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Anyone have a child with low thyroid? Help, please


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My ten year old son has low thyroid, according to two consecutive tests showing a high TSH (six point something...)

 

Should I take him to a pediatric endocrinologist, or some other kind of doctor?

 

Also, I take natural thyroid meds, and I'm wondering if dessicated thyroid (as opposed to levothyroxine) is ever prescribed for children.

 

Do children ever outgrow this, or will this most certainly be permanent?

 

Any insight about your child's journey with hypothyroidism would be helpful. Symptoms, improvements, long-term effects, etc... I'm a little alarmed that he's manifesting this so young

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My dd was DXed with low thyroid at age 12-- her sypmtoms started a few years BEFORE that though (Grrrrr to the Drs that did not worry enough to tell be about her high numbers!!!!!).

 

She does well on the natural stuff-- the synthetic stuff had too many side effects. I don't worry one bit about the 'dessicated' natural thyroid. It works!

 

In most cases this is a permanent situation. At least medical Drs will tell you this.

 

There are very few 'known' causes for low thyroid-- so the symptoms are treated-- and parents are left to wonder what is really going on inside their child's body.

 

He will need to be tested every few months while he is growing... growth spurts really messed my dd up!

 

Our pediatric endocrinologist was NO HELP== our Primary Cary Dr keeps better tabs on DD.

 

My sister as Hashimotos (thyroid disease) and has recently used eastern medicine to possibly cure her-- she has been off her thyroid support for 6 weeks now and is doing great---- before if she missed ONE DAY she was ill... so this is VERY promising! If my sister can stay off of her thyroid supplements for good then we will try this alternative therapy for DD.... insurance does not cover it and some of the practitioners of this system are a little flaky! She uses a system of eastern medicine known as 'NAET'

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I was diagnosed at age 11. It runs in the family, so it was something my mother had the doctor look for. I was put on levothyroxine, which I've taken ever since. I respond well to it and it's inexpensive so I've never seen the need to seek alternatives. After I was started on the meds I shot up 6 inches in 11 months, a possibly-overdue growth spurt accompanied by puberty kicking in. Being a bit younger and a boy, the near-term effects may not be as dramatic for your son, but that also might depend on how long his growth has been delayed by low thyroid (until puberty hormones really kick in, thyroid is one of the big determinants in growth)

 

I've never seen the point of poo-pooing levothyroxine so much. For most people with low thyroid, it corrects the problem quite effectively. I can understand going for alternatives if it doesn't work for some reason, but it's at least a good starting point for treatment.

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Pediatric endocrinologist!

 

My 6 yo was just tested and has a tsh of 617! The highest her doctors had ever seen. We go to Riley's and they are just great. You really want a specialist. For instance, our ped. is really great but jumped her synthroid up too fast. You really want to pace it for several reasons. It will likely be lifelong, but our ped endo is looking into associated autoimmune issues she may have alongside it, like Celiac's. You really want to research into why the autoimmune system acted like it did. A whole slew of blood tests, bone x-rays, etc. should be in order. Good luck!

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My dd9 was diagnosed this past October with Hashimoto's and has hyperthyroidism as a result. She takes an extremely low does of Synthroid, not the generic, and has responded very well. Within the first 6 weeks, her TSH dropped into the lower range of normal. I will say that at first if she missed a dose, she would be cranky the next day, but doesn't have any issues if she happens to miss a dose here or there. We took her to a pediatric endocrinologist. She is incredibly thorough. Our pediatrician was not very comfortable treating this.

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Pediatric endocrinologist!

 

My 6 yo was just tested and has a tsh of 617! The highest her doctors had ever seen. We go to Riley's and they are just great. You really want a specialist. For instance, our ped. is really great but jumped her synthroid up too fast. You really want to pace it for several reasons. It will likely be lifelong, but our ped endo is looking into associated autoimmune issues she may have alongside it, like Celiac's. You really want to research into why the autoimmune system acted like it did. A whole slew of blood tests, bone x-rays, etc. should be in order. Good luck!

 

What is Riley's?

Both my parents were diagnosed with low thyroid at age 37-38. I was just diagnosed at 37, and now my son has it. I'm hoping it's just run-of-the-mill low-thyroid rather than a more involved autoimmune issue!

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Hypothyroidism is an autoimmune disorder unless it is congenital-which it obviously isn't for your son. It's very often genetic. Many times it comes hand in hand with other autoimmune issues.

 

http://thyroid.about.com/cs/latestresearch/a/celiac.htm

://www.cincinnatichildrens.org/health/info/teen/diagnose/hypothyroidism.htm

http://emedicine.medscape.com/article/922777-overview

http://www.nejm.org/doi/full/10.1056/NEJM198803103181003

 

Riley's is the Indianapolis children's hospital. ;)

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Oh yeah, pseudotumor cerebri is the side effect of rapid correction of hypothyroidism (basically a headache and too fast bone growth which leads to lower overall growth). Since your son's isn't super high and likely won't start too high, it should not be a big risk, but it is a good reason to bump up synthroid in smaller increments.

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Thanks to everyone for their input. I'm in the midst of scheduling a visit to a group of pediatric endocrinologists. My pediatrician is faxing them the paperwork, and they'll call me with an appt. soon, I hope.

 

When the receptionist asked which Dr. I wanted to see, I asked her if there was one who was more friendly to natural thryoid treatment when appropriate. She said, "Yes, definitely." She has a child with low thyroid who sees that particular Dr. and thought it would be a perfect fit. I was glad to hear there was a Dr. in that practice that would at least consider dessicated thyroid if it's needed.

