Thyroid

[CowboysfromL]

Hi everyone,

My DD has had ongoing issues with being unable to gain weight since birth (she was born at a healthy weight but continued to drop off the centile chart) she is now 17 months old and her paediatrician is leaning towards thinking she has an under active thyroid - Hypothyroidism. She needs lots more tests done to confirm. This is obviously devastating news to find out that your little girl has a serious health problem that can only be treated and not cured. I'm just looking for anyone who can help me with their own experiences with thyroid issues with their kids or themselves? Some reassurance or even some tips, advice and stories would really help me to deal with this news. Thank you in advance x

I’m not sure why hypothyroidism would cause someone not to gain weight. I have hypothyroidism and only ever have problems with constantly putting weight on tbh. Maybe it works differently in children but I’d be surprised. Are you sure she didn’t mean hyperthyroidism I.e too much thyroid hormone?

If it is hypothyroidism. It’s nothing to worry about. You take pills every day to replace the hormone artificially and that’s it really. Doesn’t stop me doing me anything and I’ve known people who’ve had it since they were children. Annual check up and extra care during pregnancy to make sure a good level of hormone is maintained is all that happens extra. It’s probably more scary for you than it will be for her.

Thank you so much for your message and your reassurance. She has very low levels of T4 and TSH so it's not a straightforward diagnosis. The doctor told me that the symptoms can display differently in children, but yes all the research I have done so far says it normally leads to weight gain not loss

Anyway thanks so much for letting me know your experience and that it's not as bad as I think!

Going through the same thing with my 12 year old but the doctor has said he is boarderline overactive - we are being referred under private health.

From what I gather GP's arnt great with thyroid issues so hopefully you have been referred.

I have congenial hypothyroidism and have no thyroid. I’ve taken thyroxine my whole life so I don’t know any different. If you get a good paediatrician who keeps an eye on your daughters bloods as she grows. I was quite a skinny child but gained a lot in puberty and when pregnant, I feel the cold a lot and can get quite tired but it doesn’t affect me much in life except for taking daily meds. But I suppose I don’t know any better as it’s all I’ve ever known. Your daughter will be cared for by paeds as a child though, gp don’t tend to deal with children with thyroid conditions. I’m also a paeds nurse. Hope your daughter is ok op and gets the best care, don’t be afraid to ask questions and get second opinions

Thanks so much for the new replies. Yes my daughter is seeing the consultant endocrinologist paediatrician at our local hospital so luckily we have someone that knows their stuff. The only problem is (maybe due to Covid) his waiting list for appointments is over 6 months from now until we can see him again. That's a long time in the life of a 1 year old who doesn't have enough thyroid hormone! Am seriously considering finding some money and taking her private to be diagnosed.

It's reassuring to hear that you can lead a totally normal life under medication and that it hasn't stopped you doing anything. Also interesting that you didn't gain weight as a young child. I guess I'm just searching for answers while we painstakingly wait for diagnosis!

Thanks again everyone, you've really helped to put my mind at rest x

I was born with congenital hypothyroidism. It when undetected for a few years and also caused vitiligo, also an autoimmune disease. If you have one you are more subjectiical to other autoimmune diseases but this does not mean they may occur. However, I have made it to 39 with relatively good health. Weight gain is always an issue since hiting puberty but if I work at it it's manageable. One symptom Iv never been able to shake it feeling cold. I get yearly blood tests to check my thyroid function but my range tends to be ok. One thing I did struggle
With was being responsible for taking my own meds when I was a teenager. It took a long time to take them properly and understand the effects of not taking my meds. I think being a Stuborn ass teenager that "knew" everything didn't help 🤣 its a very livable condition.