Born without a thyroid gland(Congenital Hypothyroidism

[magpieannie]

Does anyone out there have a child who was born without a thyroid gland? My daughter is now 8 years old and is now having PVC's (Premature Ventricular Contractions) in her heart. I am looking for anyone who may be hypothyroid and on synthroid who may be experiencing similar things. I am NOT convinced that the two are not related.

[magpieannie]

Hello! Thought I'd get back with you on this. Yes, your body must have thyroid hormone to function/thrive/survive. Since you were born without a thyroid gland, just as my daughter was, you must always take your thyroid hormone replacement. Does your doctor monitor your Free T3 level along with the Free T4? It is important  to check this when on a synthetic t4 only medication, to make sure your body is converting enough of the t4(storage hormone) into the active t3 that your body must have to function well. Since you have had a few negative "symptoms" it might be wise to do so, if you have not already. Conversion issues have been a problem in the past for my daughter and she suffered many hypothyroid symptoms due to a too high t4 and a too low t3 level when on Synthroid only. She has been on desiccated thyroid for 2 years now, which has t3 in it, and has done and felt much better. Good luck and best wishes to you.

[Ashbby16]

I'm 16 years old and i was born with out a thyroid. when i was born the doctors told my parents they can take me home than two days later they got a phone call and they said they ran some tests and found out i didnt have a thyroid so they took me back to the hospital to get looked at. i have been taking synthroid and getting blood work done ever since. i have been losing and gaining wait and losing some hair. right now im 92 pounds and my hair is starting to get real thin. some people been telling me if i stop taking my pills i can die. is that true??

[magpieannie]

Thank you for sharing your adult experience with me. How long ago did you make the switch from Synthroid to Armour? How are you feeling on the Armour compaired to Synthroid? My daughters "pin poking" sensations have seemed to disappear now. Maybe it was just an adjustment thing? She is much happier on the Armour. Acting like an energetic kid instead of a couch potato. Her steady weight gain has stopped, and she is more in control of her appetite with carb. cravings deminished. She is taking 120 mg and that has lowered her TSH to under 1, and her Free t3 is higher than before. Heart Palps (PVC's) appear to be no more, however I wouldn't know for sure without another 21 day Holter Monitor study. She had 83 in 20 days over Christmas. This was my major reason for switching doctors and Meds. I have been well pleased with the changes I've seen in my 8year old daughter on Armour thyroid!  I will get on the Facebook site right away. Thank you and please keep us posted on how you are doing on the Armour.

[Celadon]

I am pretty sure the number is 1 in 4000 for babies that have this disorder. I was born in 1976, and an observant military doctor said I looked jaundiced, and followed up on it. I too might have died or ended up mentally handicapped. I was on synthroid from then until recently. I am over 30, gaining more weight out of nowhere, and trying Armour now. I probably should have switched years ago, but whatever.

I don't know about "pin" pain for me. I've had profound chills in the past, just felt "slow" mentally and physically compared to other people, had chronic constipation, wrestled with depression and anxiety, and every other symptom on the list for hypo patients even though I was taking Synthroid. I've have legs or arms go numb while sleeping and they weren't in an odd position to cut off circulation.

As I've grown up, I've met many women 30-50, who have had surgery on their thyroid and ended up on synthyroid for one reason or another.

See Mary J Shomon's work. She is the "thyroid authority" on about.com. She too experienced a change in adulthood and wasn't getting much help from her physicians, so she took action, educated herself, and now she is a authority on thyroid issues. I assume she found a doctor who made a point to listen to how she felt in order to properly treat her condition.

http://thyroid.about.com/bio/Mary-Shomon-350.htm

Also, there is a group on facebook "parents of congenital hypothyroidism" you may want to join. I joined it and told them I could answer any questions if they had them since I had the disorder myself.

I assumeyour child's doctor checked for other gland and hormone deficiencies, I learned these things can happen with more than one gland.

[magpieannie]

Thanks for your ideas. The sharp pains haven't been happening as much now that school is out. Still having a few ankle aches. Did labs week ago Friday. Will get results at doctors visit tomorrow. Also testing vitamin b and magnesium levels. Will visit with doctor about the change in the Armour formulation. Do you have any articles that I can show her reguarding this. I actually read about this in another med help post awhile back. She is on 120mg of Armour. Might be too much. However 90 was not quite enough. Please pass on any interesting info. that you get on this. Thanks so much!

[redheadaussie]

Oh my goodness! Please totally disregard the youtube insert! I have no idea how that pasted on this page! (Not that it is rude or anything!)

[redheadaussie]

I have been studying up about people born without a thyroid gland. I have found that whilst the actual gland itself is not there, more often than not there is thyroidhttp://www.youtube.com/watch?v=9wHl9qRsMzw&feature=related tissue elsewhere along the neckline. This is due to an embryonic development gone a little skew-wiff. If we didn't have any thryoid tissue at all, we would die not long after birth!
   A lot of people don't do so well on the Synthroid as it is only a T4 medication. As your daughter has 'no' thyroid she would do better on a mix of T4 T3 medication. The Armour she is now on is more than likely causing her grief, as the company only just recently changed the formulation. MANY thyroid patients are having side effects from the new formulation.
My advice is to ask for Naturethroid. I am not on it personally, I live in Australia. But many patients are singing its praises!
  She may well have to change dosages as she matures and goes through puberty (don't you just love puberty!)
   Hope that helps!
Cheers!
  

[magpieannie]

Hello! Thanks for getting in touch with me. So there are others in the world, beside my daughter, who were born without a thyroid gland. Can you give me any first hand advice on what to expect from 8 to 19? She was on Synthroid until recently (heart palps, weight gain, and leg aches, moody, low energy) Now we are on Armour, doing better in these areas , however she is aching in new areas and crying easily. She keeps feeling like someone is poking her with a pin at random times at school while sitting at her desk. Really weird! Has that ever happened to you? Any advice or wisdomis greatly appreciated. I'm taking her for labs on Fri.

[hannah1234]

also... heart and thyroid?? i dont think  any connection.. doc may want to reconsider that.

[hannah1234]

I Was born without a thyroid . they found out at 10 days old. i was sleeping 23 hours ish a day and the doctor finally checked and realized i didnt have a thyroid.

if they didnt find it, id be either dead or mentally handicapped.