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cmc811

Pediatric Tsh Values

By cmc811, in Parents, Friends and Loved Ones of Celiacs

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cmc811    2

cmc811
Posted

Does anyone know much about optimal ranges for TSH in a 5 yr old? I know there is a lot of controversy in terms of adult TSH values and I'm finding all kinds of ranges on the internet.

 

My son had TSH checked at 22 months and it was 2.91. Range for that lab was 0.40-4.00.

TSH done earlier this week at age 5.75 years was 4.7. Range was listed as 0.70-5.97.

 

Does that seem high? Is it normal to have jumped that much? I though TSH went down as you got older, not up. He has GI symptoms but one of his other symptoms is being tired all the time so I'm just wondering....

Misty

 

Myself: tTg-IgA was 7 (>4 positive), normal total IgA, Unspecified anemia, low magnesium, really low Vitamin D, normal thyroid with no antibodies, slightly positive ANA (1:40 speckled) but confirmation panel all negative, so no explanation. No other celiac tests ordered, Endoscopy appeared normal, Biopsy showed increased lymphocytes - Marsh I. She called biopsy "equivocal" but diagnosed Celiac anyway based on high specificity of tTg test.

Son (born in 2008): Alopecia Areata, Chronic constipation, vague abdominal pain, waves of nausea that have been occurring for months with no other cause identified,always tired even though he sleeps 10+ hours per night. Behavior change. Jekyll and Hyde type tantrums that are triggered by the silliest things. Totally uncharacteristic for him. Mild asthma, ezcema, wierd skin rashes that don't appear to be DH. Slow weight gain, normal height. His weight for age percentile is dropping but slowly so doesn't concern pediatrician. His BMI, however, has dropped from 33rd percentile to the 5th in 2 years. Low red blood cell count, low-normal hemoglobin/hematocrit - not being called anemia. His number looks just like mine used to and mine have continued to get worse. Normal total Iga, Negative tTg. Result was <1 with >4 being positive. Negative EMA. Negative DGP IgA and IgG. Elevated ESR (value 38. Normal <10).

Son (born in 2011): Enamel issues on baby teeth, Keratosis pilaris, Toenail fungus since birth on both small toes. Normal total IgA, negative tTg (<1).

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StephanieL    74

StephanieL
Posted

I am not aware that there are different reference levels for kids. I would think over the 3-4 Ped Endo's we've been with someone would have mentioned this as well as it being indicated on the results.

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cmc811    2

cmc811
Posted

I'm just wondering if it would be worth having it redone at the 1st lab and see how the value compares. When I asked the GI office the nurse told me it was comparing apples to oranges because labs have different values. Why though? The units of measurement are the same so why is 4 the limit for some and almost 6 for others?

 

So frustrating!

Misty

 

Myself: tTg-IgA was 7 (>4 positive), normal total IgA, Unspecified anemia, low magnesium, really low Vitamin D, normal thyroid with no antibodies, slightly positive ANA (1:40 speckled) but confirmation panel all negative, so no explanation. No other celiac tests ordered, Endoscopy appeared normal, Biopsy showed increased lymphocytes - Marsh I. She called biopsy "equivocal" but diagnosed Celiac anyway based on high specificity of tTg test.

Son (born in 2008): Alopecia Areata, Chronic constipation, vague abdominal pain, waves of nausea that have been occurring for months with no other cause identified,always tired even though he sleeps 10+ hours per night. Behavior change. Jekyll and Hyde type tantrums that are triggered by the silliest things. Totally uncharacteristic for him. Mild asthma, ezcema, wierd skin rashes that don't appear to be DH. Slow weight gain, normal height. His weight for age percentile is dropping but slowly so doesn't concern pediatrician. His BMI, however, has dropped from 33rd percentile to the 5th in 2 years. Low red blood cell count, low-normal hemoglobin/hematocrit - not being called anemia. His number looks just like mine used to and mine have continued to get worse. Normal total Iga, Negative tTg. Result was <1 with >4 being positive. Negative EMA. Negative DGP IgA and IgG. Elevated ESR (value 38. Normal <10).

Son (born in 2011): Enamel issues on baby teeth, Keratosis pilaris, Toenail fungus since birth on both small toes. Normal total IgA, negative tTg (<1).

