My Daughter Has Congenital Hypothyroidism

My 17 month old daughter was diagnosed with congenital hypothyroidism when she was ten days old. Her newborn heel-***** screening came back abnormal and we had to get a CT scan done on her before she was 2 weeks old and start her on Synthroid. I've been squirting crushed up pill and water into her mouth with a syringe every morning since then. Her pediatric endocrinologist is happy with her growth and development and I am SO thankful that this was caught and dealt with. I'd love to hear from others living with this condition!

ETA: I guess you can't say p r i c k even when you're talking about pins and needles!

katie111 katie111
26-30
28 Responses Mar 15, 2009

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Hi,

I know this is old, and would have every much loved to have responded sooner. I am 26 years old and was born without a thyroid. I was extremely ill when I was born and almost passed, had to be in the ICU for a couple of weeks.

Essentially, I wanted to let you know (and hope this is true for you) that it is completely possible for your daughter to grow up just fine. The doctors told my mom I wouldn't be five feet tall, I'm over five six. They told her I would be intellectually delayed… I'd like to think I'm not! I am actually pursuing my PhD in School Psychology, so I think that says something. I currently have my master's in developmental psychology, and am working as a research specialist in children with down syndrome and autism. Just wanted to spread the word and share a little hope. Granted, not having a thyroid has been incredibly difficult, I had my fair share of illnesses growing up, and now that I'm older I struggle with a lot of hormonal disorders. But, it is very much a disorder that can be regulated and lived with. Just keep on top of it, my mom stayed on top of everything and that's why I am the way I am now.

Please feel free to respond. I'd love to hear how your daughter is doing now.

Candace

Hi my daughter has the same and she is now 3 its been a roller coaster alot of ups and downs she was on liquid meds for the first month of her life but she kept spitting it out and now shes on tabs she has 2 tabs and chews them like sweets lol at the moment shes in nursery and she loves it only in for for 2 and half hours in afternoons but I enjoy the peace im struggling with her constant crying I get upset and down about it as I think im not being a gd mum to her she has her bloods done every 3 months now and they come bk fine so somtimes I dont no if its her hormones or shes just a whingebag lol I got 3 older boys and they love her to bits they call her there special princess x

My daughter was born with CH, and was soon put on Levothyroxine. The doctor she had lowered her medication too soon and it caused Grand Mal seizures, I was also told that she would have a learning disability because of the Hypothyroidism and having such severe seizures at such a young age. However every time we go in to a well child check up they say she is over developed. She is now 11 months old and is at a two year old level, besides not talking very well she is the smartest and happiest baby I have ever seen. The only thing I advise a parent who has a child with Hypothyroidism is be sure you question your doctors, they may think they know your child but I wouldn't want any parent to have to go through all the tests we did just to make sure there was nothing more to the seizures than the change in medication. It took them 4 months to figure it out. Thankfully she has been fine ever since!

How could you tell she was having seizures, at such young age? Curious.

My daughter is 27 months old and was diagnosed with congenital hypothyroidism at 8 days old through her PKU test. she has been on the Synthroid ever since. she is at the point now where she just chews the pills. she recently was decreased slowly from 163 mcg every 2 days to 62.5 mcg every day starting today. the doctor says she is still too small for a normal baby her age but on par for a hypothyroid child. thankfully she wss diagnosed early enough and treated aggressively early enough that she had no mental reprecussions. Dejah is the smartest lil lady i have ever seen. she is starting to sing her alphabet and can count to 20. Because of her thyroid problems she was also born with a form of anemia that prevented her immune system from developing and because of that she almost died 4 times before she was 2 months old. i am so blessed to have her.

My daughter just turned 7 months old. Her new born screening came back abnormal and was diagnosed with CH, due to an absent thyroid, when she was five days old. We were told she could develop slower than others, be smaller, not be very strong and so much more. Again, here we are 7 months later she is very advanced for her age. Already crawling, pulling up, and pretty close to walking. She's in the 95th percentile for her height at 27 inches long and the 75 percentile for her weight at 21lbs. At first it was unbelievably scary not actually knowing or understanding what CH was or why my child had it. I do just want to put out there that your child can very well be just as normal (whatever that may be) like any other child. She's our little blessing and I wouldn't change it for the world!

I am going through the same and can't stop crying... My daughter is ten days old and its a shock. The worse thing is not knowing if she Will be ok. Would love to talk.

