Congenital Hypothyroidism

[Challen21]

I was born with congenital hypothyroidism. The gland never formed in my body. I am 19 years old and I take synthroid everyday from iodine deficiency. I was wondering. Was anyone else born with no gland? It is almost unheard of.


This discussion is related to i was born without a THYROID GLAND, WAS ANY ONE ELSE BORN without one?.

[Barb135]

If you have no job, you qualify for Medicaid, in which your medication is paid by the state, since you have no thyroid and can't live without thyroid hormones for any length of time.  Contact your County Healthy Department for assistance in signing up.

[JoshR1982]

Hello,  I am a 33 year old male and was born with an under developed thyroid gland.  It was removed as a baby so I pretty much consider myself as born without one.  I currently can not afford the medication I need as I have no job or the energy to preform adequately at a work site.  The best advice I can offer you is to never stop taking your medication and although it seems like it does no good, exercise daily.

[ellisni]

Hello.
I just came across this. I was also born without a thyroid gland and I have been taking levothroid (known as levotheroxin now) since they discovered the problem when I was I think a week old. From what I've gathered it is very rare but there are others who have the condition and can function normally. It all has to do with when the problem is discovered. But, yeah, whenever I tell a new doctor or anyone who knows anything about a thyroid that I don't have one, they're very confused. I'm constantly asked when it was removed and most doctors actually have to check by feeling my neck to make sure that it's true. But definitely keep up with doctor visits and blood tests. If the medication is off for any reason it can make some pretty uncomfortable symptoms come up. When I was a kid, they over-medicated me which made me very underweight and made my bones extremely weak. Luckily though, thyroid research has come a bit further along so they can prevent problems a lot more easily :)

[Barb135]

We've had quite a few members over the years who were born without a thyroid gland, but I don't think we have any active on the forum right now, though maybe someone will pop in.  The condition is relatively rare, but not unheard of.

You don't take the synthroid because of iodine deficiency... you take it because you don't have a thyroid to produce the thyroid hormones that you can't live without.  The main hormones, T4 and T3, that your thyroid produces, control your metabolism, heart rate, body temperature and other body functions. These hormones are made with iodine, but they are only made in the thyroid.  

Synthroid is a synthetic thyroid hormone that contains the T4 hormone that is just like your body would produce, if it could.  The T4 hormone isn't used directly, but if everything else in your body is working properly, it will be converted to T3 for use by the cells in your body.

Most of the T4 in your body is bound by protein and can't be converted to T3.  It's only the Free (unbound) portion that's available to be converted.  Same with T3 - most is bound by protein, so it's only the Free (unbound) portion that's available to be used by the individual cells in your body.  Every cell in your body needs thyroid hormone.

If you don't have enough or if you have too much of these hormones, you won't feel feel well.  

How are you feeling?  

Do you get your thyroid hormones tested regularly, to make sure your Synthroid dosage is adequate for you?  

Do you have questions we might be able to answer?