doctor tells you your child could have faced severe retardation it kinda sticks with you doesn't it?  When they performed the nuclear scan on your daughter did it even highlight a thyroid gland?  My doctors were very specific about my son not taking his medicine with soy based formula, had to be milk based.  They told me that he couldn't eat peanuts, etc. for at least 2 hours after he took his medicine.  But my little guy does take his pill pretty good whole.  His endo had told me in the beginning that they had a "sweet" taste.  I gave him part of his pill the other morning in a bite of hash browns and he actually spit all of the hashbrown out and kept the pill in his mouth and sucked on it until it was gone.  So I guess ole' doc was right about that!  
I'm looking forward to talking to you more!!
442073 tn?1231877632
When they scanned my daughter, they found no sign of a thyroid.  The endo said that it is a sure sign that she doesn't have one.  The tech that did the scan said, she might have one, but uust just isn't functioning.  Since the scan detects the functions of the thyroid I still have some hope that it might be there.  Endo said in about a year or so, he will take her off her meds, and see if her thyroid kicks in, and possible do another scan.  I gave her her meds whole today, it worked great...thanks for the advice!
Talk to you soon.
Avatar universal
That would be wonderful for you and your little one!  I wish you the best and I'll keep your family in my prayers.
I'm glad that giving her the med whole worked for you.  It is so much easier, isn't it?  My husband and I always joke that even when my son is 30 I will still be calling every morning to see whether or not he had taken his pill.
Did you notice a difference in your daughter's hairline when she was newborn?  My son's was very low.  Of course at the time of his birth I didn't really think much about it because I fell in love with him at first sight!  He has several "angel kiss" birthmarks in different places all over his body from his forehead to the base of his back.  
442073 tn?1231877632
Giving her her meds whole is working great.  
There was no difference in her hairline when she was born...she didn't have any hair...she still doesn't have much.  Everyone thinks she is a boy, even when we dress her all in pink and have her ears pierced.
My daughter also has several "angel kiss" marks on her forehead. She also had one on the back of her neck/shoulder area, but that one has gone away.
Avatar universal
My little one has to go back to his endo on his birthday, of all days.  What a great present to get a big stick in the arm for bloodwork!  He's a little trooper though.  Last time he didn't even care that the nurse poked him with the needle, he just got upset because she put the rubber band thing on his arm.  I really don't think he is going to be very tall.  His brothers are all fairly tall for their age.  I am 5'9" and my husband is 6'2" so they come by it honestly. Talk to you soon! Oh yeah, about people thinking your daughter was a boy...my son has long blondish red hair and he has been called a girl more times than I can remember.  Crazy, huh?
442073 tn?1231877632
To bad your son has to go on his birthday.  NO FUN!  Last time I took my daughter to the endo, it took 3 people to hold her down, and two tries with the needle. It breaks my heart everytime. She is very strong for how tiny she is.  The doctors are amazed by her. Are you planning anything big for his 1st birthday? It's only about a month away! I hope you and your family have a wonderful and blessed Easter!!!
Avatar universal
I wish you and your family a blessed Easter also!!  It is so hard for me to believe that he is soon going to be 1 !!  This year has been a whirlwind!!!  I always try to do extra special things for my boys' birthdays.  I really get into the whole planning thing and cake making!!  I haven't really decided on a theme yet, but I have a lot of ideas.  What about your daughter's party?  Oh yeah, took my son to an Easter egg hunt at my other boys' school on Friday.  He really was NOT interested in the eggs at all, but loved all the attention everyone was giving him!  I hope your little one enjoys her first Easter!!  I'm looking forward to dressing mine up for church.  If I did have a girl, she would be dressed in ruffles and lace from head to toe!  LOLOLOL  Have a great weekend!!
442073 tn?1231877632
We are planning a pink and green princess birthday party.  It should be lots of fun.  Hopefully we have good weather that day.  Here in Michigan you never know what the weather is going to do. (it's snowing right now, yuck!) We had a great Easter, she loved hunting eggs with her sister.  Althought she was content with 2 eggs, one for each hand. I will confess, I dressed her in lots of ruffles and lace for Church, blue to match her beautiful blue eyes. She was the cutest one there!!!!!  With her sister way for Easter break visiting family, she has really taken to watching the Doodlebops, she loved to dance around, and wiggle her butt and wave her hand in the air.She diffinately didn't get her good rhythem from me.