I was born with congenital hypothyrodism, and didn't start treatment before I was three weeks old. Despite that I'm pretty much a normal 24 year old woman, and am currently entering my last year of my postgrad (MPhil) studies. As long your daughter is properly medicated and gets her levels checked often enough, she should develop fine without any problems.
Just be aware of the common symptoms of hypothyrodism, and she'll turn out great I'm sure!

My daughter was diagnosed w/ the newborn state screen as well. She is almost 6 years old, onrey and growing well. I am also so very grateful for the test.

I was born with Congenital Hypothyroidism 31 years ago. The year I was born - 1981 - was the first year they started testing babies in Texas. I am very thankful that this was caught. As an adult, it is difficult and sometimes very frustrating to deal with doctors that want to "lump you in" with other patients that have had their thyroid glands removed and base your levels on charts used to determine healthy levels in "normal" individuals. There is simply not much research on patients that have made it to adulthood with this condition - or at least for adults that did not have developmental problems. I did very well in school, hit all of my milestones, and have not had any problems - for the most part. I have had to move around a good bit, and in changing doctors, have often been met with blank stares or looks of complete disbelief when I tell them that I was born without my thyroid gland. I have even had doctors go so far as to order MRIs and CAT scans to ensure that there are no remnants - because obviously as the patient that has lived with this from birth, I have no idea what I am talking about. I have found that the foreign doctors have more knowledge about this condition and are more open to listening to the patient when levels need to be adjusted, as opposed to going by the charts. My endocrinologist in Memphis was from West Africa had only encountered this condition one other time in his entire career - he retired the year after I was assigned to him. I now live in Houston and I am the first patient with congenital hypothyroidism that my current doctor has ever encountered. She is quite proud to be my doctor. I just want to say to all of the parents that have newborns or older children with this condition - don't worry. With good treatment and proper attention from your child's doctor, there is no reason that your baby won't grow up to be a "normal" healthy individual. Stay away from the soy products! I wish someone had told me that when I was younger - the soy interferes with the absorption of the medication (Synthroid, Levothyroxine, etx). Learn the difference between soluble and insoluble fiber - it could be the difference between a comfortable baby with a healthy digestive system, or a very uncomfortable, fussy, and constipated little one. Exercise and water are very important also - especially as they get older. This is a metabolic condition, and it is possible that weight could be a battle - it is much easier to teach healthy eating and exercise habits when they are young and they will be more to stick with them as they get older. Listen to your child! If he or she is having headaches, trouble sleeping, or says they can't go to the bathroom, it may be nothing, or it may be a sign that their dosage needs to be adjusted. I am NOT a doctor - just someone that has been living with this my whole life. I am just letting you know the - difficulties - that I have encountered, and believe me, it is VERY frustrating to feel like you are not in control of your body and then have a doctor to tell you that it's nothing...as a parent, educate yourself on this condition, and if you don't feel like you are getting the right attention from your doctor, don't be afraid to ask for the records and go somewhere else. :) Good luck!

Me too! Wonderful things to hear. I was born without a thyroid, and am 26, not too far off from you. I'm so grateful they started to test for that at birth. Wouldn't be where I am today without it.

my son is now 9 years old and was diagnosed at day 6 with ch.. He is doing good, but has had speech and special ed classes due to adhd? I have no idea if they are related in any way but interested to find out if any other parent have had the dual diagnosis?

Hi. My daughter was a few days old when diagnosed by the heel ***** test. She is almost 14. As a baby she met all her milestones. She is very tall, plays netball and is doing fine at school. She could do better and get great marks but is lazy. Sometimes we think she lacks empathy compared to her siblings. Sometimes we wish she had more energy and got off her bed and put her books away. Sometimes I worry about her weight (she weighs the same as me). Obviously if she was more physically active this wouldn't be an issue. But, everyone is different. I have never attributed her less emphatic nature to CH, nor do we blame it for her wanting to lie around and read lots. We don't blame CH as the reason she doesn't study really hard, just enough to do ok. I want to reassure all of you with newly diagnosed babies that these kids do live normal lives. My daughter has heaps of friends, is happy and seems completely normal. I hope I'm not being naive or overlooking things. However, having two other girls I know there is no such thing as the perfect child. One will struggle with maths a bit, one might be shyer, one wilder with too much energy. They are all different. So we're not blaming CH. It rarely comes up. We'll just love them for who they are, while making sure she's getting the best treatment and being monitored. My daughter crawled at six months, walked at 11 months, talked then too. She wasn't the top of her class at reading at six but now I can't stop her reading. When she was diagnosed, well meaning family and friends said to me, "you're so lucky. It could have been diabetes or something like that" and I wanted to slap them. Lucky! Please! Their kids were all 'perfect'. Now I don't feel that my daughter is any less 'perfect' than theirs and know that they were right. We are lucky. It is such an easily treated condition, and if our kids were born 30+ years ago, or in a developing country they would be mentally retarded. So I tell my daughter that when she complains about a blood test. It could be a lot worse. Good luck with your babies.

