Thyroid issue in daughter, v serious, anyone with any experience?

[SirVixofVixHall]

My dd has just turned 12. She is whippetty thin and although she is often tired, we had put that down to school pressure and also started giving her iron as she is veggie. She has On the weekend DH noticed that her neck looked swollen, I took one look and could see it was a goitre. GP Monday morning bloods just through, God I am horrified, her TSH is 68 and her T4 is 5.7 I have Hashimoto's and when my TSH was 22 I felt dire, so I feel so guilty to have missed this. We are now being referred for an urgent appointment with a paediatric endo, it could be today but will probably be Monday. I am really worried, would appreciate any advice or experience, anything we need to ask/check/have tested etc.

My hypo 6yo is in the top groups for everything, one of the tallest in her class and incredibly bright. I had my thyroxine routinely increased by 25mcg in both pregnancies.

Poor wee toot has continued to be in and out of hospital. They can't diagnose juvenile arthritis until her joint pain has been for at least 6 weeks. She was bent double in agony on Tuesday, with stomach cramps as well. GP prescribed dihydrocodeine and said "be reassured, it is probably post viral and will just go away" . The hospital yesterday were livid on both counts and have given her diclofenac. It sucks not being able to help her. 😔

Oh, one of the odder possibly thyroidy things, she has delayed eruption of adult teeth - top middle teeth fell out last June 😲

Six is normal for adult teeth to start coming through , do you mean she has no signs of adult teeth yet, just gaps?
The IQ thing, how can that be quantified? How can one ever know if a child would have had an IQ five points higher or not? I wonder how they know that is makes a difference?

Latest bloods back- TSH still insanely high but has dropped a bit (50). T4 up to 10. She is not feeling any better though, and is really puffy. We see an endocrinologist next week .

Yep, just gaps at the top, after losing them 9 months ago. Dentist is going to refer her to orthodontist in June if they don't show up, but if hypothyroidism affects growth, I suppose that could include teeth.

10 is still the very lowest end of normal and if her body is having to work so very hard to even reach those levels, stands to reason she would feel lousy. Poor kiddo, hope you get good help from the endo.

www.thyroiduk.org.uk/tuk/diagnosis/getting_diagnosis.html
It can take some time when levels are so bad but at least you know the thyroxine is working. I'm also worried about my DD and she's just done the horizon medicals thyroid 11 panels. She's really tired it's taken ages to convince her to get the test!

Are they testing your daughter at the same time for each blood test? TSH is highest in the early morning so 9am blood test will be higher than at 11, 12 etc. It takes quite a while before you respond to treatment but it does look at though she could do with increasing to 75mg. I hope the endo can help. Is she getting her iron level raised too? Low vitD will also exacerbate her fatigue.

I watched an amazing documentary series called 'the thyroid secret' recently. It was live streamed free earlier this month. There was an episode about children with thyroid disease and hashimotos.It was full of really amazing information. You can Google it - The Thyroid Secret by Dr Izabella Wentz. I bought the series and am happy to share my digital copy if you send me a PM.x

The IQ thing, how can that be quantified? How can one ever know if a child would have had an IQ five points higher or not? I wonder how they know that is makes a difference?

I think this is one of the slight 'criticisms' of the research though it's accepted to be something not to be dismissed if that makes sense. There's different sorts of iq too one could argue.

Is there any way they're raising thyroxine slowly to avoid it being too sudden on her system? I do know that can occur. A friend is going through post partum thyroiditis and went to a private endo. She was put on 50 for 2 weeks to be then raised to 75. However her tsh was only 7 - treated as she's been through a phase of hyper thyroidism.

It does need to be much more poor thing.

OP your thread encouraged me to get my daughter tested yesterday. The results show she hasn't got Hashimotos. Her FT4 is low in range at 14 (range is 13 to 23). Total T4 is also bottom of range so I'll monitor this now.
What surprised me though was how low her Vit D was at 31. Marked as low and needing supplements. Her B12 was marked as insufficient at 282 and her ferritin at 50 could be improved to hopefully 100.
She's been keeping how drained she's been feeling to herself. I didnt known and she hates taking supplements but now she knows she needs to. She's 15.
Just wanted to share with you as its not always tested and does contribute to fatigue and lack of interest in things you used to enjoy.

Yes I need to ask for D3, B12, and Ferritin tests. She is still no better . We see the endo on Weds so I will report back then. Swat that is v kind of you, I'll pm you.

I think it's appalling that they haven't tested for B12, folate, VitD and ferritin considering they tend to be deficient in thyroid sufferers . They should be doing all they can for her as thyroxine isn't well absorbed when deficient in these other things. I hope she they do more for her on Weds.

No one has tested me in 20 years till I was ill after my son. And didn't do folate. Endo didn't do folate but did to Addison's test on basis if not had a period for 2 years, despite bf all that time he did mention ferritin a bit low at 55 though so he did know that's an issue.

Hope the appt goes well with endo.

Hey Vix, how is your daughter, how did she get on with the endo?

My daughter had a drastic deterioration the week before her birthday (second last week of March), her pain went through the roof and thorough physical examinations in the hosp caused her to go into shock - shaking, vomiting, very high fever. She was put on a medium dose of diclofenac and that is helping to a degree, but she is still so sore.

Three weeks on thyroxine and no obvious change yet, but she is on the lowest dose. Her rheumatology consultation has been brought forward to next week (from May 15th) then she has endo the week after. She is also being referred from optician to opthamologist for headaches and visual disturbances.

It's all exhausting. We made a comprehensive list of her symptoms to take to appointments, and she is drawing a picture each day of what hurts and how much (orange or red) as she is very shy and it hopefully will help her communicate her experiences. It's a lot for a 7 year old to deal with. We had really had hoped the first GPs were right and it would turn out to be a short-lived post-viral thing, but as the weeks stack up, it seems unlikely.

Oh your poor little girl tanyadm. That sounds horrible for her and for you. I really hope she is pain-free soon and feeling better.
My dd's appointment with the endo went well, he was really nice, young and approachable, and she liked him, which helps a lot as he has to talk to her about growth and puberty etc.
He upped her thyroxine again to 75mcg. More bloods in three weeks and I'll ask them to do ferritin, B12, Vit D too. He said her iron hadn't been done, but her haemoglobin had, and that her levels suggested that her iron levels were fine.
Next appointment is in a month's time, I'm hoping she will feel brighter by then. She is still exhausted and chilly, but has only been on 75 for a week, so too soon to tell how she will do on that dose.