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Alwayssomething    13

Alwayssomething
Posted

Children's range for TSH are the same as an adult. A good endocrinologist will agree that that number should be 3.0 or less. My son has been on meds since he was 5 and feels best at 2.5. And it was obvious to us as well as the dr' so that is where they keep him ( he will be 17 next week). I was told as well as read on a mayo clinic website at the time he was starting all this that the lab places those ranges based on the last "x" number of tests average. I would ask for a referral to a pediatric endo and ask that they also test TPO, an thyroid test for hoshimotos autoimmune thyroid disease.

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cmc811    2

cmc811
Posted

Why would the lab range be so high? The blood was drawn at a major hospital in the pediatric speciality dept.

Misty

 

Myself: tTg-IgA was 7 (>4 positive), normal total IgA, Unspecified anemia, low magnesium, really low Vitamin D, normal thyroid with no antibodies, slightly positive ANA (1:40 speckled) but confirmation panel all negative, so no explanation. No other celiac tests ordered, Endoscopy appeared normal, Biopsy showed increased lymphocytes - Marsh I. She called biopsy "equivocal" but diagnosed Celiac anyway based on high specificity of tTg test.

Son (born in 2008): Alopecia Areata, Chronic constipation, vague abdominal pain, waves of nausea that have been occurring for months with no other cause identified,always tired even though he sleeps 10+ hours per night. Behavior change. Jekyll and Hyde type tantrums that are triggered by the silliest things. Totally uncharacteristic for him. Mild asthma, ezcema, wierd skin rashes that don't appear to be DH. Slow weight gain, normal height. His weight for age percentile is dropping but slowly so doesn't concern pediatrician. His BMI, however, has dropped from 33rd percentile to the 5th in 2 years. Low red blood cell count, low-normal hemoglobin/hematocrit - not being called anemia. His number looks just like mine used to and mine have continued to get worse. Normal total Iga, Negative tTg. Result was <1 with >4 being positive. Negative EMA. Negative DGP IgA and IgG. Elevated ESR (value 38. Normal <10).

Son (born in 2011): Enamel issues on baby teeth, Keratosis pilaris, Toenail fungus since birth on both small toes. Normal total IgA, negative tTg (<1).

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Alwayssomething    13

Alwayssomething
Posted

The ranges on the lab paperwork should be the same or close to the same from each lab, no matter if it was taken at a hospital or a free standing lab, but they are just a reference point.  I do not express myself well in typed communications, I am better at verbalizing, so bear with me some here.  

What I was really trying to get at is that a Pediatric Thyroid specialist will be the most knowlegeable about how to treat this.  Although you are seeing a Pediatric Specialist currently, if Thyroid issues are not his thing, he/she only has those ranges to rely on.   Speaking from my own personal experience with my son (who also was only 5 when we found his condition) and myself as well as several other family memebers with this condition, the reading I did and the website I was referencing from the my original dr at the Mayo Clinic, Endocronologist usually agree that that a person's number should be less than 3.   My son's is usually in the 2.5 area, and his dr is very happy with that and he feels good at that number, I on the other hand feel best when my number is 1.0 range....  I know your son is young and may not recognize where he feels best, but he will soon and a good dr will listen to you and base everything on symptoms as well.  

Here were my son's symptoms (his TSH tested at 11, sent to a different lab and they were 13) Ezcema, mood swings, always cold, always tired (probably part of his mood swings too) ate very little yet was gaining 10 pounds in a weeks time, emotional, depressed.  

 

Hope that helps, I am also looking for the link I used to the Mayo Clinic website, it was created by the endocronology team there, so it was a coloboration of their experiences and opinions.   I haven't looked at it in years, so as soon as I find it I will repost that as well. 

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cmc811    2

cmc811
Posted

The ranges on the lab paperwork should be the same or close to the same from each lab, no matter if it was taken at a hospital or a free standing lab, but they are just a reference point.  I do not express myself well in typed communications, I am better at verbalizing, so bear with me some here.  

What I was really trying to get at is that a Pediatric Thyroid specialist will be the most knowlegeable about how to treat this.  Although you are seeing a Pediatric Specialist currently, if Thyroid issues are not his thing, he/she only has those ranges to rely on.   Speaking from my own personal experience with my son (who also was only 5 when we found his condition) and myself as well as several other family memebers with this condition, the reading I did and the website I was referencing from the my original dr at the Mayo Clinic, Endocronologist usually agree that that a person's number should be less than 3.   My son's is usually in the 2.5 area, and his dr is very happy with that and he feels good at that number, I on the other hand feel best when my number is 1.0 range....  I know your son is young and may not recognize where he feels best, but he will soon and a good dr will listen to you and base everything on symptoms as well.  