I cannot help but think that maybe it's not that she lacks empathy, but might not feel well. I know when my levels are off nothing matters. Once they get back to where they're supposed to be I'm all over it.

hi,my daughter was diagnosed at ten days old,she is now 5.we found out that she has no thyroid gland.she is doing very well,some milestones have taken a little longer.She is excellent at taking her tablets and sort of understands why she has to take the medication.At the age of 2 she had a reaction to peanuts,so now has to carry epipens around with her.Believe me,children accept it better than us adults.<br />
Its nice to read other parents stories,i dont feel so alone!...in a good way!

Hi Katie, My little girl was born on Jan 25th this year(2011) and she too was 'diagnosed' at 10 days old from the heel ***** test. We give her Eltroxin suspension, 2.4mls daily. Its made up by the chemist for us but it to is a crushed up pill made up in a solution. My partner and I was just wondering if you could update on how your daughter is doing now??? So far our little one is doing great. As far as we can tell she is reaching all the milestones she should've by now and shes alert and gorgeous :-) We love her to bits and it was a HUGE shock when we found out she has CH but you wouldnt even be able to tell.<br />
It woud be great to see a update. We cant deny we wonder what the future holds... - though we're sure shes going to be a bright little spark

hi katie !!!<br />
<br />
my daughter results have confirmed an abscent throid gland she will b on the replacement therapy for all her life ,,, can u please update further on your daughters condition ??? please

Hi,

you can see my response in the above. I was born without a thyroid, am now 26, have a master's degree, am of normal height and development. Only thing I struggle with is ovarian hormones and weight. But overall, am doing well. :)

15 years ago my oldest son was diagnosed @ 7 days old, 13 years ago my second son @7 days, and 9 years my daughter @30 days(first test came back ok). boy has it been fun! (wink wink) really everthing is o.k, kids are just where they need to be accademically. there was some physical therapy done in the first couple years and the boys still have soft muscles. there have been other issues like mild hearing loss, unexplained leg pain in my oldest until 3 or 4 yrs,extreme food allergies acid reflux (at two yrs dr said his throut looked like an old mans). i think it was the food allergies.symptoms have tapered over the years and i dont worry as much although i think the boys will always have weight issues, of course playing vidio games doesnt help.best advise i can hive is watch for actual physical changes, these can indicate low or high thyroid. as for developemental, well every kid is different anyway. you cannot stress over every missed milestone. sometimes they just need help with muscle recognition. i would suggest that kids with soft muscle start early on in something physical that they can always fall back on cause sports becomes more of a source of ridicule in the kids with greater muscle problems. if i could have a "do over" i would get mine into something like yoga or judo etc..a sport that other kids may not have to depend on your kid to keep up. we have the regular issues of any house with teenagers, oldest a pain in the you know what, my second has ADHD. and my girl is now off thyroid but gets regular screening and results may change in the future. my biggest hurdle now is to get the kids to take more responsability with there pills and diet cause they will be on there own soon enough. be sure your edochronologist is pediactric trained!!! cannot stress this enough. there is a huge difference and can mean permanent damage if your dr is unfamiliar with infant treament. well take care all, hope to hear some feedback and would like to hear from other parents of older kids as well.<br />
thanks!!

My daughter was born in 2001, and will be ten soon. She was diagnosed at four days old. We were thankful it was detected so very early. I have to tell you, yes, there are things we've noticed with her development over the last ten years. She walked at 15 months and has had help in school up until fourth grade. She has always been a little slower to learn new things but is not in anyway retarded. She has no lable put on her. We have seen a sensory intigration specialist, audiologist, nuroligist, pyschologist, you name it, we've taken her. She did have a diagnose of mild hypotonia- that can also cause some of the learning issues we experienced. Again, when I say learning issues I want to stress the fact she CAN do everything else a quote on quote a "normal child" can do, it just takes a few months longer to learn. I wish there was MORE research done for kids born with congenital hypothyroidism. She has been on Synthroid since birth. Puberty should be very challanging. I will NOT give her anything from a happy pill pusher Dr. who doesn't know for sure why she experiences certain issues just because to the Dr. it sounds good. This is a real issue that has to be taken seriously. She is very creative and loving. Visual hands on learning works best for her. My advice to new parents is... Be thankful a hormone pill can be taken to stop birth defects. Don't panic if your child doesn't do everything by the book, read about hypotonia- might be related do to congenital hypothyroidism effect- Maybe have a speech and language pathologist evaluate prior to and when in school. This helped our daughter with comprehension. She's a very fluent reader...ahead of her class in fact, she just can't recall all information when quizzed. Math comes easy for her. Difficulties occur when problems are in paragraph form. This information comes from a mother who truly wants to help others and would like to hear from others as well. Thank you!!!