 

Lisa Darwin

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I missed this the first time.

 

My son take synthroid and I take armor thyroid. There was a problem getting it for a while and I had to go to a special compounding pharmacy. It seems like the situation is resolved b/c now I have pills again instead of capsules.

 

I hope everything works out for your DS!

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Yes, I know Armour was having some trouble for a while w/gov't regulations. I am taking Westhroid, which is identical to Naturethroid. For a while, most pharmacies were completely out of both of these, but I found one in Arizona that had stocked large quantities prior to the shortage.

 

I want whatever is best for my son, and am willing to hear a Drs opinion about synthroid vs. dessicated thyroid. I just want someone who doesn't rule it out from the get-go.

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My son has been complaining for a long time about his muscles and joints feeling "tight". I posted quite a while back about it and called it "compulsive stretching." I have an older son who at one time had some strange habits with facial muscles (mouth, nose, and eyes) but he outgrew them. I thought my younger son was just being obsessive about some bad habits, mainly squeezing and stretching his feet and hands. Then he said it was spreading to his neck, shoulders, etc... basically all over his body. 2 different pediatricians wrote it off, but on the last visit, I told the Dr. that my son was now coming to me in tears saying he couldn't stand this "tightness" any more. (It wasn't painful, just "tight.") The Dr. ran some bloodwork and discovered a TSH of six point something. My son was also Vitamin D deficient. He told him to start drinking more milk (for the Vitamin D) and come back in 2 weeks to have the thyroid and D retested. I did so, and both were even worse. The TSH had jumped to 8 point something, and the Vitamin D had dropped, even though my son had been faithfully drinking his milk. And that's all I know right now. Oh...I do know that it's not Hashimoto's. His antibodies were all fine. Hopefully I'll learn more soon when we get an appt. with the endocrinologist.

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I was diagnosed at age 11. It runs in the family, so it was something my mother had the doctor look for. I was put on levothyroxine, which I've taken ever since. I respond well to it and it's inexpensive so I've never seen the need to seek alternatives. After I was started on the meds I shot up 6 inches in 11 months, a possibly-overdue growth spurt accompanied by puberty kicking in. Being a bit younger and a boy, the near-term effects may not be as dramatic for your son, but that also might depend on how long his growth has been delayed by low thyroid (until puberty hormones really kick in, thyroid is one of the big determinants in growth)

 

I've never seen the point of poo-pooing levothyroxine so much. For most people with low thyroid, it corrects the problem quite effectively. I can understand going for alternatives if it doesn't work for some reason, but it's at least a good starting point for treatment.

 

It runs in my family too, I wasn't dx'ed til my 30's but the kids get baselines and ultrasounds every year now. My older one is borderline at 14 so we do keep a close eye on her. Levothyroxine works for me as well. I can't afford alternative Dr.'s or therapies anyway. I have Hashimotos. We recently upped my dosage, I felt choked when reading to the kids so I knew I was in trouble. My older one also had some other autoimmunes that we are aware of and treat as well.

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How did you know this was an issue?

This is something I always keep on alert for because of our soy consumption.

 

Thanks,

Rebecca

 

Rebecca,

 

My son was constantly sick. His last illness, he collapsed at home. He was so weak.

 

The doctor ordered a bunch of tests, and just threw the thyroid in there. That's what it was.

 

ETA: I should qualify: He went from maybe getting a cold once a year to being constantly sick for about 6 months.

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My youngest daughter was diagnosed with congenital hypothyroidism about a week after her birth. Her numbers were very bad, and the pediatric endocrinologist concluded that she was either born without a thyroid or with a completely nonfunctional one. She started out going to the nearest children's hospital (a few hours away) every month but now that she's four, she just goes every six months. Our pediatric endocrinologist there is wonderful--very attentive and on the ball, and much better equipped to handle R's condition than any local doctors we have seen.

 

This was initially very scary for us, because the thyroid hormone is so essential for growth and development, particularly in the first years of life. R's endocrinologist told us about one case she'd seen where a boy with congenital hypothyroidism didn't receive treatment until age 12, and he only learned two words and reached the stature of an 18-month-old. But with one simple daily medication, normal growth and development are easily achieved. It's really amazing. R is 4 years old now, and her physical and mental development have been completely normal. Her doctor comments every time on how advanced she is. (At our last visit, shortly before her 4th birthday, she'd already begun to read.) We had a big party for her 3rd birthday, because that was the magic age where the thyroid hormone stopped being so essential for mental development. It's still very important for physical growth, and we feel so lucky that the medication that enables this for her is so inexpensive and readily available. (She takes levoxyl, and we've never wanted to change it, since we were told it's better to stick with the same one.)

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My 6 yo had not really grown since age 3. She was pale and very sallow, tiny, very hairy with rough skin, NO energy, constantly breaking down in tears, no appetite, vomiting often, daily stomach pain. We thought it was food allergies but after seeing several docs who brushed off our concerns, our new doc listened and ordered a barrage of bloodwork and a bone growth x-ray.

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  • 1 year later...
  • 2 years later...
Guest KingsleyA

I have a 13 year old son with Hashimoto's.  He was diagnosed 2 years ago and has been on Levothyroxine.  His numbers are now normal but he still has a problem with weight gain, while being very active in sports and eating well. He's still overweight and gains.

 

I'm interested in putting him on Armor, but his Endo won't prescribe it... saying it's not known if it's safe for children.  I do have a naturopath who will prescribe.

 

I'm hoping to learn more here.  Looks like people do have children on it and have no problems.

 

Also, any other feedback or similar situations is greatly appreciated.

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