Here were my son's symptoms (his TSH tested at 11, sent to a different lab and they were 13) Ezcema, mood swings, always cold, always tired (probably part of his mood swings too) ate very little yet was gaining 10 pounds in a weeks time, emotional, depressed.  

 

Hope that helps, I am also looking for the link I used to the Mayo Clinic website, it was created by the endocronology team there, so it was a coloboration of their experiences and opinions.   I haven't looked at it in years, so as soon as I find it I will repost that as well. 

 

How you explained it is how I understood it but everyone is saying his numbers are fine so I don't know that I can get a pediatric endo to see him :( He has all the symptoms you listed EXCEPT he isn't gaining weight at all. At almost 6 his is only 39 lbs.

Misty

 

Myself: tTg-IgA was 7 (>4 positive), normal total IgA, Unspecified anemia, low magnesium, really low Vitamin D, normal thyroid with no antibodies, slightly positive ANA (1:40 speckled) but confirmation panel all negative, so no explanation. No other celiac tests ordered, Endoscopy appeared normal, Biopsy showed increased lymphocytes - Marsh I. She called biopsy "equivocal" but diagnosed Celiac anyway based on high specificity of tTg test.

Son (born in 2008): Alopecia Areata, Chronic constipation, vague abdominal pain, waves of nausea that have been occurring for months with no other cause identified,always tired even though he sleeps 10+ hours per night. Behavior change. Jekyll and Hyde type tantrums that are triggered by the silliest things. Totally uncharacteristic for him. Mild asthma, ezcema, wierd skin rashes that don't appear to be DH. Slow weight gain, normal height. His weight for age percentile is dropping but slowly so doesn't concern pediatrician. His BMI, however, has dropped from 33rd percentile to the 5th in 2 years. Low red blood cell count, low-normal hemoglobin/hematocrit - not being called anemia. His number looks just like mine used to and mine have continued to get worse. Normal total Iga, Negative tTg. Result was <1 with >4 being positive. Negative EMA. Negative DGP IgA and IgG. Elevated ESR (value 38. Normal <10).

Son (born in 2011): Enamel issues on baby teeth, Keratosis pilaris, Toenail fungus since birth on both small toes. Normal total IgA, negative tTg (<1).

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Alwayssomething    13

Alwayssomething
Posted

By any chance did they test his TPO?   If they did and that is elevated then that with the elevated and continuing to elevate numbers would be  enough to send him to an Endo.   Do you need a referal or can you make an appt yourself?   Without a referal it might take a little longer to get into someone but I would try my darndest.   

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cmc811    2

cmc811
Posted

They didn't test anything but TSH and since that was "normal" they don't want to order anything else to complete the thyroid panel, yet they don't have an explanation for his symptoms. I'm so frustrated because I know his symptoms are very general and could be due to a variety of different things, but that doesn't make them any less real for my son to deal with.

 

As far as insurance I don't need a referral but most speciality clinics require one to even schedule the appointment. I have messages out to PCP and GI questioning what the lab range is so high when everything I have read suggests 3-4 as the upper limit. We'll see what they're responses are.

Misty

 

Myself: tTg-IgA was 7 (>4 positive), normal total IgA, Unspecified anemia, low magnesium, really low Vitamin D, normal thyroid with no antibodies, slightly positive ANA (1:40 speckled) but confirmation panel all negative, so no explanation. No other celiac tests ordered, Endoscopy appeared normal, Biopsy showed increased lymphocytes - Marsh I. She called biopsy "equivocal" but diagnosed Celiac anyway based on high specificity of tTg test.

Son (born in 2008): Alopecia Areata, Chronic constipation, vague abdominal pain, waves of nausea that have been occurring for months with no other cause identified,always tired even though he sleeps 10+ hours per night. Behavior change. Jekyll and Hyde type tantrums that are triggered by the silliest things. Totally uncharacteristic for him. Mild asthma, ezcema, wierd skin rashes that don't appear to be DH. Slow weight gain, normal height. His weight for age percentile is dropping but slowly so doesn't concern pediatrician. His BMI, however, has dropped from 33rd percentile to the 5th in 2 years. Low red blood cell count, low-normal hemoglobin/hematocrit - not being called anemia. His number looks just like mine used to and mine have continued to get worse. Normal total Iga, Negative tTg. Result was <1 with >4 being positive. Negative EMA. Negative DGP IgA and IgG. Elevated ESR (value 38. Normal <10).