My son has CH (born with no thyroid gland at all) and is now 15. Does anyone else have a teenager with CH? He was diagnosed early and put on medication by 2 weeks of age - the doctors have always said he'll be fine but I know he isnt. Although he is tall and slim and looks mature, he has the mind of a child a lot of the time, no theory of mind (understanding another's perspective and the ability to demonstrate empathy), has subtle neuro deficits and isnt doing well at school, very vague with attention deficits. He responded well to a trial of Ritalin and uses this when he needs to concentrate on an assignment or exam but we know he hasnt got ADHD. The doctor is happy for him to use it anyway. I have found it pretty hard going recently. As a young boy his subtle cognitive deficits could be written off as being immature or growing up - but my heart is in my mouth wondering just how the hell he is going to function in the adult world....

can anyone help me?? my sister she has a congenital thyroidism and when she was baby we didnt know that she has CT(congenital thyroidism) and we've notice that shes not growing and she has this difficulty of pooping ....since we dont have money to bring her for treatment so we just wait ..til now shes 14 yrs.old ..Do you think she can be treated even shes 14 yrs. old?? hope u can answer my question...tnx guyzz i hope u will reply...

My son now 9 months old was diagnosed at 10 days old. He spent 10 days in the NICU due to under developed lungs. The day we brought him home we received a frantic phone call from the hospital and had to get him back right away so that they can start him on medication. He takes synthroid. He went from 35 mcgs, to 55 mcgs, to 75 mcgs, now he is taking 88 mcgs. Although his levels are coming down they are not where they want them to be. He seems to be developing on track however he is my 4th child and I do have some concerns. his hands and feet are always cold, he cries a lot, he is a happy lil man but when he is upset he just cries and cries. He has had sleeping issues since day one. He just went through his 1st double ear infection. He is still spitting up and it is like a thick flymn but they put him on zantac twice a day but that does nothing to soothe him. My other children said mama and dada and baba by the time they were 9 months and this lil man says nothing he has the cutest giggle and the loudest cry.. The drs continue to tell me oh he will be just fine they say I have nothing to worry about ...of course as a parent I have something to worry about. I worry every day I know no one that has a child with CH. When he was 4 months old I had to take him to another specialist because his cranium was growing to quickly...it has since slowed down he has a lil extra fluid in the brain but they believe this to rectify itself as he gets older. I have no clue what the future holds but I want to know anything and everything that there is to know. Any information that can be shared with me would be greatly appreciated. I thank you in advance.

My son was just diagnosed today with CH. He also spent some time in the NICU after he was born for under developed lungs. My son will be 2 weeks old tomorrow. I know this post was written some time ago, if you don't mind me asking, how is he doing today?

My son has CH. He was diagnosed at 10 days and has been treated with Levoxyl ever since (I second the comment above that Levoxyl is the only synthetic thyroid that dissolves properly for an infant). It is really worrisome for any new parent to find out that their newborn has a medical condition, so we were very concerned as any parents would be. My son is now 3 years old and is beautiful, energetic, and brilliant. I just wanted to mention that in case any other parents of newborns with CH are reading this. We are very lucky to live in an age where early diagnosis and treatment can make such a difference in our children's lives.

I have a delightful daughter who has just turned 4 and is doing very well on Levoxyl (Levoxyl by King Pharma is easiest to dissolve in water & add cherry syrup to make sweet). She was my third & I new there was something wrong with her puffy features & tongue. The fontanelle was also very large for a long time (along with low hairline & dry skin). The pediatric endocrinologists at UCSF were very honest & upfront with her prognosis of probable learning issues. We then went home & threw away all of developmental books from our previous children...I highly recommend this to anyone who is told their children may have developmental issues. Fortunately, she is happy, bright & eager to learn although not as strong as other kids her age (but getting there with PT). She did, however have chronic ear infections, and pronating hips (that I am told are not related to CH). I can't tell you how important it is to be consistent with the meds & to test every 4 months. It was a difficult couple of years, but she is really doing well now!

