Carbimazole

[South11]

Hi

My daughter (age 7) has been taking Carbimazole along with thyroxine for the last 2 years . We have been advised to give her a trial off the medication to see how she declares herself. Obviously the main signs we are looking out for are weight loss and changes in mood etc . Are there any other things anyone would suggest we observe for?

[Hennerton]

I am so sorry your little daughter needs carbimazole but it is good that they are planning a trial without it. I presume she has Graves‘ disease? I imagine that whatever she was like before her diagnosis, is how she will be if her levels go up. Did you notice symptoms for a long time before she was diagnosed? How often do they plan to do blood tests? I think you will just have to watch and wait but I wish you lots of luck and hope that she will be fine.

[greygoose]

Have they tested her Grave's antibodies - TRAB or TSI?

[South11 in reply to greygoose]

Hi

Yes she has Graves’ disease . The reason for stopping the medication is to see if she goes into remission

[greygoose in reply to South11]

OK

[Marz in reply to South11]

I think the reason greygoose asked about the anti-bodies to confirm Graves is due to having seen several posts in the past few months that have revealed a mis-diagnosis. Members normally suggest obtaining copies of all test results with ranges so you can monitor progress and check what has been missed 😊

Did you see the actual results of the anti-bodies mentioned by greygoose ?

Hashimotos is auto-immune and you can swing rom Hyper to Hypo and back ... The anti-bodies are TPO & Tg. Was your daughter diagnosed by your GP ? - or an Endo ?

Really hope your daughter stays well.

[South11 in reply to Marz]

Hi

Yes we are under a paediatric endocrinologist- all the tests etc have been done . Today is the first day off meds and we have bloods booked in 4 weeks

[Marz in reply to South11]

Hope all goes well ... Have been on this Forum for over 7 years - like many others - so know from reading thousands of posts here - how important it is to obtain copies of results. Sorry to be a nag !! - have seen mistakes too often - even at Endo level I live in Crete and we have to keep ALL our own records - very grown up 😊 If you have any copies of results with ranges maybe you could post them so members could make the suggestions for things to look out for you requested.

[Valarian in reply to Marz]

The antibody tests for Graves’ are TRAb or TSI. If either of these was positive (they usually only test one or the other), Graves’ is confirmed. If they weren’t positive and thyroid levels were high, your daughter may still have Graves’, but there should have been more tests/investigations to eliminate other potential causes.

[shaws Administrator]

Your little daughter has my sympathies as I know what it is like to have an ailing child. Both mine are now adults but one has autoimmune conditions.

I am sorry yours has a problem with her thyroid gland - too young to realise why she's not been feeling well.

Members who've followed a similar routine will respond when they read your post.

[Valarian]

Hi

Most of those with Graves’ disease who post here at the moment seem to be on ‘titration’ (where the Carbimazole is reduced as thyroid levels come down) rather than ‘Block and Replace’ (where carbimazole dose is kept high enough to block natural thyroid production completely, and thyroxine prescribed to replace the body’s own hormones). There are pros and cons to each approach, but they appear to have similar outcomes.

The main things to look out for are probably the symptoms that took you to the doctors in the first place. One thing you might notice particularly at this time of year is if she seems to be very warm compared to others - walking around in short sleeves, not wanting a coat outdoors, throwing her bedding off etc. I used to annoy everyone by opening windows and turning the heating down, but a seven year old might not think of this ! She may also become very thirsty, and avoid dry food.

As well as mood changes, one symptom is anxiety. If you can, try to avoid transferring your own (natural) anxiety to your daughter - eg it might be better to assess how she is feeling through observation, rather than by asking her how she feels several times a day. Thyroid levels fluctuate naturally, and may take a while to settle.

@fruitandnutcase may be able to help with the specifics of Block and Replace.

Good luck !

[South11]

Thank you . Some really helpful tips here. She is really thirsty today so will keep an eye on that