hypothyroid for toddler

Hey everyone,

I am new here and was wondering if someone can give me some information. Let me give you some background.  I have a 2 1/2 year old boy.  He is going through some health issues that no one seems to know what it is.  He is failure to thrive, not growing or gaining well (I read this is common in hypo for this age).  He has coarse hair, and is cold a lot (for example we were at a store and his teeth were chattering).  He was put in the hospital for RSV when he was 9 months old and they discovered he had a swallow dysfunction (I read this too is a symptom) and the doctor wrote that he had abnormally large fontanels ( another symptom I found),  he is developmentally delayed (i.e. he didn't walk til almost 2, doesn't speak many words, I was told he had low muscle tone).  He has been having high blood sugars but they spike high then come down really quickly (the blood sugars are in the high 200's with some 300's and a couple over 400 but he also has low blood sugars in the 40's.  He had a seizure not long ago we expect may have been a low blood sugar but have no proof.

He had a thyroid test when he was in for the RSV at 9 months and the free t4 was 0.69 (range 0.65-2.0) and the TSH was 3.61 (range 0.6-7.1).  Is this normal?

He was admitted to the hospital last week for observation and they did a lot of blood work on him.  They followed him for type 1 diabetes and they did a check on growth hormone and redid the thyroid test.  I'm not sure what all the values are but the endo called us saturday and said the free t4 was only 1 point above the low end of normal.  He said he would like to follow him and maybe start him on growth hormone in about a year.  They did a oral glucose tolerance test and it came back abnormal but not diagnostic of diabetes.  He has so many symptoms of hypothyroid and I read the values changed which would have made his levels abnormal at 9 months old.  Is this correct because the pediatric endo isn't using these values.  I don't think it is wise to wait another year.  

I read that hypothyroid can cause low blood sugars.  He had a sugar in the 40's at home and was lethargic.  I also wonder if the hypo could possibly keep diabetes in check so to speak because it tends to lower sugar.  What if we fix they thyroid and his sugars stay high.  I would appreciate any help here.  If you know of any suggestions on what to tell the doctor I would really appreciate it.

Stacy

[laura1967]

I think it is time to get a second opinion. I agree that it sounds like the thyroid is involved here.
When my levels are off I get hypoglycemia as well.
The endo should be looking at the Free T3 and Free T4 more than the TSH. TSH is a pituitary function test. The Free's are the actual active thyroid hormone in the body.
Free T4 converts to Free t3 which is the most active thyroid hormone in the body.
Being 1 point above the low normal range of Free T4 says that something is wrong!
(IN my opinion of course)
Keep a close eye on his diabetes as well.  Did you know that most endo's specialize in diabetes and not thyroid disease? They learn it in school, but don't specialize in thyroid in a lot of cases.
Keep reading and learning all you can......keep seeking. Don't give up!  :)

[gimel]

I agree with what Laura said, and I just wanted to throw in my opinion about the usefulness of TSH.  As Laura mentioned, TSH is a pituitary hormone that is affected by many variables.  Although used by most doctors as a diagnostic to determine thyroid state and meds, at best it should be used as an indicator, to be considered along with the more important indicators, which are symptoms and levels of the actual biologically active thyroid hormones, which are FT3 and FT4.   FT3 is the most important because it is four times as potent as FT4.  Doctors don't normally test for FT3 because they assume that T4 is converting adequately to T3, so that testing is not necessary.  Inview of its importance, why not tests and be sure?

In addition, just having a FT4 test result barely within the lower range limit is usually inadequate because the ranges are far too broad.  The ranges for FT3 and FT4 have never been adjusted (like was done for TSH 6 years ago), to exclude suspect hypo and hyper patients.  As a result, many patients with FT3 and FT4 levels in the low end of their ranges report continuing hypo symptoms.  Many hypo patients report that they feel best when their FT3 and FT4 levels are in the upper half of their ranges.  

I think you will find this article to be worthwhile reading.
http://www.hormonerestoration.com/Thyroid.html

If your doctor is willing to discuss this type information with you and treat your son by testing and adjusting FT3 and FT4 with meds, as required to alleviate symptoms, that is the best approach.  If not, or if the doctor believes TSH is the "gold standard" in testing and treating hypothyroidism, then you will have to start looking for a good thyroid doctor.

[TamraW]

I suspect thyroid as well. If you live in the US, here's a site with recommended thyroid doctors state-by-state: http://www.thyroid-info.com/topdrs/

I do not know if TSH and FT4 levels are different in children, but I DO know that I have Hashimoto's (hypothyroid) disease and his levels are worse than mine. My TSH was only 2.74 and my FT4 dropped to 0.8. I DEMANDED the antibody tests for Hashimoto's (TGAb and Anti-TPO). That is how we discovered my Hashi, and that my first two endos, WHOM I FIRED, were IDIOTS when they laughed at my TSH.

New studies indicate that ANY TSH above 2.0 is indicates hypothyroid if the patient exhibits hypo symptoms. Your son has hypo symptoms. Once again, I do not know the ranges for toddlers, but doctors should be pursuing more thyroid examination, IMHO.

