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9 year old still symptomatic..what to do?
After almost 5 months on thyroid medicine, and supposedly "in range", my 9 year old daughter is still experiencing symptoms - mainly fatigue, mood swings, poor appetite, aches and pains. She doesn't think she feels that much better. We are scheduled to meet with her pediatric endocronoligist in two weeks. What could be contributing to her still being somewhat symptomatic? I just am so out of my league with this, not sure what questions to ask or what other things to test for. Also wondering about the vitamin D deficiency thing, how much of an impact could that make? Would appreciate any thoughts or suggestions from those on this path longer than us.
Thanks,
Denyc
Thanks,
Denyc
Just a friendly comment...You have good, knowledgeable people talking to you here...They have helped me tremendously in the past and they will probably still be taking my questions long into the future...
Good luck...I'm going thru this in my forties. It would have been a really rotten apple to have to deal with it at nine. Chin up...It will seem like it takes forever at that age, but she'll get there...You are doing the right things...
Good luck...I'm going thru this in my forties. It would have been a really rotten apple to have to deal with it at nine. Chin up...It will seem like it takes forever at that age, but she'll get there...You are doing the right things...
I am assuming that the T3 is a total T3, as opposed to a free T3...that's what the range on TT3 usually looks like .Am I correct?
Total T3 (TT3) is considered an obsolete test and pretty much a waste of money. It gives the total amount of T3 in the blood (thus the name!), but much of that T3 is chemically bound to protein and thus unavailable to the cells for metabolism. Free T3 (FT3), on the other hand, tells what is available to the cells.
Your daughter's FT4 is still below midpoint in the range, and she may not be well until the FT4 is up into the upper half to third. However, (and please check to make sure I'm right that this is TT3), the TT3 is high, so I'd say it's very important to have FT3 tested at this point. Both her FT4 and TSH say that an increase might help alleviate more of her symptoms. FT3 would confirm that. Could you possibly get that ordered before your appointment in two weeks?
Total T3 (TT3) is considered an obsolete test and pretty much a waste of money. It gives the total amount of T3 in the blood (thus the name!), but much of that T3 is chemically bound to protein and thus unavailable to the cells for metabolism. Free T3 (FT3), on the other hand, tells what is available to the cells.
Your daughter's FT4 is still below midpoint in the range, and she may not be well until the FT4 is up into the upper half to third. However, (and please check to make sure I'm right that this is TT3), the TT3 is high, so I'd say it's very important to have FT3 tested at this point. Both her FT4 and TSH say that an increase might help alleviate more of her symptoms. FT3 would confirm that. Could you possibly get that ordered before your appointment in two weeks?
Thanks for the responses. In looking at her last labs her T4 was 1.0 (range 0.6 - 1.6) and her TSH was 0.6 (range 0.34 - 5.60). This was done on 4/24/09. I doesn't look like they did the T3 on 4/24, but they did do it on 4/15 which was at 203 (range 127 - 221).
Denyc
Denyc
Hello again, fellow Oregonian!
I'd like to see exact numbers for FT3, FT4, and TSH also.
We hear this scenario so often...people who are "in range" but still symptomatic. Doctors tend to ignore our individual differences and just treat "by the numbers". I wrote the following, which is my opinion on why this occurs so often.
Hope it helps.
Proper Use of Reference Ranges in Treating Hypothyroidism: Some Ideas to Discuss with your Doctor
Many hypo patients or undiagnosed hypo patients have an array of hypo symptoms, yet their lab work (free T3, free T4 and TSH) indicate that they are within the reference ranges that doctors erroneously refer to as “normal”. TSH is often high in the range (or maybe even above the range according to the latest standards of 0.3-3.0 which many labs and doctors still refuse use) and FT3 and/or FT4 are low in their ranges. Many doctors think that if labs are anywhere within ranges, their job is done...patient is no longer hypo, any remaining symptoms are not thyroid related, patient is fat and lazy. NOT TRUE.