Avatar universal
My little man has took to dancing too, though his only consists of bouncing up and down.  My older boys have taught him how to wave his arms up and down when a song comes on.  Very cute!  I had all 4 of my boys dressed in pastel collared shirts for Easter Sunday.  My little handsome crew!  I am very proud of my boys and very blessed, more than I ever deserve.
We actually went to Michigan for vacation 2 summers ago.  We went all the way to the U.P. and seen Tehquamen(don't know the spelling) Falls, etc.  We stayed in a little cabin that was right on the lake.  It was the middle of July, but we just about froze!!!  I'm from Kentucky and it is so hot here in July, but we wound up bundling up as best we could on a couple of days there!  My boys wanted to swim and their little lips turned blue!!  They loved the huge bridge up there!
Avatar universal
My daughter is 10 months old born 2 may 2007 she has congenital  hypothyroisim but she wasnt treated untill 8 weeks by this time she was hypothyroid,she has a thyroid but it just doesnt work well enough.
Unfortunatley she is unable to do many of the things your little ones can, she cant sit or doesnt babble some of her responses are slow all this is under investigation for a possible underlying cause.
Its so hard trying to find anyone else who knows about congenital hypothyroidism and I am glad I have found other parents.
Avatar universal
I'm so glad you found us!  I will be of any help that I can possibly be.  It' s definately hard to find others who can relate to this situation, I completely understand and am so thankful to have met a friend through this website, nholmes5 has made me feel not so alone and i hope to do that for you.  I'm sorry for you and your daughter that her condition wasn't caught with a PKU at birth.  My son's thyroid doesn't function at all and at birth he was already showing signs of hypothyroidism...low hair line, slow eater, long sleeper, etc.  He goes back this month for his check-up.
Did the doctors give you any reason why this condition was not detected in her bloodwork?  I wish you the best and am here for you if you need to talk.  I'll keep your family in my prayers.
442073 tn?1231877632
Welcome! I'm glad we have all found each other...I'm sure we can all learn a lot from each other, and hopefully make this whole situation go a little smoother.  So...WADDI, can you tell us more about your little girl.  If they didn't discover her congenital  hypothyroisim at birth, then how did they discover it? Did the doc's have to do a nuclear scan? How about medication? What does she take?  Since she has a thyroid that us doesn't work well enough.  Have the doc's said if they think it may start working better over time? (That' what I was originally told, until they found out she just doen't have a thyroid).
It's amazing that all our babies are the same age.  I think we must have been ment to find each other!  Your little girls birthday, was my actual due date.  Do you have any other children?
I'm looking forward to talking to you more!!
Avatar universal
Hi, I was just checking some of your other posts about your daughter's condition and it really bothers me that a doctor would tell you that her hypothyroidism would not be responsible for her developmental delays.  When my son was 1 week old he had his first dose of synthroid and my endo told me then that if he had not been treated by one week old he would already have some brain damage.  I became obsessive, as I'm sure you are too, about finding out any info. on the thyroid.  The thyroid stimulates the pituatary gland which in turn causes brain development and growth.  I went online and actually found photos of a baby with untreated congenital hypothyroidism and from the description you gave in your other posts your daughter has these classic symptoms.  I don't know if this is helping any or not.  I just know how obsessive I have been since my son's condition was known and it bothers me that your doctors were not more persistant about your little one's low thyroid hormone levels.  My endo. was very thorough and concerned for my baby's development to the point that his nurses even called me at home in the weeks after he began treatment just to make sure he was tolerating his synthroid and that I hadn't encountered any problems.  I'm so sorry that you and your daughter are having to go through this and I can't even imagine the frustration you must be feeling.  I'm sorry if I seem to be rambling on.  Please feel free to talk to me anytime.  God bless.
Avatar universal
Hey!  Just checking in with you!  Hope all is well with you and your family.  Can you believe our little ones will be hitting the big 1 soon!!??  We've found out that my little one loves the outdoors.  Everytime the door is opened he starts reaching.  He's a munchkin outdoorsman!  Just a quick question...have you encountered any eating problems with your daughter?  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.  I know that all babies usually go through a time where they really don't eat much, but I'm beginning to get a little worried.  He has lost some weight, but doesn't seem to act tired or run down from it.  Any ideas?  Thanks!