Rarely, some children are born with missing thyroid lobes or entire thyroids missing. Has he had an ultrasound?

Take action! Get mad when doctors don't produce results or when they laugh and shake their heads! Demand he be tested and treated! You are your child's biggest advocate! He deserves a healthy life! Fight, fight, fight!

:) Tamra

[Julie74601]

Thanks for the help.  I feel like I am fighting an uphill battle.  He has a MRI for the seizure and I called the endo to see if he wanted to have them look at the thyroid.  I was put on hold for 45 minutes and finally I had to hang up to go pick up the kids from school.  This whole thing has been a nightmare.  He tested positive for the type 1 antibodies and then they retested for them and the said they were only 5 which is normal according to them but they wrote on his discharge sheet that his diagnosis was positive antibodies.  I'm not sure what all they did on the thyroid.  They "accidently" discharged him before following all the doctor's orders so I had to fight to get those done.  They were able to call the lab and supposedly pulled it out of some of his test tubes of blood.  I hope they did antibodies but I don't know.  I have the MRI on Thursday so I will pick up his records then.  I don't think I could possibly be anymore frustrated.  

Stacy  

[TamraW]

He has positive antibodies? I am not sure what type 1 antibodies mean. Make sure you ask for the TGab and Anti-TPO. Those are thyroid antibody tests.

Poor baby! My little one hated being poked at that age.

Poor mommy! I'd rather be the sick one than watch my kiddo suffer.

If he has Hashimoto's, remember that auto-immune diseases can run in the family. It would be a good idea to get the family checked.

Take care...
:) Tamra

[magpieannie]

Hello, Thought you'd like to know that my daughter was born without a thyroid gland. She is now nine and doing well. Your son's symptoms most definetely sound like ones of untreated hypothyroidism.Your doctor should also do a radioactive iodine uptake scan as well as an ultrasound to see the gland. You must insist on the freet3 and freet4 blood test as well as the antibodies. Time really is of the essence here. Proper brain and body development depend on the proper amount of thyroid hormone available in his body. If your doctor won't do these test, then find one who will! Trust your instincts and move ahead on this quickly. God Bless!

[Julie74601]

he was positive for type 1 diabetes antibodies and then they ran the test again and said it was normal at a 5.  I read many places it doesn't matter the number but the fact they are present.  Who knows.  I told my mom that unless they ran the test again I wouldn't feel comfortable with the results because we had one really high number and one low number.  To me that is kind of like being on a diet and picking the number you like best on the scale.  However, I am done with all the blood work for awhile.  I say that and he has that MRI on thursday and I think they put him under for that.  I hope they did the antibodies for the thyroid.  This whole thing is making me paranoid.  I think I have thyroid issues too now.  I have dry brittle hair and I lose many strands every time I brush.  I am exhausted most of the time, cold-natured, I have high cholesterol, started B/P medicine recently, my hands and feet feel asleep a lot of the time, I feel sick to my stomach a lot (not sure if that is a thyroid thing though), I feel hypoglycemic a lot but the funny thing about that is that I had gestational diabetes with almost all of my pregnancies and before my last baby I was diagnosed with pre-diabetes and I had diabetes really bad with my last baby which required insulin and then when I went back to my primary doctor after the baby was born she did a fasting and said I was fine.  To tell you the truth I wasn't taking care of myself any better so I was surprised.  Anyways, I feel hypoglycemic a lot but when I take my blood sugar it will be fine.  I have gained weight and have been trying to lose but it isn't going away easy at all even with the breastfeeding which is suppose to help with losing weight.  Anyways, not sure if I am just paranoid or not.  After all I have a large family of 6 kiddos which could account for me being tired.  
The doctor told my husband that he would like to evaluate my son for a year and if he still doesn't grow then he would like to put him on growth hormone.  If his thyroid is out of whack wouldn't fixing that problem help him grow without growth hormone?  I am not impressed with this place at all.  I was really upset with the hospital.  The secretary on the floor he was on said she would watch him while I went and put the stuff in the car and when I came back he was gone.  I asked the nurse where he was and he said the secretary took him downstairs in the front to wait on me.  I asked why and he said I was discharged and could leave.  I told the nurse the doctor said he was to eat lunch first due to the fact that he was coming off a 24 hour fasting test and he wanted to make sure his blood sugar was good before he left (it had been a 47).  He told me it was ok I could go and get lunch on the way home.  I could leave.  I was appalled that my son was downstairs in the front of the hospital with someone he didn't know.  He had no hospital bands on him because they had cut them off the night before for an IV site and never returned them so if he had gotten a way from the secretary no one would have been able to identify him.  I also found out his discharging blood sugar I finally got the nurse to take was 225 after eating one individual sized box of Trix because that is all I had to give him.  He didn't feel it necessary to notify the doctor about that.  

