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

(116 Posts)
SirVixofVixHall Fri 17-Feb-17 10:01:22

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.

SirVixofVixHall Fri 17-Feb-17 10:56:18

bumping.

Picklesandpies Fri 17-Feb-17 12:35:12

Hi,

Sorry to read about your daughter. Have they tested for thyroid antibodies? I had my thyroid removed 2.5 years ago when I was 30 after being horribly hyperthyroid. Are your results the wrong way around? I remember my T4 being over 100 and then off the scale at one point. I too was stick thin. I'm not sure what advice I can offer other than seeing whether she can have beta blockers while you wait for medication to take effect? That made a huge difference to me. You probably know a lot about it from your own experience though. I suppose I'm just offering a hand hold. I have two dds and worry about them getting it too.

Sorry if that's not hugely helpful. X

SirVixofVixHall Fri 17-Feb-17 14:54:37

She is very hypo rather than hyper, hence the results being the opposite of yours. They have tested for antibodies, but that test takes longer so we won't know for about a week. I have been telling her off for being flakier, thinking it was just puberty sad . I am really worried about the long-term impact of this on her growth etc

Picklesandpies Fri 17-Feb-17 15:05:16

Oh I see. I was confused about the weight loss as I thought you only lost if hyper. I don't really know the ins and ours of Hashis though.

I don't have much advice to offer other than our daughter was diagnosed with coeliac disease and was ill on and off for years and now we have changed her diet I can see improvement. I know it's not the same but it is an auto immune disease and I can relate to your worries.

I would be proactive and write a list of questions. Buy a pill holder so you can organise pills asap when she gets them and give her lots of love and nourishing food to build her up. And be kind to yourself. You are a great Mum, don't be hard on yourself. The fact you are so worried about your daughter says all you need to know. X

SirVixofVixHall Fri 17-Feb-17 16:28:17

There is a link between coeliac and auto-immune thyroid disease, she's been tested for coelic too but no results yet. DD hasn't lost weight, she's always been thin, just that she hasn't got any plumper, so we didn't even consider a thyroid issue when she mentioned tiredness.. I didn't realise it even happened in children. I hope she feels better on the meds.

LevantineHummus Fri 17-Feb-17 19:34:02

Hi OP I don't have experience with children, just my adult self. My TSH was quite a lot higher than your daughters when it was discovered. I did feel awful and but it happened so slowly I didn't really notice.

Obviously she's a child and I wasn't, but just wanted to reply specifically to her TSH level vs yours, because once I was properly medicated it became ok.

I hope it's "only" Hashis and that she starts feeling much better really soon.

SirVixofVixHall Fri 17-Feb-17 19:51:55

I do remember reading that for reasons they don't understand, some people feel relatively functional with surprisingly high TSH levels, whereas others feel ghastly if it goes much over 3. I am in the latter category. I know what you mean about it happening slowly, mine crept up and because it made me blank and flat, I stopped noticing how I was feeling. I have a worry that my thyroid problems weren't properly diagnosed until after both DDs. My TSH was 18 when I pregnant with DD2, I was really tired, and yet the doc said to hold off thyroxine until I got tested again after the birth. So I wonder if my unmedicated thyroid problem while pregnant with both DDs could have caused this in DD. I'm also worried about the long term picture, whether she will now not reach her full height etc.

Bee182814 Fri 17-Feb-17 20:16:56

Hope you don't mind of I follow. I also have Hashimotos and am breastfeeding DD who is nearly 6months. She seems really unsettled and hungry and tired all the time, although she has trouble sleeping. I've been wondering if she's suffering with it too. I have recently learnt that it cant affect milk supply too so have been topping her up. I hope she starts to feel better soon. I remember feeling rotten with it (and still do most days!) I didn't take thyroxine while pregnant either but was told this was fine? Perhaps it depends where your levels are at?

