Toddler with hypothyroidism...please help

[littlec]

My daughter had undiagnosed hypothyroidism for a few months as an infant, and it was diagnosed just before her 1st birthday (she's 2 now). We had tests done recently to find out if it was congenital or autoimmune (her first doc wouldn't do the tests); it is definitely autoimmune. I am trying to find out more, but I feel like the more I learn, the less I know. I've read things, spoken extensivley with her endocrinologist and pediatrician; I've had a phone consult with a naturopath, but I can't afford to see her! Everyone is amazed by her. They say "I've never seen a child this young develop hypothyroidism" and "her levels were off the charts". Okay, so then, why don't you take a freaking interest in her and try to find out WHY this is happening.

I just want to know what I can do to help her. The old endo said treat her like a "perfectly healhty child" as long as she's on synthroid. The new doc said no soy. We are trying to avoid soy, but I don't really know why. It seems like no one knows freaking anything about this! They've upgraded her syntrhoid again...she started at 50mcg, now it's 75. I mean, I don't want to just keep giving her more and more medicine. I thought maybe you guys could point me in the right direction. Any help would be appreciated. I'm so tired of reading and thinking I'm doing the right thing, only to find out it's wrong. I want her to be healed. Aside from a miracle, I don't know if that's possible. I'm afraid that they're going to just keep upping her meds and they'll get to the maximum dose and that won't work. I don't know if tha'ts possible, but it's how I feel.

If you have book, website, any sort of recommendations, I'll take it. I'm burnt out on doing research, but I have to find out more for my daughter. Thanks.

[Marnica]

Read this book

http://www.stopthethyroidmadness.com/

I would try and find an alternative MD and go see them. Most regular endos don't treat this problem correctly IMO. A lifetime on synthroid is not the way to go.  Again JMHO. Find a doc that will consider dessicated thyroid.

Out of curiosity, what type of sxs did your baby have that made them test her thyroid function??

[littlec]

Originally Posted by Marnica 

Read this book

http://www.stopthethyroidmadness.com/

I would try and find an alternative MD and go see them. Most regular endos don't treat this problem correctly IMO. A lifetime on synthroid is not the way to go.  Again JMHO. Find a doc that will consider dessicated thyroid.

Out of curiosity, what type of sxs did your baby have that made them test her thyroid function??

I agree with you- I feel like we're doing something wrong, I just can't put my finger on it. She's doing much better on sythroid than nothing, but we have ONE option around here for pediatric endos and the regular ones wo'nt see kids under 15. The doc will not prescribe the bioidentical thyroid- is that the same as dessicated?

Anyway, she had tons of symptoms- constipation, lack of appetite, slow weight gain, sleepy all the time- I brought each symptom to her pedi at different times, but they could all be considered normal for her age and size. And hell, we thought we were lucky to have a baby who slept through the night and went to bed without a fight. It wasn't until she lost 7oz at a random checkup when they did bloodwork. Then, they couldn't get all the blood...so she had to do bloodwork again and that's how we found out. My poor baby was wasting away in front of us and we didn't know. I didn't know her symptoms were pieces of a puzzle. She's much better now, but I feel in my heart that she's not optimal. Thanks for your input. I've read about that book. I hadn't read it yet because sometimes I feel like it's easier to stick my head in the sand and pretend everythign is okay- but deep down, i know it's not. Thanks again. I'm about to purchase the book.

[poorlittlefish]

Hello,

I am hypothyroid and it stems from an autoimmune issue.  I know that if this were my child I would be very afraid as well and research as much as I could but I did want to say that it takes a while for the medicine to really kick in.  My endo said it would take up to 3 months before I felt "normal."  Your daughter might still just be in that limbo period.  I don't know that the "correct" dose is an everchanging fluid number that varies with weight and many other factors. 

Anyways, I just wanted to throw that out there--good luck to you and your daughter.

[tanyalynn]

I think the first, easiest thing you can do is cut out gluten from your diet.  Not a solution, of course, but celiac, and gluten in general (even w/o celiac) exacerbate autoimmune issues in people, so that could help get to a steady state situation.  You may also need to work with several healthcare providers, many endocrinologists aren't very alternative-leaning, but your situation is such that you probably won't be able to find someone alternative, of whatever flavor, who is knowledgeable enough to guide you on the specific thyroid issues.

Google for a study on selenium supplementation and thyroid antibody levels, supplemental selenium reduced antibody levels significantly, some went to normal--the study was in adults, but kids can be low in nutrients too.  I've heard of changes like this in adults who remove gluten as well, without supplementing selenium. 

For my kids, their health is very intertwined with mine, so by combining my health history and symptoms with theirs (maybe going back farther in the family if possible), I was able to see more than just looking at either of them in isolation.  Not always applicable, but something to consider--just think about it, or share here if you want. 

You'll find more discussion of thyroid issues in kids by reading discussions aimed at kids with autism spectrum disorders.  It's not every kid, but there's discussion out there and more child-focused than you may find elsewhere.  Some of the autism-related yahoo groups may be helpful. 