Please see illustration below. Each of us has a personal reference range within the population reference range at which we are euthyroid (neither hypo nor hyper). A shift in lab values of the individual outside of his or her individual reference range, but still within the population reference range, is not normal for that individual. Many don't feel well until FT3 and FT4 are in the upper half of the ranges. After all, the population ranges of FT3 and FT4 are statistically determined distributions of patient results; by definition, approximately half the population will be euthyroid in the top half of the range and approximately half in the bottom. If you are one of the people whose personal range must be in the top of the ranges, and your doctor won’t treat you or won’t fine-tune your medication when your results are in the bottom of the range, you are left hypo. Your doctor may tell you your labs are "normal", but they are NOT “normal” for you.
Reference ranges of test results do not imply that everyone is going to be well as long as they are anywhere in the ranges. The ranges are broad (e.g. 0.6-2.0 for FT4). If your personal FT4 reference range was 1.6-1.8 when your thyroid was functioning properly, does it really make any logical sense at all that now that you are on replacement hormones, you should feel comfortable with an FT4 of 1.0? No, it doesn't. We all have a set point that is optimal for us...doctors should be finding it and adjusting medication to it.
If labs are within ranges, it's time for fine-tuning (or initiating a low dose trial)...increasing meds slightly if hypo symptoms are still present. This will move FT3 and FT4 up in the range and alleviate symptoms…that’s the goal. The ranges define the universe in which we can freely adjust medication; its entire breadth from lower limit to upper should be used for this purpose. The patient will still be in the reference ranges, but he or she will no longer be symptomatic.
Illustration:
Personal
Current Reference
Level Range
0.6 1.0 [1.6……1.8] 2.0
|-----------------Population Reference Range-------------------|
With an FT4 of 1.0, patient is still hypo according to his/her personal reference range.
I'd like to see exact numbers for FT3, FT4, and TSH also.
We hear this scenario so often...people who are "in range" but still symptomatic. Doctors tend to ignore our individual differences and just treat "by the numbers". I wrote the following, which is my opinion on why this occurs so often.
Hope it helps.
Proper Use of Reference Ranges in Treating Hypothyroidism: Some Ideas to Discuss with your Doctor
Many hypo patients or undiagnosed hypo patients have an array of hypo symptoms, yet their lab work (free T3, free T4 and TSH) indicate that they are within the reference ranges that doctors erroneously refer to as “normal”. TSH is often high in the range (or maybe even above the range according to the latest standards of 0.3-3.0 which many labs and doctors still refuse use) and FT3 and/or FT4 are low in their ranges. Many doctors think that if labs are anywhere within ranges, their job is done...patient is no longer hypo, any remaining symptoms are not thyroid related, patient is fat and lazy. NOT TRUE.
Please see illustration below. Each of us has a personal reference range within the population reference range at which we are euthyroid (neither hypo nor hyper). A shift in lab values of the individual outside of his or her individual reference range, but still within the population reference range, is not normal for that individual. Many don't feel well until FT3 and FT4 are in the upper half of the ranges. After all, the population ranges of FT3 and FT4 are statistically determined distributions of patient results; by definition, approximately half the population will be euthyroid in the top half of the range and approximately half in the bottom. If you are one of the people whose personal range must be in the top of the ranges, and your doctor won’t treat you or won’t fine-tune your medication when your results are in the bottom of the range, you are left hypo. Your doctor may tell you your labs are "normal", but they are NOT “normal” for you.
Reference ranges of test results do not imply that everyone is going to be well as long as they are anywhere in the ranges. The ranges are broad (e.g. 0.6-2.0 for FT4). If your personal FT4 reference range was 1.6-1.8 when your thyroid was functioning properly, does it really make any logical sense at all that now that you are on replacement hormones, you should feel comfortable with an FT4 of 1.0? No, it doesn't. We all have a set point that is optimal for us...doctors should be finding it and adjusting medication to it.
If labs are within ranges, it's time for fine-tuning (or initiating a low dose trial)...increasing meds slightly if hypo symptoms are still present. This will move FT3 and FT4 up in the range and alleviate symptoms…that’s the goal. The ranges define the universe in which we can freely adjust medication; its entire breadth from lower limit to upper should be used for this purpose. The patient will still be in the reference ranges, but he or she will no longer be symptomatic.
Illustration:
Personal
Current Reference
Level Range
0.6 1.0 [1.6……1.8] 2.0
|-----------------Population Reference Range-------------------|
With an FT4 of 1.0, patient is still hypo according to his/her personal reference range.
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