SirVixofVixHall Fri 17-Feb-17 20:47:45

Please do follow! It is a worry isn't it? I don't know if the antibodies can cross the placenta, or be in the milk supply. Maybe someone will come along who does know. Could you have your baby tested? Horrible to put her through a blood test, but perhaps a good idea if you suspect a thyrod issue. Re milk- Personally I breast-fed for an age with no issues with milk supply, but having read up the dangers of having an underactive thyroid while pregnant, I am astonished that my then GP didn't put me on meds. It is worth joining Thyroid UK for their newsletter, as then you get more up to date info than most GPs will have, unless you are lucky enough to have a GP with a specific interest.

Bee182814 Sat 18-Feb-17 06:08:29

Good idea re thyroid UK, I will do that! And I think perhaps it might be worth getting her tested although it will be horrible. I think there's so much confusion and blurred lines/ varied advice amongst GP's and endo's re thyroid. Just as a side note to help your DD feel better OP, has she tried a magnesium supplement? It really helps with tiredness. I've seen in the health food shop they've got sprays that are absorbed in to the system much more quickly than capsules. I'm sure there was one specially for teens too although I may be wrong. Just a thought.

GrassWillBeGreener Sat 18-Feb-17 06:29:42

You'll get more information in her appointment next week, hope all goes smoothly. I'm pretty confident that your own thyroid status during pregnancy won't have influenced this happening to your daughter now, so try to rest easy on that point at least smile

SirVixofVixHall Sun 19-Feb-17 17:27:49

Thank you grass. I have been worrying that somehow I have caused this. Along with feeling guilty that I didn't spot the signs earlier. We've had a horrendous year, I lost my Mum, then my uncle, our dog was critically ill, my FIL was in hospital for some time and has had to go into a care home, so perhaps I haven't had the time to stop and really take in just how tired she has been.

tanyadm Mon 20-Feb-17 10:24:10

We are in the same journey, although my daughter is only 6. Like you, I hadn't realised such young children could get it, though I also have Hashi's, but was diagnosed at 24. Daughter is also thin, and tires so very easily. We should get her antibodies test back this week, and she is being referred to two specialists. I feel heartsore for her knowing the crap she has ahead of her 😔

tanyadm Mon 20-Feb-17 10:25:38

Bee, who told you it was ok to stop taking thyroxine in pregnancy? It isn't. Hypothyroid women routinely have their dosage increased during pregnancy.

porridgestirrer Mon 20-Feb-17 10:43:59

My daughter had almost this exact same thing. Only she was 11 when her goitre was spotted. The goitre is caused by the thyroid having to work too hard to produce the necessary thyroxine. They did other tests to rule out any nasties then put her on thyroxine to stop the thyroid working so hard. There was talk of maybe having to remove it one day or that it may just stop working and eventually become absorbed by the body but in fact none of that happened. She was on thyroxine through out puberty and now (she is 23) her levels are ok and she hasn't taken it for about 3 years. Her GP took over her care once she reached 18 and seems completely unconcerned. It was very worrying at the time. Her symptoms apart from the goitre were what appeared to me, virus like. Achey, pale and very tired. This happened for some months before the goitre was spotted. Don't know if the outcome of her situation is of any comfort to you.

SirVixofVixHall Mon 20-Feb-17 17:39:54

Yes that is comforting thank you. DD has just turned 12, but I looked at some photos on the weekend and I can now see that there was a little goitre there nine months ago. The GP did say that for her levels to get this bad she'd probably had issues for a long time. She is pale, she looks anaemic, pale, a bit puffy eyed, thin as a rake, and hyper in that way that children get when they are overtired and running on adrenalin. Scan tomorrow to rule out a tumour, so I'm very stressed!

SirVixofVixHall Thu 23-Feb-17 16:15:34

The scan was helpful, no tumour, but the thyroid is very enlarged. The Doc doing the scanning was very uncommunicative, so hopefully we will get much more information from the paediatrician on Monday.
porridgestirrer- how did it work with your dd coming off thyroxine? I assumed once on it, that was it. Did she gradually cut down?

