congenital hypothyroidism

[MyL&S]

Hi,

Im interested to find out if anyone has children with this disease??

I got the phone call today, that we all dread, from the hospital saying that the new born screening test they do (heal prick) showed my new born beautiful girl has congenital hypothyroidism. I'm in a state of shock at the moment. She had some blood taken today and i go for another test on friday. They have given me some information on this, and i'm trying to stay positive..

I would love to chat to other mum's with childen of this disease

[razzle]

I'm so sorry! I know nothing about this disease but my thoughts are with you all the same.

[MyL&S]

Apparently the thyyroid gland is responsible for normal growth, keeps the body running at a normal speed and helps develop the brain, if i dont have these test striaght away and get the medication to her which will be a tablet that she will have to take for the rest of her life she will deteriate in a matter of days and then the damage to her brain will be done..
My partner and i are really scared and want to get her through these test as soon as but they can only fit us in tommorrow for one of the tests.. :mad:
I just want to be reasured if there are any mothers with children of this disease.
either way my sphie is still beautiful and i am still blest.

[Melissa1983]

My thoughts are with you Alicia. I remember when i had Abby the nurse that done the test said at least 1 in 10 come back positive but then they do the test again and its normal so fingers crossed.

[kamckellar]

hi there,when i was preg with ds ethan i was on medication for an over active thyroid.because the medication passed on to him via the placenta his thryiod was under active.so i was in a similar position.he had heaps of tests and because i bf him as well it kept his thyroid function constantly under.i was weaned off my medication when he was 3 months old.we both have 3monthly blood tests to check our t3 and t4 levels.but everything is fine.the medication doesnot need to be for life just until the thyroid function is stabilised.my mum and aunty both have had their thyroid glands removed and are on medication for the rest of their lives as like you said your whole body relies on it to function.i understand your worry but it has been picked early and the medication works quickly.though regular blood tests are a must as when thyroid functions return to normal medication is then reduced.keep me posted on what happens.

[mimee78]

Hi,

My son was diagnosed with CH as well. Thank God his development is normal as he was under medication (Thyroxine) since 4th days old. He is already 10 months now and still taking the medicine but lower dosage (25mcg) compared to last time.
Doc said everything will be just fine as long as they take the medicine and do regular blood test in order to make an adjustment on the dosage. Pray to God that their thyroid will works by itself and produce an adequate hormone for the brain development, physical and mental development. As they can grow healthy and normal like others. :thumbsup: God Bless!

[rynosmum]

I have hypothroidism and also take Thyroxine daily (75mcg). Hypothyroidism is simply underactivity of the thyroid gland (measured in a blood test by your T3 and T4 levels) and generally an over compensating TSH (Thyroid Stimulating Hormone). Thyroxine is a hormone, not a medication as such. Studies have shown (allegedly) that once you start having thyroxine, your thyroid will continue to deteriorate.

Hypothyroidism is a serious disease when left untreated. When it is treated however, it is entirely manageable....but you cannot stop your medication unless advise by your Dr.

I stopped over Christmas (not sure why really) and within 3 weeks started putting on weight, getting really tired and very run down - I am still getting over it now and have been back on medication for 5 weeks.

The Thyroid maintains metabolism amongst other things - stick with the Drs and get a positive remedy plan.

Good luck ! PM me if you'd like !

[MyL&S]

mimee78: i have sent you PM, i posted this message soon after i found out and was in alot of shock.. and it did take some time getting used to the situation but my DD is a happy and healthy child. The worse part is the regular blood test:crying:
rynosmum: MY DD thyroid just did not develop it is still high in the back of her throat but with the thyroxine your right it will "just shrivel" (Drs words), after i found out a lady i know told me her sister had the same porblem and being in her 60s she sometimes forgets her face swells up and she feel sluggish as well so i hope you feel better soon

cheers

[rynosmum]

I'm sure I'll be back to normal very soon.

You're right - it's the blood tests for a little bubba that will be the hardest. Once they stabilise her hormone, the frequency of the blood tests will drop back.

