Dingle, TC, Headgirl - any others with little ones with ds or experience with hypothyroidism

[eidsvold]

It seems dd1 has hypothyroidism. We have been monitoring her thyroid closely and while her results have been relatively okay - the last couple are elevated and the most recent reading for one aspect has almost doubled in three months.

So we are starting medicating with thyroxine. Does anyone have any experience with this? I am just reluctant to start down this path although all I have read says getting the thyroid sorted early once it starts being dysfunctional is very very important - I just am concerned about starting on the path of lifelong medication.

I know there are plenty of parents on here who have to administer huge amounts of medication - I am led to believe this one is very important but can be tricky to get 'right'.

Any info, experiences etc very welcome.

Hi eidsvold. Can I ask why are you reluctant to use the medicine? Have they given you an alternative.
My sister has hypothyroidism, it was detected quite late (in her 20s), had it been identified sooner she wouldn't have suffer as much as she did. As far as I know there is no side effect at all, yes it is a lifelong medication, but it is absolutely vital. I would compare it to a severe diabetic taking his insulin, you just have to take it, there is no alternative.
It does not impact my sister's life in any way, she just takes one tablet a day as per her daily routine.

she is 5 and I was hoping to delay starting her on medication for life till a little later. I know it is vital and she has actually only been prescribed a very small dose and we will review in 2 months. She is under the paediatrician at the moment and I am thinking of asking for her to be referred to an endocrinologist for that side of her care.

From what I have read and discussed with the paed - there is no other alternative.

Tiny Socks - I guess I knew this was coming as her reading for that particular part was creeping up and above the normal range.

I just wondered how it impacted on others - I knew getting the dosage right is absolutely vital.

We have been prescribed the liquid for her at this stage.

eidsvold, I think going to an endocrinologist is definitely the best thing to do. He/She will know what is the right dosis. My sister (now in her 40s) still has her thyroid checked once a year to make sure her dosis is okay. I hope someone else comes along with more experience. But all I can say is that it is really really fantastic that they have detected it soon, and based on my sister's experience, believe me you will be doing DD a huge favour by controlling the situation sooner rather than later.
Good luck!!

Hi Eidsvold. DD3 has the yearly thyroid testing as recommended cos hypothyroidism is more common in those with DS, but so far hers have come back ok. As you prob know, I'm a nurse, and thyroxine is one of THE most common drugs taken on a lifelong basis by people of all ages, conditions, sexes, whatever. Either because their thyroid, like with your DD, is underactive, or strangely because it was overactive and too much of it was removed to rectify that. There isn't an alternative. I believe the only way to get the right dose is by blood testing.
I would feel the same as you about embarking on a course of life long medication - but the alternative is a real set back in her health and development, and the treatment is so successful. Hope you feel better about this soon, love to you and her xx

Sorry, no real knowledge or experience. Again DD has checks, not regular though-only after me chasing them up basically! BUT so far we have had no problems!

LeonieD - eidsvold is in australia, so this product might be an option there.
I have to say though, the website is not clear on its benefits over the preparation that is generally used, and which, if levels are tested regularly, is known to be safe, even in pregnancy. Do you know the reason why its not available on the NHS?

thank you for the info about thyroxine headgirl. I know it is important for her to have it - just was worried about the side effects and the close monitoring.

Hi Eidsvold,

DS2 is on levothyroxeine, one 25mcg tablet a day. It hasn't occurred to me that he may be on it for life - the neurologist in conjunction with the endo told us that his TSH was slightly elevated, and that such a small dose would not cause any harm, but it may help his development (he has unexplained global development delay).

I just add it to his cereal in the morning (presuming I remember), and the worst part was the chemist who refused to fill his prescription (just took it another one).

I don't see it as a big deal (compared with some medication some children need).

All the best,

Leonie - interesting stuff, and good news that you've found something that works. I wouldn't dream of prying it out of your fingers - whether you were, god forbid, cold and dead, or in your current warm, baby growing state All the best.