I truly hope that it may be a thyroid problem because even though I'm not sure it would be that easy to deal with it is bound to be easier than type 1 diabetes.  I hope that if I can get the doctor to treat for the thyroid that we might see his blood sugars normalize.  His sugars spike high (fairly high) usually in the 200's but we have seen over 300's but they don't stay high for long.  If I understand it right the thyroid brings the sugar down quickly.  Is that how it works?  I would be so thankful to see that happen.  I worry if they fix it though will that mean the sugars will stay high?  I know these are questions that you probably can't answer.  However, I know either way it can't go unfixed.  I know we wouldn't see results from the treatment right away but I hope we would see him start growing eventually and keeping weight on and so on.  He is a great eater now (didn't use to be) and doesn't gain an ounce unless he drinks at least 2 pediasures a day.  I asked the doctors about why he needs the pediasures and they only say keep giving it to him if it makes him gain but never an answer as to why he needs them.  

Sorry this is so long.  Just needed to vent I guess.

Stacy

[Julie74601]

Thanks for that interesting article.  I think it has convinced me more than ever that he has this problem.  I don't know what his free t3 is.  I'm not sure if they even did that test.  I don't know if they did the antibody test either.  He has a MRI on thursday and I plan on getting his medical records for his stay in the hospital earlier this month.  They ran a whole bunch of test.  I am learning to get medical records for everything done on him.  I am not being duped into thinking just because they say it is normal it must be true.  I was surprised at what I learned when I, his mother, put his labs side by side and read the doctor's notes on him.  I found the abnormally large fontanels thing from his stay at the hospital when he was 9 months which is a symptom.  I think the doctor (different one) suspected thyroid because they ran the test but it fell in the "normal" range so they ruled it out.  I also found out that my mother-in-law has thyroid problems, which she doesn't treat I might add, so it runs on my husband's side of the family.  After reading all of these symptoms I'm going to have my doctor test me too because I have a lot of the symptoms also including high cholesterol, high B/P, ect.  I hope I can get to the bottom of this soon.

[Julie74601]

Thanks for the top doctors website.  This may seem to be a silly question but can he go to a endocrinologist or does he need to go to a pediatric one since he is so young?  

[TamraW]

A good endo should know how to treat him. I got my doc off that list. First, I called his office and spoke to his nurse. She said 75 percent of his patients have thyroid disease. That's how I knew I had found the right doctor. If most of the endo's patients have diabetes, then they may not know as much about treating thyroid. That has been my experience with four other endos.

:) Tamra

[magpieannie]

I'd use a pediatric endochronologist since he is so young. I posted you back with the name of my daughter's former one who we used for 8 years in Dallas. She is a good doctor, but we just couldn't see eye to eye on the freet3 subject. If there is a problem with your son she will identify it, and that is very important right now. She can usually see new patients quickly as her office closes at 1:00 on Wednesday to be able to do this then. Just let the nurse know it is urgent. She will not usually test the freet3, but she test ever thing else. She uses Synthroid  for thyroid issues and also treats for growth hormone issues and diabetes.

[magpieannie]

The Pediatric endos. name is Dr. Elen Sher at Medical City Dallas

[Julie74601]

I am soooo mad right now I could just cry.  I just got a call from the nurse of the endo.  My son is scheduled to have a MRI tomorrow ordered by another doctor for the seizure he had.  I called the endo office to see if they would like to have his thyroid looked at since he would already be there tomorrow anyway.  The doctor said he did not want it done.  However, Sawyer did not have a free t4 done while he was in the hospital for 3 days for observation.  I was told he did have it done.  He told my husband that it was low end of normal.  I did call my pediatrician and asked to have him referred to the endo group in Dallas which she did do.  He also told my husband that the antibodies test for type 1 diabetes came back normal but on his discharge sheet it was written that the anti-GAD test was abnormal.  I feel like I'm getting the run around.  I am so angry.

[TamraW]

You have every right to be mad! Unfortunately, we live in a state with high diabetes, so many endos specialize in diabetes, and they're CLUELESS about thyroid. Have I given you this site yet? It lists recommended thyroid docs. Dallas has a lot.

:) Tamra

http://www.thyroid-info.com/topdrs/

:) Tamra

[Julie74601]

Sawyer has his MRI done tomorrow.  I talked with his pediatrician about my concerns about the run around we've been getting.  She ordered a TSH, Free t3, free t4, thyroid antibodies, and a couple of other thyroid things.  I did call the nurse at the endo office and she gave me the values of some of the things he had done.

TSH-1.59
Total t3-154
Reverse t3-378

I'm not exactly sure what all this means but she also referred me over to Children's in Dallas and their office called me today and is getting me in Friday.

Stacy

[magpieannie]

Good job Julie! You keep fighten for that sweet baby! I'll be praying that the doctors and nurses at Children's will have have open ears, hearts and minds and that they will leave no stone unturned! Please let us know the other results and the reference ranges from your pediatrician when you get a copy of the results!

Psalm 121:1-8
"Look up, your help comes from Me, the Maker of heaven and earth. I will not let your foot slip; I watch over you day and night...I will keep you from harm...both now and forevermore."

[magpieannie]

How's Sawyer doing?