As for her future with Hypothyroidism though, it's really not that bad. Sure, if you don't medicate it can be very serious. But as I mentioned, it is entirely manageable - when I'm on thyroxine, I really don't feel any different to being entirely normal. She will have a bright and happy future without any limitations - best of luck to you both !:thumbsup:

[mimee78]

Oh My God....i didn't know thyroxine could damage the thyroid. this is huge problem.....going to consult my doc about it. alicia, i didn't receive ur email. to which address u sent to? so what kind of medicine ur DD takes now? what's her tsh and t4? anyone has msn messenger? Take care!

[MyL&S]

hi mimee78, i did recieve your email today, i sent a Personal message to you username (I think) i had some trouble with the computer yest so might not have gone through.. i will sent another one..

DD medication has just been changed today and she is doing great.. am i hooked up with messenger but i dont use that often

talk soon

[faruge]

Hi,

I have a beautiful 27 week old baby girl, Jasmin, who has congential Hypothyroidism (No thyroid formed at all). She was diagonised at 13 days old after her 2nd guthrie test as she wouldn't cry (except at birth), wouldn't feed except through the tube in her nose and was just very placid. We started the thyoxin medication straight away and within days she started to feed with a bottle.
Every 3 months she has blood tests to make sure her levels are correct. They like to keep them a bit higher to help with their development.
So far so good. She is gaining weight perfectly. Now on 50% mark on growth chart for weight and 40% for height. She is rolling, baby babbling, smiling and starting to sit by herself. (which is alot earlier than her brother who wasn't born with this condition).
I know it is very daunting to hear the news that something isn't normal with your baby. I cried but then I spoke to the head specialist at the Womens and Childrens Hospital in Adelaide and he explained everything to me. Apparently the hormone tablet they take can actually improve their intellectual ability and some children with this condition are actually above average in Intellegence.

[Isabelle'sMummy]

Hi there
My name is Annette and my daughter Isabelle was diagnosed with Congential Hypo-Thyroidism when she was 6 days old and has been on thyroxin since she was 1 week old.. She had to get a x-ray,ultrasound and then a nuclear scan, my brave baby was only 1 1/2 week old and getting these tests done. Was going to the paed every 2 months and luckily they take the blood from her heel, her medication is going well. She has recently gone to 3months blood tests..

Just a question i have, the PAed called me tonight and said that last time her level was 0.8 but from the test last week now 12 :eek: which i dont know why, she said it could be many things, so instead of 4 mls she will have to have 6mls and then go back in 3 weeks to get a blood test again.has anyone else experienced this??


She will be 9 months on saturday which is great and is doing things she should be, would be great to keep in touch with you all as Dh and I are still pretty new to all this still and we are ecpecting #2 in dec.

MyL&S- your daughter will be fine :)

Better go hope to talk soon
Cheers
Annette:yelclap:

[mythreelittlemonkeys]

Oh My God....i didn't know thyroxine could damage the thyroid. this is huge problem.....going to consult my doc about it. alicia, i didn't receive ur email. to which address u sent to? so what kind of medicine ur DD takes now? what's her tsh and t4? anyone has msn messenger? Take care!

um I taking 5omcg a day and breast feeding hope that not affecting my baby - they never tested her since birth...

[Isabelle'sMummy]

Cel -

you cant get it in liquid form it's the tablets but they dissolve easy, and then we just syringe it into Isabelle's mouth, the Paed said this is the easiest way to do it.. i was getting from the hospital and they made it up in liquid form aswell..

mytillieroo -

Did they do the heal ***** test?? thats how they found out that Isabelle had it... maybe question it.


Cheers
Annette

[nat d]

with my thyroid not working or producing thyroxine, during pregnancy dr had to increase the dose from 175mg to 250mg by end of 2nd trimester. I was carrying twins. If this increase did not occure, both babies would have developed larger thyroid glands for they would have supplied thyroxine to me (Mum). By increasing the dose the my twins development in utero functioning as normal. I had regular blood test during pregnancy. I also breastfed the two babies, discovered that both had no probelms after the heal ***** test. There was a couple of months of 175mg as my dosage whilst breastfeeding. But doctors were not overly conserned and when I asked they had expertise that it had been done before and it was fine, but you are better off asking as I did. T4 is converted to T3 and is then through the blood, works with the other endocrine glands. The dose would have to be reduced as my body would have used the medication to its full potential before passing it through the breast milk. Anyhow I saw no change in my childrens behaivor. Wouldn't more thyroxine keep them awake and hypo? These babies were good sleepers.
Read through all of the other messages. "Why would you want to go off Oroxine for 3 weeks? If I went off the drug for 3 weeks I would be dead.
:)