SirVixofVixHall Sun 26-Feb-17 17:23:02

Hospital tomorrow to see paediatrician. She isn't feeling any better/different yet on the levothyroxine. Antibody results not back yet, am hoping we will have them for the appointment tomorrow.

theresamustgo Mon 27-Feb-17 11:39:02

I hope this goes/went well. I have a niece with some thyroid issues, so I sympathise.

imadeamistake123 Mon 27-Feb-17 12:46:53

If she doesn't do better on thyroxine, she might need t3 meds. Some people can't get their ft3 in range on just thyroxine because they don't convert ft4 to ft3 well enough. I hope they test her ft4 and ft3 to find out.

SirVixofVixHall Mon 27-Feb-17 20:18:30

We did ask if they had tested her T3, but the Doc said it wasn't necessary, that it was a clear diagnosis as it was, perhaps they will need to test it if she doesn't feel better soon on thyroxine? They measured her height and weight today, checked her eyes (which are puffy), Asked family history etc. The antibody result came back v. high. She will have her bloods done again in two weeks to see how she is responding to the thyroxine. The Doc was nice, friendly, approachable, patient and kind (a paediatric consultant I think) but I would have been happier to see someone for whom thyroid issues are their main specialism. Maybe that isn't necessary, I don't know. She has to go and see him again in six weeks. I'm not sure what to say to the school? We've let them know what is happening but perhaps I should write a short info letter for all her teachers, so they understand if she is losing focus, tired, or distracted. The only people I know with Hashimotos are other adults, I have no idea what the impact of it will be on such a young girl. : (

imadeamistake123 Mon 27-Feb-17 22:20:37

I've learned a lot from the thyroid uk forum and many medics are woefully short on thyroid expertise. Some people do well on thyroxine but some need t3 meds too. It's also important that ferritin, d3, b12 and folate are all optimal. Half way through range not at the bottom! Please make sure you get a print out of her results. You could post them on the healthunlocked/thyroid forum for advice. You really need to keep all blood results for your records. She'll feel better once they get her TSH to around 1 and her FT4 and ft3 in the top quarter of the range.

SirVixofVixHall Mon 27-Feb-17 23:01:02

He said that they would aim to get her TSH to "under 10", which worried me, as I feel ghastly if mine goes much over 2. He also didn't seem to see the point of T3 testing, mine has never been tested either.

PinkFluffyChickenTrousers Mon 27-Feb-17 23:35:51

Your poor DD, what a horrible thing to go through. I have Graves Disease which was diagnosed last year (I'm 26) I had TSH at 50 something and felt horrific all the time. Went from 12.5 stone after having my baby boy in 2015 to 9.4 stone by the time he was 9 months old. Tired all the time yet hyperactive with stare-y eyes, and my resting heart rate was 152. Has your DD been given beta blockers to ease her symptoms? They really helped me initially. I had beta blockers and then carbimazole to treat mine, and luckily it stabilised very quickly although my consultant still insists I have Graves. Have been left with thyroid eye disease, only mildly though and my left eye is only a little more pronounced now.

I'm actually 7 months pregnant at the moment after conceiving almost as soon as my thyroid stabilised - accidentally - and have read quite extensively about the thyroid and pregnancy. The general opinion seems to be that if your thyroid is stable, the babies thyroid is too. I have to have a thyroid antibodies test next week which is the only extra test my endo has recommended being pregnant. I came off the carbimazole when I found out I was expecting and my thyroid has been normal since. I'm more worried about a flare up after I have the baby and having to look at RAI treatment etc, but I'm hoping I'll be in the 50% that don't have a second flare up of Graves.

Thyroid problems can completely ruin peoples lives, at least you have gotten your DD the medical help that she needs. Hopefully with the right meds they can get her on track again. Just thought I would share mine that some normality can be restored xxx

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