TSH is high but decreasing, TF4 and T4 are normal

[zaki9999]

After three days of delivery, TSH for my baby boy was 56 ulU/ml. we repeated the test when the baby was 7 days, and the results were 33 for TSH (abnormal) and 169 for T4 (normal). on the 10th day, the results shows TSH 22.77 (abnormal) and TF4 1.9 ng/dl (normal).

As trend shows; TSH is decreasing towards the normal values, while the value for Thyroxine (total and free T4) are within normal values.

My question is: shall we wait for another 4 or 5 days and check for the TSH to reach it normal values or do we have to start with the medication? (weight at born 3.325 Kg)

[magpieannie]

That's good news about the thyroid gland being located by the ultrasound and that it looked to be normal size. I would think that waiting another week would be okay as the baby would still be under 4 weeks of age which is where some research says that hormone needs to be started by. I have also seen research that says to start by 7 weeks with 12 weeks being the longest. After this and/or the longer you wait, the more chances of the baby having reduced IQ or learning disabilities, so the sooner the better to play it safe. Since the TSH is going down and the t4 is in range, then hopefully the baby is not in any danger of this. Can you have the doctor test the freet3 (triodothyronine) level just to be on the safe side? How is the baby behaving? Does the baby have any of the physical symptoms that infants commonly display with hypothyroidism? (sleeps alot, cold hands and feet,veiny /modeled skin, enlarged fontonal (soft spot on head) jaundice (yellowing of skin), hoarse cry, constipation, etc...) Please be very proactive on this and don't wait too long! Is your wife nursing the baby????

[zaki9999]

Thank you very much for sharing your experience with us.

in my case: We did ultrasound scan for the thyroid gland for my baby, and it was found in the right place and right size.

I consulted many doctors, some of them have advised to start immediately with the Eltroxin, while the others preferred rather to wait for another week and monitor TSH and FT4 levels.

I decided to go with the second recommendation, as thier are two good signs: the first one is that TSH level is decreasing (from 56 to 22.77 in 6 days), and the FT4 level is close to the normal upper limit = 1.9 .

hopefully everything will be fine.

I will keep you all posted.

[magpieannie]

I try to always chime in when it's a child or infant as it is so rare and such a scary and confusing time for the parents. It's always better to aire on the side of caution with infants as it's just so critical and their brains are developing so quickly. My daughter began Synthroid at 3 weeks and there is no mental delay at all, she is very smart and a normal third grader now. Parents of CH (congenital hypothyroidism) children must be very proactive  and pay close attention to every little thing as their babies and young children can't voice how they are feeling. It can be hard to relax as I know I am still always on guard and my daughter is nine! It does get easier though as they mature and can begin to understand and communicate how they are feeling. As far as meds for babies go, I don't think that t3 would ever be given by a pediatric endo. They treat with t4 only as they feel it is safer in young children and they usually never check the t3, and just assume the t4 (storage hormone) magically and adequitly converts to the active t3 hormone ( atleast that was our frustrating experience with our pediatric endo. at Medical City Dallas). Now that my child is older and had a conversion issue and was beginning to suffer many other hypo health issues due to excess t4 and low t3, she now sees a new doctor and is on a t3/ t4 desiccated hormone (for 1 year now)  which has eliminated much of her hypo health issues that she was suffering with on t4 only Synthroid (the worst of whichand the final straw for me were PVC's in her heart-which she now no longer has!) I guess I will always be thankful to her pediatric endo. and Synthroid as it and she did keep my daughter from having any brain damage/low IQ and she is one of the tallest girls in her class. However, for my daughter, as her body was changing and growing  her hormonal needs began to change and t4 only was not cutting the mustard for her anylonger! Recognizing this is the hard part as a parent as the pediatric endo.s are even  quicker  then regular adult endo.s at blamming symptoms on everything else other then low or no thyroid! It has been an interesting journey with my daughter, however we are slowly figuring out the best path for her individual needs ( diet is huge here now: high protein / low carb. / low sugar/ avoid artificial sweetners / soy free / non toxic / organic/ and gluten free plus exercise and suppliments so that she can have the best life possible living without this tiny, yet so crucial to life, endocrine gland that has an effect on just about every system of the body and it's proper function!

[TamraW]

Many mothers who come here are lucky to be able to learn from your experience. I can't believe your daughter was born with no thyroid. Thanks for sharing this amazing story.

BTW - Many docs do treat with Synthroid, but always make sure the FT3 levels are addressed and treated, as needed. Synthroid alone (a T4 drug) may not cut it. I know I'd be lost without my T3 drug, Cytomel. Some other people on this forum use Armour, a pig based thyroid hormone containing T3/T4, which has proven to work well for them.

:) Tamra

[magpieannie]

(Typo): TSH  (WILL BE ELIVATED) (warning signal) from the pituitary gland that more thyroid hormone is needed.

[magpieannie]

Are you nursing by chance? My daughter was born without a thyroid gland. The thyroid hormone in your breast milk (and thyroid that they are born with that came from you while they were in utero) can sway the labs some. It can mask the problem, making the numbers contradict and confuse the doctors into thinking there is not a problem when there really is. This exact thing happened with my daughter. She had elivated TSH which was from her body, however her t4 was in normal range (from my body/milk). She ended up having no thyroid gland at all!!!! (figured it out at 1 year when I stopped nursing) Thankfully I aired on the side of caution and began her on Synthroid at 3 weeks of age. (Had to find a pediatric endo. on my own as the pediatrician was way to relaxed about it all, and wasn't going to get my daughter into a specialist for 4 months as her t4 was okay (problem was, it wasn't her body making it) I have no idea what the t3 was, however, since her TSH was elivated , I have a feeling that it was insuffient as this is the active thyroid hormone that the body and brain need to develope and when there is not enough of it circulating within the body the TSH (warning signal) from the pituitary gland that more thyroid hormone is needed. Proper thyroid hormone levels in babies is crucial for brain development and body growth!! You must take this seriously, every day counts as therre brains are developing rapidly, so  you must not take chances here! Get your infant to a pediatric endocrinologist right away and have the baby begin t4 replacement (most doctors use Synthroid) The tiny pill can be put in your babies cheek and you can nurse until it dissolves.

[Super_sally888]

Hi,

I think they should start the meds, given how important thyroid is for normal development.

With proper monitoring (TSH and FT3 adn FT4) the meds can be properly adjusted and if he didn't need the meds in future it would become obvious from the blood tests.

What is the range for the FT4 and T4?  If the levels are mid to high in the reference range, I'd be relatively comfortable monitoring for another week or so.  If the levels are low in the range I'd go for starting meds.

All my personal opinion.  Do find a good doctor.

Best wishes

[TamraW]

I don't know if many of us here are experts in baby thyroid. I'm so sorry that this is  happening to your little one. I can tell you that TSH is a pituitary hormone and should be treated as such. Measuring FreeT3 and FreeT4 hormones is the direct way to treat thyroid. The doctors should be treating those levels, not the TSH. You might want to get a second opinion about your baby's treatment. This site lists recommended endos:

http://www.thyroid-info.com/topdrs/

The endo should be testing and treating his frees and check the pituitary gland for any malfunction.

Best of luck to you and your baby,
:) Tamra