Son (born in 2011): Enamel issues on baby teeth, Keratosis pilaris, Toenail fungus since birth on both small toes. Normal total IgA, negative tTg (<1).

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africanqueen99    23

africanqueen99
Posted

I know way too much about TSH as a former thyroid cancer patient.

 

First thing - it's good practice to always get blood drawn at the same place to verify they're using the same standards and ranges.

 

Second thing - his TSH is shockingly high.  "Old school" physicians tend to use the .3-3.0 range, but the common current standard (by thyroid specialists) is .1-1.0.  Assuming these are not thyroid specialists it's pretty high to not medicate a person over 3.0.

 

I'd get a copy of both tests and find a good Endo.  At this rate I wouldn't worry about a Ped Endo, just a good one.  Work with that person for proper testing and then work on a Ped referral.

http://www.thyroid.org/patient-thyroid-information/endocrinology-thyroid-doctor/

Angela

Undiagnosed, but I'm positive that I'm the genetic link to celiac for my kids.  Gluten Free in solidarity of my girls!

Kid 1 (9 y/o girl) - DX celiac via blood in 9/2013 (age 7.5).  Negative biopsy in 10/2013.

Kid 2 (5 y/o boy) - DX as "latent celiac" via blood in 9/2013 (age 3.5).  Negative biopsy in 10/2013.

Kid 3 (3 y/o girl) - DX celiac via blood in 8/2013 (age 1.5) and 9/2013. 

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StephanieL    74

StephanieL
Posted

 

 

Second thing - his TSH is shockingly high.  "Old school" physicians tend to use the .3-3.0 range, but the common current standard (by thyroid specialists) is .1-1.0.  Assuming these are not thyroid specialists it's pretty high to not medicate a person over 3.0.

 

Yeah, that!  I actually called different endo's offices and asked the nurses what the normal values were for that office. If they gave me .3-3 I said thanks and went to the next one. When I finally found one that used the CURRENT recommendations, I started there.

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Gemini    871

Gemini
Posted

How you explained it is how I understood it but everyone is saying his numbers are fine so I don't know that I can get a pediatric endo to see him :( He has all the symptoms you listed EXCEPT he isn't gaining weight at all. At almost 6 his is only 39 lbs.

If your son has undiagnosed celiac, then even if his thyroid is low he may not gain any weight. I have Celiac and Hashi's.

I was diagnosed with Hashi's many years before the celiac and I weighed 94 pounds at diagnosis for Celiac.

I am still thin, although is now have some meat on my bones but gaining weight is still not easy for me. People are always surprised when I tell them I am hypothyroid because they always assume you gain weight with that. Not if you have Celiac........

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cmc811    2

cmc811
Posted

Can one of you be my son's doctor??? :)

 

Seriously, though, I just don't know how to get these doctors to listen. He doesn't fit the "classic" presentation of any one thing but like I have tried to point out, it might just be because he has more than one thing going on! I'm hoping the GI will do the scope now instead of waiting a few months like he originally said. I have plead my case to do it now and am just waiting on his response. I'm not even sure if the scope will show anything, but I'm tired of playing the "watchful waiting" game while my son is repeatedly having rough days.

 

I will request a full thyroid panel, including antibodies when his PCP is back in the office on Wednesday, but I don't have a whole lot of faith that she'll actually see the need and order it :(

Misty

 

Myself: tTg-IgA was 7 (>4 positive), normal total IgA, Unspecified anemia, low magnesium, really low Vitamin D, normal thyroid with no antibodies, slightly positive ANA (1:40 speckled) but confirmation panel all negative, so no explanation. No other celiac tests ordered, Endoscopy appeared normal, Biopsy showed increased lymphocytes - Marsh I. She called biopsy "equivocal" but diagnosed Celiac anyway based on high specificity of tTg test.

