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.

I am so glad that post made you feel better OP! I actually think that having hashi from such a young age gave me the advantage of being really tuned into my body (you learn to have your antennae out for how you feel in your body, because any good endocrinologist will take that as seriously as your blood results (with the exception of pregnancy and ttc of course)). It also taught me to look after my body and not to take my health for granted. Good things to learn as a teenager I think! Cuddle your dd and give her some space to take throngs slowly, to gather her thoughts and energies. She will soon be on the right meds and will be bouncing all over the place ( in a good way).

Hi OP my story is similar to verybookish - I was diagnosed at 14. My only symptom was that I went from loving school to hating it! (Apparently being depressed and lack of motivation is a symptom). I'd always been such a little nerd my family knew there must be something medically wrong! I'm one of those who feels it immediately if I go over 3. I had completely normal teenage years, got my love of school back, went to Cambridge, did lots of sport, now a solicitor. It doesn't affect me at all. I forgot to tell DH until we'd been going out for over a year.

I'm 30 now and have been on the same dose (150mcg) since I was 18. I started at 50mcg and went up gradually over the next few years until it stabilised.

It's great they've picked up on it as it's rare for children. Your daughter will be totally fine once she's on the right dose.

Thank you so much harriet and verybookish for posting . Harriet -my dd has been similar, she is brilliantly clever, and really lost motivation and spark- in fact that happened markedly in years 4/5, so I now wonder if she has had issues for that long. We put it down to boredom. She skipped year 6 and went up to high school at 10, and did get her excitement about learning back for a while (although very tired), only for it to plummet again this year. We assumed that she was worn out from having a fairly heavy workload so young, but now I can see that she has lost her enthusiasm for things , which was a marked feature of my own thyroid issue. Dd has always been so bouncy and full of fun and the joys of life, today she was crying, just too exhausted to face school, lessons she normally enjoys, so we have her at home. She's stayed in bed reading, again very unlike her. She's been on 25mg for two weeks now, but if anything she seems worse, which is starting to worry me now.

Her body needs the rest to recover. Again, anecdotally I have read that it's common to feel worse when people start taking levothyroxine- my endo explained that it happens frequently. 25mg is a very, very small dose and it could be that she needs thyroxine.

Can you keep a diary of her symptoms? I found doctors responded well when I could give specific examples of what I felt, what I was capable of, what kinds of things were beyond me.

Although this is for adults, it might be worth looking at the symptoms list on thyroid uk

www.thyroiduk.org.uk/tuk/about_the_thyroid/hypothyroidism_signs_symptoms.html

She still isn't showing any improvement. Exhausted all weekend, and she had a piece of homework to do that she got into a complete panic about, she struggled to start it, had a tearful strop, kept storming off- I could see she felt competely overwhelmed. DH sat down with her and calmly went through what needed to be done and stayed with her as a support, she then did go through it and got most of it done. She says she manages like that in school, that once she gets started she can make heself keep going, but then when she stops (at the end of the school day) then she is just flat and zoned out and can't summon up the energy to do anything.

Bless her. Must be so hard. I don't think you should expect her to start feeling better on 25mg. She'll need her dose raised before she starts feeling a bit better. It's early days and the dose needs to be increased gradually. Can you get ask the GP to test again and to increase 50mg? Also test all her vitamins.

She was in tears much of the weekend . I spoke to the paediatrician earlier and he is going to get advice and then get back to us. She is definitely more unwell, she is missing all her favourite activities as she's too tired, she just wants to slump in front of the tv under an eiderdown and not move. She is is school today, but she went in late.

It really sounds as though the low dose is making her worse. I hope they increase it as her levels were so bad. You'll need to keep pushing the doctors so that act quicker for her.

We had more bloods this morning at the hospital, they tried but failed to take blood yesterday so we had to go back (hospital is an hour away, so all v stressful for Dd) Doc has just called with the results, not all are back but her TSH is now over 100. Her goitre is larger too. They are upping the dose to 50mg, but that seems really low under the circs. I suppose it's because she's so young? I am so worried about her.

That's high and it means her thyroid is struggling. Her FT4 and ft3 will be low so she'll not have much energy. Make sure they've tested b12, vitD, ferritin and folate as these tend to be low when thyroid is struggling. She needs them to be at least mid range or they'll contribute to her feeling exhausted.
Levothryroxine needs to be increased gradually but they should keep a close eye on her to increase it safely. I felt much better when I went from 25mg to 50mg but it takes a couple of weeks. You're doing all you can at this stage.☺

My tsh was over 100 when j was diagnosed. My gp initally put me on 125mcg of levothyroxine but the endo reduced that to 100mcg as it was too high to start with. 50mcg should make some difference but it may need to go up again.

What are the pediatric NICE guidelines?

Could you contact the British thyroid association for advice? Or thyroid uk? I really feel that you need specialist advice.

