To be terrified about my daughter's thyroid

[Greengreengrassss]

My daughter is 7 and her TSH levels have been creeping up for a few years now. The most recent result has come back at 10. Her T3 and T4 are normal but she does have thyroid antibodies.
Her paediatrician has sought advice from endocrinology and they've said she doesn't need treatment unless her levels go above 20 but want to have repeat tests to keep an eye on it.
She has a genetic condition and her auntie, grandma and great grandma all have an underactive thyroid.
I don't want her to end up on medication for the rest of her life and dealing with symptoms.
My understanding is that her pituitary gland is working over time to keep the T4 and T3 levels normal because the antibodies are attacking it.
I feel like it's only a matter of time before things start to go downhill.
I just feel so sad for her. She's faced so many challenges and overcome them but I feel as though the odds are against her.
Am I being silly? Does anyone have any experience of this, especially in children? Is my understanding correct?

I'm sorry you are worried about your DD, I don;t know if my experience is of any use to you because my DD is an adult, she has hashimoto's disease. I suspect it started when she was younger as she had always been a child who tired easily and was always very thin.
Anyway she started getting more obvious symptoms as a young adult (hair falling out, extreme fatigue, goitre in her throat etc).
It is hard to think of being on meds for the rest of your life, and no one wants that, but my DD has felt so much better since she started meds and got the disease under control. Really it is just one small tablet a day, it doesn't have any side effects, and although it can take a few adjustments to get the levels stable, once it settles it is just a question of blood tests every few months to check all is OK.
If it is well medicated then the symptoms will be well controlled.

I've also got thyroid disease (definite genetic component) but Graves disease in my case. I've got pretty good at knowing things don;t feel quite right and I just get a blood test and get my meds adjusted if necesary.

I hope things go well for your DD.

I was diagnosed with hypothyroidism at age 7. I’ve been taking thyroxine every day since then and I’m now 47. It hasn’t affected my life at all, apart from having to take the medication and having regular blood tests - usually once a year. I’ve had 2 DC and there were no problems with my pregnancies.
Hope that reassures you a bit.

I know it’s uncomfortable to think about your 7 year old potentially needing to be on medication for life, but in reality, it’s not that big a deal, and I think it’s important to regularly remind yourself of that. People deal with far worse than swallowing a few tablets every morning - Type 1 diabetes is a much more involved illness, for example.

Over half of British adults take daily medication - and it’s not just older people. Millions of young to middle-aged women take the oral contraceptive pill everyday, and your dd may well be among them in 10 years or so.

We’re lucky we live in a time where these symptoms can be easily controlled with a simple pill.

We’ve actually got an appointment at the Evelina on Monday for suspected Hasimotos. My daughter is 14, has a goiter (and an unrelated cyst in her neck). Thyroid function was ok last time it was checked but thyroid antibodies through the roof. Always tired, always cold and keeps complaining that her legs really hurt. Unsure if the legs are related to the thyroid or caused by something else but hopefully we’ll know more on Monday.

edited for typo.

No experience of thyroid but lifelong meds aren’t that bad, I promise op. I’m on a daily tablet for eczema and have blood tests for it twice a year. It’s not particularly disruptive - and I’m scared of needles 😂

Thank you all for your reassuring comments!

We've battled so many hurdles it just feels like a bit of a kick in the teeth.

I guess if things do go downhill and she starts medication then we can hopefully get levels correct before she embarks on her adult journey.

I think I just feel a little helpless

I feel similar. My DD is AuDHD and this just feels like yet another thing she will have to deal with.
I can update you after our appointment on Monday if you like? Might give you an idea of what’s to come?

I have an underactive thyroid and will be on meds for the rest of my life. It's a tiny tablet and an annual blood test. Really no Biggie, compared to the awful symptoms I went through for years before a GP actually listened to me properly and I got diagnosed.

Spin it another way op. If your dd had asthma would you be ok with her taking a couple of puffs of an inhaler every day? Both have grave symptoms if not managed properly but can be medicated for a next-to-normal life.

Plus, free prescriptions for life, yay!

My DH was diagnosed with underactive thyroid as a baby. He's been on thyroxine ever since. It has had no impact on him apart from not being able to join the services. He has yearly blood tests to check his levels but that's it. He's now nearly 50.

