FAQ - congenital hypothyroidism
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Congenital Hypothyroidism?

Was your son or daughter diagnosed with CH shortly after birth? I would like other parents to talk to about CH and all the support groups I managed to find seemed to be post it boards for advertisements about natural cures for CH... no real support there... does anyone know of a better place I can go to talk about my daughter's condition?

My son was born 3/22/06 with CH. He is 19 mo and doing wonderful. He is advanced in all areas. Me and a few other moms were active on an old yahoo board which we have since left due to all the spamming you mentioned and created a new one:
We have recently had two new people join. One I know was a mom of a three yr old recently diagnosed I found on babycenter.com. The other might have been you. However, if not please join. There are tons of women all over the world on there and it is fairly active. Some weeks we have tons of messages and other weeks one or two but if someone starts a thread you will get responses. And this one is run by two other women and myself so there is no spam.
Please come over there we can help with anything and everything. I have my sons birth and NICU story on the files and there in information on giving meds to all ages. As well as usefull polls and tables of information.
I look forward to seeing your introduction on the site.  (+ info)

What's the difference between cretinism and congenital hypothyroidism?

Is congenital hypothyroidism a TYPE of cretinism? Or vice-versa?

I'm doing a research project and I'd appreciate anyone who can help! Thank you in advance!

Cretinism is caused by extreme hypothyroidism during fetal (congenital), infancy or childhood.
So congenital cretinism is the same as congenital (severe) hypothyroidism.  (+ info)

Is there any long-term effects to early treated Congenital Hypothyroidism?

I have had Congenital Hypothyroidism all of my life, i was diagnosed at 2 days old. I have been taking Levothyroxine since i was 2 days old also. I am now 16, but I am curious if there are any long term effects of living with it. For some reason I have never really looked into my disease that much.

Possible long term problems appear to be in the areas of memory, attention and visual spacial problems but as yours has been treated since day 2, you may not experience any of these.  (+ info)

congenital hypothyroidism family support, experiences from families who have children with hypothyroidism?

I've been told that my boy who aged 2 weeks has congenital hypothyroidism (his thyroid gland is not functioning). He is now on hormonal replacement therapy. I need to know the experiences from other families, how they cope with daily treatment? how their children grow up? etc.

My name is Tina, my son has CH and he is 2.5 yrs old. I know at this point you are scared and wondering what is in your son's future. Don't worry, everything will be just fine.
Unless I told you, no one would know Lex has CH. And he has been taking his pill whole since he was one. So even that part gets better. And he is super smart. People usually think he is 4 yrs old because he talks so well. Please join our CH group on yahoo groups. There are about 125 parents who have been in your shoes. The group is great. I look forward to learning more about you. lex and my story is on the site in the files section.
Tina  (+ info)

Does anybody know of any good websites for congenital hypothyroidism?

My son is 3 weeks old and may possibly have it. He will be having more testing done. I am trying to find information online about this condition. Anybody know of any good websites to go to for it?

Hello my 2.5 yr old son also has CH. I suggest you go to the yahoo group previously mentioned. http://health.groups.yahoo.com/group/Congenital-Hypothyroidism/
The parents on the group are great. And there is a section for web sites. But I really suggest you join and post any questions and let all the moms who have been there help you out.  (+ info)

I have Congenital Hypothyroidism, is this classed as a disability which can be registered in the UK?

I have had this condition since birth and need to take medication every day, it also very much affects mood, weight etc

First of all disabilities refer to your ability to function and are not applied simply due to a condition. I would be very doubtful if your underlying problem,which is eminently and completely treatable and controllable with synthetic thyroid hormone is responsible for either your mood issues or your weight problems. Unfortunately many patients who have hypothyroidism blame their failure to lose weight on the condition. In fact this is seldom the case,once the appropriate dose of levothyroxine is administered they are physiologically and metabolically normal.

It must be remembered that currently in the UK about 46% of men in England and 32% of women are overweight (a body mass index of 25-30 kg/m2), and an additional 17% of men and 21% of women are obese (a body mass index of more than 30 kg/m2 ). So as a male picked at random Mark you have nearly a 50% chance of being overweight anyway!

It has also been suggested by the WHO that depression is now the commonest disease of all in the West,so the odds are again that this too is unrelated to your controlled thyroid status.

