Hello! My little girl was in the ER last week due to chest pain and tachycardia. They ruled out any immediate danger with her heart (she sees a pediatric cardio in January to do more tests) but in the process they did a series of blood tests and everything came back normal except her TSH was "high" ... it was 5.26 I believe. Her pediatrician wasn't too concerned, saying that 5 was the upper limit of the range so she was barely outside of normal. They are testing other thyroid things too -- sorry for my lack of lingo and spelling here -- T3 and T4 and also they are testing for antibodies (i.e., Hashimotos). She already has been diagnosed with one autoimmune disease (we confirmed her celiac disease a year ago with a biopsy) so they said that she could be at risk for another autoimmune disease. We should get the blood test results back next week.
They said that the thyroid thing is likely not the cause of her heart issues too because a high TSH *shoudn't* make her heart race like a low TSH would. Her EKG today showed a PVC which I think may have prompted them moving her cardio appointment up. So this may be an incidental finding.
Do you agree that her TSH level is not concerning? Any other thoughts?
Update 1/3/11 -- talked to a nurse today, finally, about the lab results. I don't have any numbers yet (I have to go out to the pediatrician's tomorrow and fill out a form for a printout). The nurse I spoke to said her T3 was low but everything else had come back in range, and then she spoke to the doc and said that he said that everything was "normal." So I asked for a referral to a pediatric endocrinologist. I'll go out tomorrow and get the data but what does a high TSH + low T3 equal? She didn't say if it was the free T3 or what. I'm not sure if they think I'm being silly about all this but at this point I don't care.
Will update tomorrow with the numbers hopefully.
Update 1/4/11 -- Ok, here are the results. I'm more confused than ever ... reference range in parentheses.
Her TSH is concerning, that is too high. The American Academy of Endocrinologists says that any TSH over 3 should be treated - 5.26 in an 8-year old is definitely a problem. If her pediatrician doesn't take you seriously, try taking her to a more holistic doctor or an endocrinologist. Make sure you ask for a copy of her T3, T4 and antibodies. Also, do you know if they tested her free T3 and free T4, or total? Because the "free" numbers give you much more information than the total numbers do. Good luck!
Thank you so much ladies for the support. I am pretty sure we can self refer to specialists so I may take her to an endo at a children's hospital in Kansas City (that's where her cardiologist will be). I think they are testing free T4 and total T3?
Our local pediatricians are decent but I've been parenting for 15 years and quickly found out if we want real answers we go to the children's hosptial in KC.
So do you feel the autoimmune disease is likely given she already has celiac disease (I recently read that there may be a connection), or are there other common causes?
I was also talking to my husband and we are a little worried. The celiac disease, while upsetting to find out about, is no big deal health-wise as we had to change her diet and no medication to worry about. I don't know what the treatment for Hashimoto's is but it sounds a little more complicated. We just concerned that other autoimmune diseases may be in her future as well, really painful ones or others that are hard to deal with or shorten her life. :\
The treatment for Hash's is actually pretty simple. Just a pill a day. Unfortunately, the hard part will be getting the dosage right and the multiple blood tests your daughter will have to endure to accomplish this and then to monitor her thereafter.
Good Luck and keep us posted on how she's doing. What a harrowing experience you must have had.
Yes it's true you can have more than one auto immune issue, but usually not more than two. Hashi's and celiac are related, at least gluten intolerance or sensitivity. My daughter has celiac (31 with very mild symptoms and mild small intestinal damage) I have Graves disease and Hashi's (I carry antibodies for both, stress can bring these issues out) I didn't have problems till I was in my forties and early fifties. I was under a lot of stress at the time. Her tsh IS too high. Most normal people have a tsh of 1 or 2 or even less. If it's Hashi's she will probably need Synthroid but that is no biggie. There are plenty of people without a thyroid and take that pill everyday and are fine if managed right. You need a good doctor. I would think a pediatric endo. PVC's are a common thing when you're hypothroid.
Update 1/3/11 -- talked to a nurse today, finally, about the lab results. I don't have any numbers yet (I have to go out to the pediatrician's tomorrow and fill out a form for a printout). The nurse I spoke to said her T3 was low but everything else had come back in range, when then she spoke to the doc who said that everything was "normal." So I asked for a referral to a pediatric endocrinologist. I'll go out tomorrow and get the data but what does a slightly high TSH + slightly low T3 equal? She didn't say if it was the free T3 or what. I'm not sure if they think I'm being silly about all this but at this point I don't care.
Wow. I can't believe you are being brushed off like this. A low T3 (free or not) is not "normal" especially when her TSH is high. I'm glad you are getting a referral since you are getting no where with this doctor. Please post your results when you get them.
I wouldn't drop it until there's no where else to take it. You may not get anywhere with a ped endo, either, but you won't know until you try. If in your heart you believe this could be a thyroid problem, don't quit until you're convinced it isn't.
Here's an example of why you should take this approach: My sis-in-law's fourth newborn's eyes teared constantly. Her ped kept telling her it was no big deal, blocked tear duct, yada yada, kept giving her salves and drops that didn't help one iota. SIL knew in her gut it wasn't normal, so she sought out a ped opthalmologist who diagnosed the baby with congenital glaucoma. She would have gone blind had SIL just taken the ped's word for it and not followed her instinct.
TSH varies according to time of day, up to 3 full points in some people. It begins its upward spiral around 9 p.m. and will generally be highest at dawn. Then it gradually falls during the daylight hours until it reaches its lowest point in late evening. Was the lower test done with a blood draw taken in the afternoon? If you need to do bloodwork again, try to get the draw done as early in the a.m. as possible. Timing has gotten some people a diagnosis after they had been denied one after lower results with later draws.
Most telling is her FT3 below range. That is never "normal"... Don't let anyone tell you it is. If you are told it's nothing to worry about, demand a better answer. Ask, "Why then are 'normal' reference ranges assigned such importance if a below-range result can ever be considered 'normal'?"
I would say it's Hashi's which causes rises and falls in the tsh quite a bit. Also the t-3 is usually low. I don't know how they treat a child with it though. Can I ask you, is your child over or under weight? My daughter's husband's niece is over weight, even though she moves around a lot. She also has upset stomach after she eats or feels nauseous. My daughter and I suspect Celiac(her Mom has Hashi's) she fits it except she is over weight .
She is actually quite thin, 52 pounds at 8 years old, she has been confirmed with celiac disease (ttg iga was 120+ and positive biopsy last December) and has always been on the thin side. Her thyroid antibodies are in the normal range though so who knows.
On the celiac thing, it's similar to what midwest was talking about -- she suffered with stomach pain for about a year (the school nurse would call me nearly every day saying 'your daughter has a stomach ache AGAIN,' first they said lactose intolerance, and when taking that away didn't help I had to keep bringing her back. I had no idea or clue about celiac at that time but the doc said we'd test for that 'just in case' even though he didn't think she had it. One part of the test came back slightly out of range and they referred us to a pediatric GI who also said she didn't think she had it but they reran the tests. Like I said above her ttg iga was through the roof -- below 20 is normal and of course the biopsy confirmed it.
At that time I was going along with the flow and thankfully they did find it but this time I'd like to check it out and at least rule everything out if need be. I assume they would want to rerun her tests too.
I just don't want her to fall through the cracks this time ...
It just could be she won't develop any thyroid symptoms until she's older. I have read though if you get the celiac treated it won't lead to thyroid problems. Maybe she'll be okay but I would see what the ped. endo says.