Honestly, I know it's scary but once its under control it really isn't a big deal & she will feel so much better for taking the medication.

My DD was diagnosed with the same thing as a child, including the antibodies. She just has a yearly thyroid test and has occasionally taken a little medication when adjustment is needed. It's not a big deal for her to manage or live with.

@Trinity69 that would be great, thank you!!

I understand it's a tablet and I will help her manage anything that comes her way but I just wish it wasn't something potentially on the horizon.

She's had problems with her eyes, ears, allergies, mobility, development, learning etc. I felt like I could actively do something about all of those things but this feels out of my control.

Thank you all!

I’ve had pituitary issues and complex autoimmune issues my whole life - I’m 45 now. I have Addisons, lupus, Sjogrens, hypothyroidism, long term anaemia, prolactinoma, and basically my pituitary is shrunk and doesn’t function so doesn’t produce any of the hormones it’s supposed to. My thyroid was the first thing to malfunction. I’m saying this not to scare you but to reassure you - it’s really okay, you learn to adjust and view the medication as replacing things that should be there anyway. It’s like having a deficiency. Try not to panic. Yes it’s annoying (tbh Addisons is by far the worst thing I have and that’s incredibly rare so unlikely your dd will ever have that), but it just becomes your new normal.

Similar here. I’ve been on medication since age 8. No issues with pregnancies or symptoms.

My ds has been on levothyroxine since he was 11 days old. He’s now 17 & just needs blood tests periodically to check his levels.

We had our appointment today. Antibodies were >999. No bloods were taken today as daughter not a fan, but a small dose of levothyroxine was prescribed as she has symptoms of an under active thyroid. At the last blood test the thyroid function was fine but she’s had symptoms for a while so they would like her to try the medication. Repeat bloods in 6 weeks to see what’s going on and a follow up appointment in 6 months.

I have hypothyroidism. It's really not that big a deal.

@Trinity69 thank you for letting me know how it went! I hope she feels some improvements soon.
I spoke to the paediatrician the other day who said her levels aren't high enough to prescribe medication but we have to have regular blood tests to keep an eye on things

Yes it was similar with us as her thyroid function was actually fine but because she’s symptomatic they’ve prescribed a teeny tiny dose just to see if it helps.

I have Hashimoto's and my legs really hurt before I was diagnosed, and my hips too. In case it's helpful.

I keep my tsh under 2, anything over that i get symptoms. My consultant has said tsh should be kept low,ideally 1-3, women who have constantly high tsh levels (meaning thyroid is not keeping up, antibodies increase and this increases thyroid cancer risk). 10 is insane, i cant function with tsh levels above 4

read up on diagnosis parameters if tsh is 10 or more,more than once its enough for diagnosis and treatment- dont let doctors put it off, it is very hard to have untreated hypo and it can also cause diabetes,menstrual disorders, obesity, when she becomes young woman fertility problems etc- its only a tiny tablet or two once a day, not a disease like T1 diabetics who have to go around with bag of needles and insulin

This. Waiting for a level over 20 sounds insane.

It's really not a problem, I was diagnosed hypothyroid about 40 odd years ago and am now 70 on my next birthday. Once your doctor works out what dose she should be on, she won't have any symptoms and will just have to have an annual blood test to make sure tsh levels are OK. Try not to worry, it can be easily managed and she will feel better once she's started on thyroxin.

I'm sorry to hear about your daughter, but please remember it's not 'medication' for life, it'll be hormone replacement i.e. thyroxine, that she can't make adequately herself. I have autoimmune hypothyroidism myself, but started late in life at 60 yrs old. It is a difficult thing to have as it affects so many other parts of the body. I think waiting for TSH to hit 20 is quite inhumane, personally, especially if she has any symptoms.

Sadly it can't be reversed, but replacement hormone can be very successful although over a lifetime would probably need tweaking. Also she will need to make sure her nutrient intake and levels are good particularly Vit D, B12, B2, iron intake and folate.

You are extremely fortunate you are able to say that, it's not a small deal for some of us. However I'm glad if you are doing well as the alternative really is awful.