Information please

Hi all

My son is only 10 years old and has been diagnosed with hypothyroidism.

I'm finding it very difficult to find information for someone of his age.

Any other parents or carers be able to help?

I'm looking for some way of explaining it to my son. He has some learning issues, DCD , dyslexia and is also hyper mobile, he takes thing really literal and seems to worry a lot about what others say about him. He isn't very athletic and gets bullied at school. I'm just wanting to find away to explain to him it's going to be OK in the long run.

Thanks for reading

13 Replies

  • First of all, welcome - you're in the right place. Lots of experience and knowledge here and hopefully someone with similar circumstances will post soon.

    But just wanted to say from the off - did the doctor give any indication of how long your son has been hypothyroid? Because here's the thing (and modern doctors often don't realise this - unbelievable I know), learning difficulties, dyslexia and lack of athleticism are symptoms of hypothyroidism. It may well have been a poorly functioning thyroid all along that's caused many of the problems he's experienced.

    Many people with hypermobility also seem to have hypothyroidism. There doesn't seem to be a direct connection, just that it's something that seems to occur together.

    I think I'd explain it to your son this way: the thyroid, even though it's tiny, is really important. It makes a special chemical called thyroxine, and this chemical is what makes every tiny bit of his body work properly - like petrol makes a car go, thyroxine makes your body and your brain go. Without enough of it, your body just won't go very fast. Sort of like what happens when your remote-controlled car is run by batteries and the batteries are running out - it gets slower and slower until you put new batteries in. So taking thyroxine is like putting batteries in.

    It's not quite like that of course because it takes a little while to get thyroxine levels up enough to the right level, so the doctor may need to put him on higher doses over time until he/she finds exactly the right amount.

    Just a few notes for you - get hold of his thyroid blood test results and keep records for yourself. Doctors tend to take a very conservative approach to management and err on the low side of medication, when just a little bit more is the difference between feeling better and feeling well. And when you've got those results, by all means post them here for advice. We're not doctors but between us have decades of experience, which counts for a lot.

    And one last thing - get the doctor to check out his Vitamin B12 levels, ferritin levels and Vitamin D levels. Low levels of all of those often go along with hypothyroidism, especially if it's been missed for a long time, as a side effect of hypothyroidisim is a poorly functioning gut which doesn't absorb nutrients very well.

  • Oh, and regarding dyslexia and other symptoms, have a look at this post from about a year ago. Lots of symptoms listed in an old medical textbook that many modern doctors don't immediately connect to hypothyrodism - but used to, just a few decades ago...

  • Thank you. I really appreciate it. So much make sense now. After posting I'd see a few articles linking dyslexia to it. My sons always had problems. I read a bit on Wikipedia which made me think back to his birth. Firstly he struggled with his heat for the first 2 days and his eyes were yellow and his skin was too, but not bad enough to warrant going under the light, at his 8wk check the doctor we seen commented about his head size being on the large side. At 15 mths he took a bug that landed him in hospital on a drip and after that he didn't quite progress like other kids his age. So I really do think now its some thing he has had since birth.

    I only got the phone call yesterday lunch time to tell us the results of tests done 2wks ago. They just said his thyroid is under active and they were starting him on medication, we live an over an hour away by bus to the hospital, I don't drive and money is tight as I don't work, I've a chronic condition myself, so one of the nurses from the clinic kindly dropped it on her way home from work. Our local chemist doesn't stock what he needs but have ordered it and will be here on Monday.

    Its all still new. But I'm glad I found this site x

  • Always get a print-out of his blood test results, with the ranges for your own records and you can post if you have a query.

    When he is due for his next blood test, make the earliest possible appoint and he should fast (he can drink water). Allow 24 hours from his last dose of levo and the test and he can take levo afterwards. This keeps his TSH at its highest level as it drops throughout the day and dotors only appear to take the TSH into consideration.

    Also ask GP to test his B12, Vitamin D, iron, ferritin and folate.Ask (may not do it) if he can have a Free T4 and Free T3 blood test initially). This lets you know how much FT3 is in his blood for him to function well. T3 is the active hormone required in all of our receptor cells, the brain containing the most. T4 (levothyroxine) should convert to sufficient T3 but doesn't always. It is a big learning curve for all of us on this site to get back to good health. Other thousands of people do fine on levo but the ones on this forum don't.

  • When the nurse called yesterday she said we'd be seen in 2mths for a follow up and that was all.

    Can I request Hus results from the hospital or my gp?

    We live in Scotland so he gets his tests for free.

    Is best to to keep a dairy or folder to keep everything together?


  • The 'Free T4/T4' refers to the levels of free hormones in the blood, not that you get the tests done for free😊 x

  • Ah thanks. Im picking up loads and know there is even more to learn.


  • When its a child it might be more difficult, particularly if he hasn't been well for a while. They don't know much about symptoms but just how they 'feel'.

    I would make an appointment in six weeks weeks not eight. That should be long enough to know whether the dose they've given is helping and we usually need an increase when newly diagnosed around every 6 to 8 weeks.

    Keep his blood tests in a folder and you can post if you have a query with the ranges. Always make sure the ranges are on the print-out.

    You might be interested in this Scottish Woman, Lorraine Cleaver, who has a Petition in the Scottish Parliament for better treatment for patients who have a dysfunction of the thyroid gland. She also has a Facebook page too. Your son might do fine on levo

    but it's good to know the 'other side' too as some doctors - just looking at the blood tests, say 'you're

    fine' when you feel awful and aren't concerned (or even know) about clinical symptoms.

  • Thank you.

    I'll have a look at her page.


  • He is getting bullied partly because he is ill. Unfortunately healthy animals often pick on sick ones. Should improve.

    This is interesting, from the uk assoc of paediatric endocrinology.


    Thyroxine by mouth replaces the natural hormone and so provides excellent treatment. The child or adult with hypothyroidism is restored to full health in all respects. In those whose gland has been destroyed there is rapid catch up in growth and development and all previous symptoms resolve. There are sometimes concerns during the return to normal thyroid function in children. The change in personality and energy may be dramatic and for a while behaviour and school performance may deteriorate. Parents and teachers may be surprised by the change in behaviour although this will become less of an issue as time goes by. Other concerns may include aching of the joints and some loss of hair although this does not usually become a cosmetic problem. All these problems are transient and the child is soon fully well. No activities are barred, no illness poses a special threat and no other treatment is incompatible with thyroxine. "

    So don't be surprised if there is a bit of a blip.

  • Thank you. I wasnt aware of the personality change. I habent spoke with his school yet. Ive a meetin midweek with them to look at his support plan. Lots may need changed over time. He goes to high school in a year and a bit. Im hoping he is balanced better by then.


  • You are entitled to copies of his test results.

    Have a look here:

    (Or find the Scottish equivalent!)

    Please be very aware that for many tests, there are different reference ranges in children. This is definitely the case for thyroid tests. It is important that the results are not interpreted against standard adult reference ranges.

    For example at ONE lab, thyroid function reference ranges by age are here:

    (Don't use these ranges. They are for illustration only. You MUST get the ranges used by the lab that did the tests.)

  • Thank you. Im learning loads.


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