Baby with elevated thyroid levels? Advice needed

Hi

My son is 16 weeks old and was diagnosed with Optical Nerve Hypoplasia (ONH) and as a result had a pituitary function test. The results received were as follows:

TSH 5.8 and T4 14.8.

His peadiatrician has suggested retesting in 2 to 3 months. What are the implications to my son of this. Should I push for further tests or just wait 2 to 3 months.

12 Replies

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  • This must be a very worrying time for you. Although I might not be able to answer your question as well as you'd like, one thing I would advise is that if you get worried about your son's health before his next appointment, don't hesitate to contact your doctor. Remember that you know your son better than anyone and if you feel something is not right, make sure the doctors listen to you.

    Did you have the reference ranges for these results? It is not easy to tell for sure what's going on without reference ranges because they vary from lab to lab (different techniques etc) and for different age groups.

    From what I know, his TSH is high which suggests an underactive thyroid. I don't know how high this is for a baby or whether treatment would normally be warranted at this stage. If you feel he needs treatment (due to his symptoms) it might be worth talking again with the doctors.

    I'm not sure what is considered a normal T4 for a baby and the reference range for this test varies wildly from lab to lab anyway. If you can get the reference range from your doctor this would be really helpful.

    It may be that his TSH is slightly elevated (suggesting hypothyroidism) but his T4 is in range still. This may be why they are waiting. Perhaps they feel it could be a temporary, borderline thing and want to make sure. It seems to be normal procedure to re-test after a couple of months but if you feel he is deteriorating please go straight back to your doctor.

    I'm fairly sure there are other members on here with some experience of this so hopefully they will be along soon. If not someone else may be able to find more information for you.

    If you want to know more about thyroid disorders in general, you may find the main Thyroid UK website helpful thyroiduk.org.uk/tuk/index.... The menus are on the left hand side.

    I'm sorry I couldn't give you a more definitive answer but hopefully someone else will be able to. In the meantime please do ask whatever questions you need to and we will be here to support you where we can.

    Wishing you and your son all the best

    Carolyn x

  • CarolynB has said pretty much everything there is to say.

    Please do get the reference ranges for the appropriate age ranges. They do vary.

    Never assume that a doctor is using the correct ranges. They make mistakes - or do not even realise that special ranges exist.

    Hypopituitarism is a possibility. That could mean that TSH simply cannot go up high enough. If that is the case, you cannot trust the TSH to be reflecting the real state of thyroid hormones. So you have to consider the Free T4 test.

    It is possible to test for pituitary response to TRH and if the paediatrician is willing, that seems sensible.

    Has he had any other tests such as MRI?

    (I have no medical background so do not rely on anything I write.)

    Rod

  • He has not yet had an MRI as the doctor said that he would need to be. sedated and ventilated due to his age so we thought it best to defer this as he has already been through so much - he was born 9 weeks premature, had to have surgery for a perforated bowel and is going through the Ponsetti treatment for bilateral talipes (clubfeet). With being diagnosed with ONH the MRI and pituitary function tests were the next course of action as in some cases there are mid line defects including lack of development in the middle part of the brain. At the same time he had additional tests which showed he has a low level of phosphates.

  • You have both been through a lot :( I really hope he gets the best possible care.

    xxx

  • What a very difficult time for you.

    Obviously the situation is way more complicated that some. And I for one know little outside the narrow borders of thyroid disorders.

    Wishing you well.

  • Thanks for your response. I'm seeing the doctor in 4 weeks anyway I just want to be a bit more knowledgeable so that I can ensure that he gets the best treatment.

  • Hi, I just wanted to respond and add my heartfelt best wishes.

    but I cannot add to others' informative posts, except TSH is only one of the pituitary hormones (as my Dad had pituitary & growth hormone problems).

    Jane x

  • here is an example of the ranges in one lab (Brighton), please bear in mind tho' that ranges vary per lab - so just an example reference, and other factors need to be taken into consideration.

    pathology.bsuh.nhs.uk/Patho...

  • Thank you. Based on these he is in normal range which is a bit of a relief.

  • I know this lands really pedantic, but if you behave to deal with the medics, you will need to get it right because they can be a miserable lot.... Your son has elevated pituary hormone levels. (TSH - thyroid stimulating hormone is produced by the pituary ) But most likely he has low thyroid levels, hence the raised tsh. There is information about levothyroxine dosage for babies on the British national formulary. Its:

    Neonate initially 10–15 micrograms/kg once daily (max. 50 micrograms daily), adjusted in steps of 5 micrograms/kg every 2 weeks or as necessary; usual maintenance dose 20–50 micrograms daily

    Child 1 month–2 years initially 5 micrograms/kg once daily (max. 50 micrograms daily) adjusted in steps of 10–25 micrograms daily every 2–4 weeks until metabolism normalised; usual maintenance dose 25–75 micrograms daily

    At least if they prescribe meds you can check they are giving a correct dose.

    Really hope it is a temporary blip and he is soon ok.

    Xx. G

  • Hi I just want to wish you the best as I have a 15 week old and we had a bit of a rough start too . Keep strong and like the girls said have as much info as possible. I hope you will get things sorted soon. Sending u my very best x

  • Thanks everyone for taking the time to respond. I feel armed with a bit more information so can discuss things rather than be talked at. :-)

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