First post here. The world of Thyroids is a confusing one hey?
Anyway, baby was born with CHT. Been having regular blood tests until the last one which they left a bigger gap (2 months between tests, he's only just 5 months old now)
Previous to this week's test they thought they had his dosage and levels about right.
This one has come back with an elevated TSH at 30.6 and a normal T4 at 16.5.
He has been on 25mg of levo mon-fri and then 37.5mg on weekends.
Because of the increased TSH they want to move him to 37.5mg every day, which seems a little extreme to me.
They are questioning if we are giving him his levo correctly, suggesting that the TSH levels have gone wrong due to giving him it incorrectly (although we've not changed anything)
Anyone experienced anything similar or have any advice?
Thanks
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willwright1990
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Doses of levothyroxine in young children can be far higher than in adults (on a per kilogram basis).
Other than some apparent assumption that it makes things easier for those doing the dosing, why would anyone suggest two higher doses on consecutive days?
If there needs to be any sort of dose alternation, make it 25, 25, 37.5, 25, 25, 37.5, 25, 25, 37.5, ... (or whatever).
We really need to look at the reference intervals (ranges) - not just see "normal T4 at 16.5".
16.5 could be almost top of range (if it is 7-17), or not even halfway (if 12-22).
And you always need to check they are using, and you are seeing the paediatric ranges for the age. Too many doctors have failed to appreciate how different paediatric and adult ranges can be. Have a look here (just an example - every lab is, or could be, different):
An Overview on Different L-Thyroxine (l-T4) Formulations and Factors Potentially Influencing the Treatment of Congenital Hypothyroidism During the First 3 Years of Life
I think that second article I linked does exactly that! And it is open access so you can download it.
Also - I do not know if the time between T4 dose and test is an issue?
You'll find many here feel that the T4 test should be near the time for the next dose - to get a trough value. Rather than shortly after taking a dose and seeing the result of the brief and sharp spike (in adults, around two hours after ingestion).
The peak of T4 is so sharp, testing minutes before, at the precise peak, or minutes to hours after could produce three very different results.
His bloods are always done about 11am on a Tuesday.
We've always been told to give him his meds on an empty stomach so we do it first thing. As you can imagine with a baby this never goes down well when you only give him a few ml of breastmilk with his meds in, then he has to wait at least 30mins before having his proper breakfast.
That implies the FT4 result will be at least somewhat elevated due to the dose taken not that long before.
(I'm wary of making assumptions about how levels of thyroid hormones and TSH change through the day, and after dosing, in infants. All too easy to make assumptions based on adults.)
Thyroid Patients Canada has been producing some excellent articles. All properly referenced, and presented with graphics, charts, etc. (Still not always easy reads! It is complicated.)
Hello ,whilst I don't have a baby with thyroid disorder I do have under active thyroid myself since a small child and despite taking it religiously everyday somethings my levels change so definitely stamp out their questioning you about providing the medicines reliably, firstly I should think the dose is 37.5mcg not mg easy mistake to make, really it shouldn't concern you providing a different or higher dose the body's system needs that medication not having enough or having too much is where the damage comes in and symptoms start so if bloods suggest more is needed please don't hesitate it can take a few adjustments to get things settled but definitely not worth leaving the condition under medicated my side effects list is ridiculous I'm on 300mcg per day down from 350mcg the 350mcg wasn't actually too high but caused thyroxine induced anxiety so I now have to function slightly on the low side, but what I really need is t3 medication to better treat my thyroid but its very expensive, so instead the make struggle on with t4 meds my body is not great converting it to the t3 so direct t3 would be so much better, this could be similar in your babies case if you find that the dose needs to be periodically increased more than a few times its likely to be the same issue what gets me is due to the pretty servere side.effects I get from poor thyroid management so they can opt for cheaper t4 meds I require way more doctors appointments health checks and treatments for health issues caused by it that most likely cost 5 or 10x more than what the t3 would cost them it's crazy! I really hope you get the balance right as soon as possible 🙏 and I'm very sorry if I've not helped at all I just wanted you to know levels can amd do change its not your fault and that using a lower dose of t3 might be a much better route if you can get the endocrinologist to prescribe them, take care
No I think we had something else in the beginning.
I think we moved both doses to Teva because they don't have lactose and we thought he might have a milk intolerance, although I think it's probably cows milk intolerance rather than lactose.
Also I did just read that methods of measuring FT3 are not reliable and many with this condition often have normal levels of this hormone so it isn't reliably used to guide treatment.
Whether this applies to babies I'm not sure but with one of those treating your baby mentioning so maybe that's the case.
Was he a breech birth?
From the reading that I have done the focus is on the FT4 levels.
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Test results, a few months old but would appreciate your opinions...
Feel like my old self has died
Found some old results
Diagnosed 6 months and still on starter dose
My 12 year old son has u active thyroid.