[littlec]

Originally Posted by poorlittlefish 

Hello,

I am hypothyroid and it stems from an autoimmune issue.  I know that if this were my child I would be very afraid as well and research as much as I could but I did want to say that it takes a while for the medicine to really kick in.  My endo said it would take up to 3 months before I felt "normal."  Your daughter might still just be in that limbo period.  I don't know that the "correct" dose is an everchanging fluid number that varies with weight and many other factors. 

Anyways, I just wanted to throw that out there--good luck to you and your daughter.

Thank you so much. She's been on meds for over a year now, so I don't think we're in a limbo stage anymore. May I ask what you're being treated with?

[Marnica]

Originally Posted by littlec 

Originally Posted by Marnica 

Read this book

http://www.stopthethyroidmadness.com/

I would try and find an alternative MD and go see them. Most regular endos don't treat this problem correctly IMO. A lifetime on synthroid is not the way to go.  Again JMHO. Find a doc that will consider dessicated thyroid.

Out of curiosity, what type of sxs did your baby have that made them test her thyroid function??

I agree with you- I feel like we're doing something wrong, I just can't put my finger on it. She's doing much better on sythroid than nothing, but we have ONE option around here for pediatric endos and the regular ones wo'nt see kids under 15. The doc will not prescribe the bioidentical thyroid- is that the same as dessicated?

Anyway, she had tons of symptoms- constipation, lack of appetite, slow weight gain, sleepy all the time- I brought each symptom to her pedi at different times, but they could all be considered normal for her age and size. And hell, we thought we were lucky to have a baby who slept through the night and went to bed without a fight. It wasn't until she lost 7oz at a random checkup when they did bloodwork. Then, they couldn't get all the blood...so she had to do bloodwork again and that's how we found out. My poor baby was wasting away in front of us and we didn't know. I didn't know her symptoms were pieces of a puzzle. She's much better now, but I feel in my heart that she's not optimal. Thanks for your input. I've read about that book. I hadn't read it yet because sometimes I feel like it's easier to stick my head in the sand and pretend everythign is okay- but deep down, i know it's not. Thanks again. I'm about to purchase the book.

Does she have hashimoto's??  I know my hypothyroid is not autoimmune (no antibodies) so not all cases are.
 

[littlec]

Originally Posted by Marnica 

Originally Posted by littlec 

Originally Posted by Marnica 

Read this book

http://www.stopthethyroidmadness.com/

I would try and find an alternative MD and go see them. Most regular endos don't treat this problem correctly IMO. A lifetime on synthroid is not the way to go.  Again JMHO. Find a doc that will consider dessicated thyroid.

Out of curiosity, what type of sxs did your baby have that made them test her thyroid function??

I agree with you- I feel like we're doing something wrong, I just can't put my finger on it. She's doing much better on sythroid than nothing, but we have ONE option around here for pediatric endos and the regular ones wo'nt see kids under 15. The doc will not prescribe the bioidentical thyroid- is that the same as dessicated?

Anyway, she had tons of symptoms- constipation, lack of appetite, slow weight gain, sleepy all the time- I brought each symptom to her pedi at different times, but they could all be considered normal for her age and size. And hell, we thought we were lucky to have a baby who slept through the night and went to bed without a fight. It wasn't until she lost 7oz at a random checkup when they did bloodwork. Then, they couldn't get all the blood...so she had to do bloodwork again and that's how we found out. My poor baby was wasting away in front of us and we didn't know. I didn't know her symptoms were pieces of a puzzle. She's much better now, but I feel in my heart that she's not optimal. Thanks for your input. I've read about that book. I hadn't read it yet because sometimes I feel like it's easier to stick my head in the sand and pretend everythign is okay- but deep down, i know it's not. Thanks again. I'm about to purchase the book.

Does she have hashimoto's??  I know my hypothyroid is not autoimmune (no antibodies) so not all cases are.
 

Yea, I guess. They haven't said its hashimotos, but they did an ultrasound and bloodwork to determine if it was autoimmune or not and they said its definitely autoimmune. It's so odd that she'd develop it so young. Her symptoms started at around 3 months.

[vbactivist]

Originally Posted by littlec 

Originally Posted by Marnica 

Does she have hashimoto's??  I know my hypothyroid is not autoimmune (no antibodies) so not all cases are.
 

Yea, I guess. They haven't said its hashimotos, but they did an ultrasound and bloodwork to determine if it was autoimmune or not and they said its definitely autoimmune. It's so odd that she'd develop it so young. Her symptoms started at around 3 months.

How do they determine if it's automimmune or congenital?  I am just curious (not arguing).  I have a friend who had hypothyroid (assumed congenital) and it didn't show up until she was between 3 and 4 months of age, when her mom stopped breastfeeding her (40 years ago).  So, it is possible for it to be congenital and not present for a couple of months.  My daughter was born with congenital hypothyroid.  She is 3 now - she has been on synthroid all along.  Hers was caught with the newborn screening.  I have hashimotos.  diagnosed at age 13. 