[nat d]

I have a thyroid gland that only functions at 5%. I am glad that the heal ***** test is done today, it would have been nice if it was available in 1970. I am 37years old now and have taken Oroxine sinse I was 18 months old. My mother witnessed a very sleepy, jaundice, low interest in nursing, infrequent bowl movements and delays in development and growth. I was first born and it was not until my brother came along that she realised that he was reaching milestones earlier than I had. She was very fustrated and began to take me to a few GP's. She was then told by a secretary to go to the Royal children's hospital and see a paediatrician. I was instantly diagnosed and treated.
Having this condition has shaped my life and made me a very strong and resiliant person. When I think about how it could have been if I was born in 50 years earlier. I would not be here or severly mentally impaired. The mind I have now is very creative, compassionate and I have a thrist for knowledge. So look at your child and remember that it is okay. I have got this far and your child will too. I want to go back to uni and be a teacher. Todays medication has improved my intellectual ability, the shelf life is much better since kept in fridge.:)

[walrusandpossum]

Hi there "My L&S", wow. You really don't have anything to worry about at all! Really, not at all. I also have congenital hypothroidism like your daughter and I can almost say that I am better off for it! Haha that may sound strange, but for some reason when I look back on my wonderful childhood I think of how exciting it was to take daytrips to the hospital with mum, I felt special and yet did not suffer whatsoever. I had regular IQ tests which I counted down the days to because I considered it my opportunity to play games and show off! My IQ was above average and I knew it! The support I received at the Womens and Childrens Hospital in Adelaide was fantastic. I even love the smell of hospitals because of my positive experiences. I had an operation on my stomach hernia when I was four which can be a result of CH and I had plenty of blood tests of course, but you get used to them very quickly, which is helpful throughout life with vaccines etcetera! When I was a young teenager I would meet parents at the hospital, ones that had had children (usually daughters) with CH to reassure them that their children will have no less of an opportunity to be healthy. I hope this is helpful, I really just want to reassure you that your daughter is going to be so very very fine. Now I am doing my Masters in Psychology, I have a beautiful healthy son of my own who is now eight and I'm er.... slim and attractive (oh this is almost becoming to sound like Lavalife!) but I really want you to know that there is nothing that will be affected. Just one thing I can say in retrospect, you must train her to take her tablets herself as part of her routine. It seems quite common among CH sufferers that you are sooo normal that you feel that you don't *need* the tablets and that's when you start to feel tired and teary (not unlike PMS for me!) I'm sorry to go on but has this been helpful for you or anyone?

[nat d]

Hi walrusandpossum,
I is so nice to hear from another person that is possibly my age and has the same CH. I have never seen the words of another. You are lucky to have met others at the Adelaide Royal childrens, I come from melb. I have some words to talk with you about regarding CH. But I think this should go off line and into E mail. I noticed that all of the same things have happened to you such as being thin all your life and Pretty (Te he). And I had always wondered why I have a weekness in my stomach, they checked if it was a hernia, it is only a weekness, may have been on the way to to developing into one, I was one month prem. This was more obviose after the twins. I do agree with you about the responsible pill taking, that is a good idea. You are a very wise person. On the whole my first 36 years have been very good. I have always wanted to corrospond with another. Could really do with a correspondence now, Please!:fingerscrossed:
Yours sincerly Nat.

[sperry]

My daughter Macy turned 3 today! She was diagnosed with Congenital Hypothyroidism when she was about 6 days old. At the time it was the scariest news imaginable, I guess because of the fear of the unknown. We had no idea what was going on. I was really sick after having her, and while I was having ultrasounds to see why I was vomiting and bruising, we were called back to the hospital for her to have more tests. It was a really hard thing to deal with and both my husband and I kept questioning and blaming ourselves! Yes, she has had blood tests for the first three years of her life and will continue to do so, but she is coping with it really well. I think I'm more of a wimp than her when it comes to blood tests! She knows she gets a bandaid which the nurses draw a picture of a cat on, and a present from me afterwards and she's fine! And the daily Thyroxine is just part of our routine which she accepts and takes willingly every morning. The good news is she is developing normally. I was quite worried about her mental development from about 1 to 2 as she really wasn't saying much before she turned 2, however she has more than made up for it in the past year. Now she amazes me with the things she says! She seems to be very intelligent, and is turning into such a gorgeous, well meaning, compassionate little girl (who is also quite naughty sometimes!) who I just love to pieces. So I guess for all those people who are just learning about congenital hypothyroidism for the first time, that heel ***** test is the most amazing tool. We are incredibly lucky that congenital hypothyroidism can be diagnosed so early, and be treated so effectively so that our children can live completely normal lives.