442073 tn?1231877632
Everything is great here, how about with you???  We had our first 50 degree day yesturday, we spend alot of time outside also.  My little girl just loved it, she was a little nervous about the grass, she didn't want to touch it with her hands, but she loved to run and swing, and chase the cat and dogs!!!!!  Regarding the low appetite...we have not had that problem here, my daughter eats everything you put in from of her, and usually some of our food too. She just broke through tooth number 3, so she's eating a lot more different things now.   If I'm thinking right, if his levels are high, he might need to up his dosage of medication on his next visit (good thing that's coming up) that might cause a lose in appetite. I'd ask when you go in next.  Hopefully this helps, have a great day.
Avatar universal
Thanks for the advice, I will be sure to ask his endo.  My boy is such a little guy already and I feel like he has definately lost some weight.  Could just be teething too though, I guess.  He has 4 big ones now!  He had a really rough time getting his top, middle front teeth in.  His little mouth looked absolutely horrible!!  Right now he is running a fever.  They always wait till the weekend to do stuff like that, huh?  Hey, listen, I'm really thankful to have you to talk to.  I knew the good Lord would send someone my way who could relate.
My son has figured out how to open and shut doors so now he shuts himself in our closet all the time and cries because he can't figure out how to get back out!  Have a great day!!  Talk to you soon!
Avatar universal
Hi again,
so heres Halles story.
I had excess amniotic fluid for my last 16 weeks of pregnacy regular weekly scans and monitoring apart from that a normal delivery at 10lb 4oz.In hospital she had one chocking episode and was very sleepy. We took her home after two days as she had mild hypoglycemia.
Midwife came to do heelprick at 4 days old, we got a call the following week saying a repeat was needed as her thyroid test had come back abnormal.Test was repeated and we never heard anything else.
I began to notice she was jaundice and she was tested for this at one week old, levels were ok so we were sent home.It got to 5 weeks old when I took her to my doctors I wasnt happy that her jaundice was getting any better so he sent her to the hospital for a full blood test to see what was causing the jaundice.
I began to notice things wernt right many of the things I had been asking midwifes and health visitors about were just getting over looked,she was very sleepy not waking for feeds and sleeping as soon as she had woke up.,face and body very puffy and people comented on her tounge being large,her skin was dry her hair line low.
I then had a call from the endo at the hospital who informed me that her blood test for jaundice has brought up that her thyroid was not quite working as well as it should be and a repeat was needed for the following day.
Ok I thought but that afternoon enough was enough I took her to my doctors,My doctor was worried ,this baby is hypothyroid she said and all the relevant phone calls were made for us to go straight to the hospital.
Halle has had a scan and she does have a thyroid in the right place it works but needs a little help so she is on 25mg of levythyroxine per day.

I read everthing about it causing damage I was so worried I just wanted to know if we had caught it in time. Well things hav'nt gone to well so far developmentaly but we will get there. My endo just wont agree with me that she would have suffered any damage after 8 weeks with just a slightly low thyroid and thats as far as our story goes so far.
I must add her symptoms improved once she stared her thyroxine so i cant see how she says it didnt affect her.
Sorry if it went on and on but I just needed to write things down.xx
Avatar universal
To be completely honest with you I think I would search for another endo.  I don't know if that is an option for you or not.  It's crazy to me that they would be so dismissive of the effects your little one's condition could have caused.  It's great that your daughter has responsed well to the meds.  Children are so precious and you're a great mom for supporting her.  When my son was born his little tongue stuck out all the time and even now he will walk around with it sticking out.  My doctor has told me that there was no way of detecting a thyroid problem through ultrasounds during my pregnancy because that was one of my first questions.  They say there is no way of determining a cause.  It's just considered a birth defect.  I don't know.  I was actually pregnant with twins but lost one of them at around 3 months.  I'll always wonder if that played any role in my son's thyroid problem.  So many questions!!!  Bet you know exactly how that feels, huh?  Thanks for letting us know more about your precious daughter and I wish you and your family the best.  Please keep in touch!  Talk to you soon!!
442073 tn?1231877632
Thank you so much for sharing your story with us. I agree with possible getting a new endo. or at least a second opinion.  Halle had all the classic symptoms from very early on. Have they giving you any indication that her thyroid may someday start working normally, and be able to take her off her meds? The fact that she has a thyroid, is a great sign. They seem to think my daughter (Hadley) doesn't have one at all. Sounds like your daughter has had a rough start at all this, but she could start catching up at any time,  Children are very resiliant, she'll probable be a genius someday and put all our kids to shame. I hope you have found some comfort in knowing there are more people out there going through the same things, I know I have.  
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