I am wondering why a lifetime on synthroid is not seen as a an appropriate solution - can it eventually stop working?  Otherwise I feel like it's one of the easiest fixes - no side effects (for me), inexpensive (even without insurance), easy to obtain, etc...  Hanks for any input.
 

[Marnica]

Originally Posted by vbactivist 

Originally Posted by littlec 

Originally Posted by Marnica 

Does she have hashimoto's??  I know my hypothyroid is not autoimmune (no antibodies) so not all cases are.
 

Yea, I guess. They haven't said its hashimotos, but they did an ultrasound and bloodwork to determine if it was autoimmune or not and they said its definitely autoimmune. It's so odd that she'd develop it so young. Her symptoms started at around 3 months.

How do they determine if it's automimmune or congenital?  I am just curious (not arguing).  I have a friend who had hypothyroid (assumed congenital) and it didn't show up until she was between 3 and 4 months of age, when her mom stopped breastfeeding her (40 years ago).  So, it is possible for it to be congenital and not present for a couple of months.  My daughter was born with congenital hypothyroid.  She is 3 now - she has been on synthroid all along.  Hers was caught with the newborn screening.  I have hashimotos.  diagnosed at age 13. 

I am wondering why a lifetime on synthroid is not seen as a an appropriate solution - can it eventually stop working?  Otherwise I feel like it's one of the easiest fixes - no side effects (for me), inexpensive (even without insurance), easy to obtain, etc...  Hanks for any input.
 

 Synthroid and other synthetic thyroid meds are T4 only meds. T4 is the thyroid storage hormone. Its main function is to convert to the active thyroid hormone–T3. Humans were not designed to live on a storage hormone alone. I suggest you check out this site http://www.stopthethyroidmadness.com/t4-only-meds-dont-work/

[vbactivist]

Originally Posted by Marnica 

Originally Posted by vbactivist 

Originally Posted by littlec 

Originally Posted by Marnica 

Does she have hashimoto's??  I know my hypothyroid is not autoimmune (no antibodies) so not all cases are.
 

Yea, I guess. They haven't said its hashimotos, but they did an ultrasound and bloodwork to determine if it was autoimmune or not and they said its definitely autoimmune. It's so odd that she'd develop it so young. Her symptoms started at around 3 months.

How do they determine if it's automimmune or congenital?  I am just curious (not arguing).  I have a friend who had hypothyroid (assumed congenital) and it didn't show up until she was between 3 and 4 months of age, when her mom stopped breastfeeding her (40 years ago).  So, it is possible for it to be congenital and not present for a couple of months.  My daughter was born with congenital hypothyroid.  She is 3 now - she has been on synthroid all along.  Hers was caught with the newborn screening.  I have hashimotos.  diagnosed at age 13. 

I am wondering why a lifetime on synthroid is not seen as a an appropriate solution - can it eventually stop working?  Otherwise I feel like it's one of the easiest fixes - no side effects (for me), inexpensive (even without insurance), easy to obtain, etc...  Hanks for any input.
 

 Synthroid and other synthetic thyroid meds are T4 only meds. T4 is the thyroid storage hormone. Its main function is to convert to the active thyroid hormone–T3. Humans were not designed to live on a storage hormone alone. I suggest you check out this site http://www.stopthethyroidmadness.com/t4-only-meds-dont-work/

I will look at that!  Thanks :)
 

[littlec]

Originally Posted by vbactivist 

Originally Posted by littlec 

Originally Posted by Marnica 

Does she have hashimoto's??  I know my hypothyroid is not autoimmune (no antibodies) so not all cases are.
 

Yea, I guess. They haven't said its hashimotos, but they did an ultrasound and bloodwork to determine if it was autoimmune or not and they said its definitely autoimmune. It's so odd that she'd develop it so young. Her symptoms started at around 3 months.

How do they determine if it's automimmune or congenital?  I am just curious (not arguing).  I have a friend who had hypothyroid (assumed congenital) and it didn't show up until she was between 3 and 4 months of age, when her mom stopped breastfeeding her (40 years ago).  So, it is possible for it to be congenital and not present for a couple of months.  My daughter was born with congenital hypothyroid.  She is 3 now - she has been on synthroid all along.  Hers was caught with the newborn screening.  I have hashimotos.  diagnosed at age 13. 

I am wondering why a lifetime on synthroid is not seen as a an appropriate solution - can it eventually stop working?  Otherwise I feel like it's one of the easiest fixes - no side effects (for me), inexpensive (even without insurance), easy to obtain, etc...  Hanks for any input.
 

bloodwork and ultrasounds is what they did- they determined that her thyroid is the right size and in the right place, so they looked for antibodies in her blood, which would signal that it's autoimmune...and there were. How has your daugther done on synthroid? How many times have they adjusted the meds?

And I don't think it's not an appropriate solution, it's certainly what we're doing for now. And I've read about many people doing great with it. i just...when it comes to my kids, I want to explore ALL possibilities and I want to ensure that she's functioning optimally, not just "doing okay", you know. I can't explain it, but in my gut, I feel like we need to be doing more for her. Trust me, if it were just me, i'd take the synthroid and never give it a second thought. :)