Hi, my 2 day old daughter was just diagnosed with CH. Really don't know what to expect. Good thing we pushed the Pediatrician to go ahead and test for it because of a mildly protruding tongue @ birth (just to be on the safe side) right before our discharge from the hospital! No one else caught on. Other signs and symptoms did not manifest themselves. Everything else was normal. Anyone know of problems encountered / side effects with Synthroid therapy?

Hy 5 month old boy has congenital hypothyroidism. They found out when he was 5 days old. Atm he is goin for blood test every 2 weeks coz his levels keep going up n down drastically. Did any1 else have this problem? Also he doesnt appear to hold his head correctly n still has colic did this happen to any1 else? His twin brother is fine n seems to be developing b4 him

My daughter was diagnosed with congenital hypothyiroidism at 3 weeks old. Thyroxine treatment was started immediately. She has mild hearing problems but other than this she appears to be developing normally. She is now 5 months old. I would be interested to hear from anyone with this condition.

Hi katie111 and everyone else, <br />
<br />
I was diagnosed with cogenital hypothyroidism when I was born 34 years ago. Back then, doctors had very little knowledge about this disorder and patients/parents did not question doctor's orders, they just followed them. So for a long time I had to take synthroid but never understood why. It wasnt until I was 30 that I took it upon myself to learn as much as I could about hypothroidism. It was then that I truly understood why I had the symptoms I suffered all my life. Intolerance to cold, severe depression, hair falling out, crying for no reason, the list is endless. <br />
<br />
BUT. Since then I have worked with every doctor in town until I could find one who cared enough to help me moderate my dosage of synthroid (which I've taken since birth) until I could get in control of the symptons. since then I've been a thousand times happier. There are still some things I would like to improve but that is a working progess. <br />
<br />
So for someone whose had hypothyroid all her life, I ask you as a parent to learn as much as you can about it. Talk to your doctor but also read online and find other parents going through the same thing. Two things I suggest you research are the effects of hypothroidism and the effects of thyroid replacement medication (such as synthroid). There are more natural throid replacement your doctor will most likely not tell you about. I'm in Canada so our healthcare system is a somewhat friendly to more natural solutions. I'm not sure what doctors are like in the US or elsewhere.<br />
<br />
Your child will be grateful for your efforts :) Feel free to ask me questions.

Hi ..<br />
<br />
My daughter has congenital hypothyroid and was started on replacement at 4 days. I was told the same thing she will be normal no effect. Fast forward my daughter is 6 years old in speech, resource and has some pretty severe learning disabilities. For years the doctors said it wasnt erelated to hypothyroid. After much research I found that 10 percent of cases that are treated early do have moderate to severe learning disabilities. Finally we are seeing a neurologist who saya it is related and he see s it regulary in congenital hypothyroid. Its frustrating being told there are no issues if you treat it. That is not always true. Often there are also behavioral problems. Anyone else out there going through this?

My daughter was born with the condition as well, she is 16 months and developing really well, but its hard to know what the future will bring, she has no thyroid at all which is a serious case, which means she is likely to be affected in some small way in the future, but how much? thats what seems to be hard to find out. Or maybe its not and I am looking for something that says she will be all fine and that does not exist!

Hypothyroidism (under-active thyroid) is just when your thyroid doesn't produce the hormones it is supposed to. Hyperthyroidism (over-active thyroid) is when your thyroid produces more that it is supposed to.<BR><BR>Most thyroids stop working at some point in your adult life. Almost every adult woman in my family takes thyroid medication. Oprah came out not too long ago announcing that her weight struggles are linked to an under-active thyroid. With medication, you can supply your body with the hormones that your thyroid isn't making.<BR><BR>Congenital hypothyroidism is basically the same condition in a newborn baby. It can result from an under-active, small, irregularly placed, or missing thyroid gland. My daughter has a thyroid that is the correct size and in the correct location, it simply is not producing the hormones it is supposed to produce. So she takes artificial thyroid medication.<BR><BR>Untreated, congenital hypothyroidism can be quite serious. It can interfere with body and brain growth. I was told it is the most common preventable cause of retardation. With treatment, you would never even know a child had it--no symptoms, no stature issues, no disability. Just a pill you have to take every day!<BR><BR>I feel very lucky that it was caught immediately and that, worst case scenario, my daughter will have to take a pill and get blood tests done occasionally for the rest of her life.

what is this syndrome thing?