Re: Anyone have any experience of Congenital Hypothyriodism?

[Guest guest]

Hi there Juicy

I think you are new, so welcome. I dont have any experience of congenital hypoT, but someone will have - why dont you ask the questions that, as a mum, you need to know for your son? There are loads of people with lots of experience and Im sure someone will have answers for you.

Gill x

[Guest guest]

HI Juicy - glad you have found us and I hope you get all the help and support you can from TPA-UK. I hope also, that we can answer as many of your questions as possible.

I have heard of one other person being born with no thyroid gland - and it is amazing how well these people can be, though they do need thyroid hormone replacement for the rest of their lives. Does your son have any particular problems and how often does your GP test his thyroid function with blood tests.

Luv - Sheila

my son was born with no thyroid gland at all and was put on levothyroxine at 10 days old, since then (he is now 1yr)i have struggled to find any real support and info other than the standard list of symptoms and possible outcomes,which in themselves do little to ease a parents mind. i have lots of silly seeming questions that i just cant find an answer for, even from his doctors, any help would be greatly appreciated,

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[Guest guest]

Hi juicy121blue,

Welcome to the list. Do you have a name we can call you?

We will do our best to answer your questions, so fire away!

my son was born with no thyroid gland at all and was put on

levothyroxine at 10 days old, since then (he is now 1yr)i have

struggled to find any real support and info other than the standard

list of symptoms and possible outcomes,which in themselves do little to

ease a parents mind.

i have lots of silly seeming questions that i just cant find an answer

for, even from his doctors,

any help would be greatly appreciated,

[Guest guest]

Thanx for the welcome, my name is Emma, should have thought to

introduce myself properly, lol

Thankyou so much for the links, there is alot of info there, and they

have answered some of the queries i had,

My son is on 50mcg thyroxine daily and has to have blood tests every 3

months, they also take all his measurements (height,weight,head

circumference) and they assess his development, so far he has done fine

with all of those things, altho he does suffer constipation when he is

due for a dose increase, and has problems regulating his body temp, his

hands and feet are always cold.

the silly questions i have relate to his later life, things such as it

effecting his choice of career, travel (does he/we have to delare the

medication)

also altho i have been told that it was just 'one of those things' i

also wondered if it may have been something to do with a test i had

whilst pregnant, i was admitted to hospital with breathing difficulties

when i was 29weeks and whilst being tested i was given a radio active

substance (in a low dose) during a chest xray, I have since read that

certain radiation can destroy the thyroid gland in an unborn child,

sorry for the essay, i seem to have rambled a bit, anyway thanks in

advance

Emma

[Guest guest]

Hi Emma

> My son is on 50mcg thyroxine daily and has to have blood tests every 3 > months, they also take all his measurements (height,weight,head > circumference) and they assess his development, so far he has done fine > with all of those things, altho he does suffer constipation when he is > due for a dose increase, and has problems regulating his body temp, his > hands and feet are always cold.

Symptoms of hypothyroidism include constipation and low body temperature. The fact that your son still suffers these could indicate he is not on sufficient thyroxine and you could discuss with your GP a trial of another 25 mcgs. She may suggest raising it by 12 1/2 mcgs, but see what she says.> > the silly questions i have relate to his later life, things such as it > effecting his choice of career, travel (does he/we have to delare the > medication)

This isn't a silly question. It's a very sensible one. If he is treated with the level of medication that his body requires, there is no reason for this to affect his choice of career whatsoever (though I'm not so sure about deep sea diving???), neither should it affect travel. The person I know flies on a regular basis to America. As far as I am aware, anybody using thyroxine does not have to declare this.> > also altho i have been told that it was just 'one of those things' i > also wondered if it may have been something to do with a test i had > whilst pregnant, i was admitted to hospital with breathing difficulties > when i was 29weeks and whilst being tested i was given a radio active > substance (in a low dose) during a chest xray, I have since read that > certain radiation can destroy the thyroid gland in an unborn child,

Perhaps it was thought you had a problem with your own thyroid and it might have been this that was causing you breathing problems. Did they tell you they would be giving you a thyroid scan? This uses a radioactive substance to create an image of the thyroid as it is functioning. Did they know you were pregnant? I am not sure of the effect this might have had on your baby, but I would discuss this with your doctor. If they thought it was your thyroid, I would do a little research to find out whether you had any thyroid function tests done on yourself at that time, without you knowing what tests they were doing. There should be copies in your medical records.> > sorry for the essay, i seem to have rambled a bit, anyway thanks in > advance

Oh Emma - this isn't an essay, wait until you read some of the stuff that I write - I get verbal dire-rear

Luv - Sheila> > Emma>

[Guest guest]

>

> Thanx for the welcome, my name is Emma, should have thought to

> introduce myself properly, lol

>

> Thankyou so much for the links, there is alot of info there, and

they

> have answered some of the queries i had,

>

> My son is on 50mcg thyroxine daily and has to have blood tests

every 3

> months, they also take all his measurements (height,weight,head

> circumference) and they assess his development, so far he has done

fine

> with all of those things, altho he does suffer constipation when

he is

> due for a dose increase, and has problems regulating his body

temp, his

> hands and feet are always cold.

>

> the silly questions i have relate to his later life, things such

as it

> effecting his choice of career, travel (does he/we have to delare

the

> medication)

>

> also altho i have been told that it was just 'one of those things'

i

> also wondered if it may have been something to do with a test i

had

> whilst pregnant, i was admitted to hospital with breathing

difficulties

> when i was 29weeks and whilst being tested i was given a radio

active

> substance (in a low dose) during a chest xray, I have since read

that

> certain radiation can destroy the thyroid gland in an unborn

child,

>

> sorry for the essay, i seem to have rambled a bit, anyway thanks

in

> advance

>

> Emma

>

Hi Emma

I had juvenile hypothyroidism and by the time I was diagnosed at age

13 had no thyroid function left.

So long as your little lad is properly medicated and when he is

older does not forget to take his meds, he will be fine and should

have no restrictions on normal life.

Chris