Without meaning to sound like a grumpy old doctor Mark,my advice to you if you were my patient,would be to get on with your life and take the chip off your shoulder and stop using your manageable condition as an excuse. There are many people with severe disabilities who soldier on regardless and complain much less that you clearly do!  (+ info)

My week old babies heelprick tests have come back, and an abnormality was shown for congenital hypothyroidism?

My week old babies heelprick tests have come back, and an abnormality was shown for congenital hypothyroidism?
More tests now need to be done, im soo worried. I have heard this can be treated but i cant stop worrying. Could it be a false result maybe?? or are the chances high my baby has this condition? I feel soo scared
Does an abnormal screening test mean that my baby has CH?

remember, tests go wrong all the time. I would go in, maybe even a different doctor ask for a second oppinion, if it comes out again this way, then speak with the doctor about what you can do, how this will effect your baby, etc. I hope it's a false reading!!  (+ info)

my 6 year old son was born with congenital hypothyroidism can i claim disability living allowance for him ?

everyone has told me to claim for him as he has always had it and will always have it . he has had medication everyday since he was 17 days old and does regular blood tests so has been fit and well , would he be entitled ? does anyone know ?

First off all if you are in the UK, 99% of doctors do not know how to treat thyroid disease. They only know about Thyroxine which is a synthetic CHEMICAL and should not be in your body. It has many side affects, some (few) dont feel unwell on thyroxine as you may well find in a couple of months...weight gain, extreme fatigue, frequent bowel movements, puffy eyes and dry skin, and many others.

In the long term it leads to osteoporosis. In time you will experience these side affects, so please keep the information that I am about to tell you as you WILL need it. You can treat your thyroid by natural medication with NO side affects. The medication is called Armour Thyroid and is derived from pig’s glands that have a great success rate. They actually used to prescribe it in this country for people with thyroid disease. Yet most doctors don’t even know that, in fact most doctors will not have heard of it and advice you against it while not being able to give you scientific evidence why you shouldn’t! That’s because it’s all about money not health. Their problem with natural products is that nobody can patent them, so the government cannot have exclusive ownership. But they can by making up synthetic chemicals.

What you need to know is that about 85% of people are unable to transfer T4 into T3 when they use Thyroxine. T3 is essential to the function of the main organs of your body. Armour thyroid naturally has T4, T3 and T2 and T1 and it make you feel well with no side affects. Tyroxine does not have T2 & T1. Once you research it at the site below you can order it from the recommended site www.internationalpharmacy.com
I was on Thyroxine for two years and did not feel well on it I had absolutely no energy and my weight ballooned up to 19 and a half stone. I started my Armour in April this year and I am now 15 and a half stone with loads of energy. Armour Thyroid helps increase your metabolism where thyroxine slows it down. As you don’t know me, don’t take my word for your health go to www.tpa-uk.org.uk Sheila Turner (expert on thyroid disease) runs this thyroid patient advocacy site which will inform and educate you on your disease. There are over six hundred other people on that forum who are taking Armour Thyroid and can give you advice. Pretty soon you will see that doctors know absolutely nothing about treating the thyroid. The are ignorant about it.

Beware of people on this site who are not what they seem, and will try and discreadit amour thyroid at every oppertuinity.

  (+ info)

Does anyone have a baby with Congenital Hypothyroidism??

My 10 old baby has just had this condition picked up on from the heelprick test. Im soo worried

Try not to worry. I don't have a baby yet (13 weeks pregnant) but I have Hypothyroidism and am therefore being monitored. I have been told it can affect the babies IQ level but only VERY slightly. Speak with your doctor and find out what their long term plan is and don't be afraid to pester. Hypothroidism in an adult is easy to live with and I am sure it is easy to control with a baby too. I take thyroxine to keep the hormones balanced and it works fine. Hope it all works out for you. I would be interested to know the long term plans as there is a strong possibility my baby will be born with it too.  (+ info)

protruding tongue for congenital hypothyroidism?

WHAT CAUSES MACROGLOSSIA (enlarged tongue) in babies with congenital hypothyroidism? i tried to research the causes but i just cant seem to get a good explanation.. anybody???

Neonatal hypothyroidism  (+ info)

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