please help educate me

dcart · 06-24-2009, 12:16 AM

My daughter Maddie is 10 years old. She has sensory integration disorder and tourette's syndrome. She went in for a physical last week and the doctor said she had an enlarged thyroid. After it was pointed out it is actually quite noticeable. She has an appointment on July 20th to see a pediatric endocrinologist.

I'm worried about waiting a whole month to see the doctor, about how experienced the doctor will be in thyroid disorders, and how well my daughter will do with the testing.

I need some help walking through this. I want to be sure the doctor is on top of things from the beginning, that the right tests are being done and proper results being looked at. I find all the testing and numbers confusing and I want to be sure I have it all down in my head before we see the doctor. It seems from my research that many adult patients have trouble with doctors not doing things right and I worry that pediatric endocrinologists see thyroid problems even less often - beings it is more rare in children.

I'm hoping you all can school me on what tests should be done and what I need to watch out for. I would really appreciate any help!!

Deanna

inatic · 06-24-2009, 04:45 AM

Stop the Thyroid Madness - The truth about thyroid and thyroid treatment is great for educating on labs, testing etc. I honestly dont know what to suggest for a child though Pam might have some advice there.

bfuser · 06-24-2009, 06:32 AM

I agree with Inatic, Right now you need to educate yourself. After my Thyroid was removed the surgeon told me that I had probably had thyroid problems since I was about ten. Definitely read Stop The Thyroid Madness Now and Hypothyroidism Type II by Dr. Mark Starr before your daughter's Dr.'s appointment.

Start with the pediatric endo, and if you don't like him you can look for someone else. Who knows that endo recommended by your pediatrician may be great.

Be sure you have enough info to ask the right questions. In my experience Dr.'s will only answer your questions. They usually don't volunteer info.

Over they years my husband and I have found that we generally need to educate the doctors.

Here is another great book by the Shames, a Husband and wife medical team who have dealt with this in their own family.

Amazon.com: Thyroid Power: Ten Steps to Total Health:...

dcart · 06-24-2009, 09:16 AM

Thank you for the responses. I know all about the "educate doctors" thing. I was told my daughter was an antisocial brat and it was my fault for being a stay home mom and I needed to put her into daycare to get her socialized. This was when she was 3. When she turned 8 and threw a screaming tantrum because she couldn't do her work because the paper "felt" funny. I decided there HAD to be more going on then my kid was a "brat". I started researching and found SID - and the minute I read about it I KNEW Maddie had it. I found the doctor to diagnose it and had my doctor give me a referral. Same thing with the TS. When Maddie's tics changed from sniffing and doing a bunny nose -(we were told these were allergies and medicated her for them for years ) to a head jerk and an eye roll I found a pediatric neurologist that took kids with TS. In my state they make kids with TS go to a psychologist - this makes ME crazy. It's a neurological disorder - NOT a psychological one and yet the only pediatric neurologists in my state - there are only 2 - will not treat patients with TS and refer them onto a psychologist. I have read that thyroid disorder can make people do crazy things when the thyroid levels are off but no one would expect my to take my child to a psychologist to fix her thyroid so why do they expect me to take her to one when the chemicals in her brain are off and causing her brain to misfire??? It is a medical condition that isn't going to go away by talking about it. grrrrrrr. Sorry for the rant - but I have had my fill of stupid doctors, and is why I am educating myself now.

Our family doctor we have now is great. She says "I don't know" and finds us someone that does. She takes her daughter to see the PE we are going to see and says that she is really good. I don't know why her daughter sees a PE but I do know she had a heart transplant when she was a baby. So I am hopeful that she is good, however I do realize that kids with thyroid trouble are not the norm and this doctor may have more experience treating things like juvenile diabetes, so I want to be on top of the situation from the beginning. I no longer sit quietly in the passengers seat and let the doctors take me for a ride.

