Aa
preteen with autoimmune disorder/family history
Hi-
My family has a very strong prevalence of Hashimoto's Disease (my mother, 5/5 of my maternal aunts or uncles, grandmother, 4/6 first cousins (other two have other endocrine disorders diabetes type 1 and addison's disease). A second cousin had a pituitary tumor as a teen. I also have Hashimoto's, and take 200 mcg synthroid daily to keep my TSH around 1.0 where I feel alive. My 11 year old daughter has ALL the classic symptoms of being hypothyroid (cold, tired, depressed, thinning hair, dry skin, constipation, muscle weakness, gi disturbances, compressive symptoms on swallowing, somewhat precocious puberty,weight gain with very little food intake) but a TSH of 3.1 ("high normal"), and no thyroid antibodies were detected. However, her ANA titer was speckled >>1:640, and other tests ruled out infection, viral illness like mono, or anything other than an autoimmune disorder. Her pediatrician wants her to see a rheumatologist (which is a good idea) but the earliest appointment is about 9 weeks away. Given the family thyroid history, I want her to have a thyroid ultrasound (to check for anything more sinister than Hashimoto's) and begin a starting dose of synthroid (75 mcg?) to see if her symptoms improve . I would bank on the genetics to think she is heading down the same path as the rest of us and would rather try to do something to give her back her life energy instead of wait for months for more tests at a rheumatologist and more months for definitive diagnosis. Is this a reasonable course of action? Why WOULDN'T this be a good idea?
(BTW: I do not buy that the TSH range of 0.5 - 5 is normal for everyone. If I am higher than 1.8, I am virtually comatose, and all my family is very similar. Her TSH was 2.5 last year, so it is inching upward).
My family has a very strong prevalence of Hashimoto's Disease (my mother, 5/5 of my maternal aunts or uncles, grandmother, 4/6 first cousins (other two have other endocrine disorders diabetes type 1 and addison's disease). A second cousin had a pituitary tumor as a teen. I also have Hashimoto's, and take 200 mcg synthroid daily to keep my TSH around 1.0 where I feel alive. My 11 year old daughter has ALL the classic symptoms of being hypothyroid (cold, tired, depressed, thinning hair, dry skin, constipation, muscle weakness, gi disturbances, compressive symptoms on swallowing, somewhat precocious puberty,weight gain with very little food intake) but a TSH of 3.1 ("high normal"), and no thyroid antibodies were detected. However, her ANA titer was speckled >>1:640, and other tests ruled out infection, viral illness like mono, or anything other than an autoimmune disorder. Her pediatrician wants her to see a rheumatologist (which is a good idea) but the earliest appointment is about 9 weeks away. Given the family thyroid history, I want her to have a thyroid ultrasound (to check for anything more sinister than Hashimoto's) and begin a starting dose of synthroid (75 mcg?) to see if her symptoms improve . I would bank on the genetics to think she is heading down the same path as the rest of us and would rather try to do something to give her back her life energy instead of wait for months for more tests at a rheumatologist and more months for definitive diagnosis. Is this a reasonable course of action? Why WOULDN'T this be a good idea?
(BTW: I do not buy that the TSH range of 0.5 - 5 is normal for everyone. If I am higher than 1.8, I am virtually comatose, and all my family is very similar. Her TSH was 2.5 last year, so it is inching upward).
Even though the old .5-5.0 range for TSH is still predominantly in use, the Amer. Assn. of Clinical Endrinologists recommended that it be revised downward to .3-3.0, over 6 years ago. So your daughter's TSH of 3.1 is not "high normal", but over this range. Since TSH is a pituitary hormone that does not correlate very well with symptoms, two tests that would be far more important would be free T3 and free T4. Of course it is also very important to do the other testing you mentioned to see what is causing her hypo symptoms and take that into account.
I would also insist on testing for free T3 and free T4 because they are the most biologically active and largely regulate metabolism and other body functions. Free T3 is actually four times as potent as free T4 and correlates best with symptoms. Keep in mind that what your daughter needs to be treated for her symptoms, not her TSH level.
My opinion is that the best approach is for the doctor to test and adjust free T3 and free T4 levels as required to alleviate symptoms. Sometimes this requires the TSH to be suppressed below the reference range, which is not really a problem unless it is accompanied by excessive free T3 and free T4 enough to cause hyper symptoms. The real goal is to properly medicate a patient enough to reach the "sweet spot" by which I mean neither hypo nor hyper symptoms.
Of course the results of the other mentioned tests will play into all this, but I agree with you that I wouldn't want to wait around while this is ongoing, since your daughter is already suffering with a lot of symptoms. Starting with a moderate dosage of thyroid meds, as mentioned by Smilerdeb, would be a good start.
I would also insist on testing for free T3 and free T4 because they are the most biologically active and largely regulate metabolism and other body functions. Free T3 is actually four times as potent as free T4 and correlates best with symptoms. Keep in mind that what your daughter needs to be treated for her symptoms, not her TSH level.
My opinion is that the best approach is for the doctor to test and adjust free T3 and free T4 levels as required to alleviate symptoms. Sometimes this requires the TSH to be suppressed below the reference range, which is not really a problem unless it is accompanied by excessive free T3 and free T4 enough to cause hyper symptoms. The real goal is to properly medicate a patient enough to reach the "sweet spot" by which I mean neither hypo nor hyper symptoms.
Of course the results of the other mentioned tests will play into all this, but I agree with you that I wouldn't want to wait around while this is ongoing, since your daughter is already suffering with a lot of symptoms. Starting with a moderate dosage of thyroid meds, as mentioned by Smilerdeb, would be a good start.
75mcg is a high dose to start a teenager on....I would say 25mcg would be more the 'go'.
Confer with your Doctor and see what he/she says.
She could go 'drug induced hyper' on 75mcg.
Everyone is different and what may be 'your' comfort level in TSH, may not be for her.
This is something that has to be considered.
You dont say what her FT3 and FT4 were?
Also remember that preteens and children have higher levels than adults and by putting her on 75mcg could do her more harm than good.
I would go back to the Doctor, ask for the complete thyroid panel results and post them here so others can help advise you.
Confer with your Doctor and see what he/she says.
She could go 'drug induced hyper' on 75mcg.
Everyone is different and what may be 'your' comfort level in TSH, may not be for her.
This is something that has to be considered.
You dont say what her FT3 and FT4 were?
Also remember that preteens and children have higher levels than adults and by putting her on 75mcg could do her more harm than good.
I would go back to the Doctor, ask for the complete thyroid panel results and post them here so others can help advise you.
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