[amyt878]

Hi Sperry,

I COMPLETELY know what you are talking about my Maddy has Congenital Hypopituitarism. She is missing her Pituitary Gland all together, so I know about the thyroxine and blood tests. Maddy has 3 missing hormones.
It is great to know the doctors knew what to look for!

[Molls]

Hi there. Looks like you have had a year to learn and gather info about your daughters condition. I remember the day we were told about our daughter and how frightnening it was. She was 6 days old. Had I known about this site I could have eased your mind then. Sorry. My daughter Molly just turned 5 years and she is 100% normal. She has been taking Synthroid all her life and will continue. I am forever greatful that its treatable. She is a beautiful happy little girl and has always been a bit ahead compared to others her age.
I am curious to speack to others parents as well who also have children with this and how their kids are.

[showchoirmom]

Jan 1994 seems like yesterday when we brought my son home. He was a little jaundiced and had somewhat scaly skin. Nurse said it was because he was overdue, but I am an Ultrasound tech and know when I got pregnant and had a very good due date. He was a week early. When he was 10 days old, I got a Fri morning call, Dr. told me his thyroid levels were not right. I did not know babies thyroid was tested regularly. When we got to hosp., his TSH was 729 and he was more jaundiced. Pediatrician immediately started him on Synthyroid, which we had to crush up and wash down his throat with sugar water. It does not come in liquid form. (1:4000 ) Pediatrician said he will do fine and be normal. Due to being on Friday, we waited until Mon for consult with Pediatric Endocrinologist. He reassured us that our son would be fine, and would have no restrictions with activities. That has been so true. He is wonderful. He had blood drawn every 3 mos or so for the 1st year, then every 6 months, and now yearly. He is 13. The endocrinologist keeps his dosage a tad bit on the high side in case of growth spurts. The only thing I can see, is that he gets extra thirsty and when he perspires, he really perspires. His hair gets wet. But he is wonderful. He is a straight A student. You would never know that he does not have a thyroid. My only recommendation is to stay in contact with a Pediatric Endocrinologist. I once thought my pediatrician could do the same physical exam as the endocrinologist, but when I got a copy of his medical records to take to the endocrinologist, the Drs. notes read, "Not sure what to do with the lab values, will repeat in the Summer." I said never again, I will stay with the Pediatric Endocrinologist.

[kaybee]

Hello,

My daughter was diagnosed at 1 week with hypothyroidism, she is 5 weeks today. Yes getting that phone call was very scary. It was a Friday afternoon so we went straight to the hospital to see the paed, she had a blood test to test her T4 and TSH, which suggested that she probably had a thyroid but that it was too small to work effectively and in the wrong place. Then we had the nuclear medicine scan which confirmed this. We are now giving her 25mcg of thyroxine (half a tablet) each day, crushed and mixed into Apple puree. Fortunately, she is taking it with no complaints! It's really quite silly that there isn't a liquid form of it considering it is something that is diagnosed at birth! They've had liquid paracetamol for babies and children for years!

Yes, the blood tests are hard, for me more so than her I think! We haven't seen a specialist yet, our appointment is in the new year.
Initally we were freaked out by it and I certainly did some crying and "why her" thoughts, but then quicky came to realise that it could have been much much worse and that she will have a normal, healthy life. We have since found out that my second cousin (who is in her 50's) and 2 very good friends also have the condition, which was quite reassuring as they are "normal" and you would never know they have CH.

It's also interesting that all 3 are female and most of the kids mentioned in here are too. Does anyone know if it is more common in females?

Great to hear positive stories!!