I also should add that I have Crohn's Disease and my family doctor said that she that Maddie's thyroid condition is probably going to be autoimmune related, it is highly likely when seeing kids with thyroid problems and my own autoimmune disorder increases that chance.

dcart · 06-24-2009, 10:28 PM

Stop the thyroid madness seems to have mostly information on hypothyroid. My daughter is very tall, very thin, high energy.... I think if she has a problem it will be more hyper then hypo, although I want to learn about both. I read it can go back and forth a bit with the meds. Also I guess it could be possible that her TS could counter act some hypo symptoms.

Under recommended lab work - are those the tests I would want done? Recommended Labwork | Stop The Thyroid Madness Would they be the same for a child as an adult? The same for hypo as haper? Is the antibody test the same for graves as it is for Hashi’s? With a goiter should I also ask for an ultrasound or is that only if there are nodules present?

Leo41 · 06-25-2009, 09:22 AM

I can only respond to your very last question. Some years ago, when I developed a goiter, the first thing my primary doctor did was order an ultrasound. He told me later that he'd feared thyroid cancer, and the ultrasound was to check. From the ultrasound, several small nodules were discovered.

I think the ultrasound has to be used to discover nodules UNLESS they are very, very large. I only have one that is large enough to be biopsied, and they had to use ultrasound to locate it for the fine-needle aspiration--i.e., it is too small to be felt even by an experienced doctor.

So, yes, I think that with a goiter, you should expect the doctor to order and ultrasound and if he/she doesn't, I'd ask why not.

06-24-2009, 12:16 AM	#1
dcart Junior LCF Member Join Date: Jun 2009 Posts: 3 Gallery: dcart	please help educate me My daughter Maddie is 10 years old. She has sensory integration disorder and tourette's syndrome. She went in for a physical last week and the doctor said she had an enlarged thyroid. After it was pointed out it is actually quite noticeable. She has an appointment on July 20th to see a pediatric endocrinologist. I'm worried about waiting a whole month to see the doctor, about how experienced the doctor will be in thyroid disorders, and how well my daughter will do with the testing. I need some help walking through this. I want to be sure the doctor is on top of things from the beginning, that the right tests are being done and proper results being looked at. I find all the testing and numbers confusing and I want to be sure I have it all down in my head before we see the doctor. It seems from my research that many adult patients have trouble with doctors not doing things right and I worry that pediatric endocrinologists see thyroid problems even less often - beings it is more rare in children. I'm hoping you all can school me on what tests should be done and what I need to watch out for. I would really appreciate any help!! Deanna

06-24-2009, 06:32 AM	#3
bfuser Senior LCF Member Join Date: Jun 2007 Location: Eastcoast Posts: 290 Gallery: bfuser Stats: 221/213/130 WOE: Metobolic Typing Start Date: November 2006	I agree with Inatic, Right now you need to educate yourself. After my Thyroid was removed the surgeon told me that I had probably had thyroid problems since I was about ten. Definitely read Stop The Thyroid Madness Now and Hypothyroidism Type II by Dr. Mark Starr before your daughter's Dr.'s appointment. Start with the pediatric endo, and if you don't like him you can look for someone else. Who knows that endo recommended by your pediatrician may be great. Be sure you have enough info to ask the right questions. In my experience Dr.'s will only answer your questions. They usually don't volunteer info. Over they years my husband and I have found that we generally need to educate the doctors. Here is another great book by the Shames, a Husband and wife medical team who have dealt with this in their own family. Amazon.com: Thyroid Power: Ten Steps to Total Health:... Last edited by bfuser; 06-24-2009 at 06:36 AM..

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06-24-2009, 04:45 AM	#2
inatic Way too much time on my hands! Join Date: Jul 2002 Location: Alpharetta,Ga. Posts: 13,796 Gallery: inatic Stats: 182/135 5'4 47!yo 16/4 5 kidlets later! WOE: Coach Supervised Start Date: LowER C since 2/02 wt training 10/15/02	Stop the Thyroid Madness - The truth about thyroid and thyroid treatment is great for educating on labs, testing etc. I honestly dont know what to suggest for a child though Pam might have some advice there.