I had hyper as a teen - was pretty ill but has had no long term effects on me. I just became hypo eventually as a young adult, which is apparently common in hyper kids. I know your dd isn't hyper, but I thought you might like to read a positive story again

In your position I think I would go to see an endi privately in London despite the travel. When I was diagnosed with hypo the GP initially gave me quite a low dose of Levo but the ending bumped it up immediately. They are much more confident about dosage than gps. I would privately go to London to see someone - you would get an appointment within ten days via Portland I would think. Simultaneously I would push GP for NHS endo referral and not volunteer you are going private. By the time the nhs appointment comes through you can switch to NHS endo.

Sending you

Ending? Endo!

I think we may have to do that, the problem has been that paediatric endo's seem to be few and far between. The two I've found in our nearest big city (two and a half hours away) are both NHS only. My GP can't refer out of area and so has referred us to the paediatrician who seems confident that he can deal with it as he consults with the PE in the city. I worry that things lose in translation between what I say to the P and what he says to the PE. Anyway we have to speak to him on Monday if poss as she is still getting worse. She isn't coping and looks really puffy. Swollen neck, puffed eyes. She's in a panic about how she will cope with her Summer exams. She's also meant to be going on a school trip abroad in July, I don't know if she will be well enough, as it will involve very long coach journeys and then sharing rooms with very chatty girls, I can't imagine they will get much sleep.

Hi op

I was diagnosed at your dd's age and was put on 25mcgs this was 22 years ago tho!
I'm on 200mcgs now I seemed to have a massive fluctuation after each of my pregnancies - no idea why.

It is such an awful thing but is being recognised a bit more now

Well Dd is off school,again- she has been on the sofa under a duvet all day. She is saying that her eyes hurt, and that she feels really tired. (She said today that her eyes always hurt when she is tired). Her eyes are puffy, particularly on the upper eyelid. Five days now on 50mcg, but she still seems to be getting worse rather than lifting. We are going to speak to the paediatrician again asap, and then think about what to do.

Really sorry to hear this. Poor love. And you too, I know how stressful it is when DC are not well and you don't quite know what to do.

Hi op, I'm so sorry to hear about your daughter. Hopefully they will put her on thyroxine immediately and monitor her closely.

I developed it at 20 and like your daughter became very thin and frail. It weans muscles rather than makes you put on weight, so she'll take a while to build up again, but she will. It might take 6 months to be properly well. You could ask the hospital about whether something like complain might help too.

I suspect I was slightly hypo while growing up - I was a late developer and slow grower. She may find puberty is delayed though when treated it might be fine. I was still growing at 18!

Long term when she's better I'd recommend encouraging bone building exercise to keep strong and healthy. Hiking, dance, martial arts etc. As a young person on thyroxine i noticed staying strong and fit really helped. Bone density is laid down/built up during adolescence and thyroid can affect it.

I'd strongly recommend contacting the British thyroid foundation - they can both give advice and support to you and your daughter as they do focus specifically on children with thyroid disorders, and it's not very common.

She won't be able to concentrate much at school for a long time so do discuss with teachers. (As a teacher I couldn't when poorly!)

Hope she better soon

www.btf-thyroid.org/projects/children

Short film about thyroid disease for children.

The BTF are the charitable wing of the British thyroid association (of endocrinologists) and supported by medical advisors.

Personally, I'd give them a ring tomorrow and consider joining them.

I know suffering from this as a young adult, with no one else having any experience, was a very lonely experience and so for your daughter it could help to connect with other teens with the illness.

Don't forget there's often s symptom delay as levels adjust. It has a 10 day half life so takes around 2 weeks to begin to reach full level, 3 months in total for levels to be stable and affect symptoms.

I would honestly ring the BTF in the morning for advice.

It's awful any way but especially when you're young. Can she stay off school for s bit? I had to write my dissertation in 10 min chunks snd the lie down. I was very frail too and any effort to lift things, climb stairs etc was impossible.

I did school aftermoom only for a year when I had thyroid issues as a child - hospital signed off on it. I also had delayed puberty - periods started at almost 16 iirc but I have two children now, so don't panic if that happens. Cycle has never been regular - apparently that can be a legacy of thyroid problems as a teen.,

My periods were also at 16. However regular and extremely light till post child. Never any pain, but that might be me.

Interesting about periods, as my mother certainly had issues for many decades before being diagnosed with Hashimoto's. She started her periods at 16. I started mine at nearly 16, and was still growing at 19. I also have Hashi's and am now looking back and wondering how long it I really hope she isn't this sick for a year or more, Sanscullottes that must have been really tough for you.

Accidentally deleted a bit of text- should have read " am now looking back and wondering how long it was going one for. " Sorry!

sirvix, me too- I needed naps well into preschool and school years, was always tiny for my age (caught up eventually though; I'm now the same height as my sister) and always had chronic constipation. The ridges on my nails that I now associate with a little thyroid wobble (looking at one now; I know I may have missed some doses during a very busy time a few weeks ago) are very familiar to me as a teen. I was always bemoaning my split nails; now I've had a good few years or two I noice how strong they are.

I'm very glad we moved to the country when I was ten as I think all the cycling and walking, tree climbing etc will have done me good as my bones were growing.

I must say, I can attribute all of this to other things also such as iron and vit d, but I do wonder.