My little girl is 12 weeks old and was diagnosed with congenital hypothyroidism at 10 days old through the newborn screening heel prick test. Her initial TSH was 117 and our endocrinologist initially thought she was born without a thyroid gland at all. However, her next blood test which also looked at T4 and T3 which was done on the day she started levothyroxine showed her TSH had risen to 257 and she had some of her own thyroid hormone (T4 10) so suggesting an underdeveloped/faulty thyroid rather than a complete absence of one. I’m meeting with her consultant this week but interested in interpretations of her levels here. What I’m finding difficult to get my head around is why her TSH is being stubbornly high despite being slightly over medicated with just above range T4 levels. Can anyone shed any light for me?
Here’s an overview of her levels so far
28.12 - TSH 117
03.01 - T4 10.3 T3 6.3 TSH 257
*put on 37.5mcg dose*
17.01 - T4 41 T3 9.6 TSH 2.9
*dose reduced to 25mcg*
31.01 - T4 27 TSH 7.9
02.03 T4 25 TSH 9.4
Thanks in advance for any enlightenment on this issue! I want to go prepared to meet with my endocrinologist if I think there is more to classic hypothyroidism here.
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Owlette-Twinkle
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Sorry you haven't had any responses in what must be a very worrying time for you. Lack of responses are most likely because this is out of our field of knowledge. Paediatric thyroid treatment may seem the same as that for adults but in reality it is so different and most here will have no experience of it. We wouldn't know the tolerances for an infant or what to suggest.
Know little about congenital hypothyroidism but as a neonatal nurse would think that during growth spurts and normal early development you would see blood results fluctuate and that your little girl will need frequent tests and adaption of doses to optimise her development.
There is a leaflet on Great Ormond Street website, put congenital hypothyroidism into search engine.
If you don’t feel reassured by her paediatric endocrinologist remember your can ask they discuss her with specialists or a second opinion.
I've no knowledge of paediatric hypothyroidism either, but you have my sympathy in what must be a worrying time for you and your family. If you could provide lab reference ranges for those results that would be helpful.
I saw an endocrinologist last year whose daughter was born without a thyroid gland. TSH 700. Lucky child to have a mum who understands her need. You have a hard road ahead of you. You will have to become your daughter’s endocrinologist as much as possible and not rely on clinicians to always be thinking about what’s in her best interest.
I would suggest starting a library at home on hypothyroidism. There are good introductory books on thyroid, such as Paul Robinson’s Thyroid Patient’s Manual.
Do you know whether those T4 and T3 results are Total T4 and Total T3 or are they Free T4 and Free T3?
What you need to be tested is Free T4 and Free T3. The Total values are really not helpful in most cases.
Another thing you need to make sure of is that when getting copies of test results you must always get the reference ranges.
Start keeping a detailed diary/folder of appointments, who you see and where, which tests were done, results and reference ranges, and which treatment and dose of thyroid replacement hormone your daughter was treated with. It would also help if you could keep records of which symptoms your daughter has on the days that each test is done so that you can match up symptoms, doses of treatment, and test results. Obviously while she is a baby/toddler all you can record are visible symptoms. But when she is older and can voice her symptoms you can keep more detailed lists.
How is your daughter given her thyroid hormones? I'm assuming that they must be liquid since babies would choke on pills. It is worth keeping records of which brands of thyroid hormone your daughter takes too. Some people do better on certain brands.
For future reference... When your daughter starts taking pills be aware that people can be sensitive to some of the excipients and/or fillers. The usual things that can cause problems in all sorts of pills (not just thyroid) are lactose, mannitol and acacia. Teva does the only lactose-free brand of pills in the UK at time of writing and uses mannitol in its place. Despite this many people struggle with Teva and feel awful on it.
The biggest thing that your daughter has going for her is that her thyroid problem was discovered very early and so damage will have been minimised. In older children and adults it is common to be left suffering for years before a thyroid problem is discovered and treated. And in the UK at least, people sometimes have to become very ill indeed before the NHS will treat hypothyroidism.
Many congratulations on the birth of your baby girl. I hope you get all the answers you need here and also by the endocrinologist.
I was born in the 1960's before the prick test. At five weeks old, my parents found out that I had been born with only a partial non working gland, with no function - so at that time I was very poorly.
I am not good at results etc - but the ranges you have been given are not dissimilar to mine. Personally I am not a big advocate of the TSH levels, as they do not give a good indicator in my opinion. But you no doubt will be under the supervision of the Hospital throughout your daughters childhood - I went every six months until I was 16.
The one bit of advice I can give you, is that on the day of a blood test, do not give your daughter her medication until after the blood test, you will have a more accurate reading, (in my opinion) I am not sure what my dose was as a child, but I know at around five, my bone age was that of a seven year old, so my dose had to be reduced. I was always told to take my medication in the morning with water.
Once your little girl is on the right dose for her, she will thrive. I had no real problems growing up, apart from the above and a little bit of anxiety, also a bit of dry skin. But things are so different now.
If you ever want a chat, or if I can help you with anything, message me and I will try to help.
Wishing your little girl, good health and a wonderful childhood. Take care and best wishes to you both.
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