Son (born in 2008): Alopecia Areata, Chronic constipation, vague abdominal pain, waves of nausea that have been occurring for months with no other cause identified,always tired even though he sleeps 10+ hours per night. Behavior change. Jekyll and Hyde type tantrums that are triggered by the silliest things. Totally uncharacteristic for him. Mild asthma, ezcema, wierd skin rashes that don't appear to be DH. Slow weight gain, normal height. His weight for age percentile is dropping but slowly so doesn't concern pediatrician. His BMI, however, has dropped from 33rd percentile to the 5th in 2 years. Low red blood cell count, low-normal hemoglobin/hematocrit - not being called anemia. His number looks just like mine used to and mine have continued to get worse. Normal total Iga, Negative tTg. Result was <1 with >4 being positive. Negative EMA. Negative DGP IgA and IgG. Elevated ESR (value 38. Normal <10).

Son (born in 2011): Enamel issues on baby teeth, Keratosis pilaris, Toenail fungus since birth on both small toes. Normal total IgA, negative tTg (<1).

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StephanieL    74

StephanieL
Posted

With Gemini's AMAZING help, we were able to figure things out.

 

DS has

-multiple life threatening food allergies

-FPIEs

-Celiac with levels that would not come down

 

The not falling levels was driving me crazy and Gemini talked me through things and we went the endo route. After several bad visits I went with the calling about levels and now DS has been on meds for a while and he's doing well.  We are back to struggling with ttg's but....

 

All that to say, DS didn't have typical symptoms of Celiac OR thyroid issue. It was pure Mom/Celiac board power that got us through.  Hugs. It shouldn't be this hard :(

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africanqueen99    23

africanqueen99
Posted

Can one of you be my son's doctor??? :)

 

Seriously, though, I just don't know how to get these doctors to listen.

I am a F'ing squeeky wheel that they tolerate to shut me up...  Seriously, I don't ask for things - I explain what I would like and why (I'm midwestern so it's a skill to continue being polite while talking people into things).  Over the years I've had physicians not work with me.  So I ask for copies of my chart and fire them.  I've fired a LOT of doctors.

Angela

Undiagnosed, but I'm positive that I'm the genetic link to celiac for my kids.  Gluten Free in solidarity of my girls!

Kid 1 (9 y/o girl) - DX celiac via blood in 9/2013 (age 7.5).  Negative biopsy in 10/2013.

Kid 2 (5 y/o boy) - DX as "latent celiac" via blood in 9/2013 (age 3.5).  Negative biopsy in 10/2013.

Kid 3 (3 y/o girl) - DX celiac via blood in 8/2013 (age 1.5) and 9/2013. 

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cmc811    2

cmc811
Posted

I definitely need to get more assertive.

 

So, I would like to minimize any more blood draws so what should I ask for?

 

*Free T4

*Free T3

*Thyroid Antibodies

 

What else? He has had CBC, CMP, TSH, tTg, EMA, CRP all recently. Would there be value in checking for other deficiencies (vit d, vit b12, magnesium, etc)? Also, should I have the TSH done again to compare to his first one at 22 months since this will be the same lab?

Misty

 

Myself: tTg-IgA was 7 (>4 positive), normal total IgA, Unspecified anemia, low magnesium, really low Vitamin D, normal thyroid with no antibodies, slightly positive ANA (1:40 speckled) but confirmation panel all negative, so no explanation. No other celiac tests ordered, Endoscopy appeared normal, Biopsy showed increased lymphocytes - Marsh I. She called biopsy "equivocal" but diagnosed Celiac anyway based on high specificity of tTg test.

Son (born in 2008): Alopecia Areata, Chronic constipation, vague abdominal pain, waves of nausea that have been occurring for months with no other cause identified,always tired even though he sleeps 10+ hours per night. Behavior change. Jekyll and Hyde type tantrums that are triggered by the silliest things. Totally uncharacteristic for him. Mild asthma, ezcema, wierd skin rashes that don't appear to be DH. Slow weight gain, normal height. His weight for age percentile is dropping but slowly so doesn't concern pediatrician. His BMI, however, has dropped from 33rd percentile to the 5th in 2 years. Low red blood cell count, low-normal hemoglobin/hematocrit - not being called anemia. His number looks just like mine used to and mine have continued to get worse. Normal total Iga, Negative tTg. Result was <1 with >4 being positive. Negative EMA. Negative DGP IgA and IgG. Elevated ESR (value 38. Normal <10).

Son (born in 2011): Enamel issues on baby teeth, Keratosis pilaris, Toenail fungus since birth on both small toes. Normal total IgA, negative tTg (<1).

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