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congenital hypothyroidism
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congenital hypothyroidism

my baby was born with TSH high on jan 2012, she has underdeveloped thyroid gland, we started her on 25mcg tablet... after a month her TSH was normal but FT4 and total t4 were high, so our doctor advised us to reduce her dosage to 12.5 mcg. she is 4 months old now, recent blood test done shows - TSH - 26.11 (normal 0.25- 5.0 )
         Ft4 - 13.87    (normal 9.0-20)
           total  t4 -   110.88    ( 60-120)

our doctor told us continue with the 12.5 dosage, since ft4 and total t4 are normal not to worry about TSH....
    we consulted another paediatric endocrinologist and he says to increase the dosage...
   we are confused now whom to follow.. please advise
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Avatar_m_tn
In order to give you the best possible answer, we really need to know the level of the most important thyroid hormone test, which is Free T3.  TSH is affected by so many different variables that it is inadequate as the primary diagnostic for thyroid issues.  Even though TSH is believed by many doctors to reflect accurately the levels of the actual thyroid hormones, in reality it cannot be shown to correlate well with either Free T3 or Free T4.  The best indicator is symptoms, followed by the levels of Free T3 and then Free T4.

Since trying to determine symptoms is not possible for your baby, I would say that the next best indicator to follow would be Free T3.  Free T3 has been shown to correlate best with hypo symptoms, while Free T4 and TSH did not correlate.  So my suggestion is for you to request a Free T3 test, along with Free T4 and TSH.  Then I think that the target would be to get her Free T3 and Free T4 around the middle of the range.  If the Free T3 test shows that her level is already around the middle of the range, similar to the Free T4 test result, then the current dosage would seem to be adequate, and the TSH of no concern.  

Remember that TSH causes no symptoms, it is only an indicator of thyroid hormone levels.  Why not rely on the actual thyroid hormone levels as shown by the Free T3 and Free T4 tests?

Hopefully some other members will also give you their opinions as well.
10 Comments Post a Comment
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Avatar_m_tn
In order to give you the best possible answer, we really need to know the level of the most important thyroid hormone test, which is Free T3.  TSH is affected by so many different variables that it is inadequate as the primary diagnostic for thyroid issues.  Even though TSH is believed by many doctors to reflect accurately the levels of the actual thyroid hormones, in reality it cannot be shown to correlate well with either Free T3 or Free T4.  The best indicator is symptoms, followed by the levels of Free T3 and then Free T4.

Since trying to determine symptoms is not possible for your baby, I would say that the next best indicator to follow would be Free T3.  Free T3 has been shown to correlate best with hypo symptoms, while Free T4 and TSH did not correlate.  So my suggestion is for you to request a Free T3 test, along with Free T4 and TSH.  Then I think that the target would be to get her Free T3 and Free T4 around the middle of the range.  If the Free T3 test shows that her level is already around the middle of the range, similar to the Free T4 test result, then the current dosage would seem to be adequate, and the TSH of no concern.  

Remember that TSH causes no symptoms, it is only an indicator of thyroid hormone levels.  Why not rely on the actual thyroid hormone levels as shown by the Free T3 and Free T4 tests?

Hopefully some other members will also give you their opinions as well.
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Avatar_f_tn
hello.. thankyou soo much for your advise.. we got her blood test done and it shows
TSH         19.75   ( 0.25 - 5.0 uIu/ml)
Free T4   10.14   (9.0 - 20 Pmol/l)
Free T3    6.49     (4 - 8.3 Pmol/l)
Total T4   88.31   ( 60 -120 nmol)
this test was done early morning without taking that days medicine... TSH number has reduced from previous test..
will continue with the present dose of 12.5 mcg .. what do u say??
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Avatar_m_tn
In my opinion, I think I would have more confidence in the knowledge and experience of the pediatric endocrinologist.  I do have some further comments but first I need you to please confirm the type of thyroid med given to your baby.
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Avatar_f_tn
its the thyroxine sodium tablets 12.5mcg
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Avatar_m_tn
From the new blood test results I expect that the pediatric endocrinologist will still want to increase her meds.  The question I would have is how much of an increase.  When you consider that the normal starting dose for many adult patients is 25 - 50 mcg of T4 med, the initial dose for your daughter seems excessive when you consider her size and body weight.  So I think that it would be good to ask the Endo about what amount of med would be appropriate, considering her size and body weight.  Our members find that it is best to be cautious and increase dosage slowly.

Please let us know how it goes with the doctor and how your daughter is doing.
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Avatar_f_tn
our endo told not to increase the dosage.. he says we are treatng thyroid not pituitary to worry about TSH.. my baby is doing good.. i have to put faith in my doctor..  what do u say?
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Avatar_m_tn
I am a bit puzzled by your Endo doctor's apparent change of heart.  If I understand correctly he wanted to increase the dosage of 12.5 mcg when your baby's tests showed :  

         TSH - 26.11 (normal 0.25- 5.0 )
         Ft4 - 13.87    (normal 9.0-20)
           total  t4 -   110.88    ( 60-120)

Most recent tests show this:

TSH         19.75   ( 0.25 - 5.0 uIu/ml)
Free T4   10.14   (9.0 - 20 Pmol/l)
Free T3    6.49     (4 - 8.3 Pmol/l)
Total T4   88.31   ( 60 -120 nmol)

So the TSH level went down.  The Total T4 and Free T4 levels also went down, but the Free T3 is above the middle of its range, which is good.  Since your Endo doctor now did not want to increase dosage, and he said not to worry about TSH, I'm wondering what was his rationale for that decision.  In your position I would continue to have faith in the Endo, but I would ask what tests he based that decision on.  Hopefully it was because Free T3 was above the middle of the range, which is good.  

Also, from what I've read, thyroid test results can vary quite a bit with infants, so I would also suggest that you ask the Endo when she will be tested again.  I think it would also be a good idea to test every couple of  months to confirm the levels of Free T3 and Free T4,  and make sure that medication is adequate.  .  
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Avatar_f_tn
i think you got confused, our endo always told not to increase the dosage of 12.5 mcg even when TSH was 26.11, he says the same for the recent test also...
we had consulted another endo about this who told us to increase the dose , so i got confused about these doctors as to who is correct .. so wrote here for help
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Avatar_m_tn
Yes, since you had not mentioned that your regular doctor was an Endo,  I did get confused when you said that your Endo told you not to increase.  I thought you were referring to the second Endo and that he had changed his mind about an increase.  As I mentioned above, "In my opinion, I think I would have more confidence in the knowledge and experience of the pediatric endocrinologist."  I think that following his advice is your best course of action, along with making sure that her Free T3 and Free T4 levels are monitored regularly.
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231441_tn?1333896366
Hello,

seeing her results are in range I can see the dr doesn't want to change.  But I think it is controversial (as your drs can't agree) on whether to increase or not at this point.

TSH is a pituitary hormone and it's put out to tell the thyroid to increase production.  She doesn't have a thyroid and so she has to take the medication orally.

From what I've seen, mostly the problem with medication is when TSH is very low and FT3 and FT4 are low, meaning the TSH is not accurately reflecting the thyroid hormone levels.  However, when TSH is very high, it really mostly does seem to reflect a need for a high level or hormone.

Considering how important thyroid hormone is for development, I think it would be good to see results for the FT3/FT4 in at least mid range.  The FT3 looks ok, but the FT4 is right at the bottom of the range.   So a small increase in meds maybe due soon.

Also her requirement for thyorid is going to increase as she grows, so close monitoring is very important.
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