[sunshine005]

I have a 5 month old baby girl with this condition also Sleep Apnia :( Her levels are right at the moment but it was and still is scary, She is on 50mg thyroxine every nite also for the rest of her life. I cant go to the blood test wit her as it is to painful to watch i sit out side the room wit tears in my eyes as her nan takes her in. She hardly plays up but the thought of it scares me. If any one has information they are able to send me it will b greatly appreciated. [please contact member for email address] :flowerz:

[sunshine005]

Yeah it is more common in females than males but they are un sure as to why

[mumkc]

Hi there. As someone who also suffers from hypothyroidism I would say please don't worry. Whilst you would prefer that your child not have it, it just needs to be managed. Sort of like someone who has diabetes - they have to get used to the tests and taking the medication (although with thyroid conditions at least it is not daily and you don't have to monitor what you eat).

You'll be fine! :hugs::hugs::hugs:

[bubbalove2006]

Hi
My DD was diagnosed with CH 3 weeks ago. She is now 4 weeks old and is on thyroxine every other day. She's been having so many bloodtests to make sure the dosage is right and it's definitely been a very tough experience.

We're also going through the "why her" phase since this condition in babies is so rare but are starting to become more positive since the treatment is meant to be effective.

It's great to see positive stories and would be nice to share the journey with other mothers out there with children who have CH.

[shannonr]

hi my dd was also diagnosed with ch at 9 days old. she is now 6 months old. ihust wanted to know if any one else has or has had problems getting there child to sleep. chloe goes down for her nap in the morning no problem and most of her other naps during the day, but i can't get her to sleep at night, she will be on the verge of sleep for hours but can't switch her brain of to the finnal stage of sleep. i was wondering if this could be because of ther medication, she has 25mg in the morning. any help would be appreciated

[kaybee]

Yes. our daughter is a bad sleeper too. We saw her specialist on Thursday and asked him about it and he say's that it's not related to her thyroid or meds, just the luck of the draw. :thumbsdown:

Funnily enough, I am exactly the same as in it takes me a long time to get to sleep, I can't switch my brain off and my thyroid is fine.

[Patsy]

Hi - just found this thread today & very interesting to see others experiences.
I live in Scotland and have a little boy who was diagnosed with CH when he was 5 days old. Think it's quite rare in boys. He is fine & all seems well with his IQ & development.

One thing that did concern me was that he recently went onto some treatment for being Iron deficient - this was something called Sytrine ? Anyway being the nosey & inquisitve creature that I am - I done some research into taking the two medications together & discovered some research on a random American journal that taking Iron supplements actually inhibits Thyroxine absorption. I contacted my consultant about this and she was totally unaware and a bit dismissive of my investigating (i.e. for using the internet). Anyway two days later she phoned me & a Professor had confirmed that indeed Iron supplements inhibit thryroxine absorption.
So please be aware of this - I managed to get around this problem by spacing his medication - i.e. Thyroxine in the morning and Sytrine in the evening.
Just though I would share this info.

[mum720]

Hi, there is a great yahoo group/forum for congenital hypothyroidism, that provides a lot of advice, information and support - http://health.groups.yahoo.com/group/Congenital-Hypothyroidism/

We have found a lot of info about treatment, iron and absorption, ways to make blood tests less of an ordeal etc, at this site.

[franz]

Hi ...
I'm from perth with my baby boy affected IC
I'm really worried...but now after reading i'm feel better.
Anyone can give me a name of some Endocrinologist to see in PERTH.???
please any advice send email
ninociao@hotmail.com

[loubles]

Hi, I'm new to BubHub. I have a 12 month old girl (1st bub) who was born with no thyroid gland.. I am so happy to find some info out there and basically have the chance to chat to other mums going through the same thing.

Our daughter was diagnosed at 5 days old, basically because she really wasn't thriving at all... Got diagnosed before the heal-prick test - after an endless series of tests....(she spent 10 days in Special Care)...

anyway to cut a long story short she is now 12months and going great. We also see a great paed. and also get her blood tests (every 2months) at Royal North Shore. We also see the endocronologist there. Our daughter has no issues affecting her.. and just got a clean bill of health at the 12month check. Sigh of relief!

It is always nearly impossible however to find a vein at each blood test and they usually have 2-3 attempts.. It is getting harder and more distresssing for her.

I would love to chat more to you guys. I know out of all the medical conditions, this one is easy to manage, but for me I still find it a big thing to have a bub with a life-long condition. WOuld be interested on your thoughts on this.

Cheers, L