06-24-2009, 09:16 AM	#4
dcart Junior LCF Member Join Date: Jun 2009 Posts: 3 Gallery: dcart	Thank you for the responses. I know all about the "educate doctors" thing. I was told my daughter was an antisocial brat and it was my fault for being a stay home mom and I needed to put her into daycare to get her socialized. This was when she was 3. When she turned 8 and threw a screaming tantrum because she couldn't do her work because the paper "felt" funny. I decided there HAD to be more going on then my kid was a "brat". I started researching and found SID - and the minute I read about it I KNEW Maddie had it. I found the doctor to diagnose it and had my doctor give me a referral. Same thing with the TS. When Maddie's tics changed from sniffing and doing a bunny nose -(we were told these were allergies and medicated her for them for years ) to a head jerk and an eye roll I found a pediatric neurologist that took kids with TS. In my state they make kids with TS go to a psychologist - this makes ME crazy. It's a neurological disorder - NOT a psychological one and yet the only pediatric neurologists in my state - there are only 2 - will not treat patients with TS and refer them onto a psychologist. I have read that thyroid disorder can make people do crazy things when the thyroid levels are off but no one would expect my to take my child to a psychologist to fix her thyroid so why do they expect me to take her to one when the chemicals in her brain are off and causing her brain to misfire??? It is a medical condition that isn't going to go away by talking about it. grrrrrrr. Sorry for the rant - but I have had my fill of stupid doctors, and is why I am educating myself now. Our family doctor we have now is great. She says "I don't know" and finds us someone that does. She takes her daughter to see the PE we are going to see and says that she is really good. I don't know why her daughter sees a PE but I do know she had a heart transplant when she was a baby. So I am hopeful that she is good, however I do realize that kids with thyroid trouble are not the norm and this doctor may have more experience treating things like juvenile diabetes, so I want to be on top of the situation from the beginning. I no longer sit quietly in the passengers seat and let the doctors take me for a ride. I also should add that I have Crohn's Disease and my family doctor said that she that Maddie's thyroid condition is probably going to be autoimmune related, it is highly likely when seeing kids with thyroid problems and my own autoimmune disorder increases that chance.

06-24-2009, 10:28 PM	#5
dcart Junior LCF Member Join Date: Jun 2009 Posts: 3 Gallery: dcart	Stop the thyroid madness seems to have mostly information on hypothyroid. My daughter is very tall, very thin, high energy.... I think if she has a problem it will be more hyper then hypo, although I want to learn about both. I read it can go back and forth a bit with the meds. Also I guess it could be possible that her TS could counter act some hypo symptoms. Under recommended lab work - are those the tests I would want done? Recommended Labwork \| Stop The Thyroid Madness Would they be the same for a child as an adult? The same for hypo as haper? Is the antibody test the same for graves as it is for Hashi’s? With a goiter should I also ask for an ultrasound or is that only if there are nodules present?

06-25-2009, 09:22 AM	#6
Leo41 MAJOR LCF POSTER! Join Date: Nov 2007 Posts: 2,358 Gallery: Leo41	I can only respond to your very last question. Some years ago, when I developed a goiter, the first thing my primary doctor did was order an ultrasound. He told me later that he'd feared thyroid cancer, and the ultrasound was to check. From the ultrasound, several small nodules were discovered. I think the ultrasound has to be used to discover nodules UNLESS they are very, very large. I only have one that is large enough to be biopsied, and they had to use ultrasound to locate it for the fine-needle aspiration--i.e., it is too small to be felt even by an experienced doctor. So, yes, I think that with a goiter, you should expect the doctor to order and ultrasound and if he/she doesn't, I'd ask why not.