children and thyroid problems

[Jo6366]

Hi
I was just wondering if there was anyone out there with a child who has thyroid problems and what experiences have you had/how did you find out that they had it etc. I am almost certain that my son has something underlying (I'll explain in a mo) but really am so confused how to go about talking to the doctor about it as there isn't one specific 'thing' i can put my finger on!

DS is 3 and half and has always been quite an active little boy. However things are now happening at Nursery which are giving them concerns e.g he's pushing (which he's been doing for a while) and recently started scratching and biting. his language is very good so its not through frustration because of trying to communicate (he's also doing the same to his 12mth old brother whom he loves to bits) His behavious is very erratic, one moment he's as good as gold and the next he's doing these things without even thinkng about it and he doesn't seem to plan things or be malicious about it, he rushes around everywhere and has difficulty concentarting for any length of time on any activity.He's hard work at home but we manage to keep on top of him although its hard to not constantly be negative! He constantly appears tired (he looks pale and tired) although he won't take a rest, he's fidgety and can't sit still. The Nursery have been observing him and at one point he wasn't even spending a minute at any one activity, just flitting from one thing to the next and he seems to be getting increasingly worse!) the Nursery would like the HV to come in and observe him to see what they think. diet has been mentioned but as I used to work at the Nursery i find it easy to talk to the staff and have explained that we watch what he eats because he is very sensitive to additives (He also had a milk intolernace when little and don't know whether there could be a connection) He has a constant cold (I can't rememeber the last time he didn't have one) and I don't know if this is making him tired. i've had him back to the dr a few times who have said he does have a lot of wax in his ears and they can't see down the ear canal to the middle ear but ear drops/nose drops have not helped-I had a glue ear when little and ended up with hearing aids before eventually getting grommits) So I don't know if it could be his hearing that may be contributing to things. I have also a long history of having an overactive thyroid and know that this can be hereditary and after looking on the internet have seen that sometime the first signs are behaviour problems at School/Nursery. I can't find an awful lot of info especially in UK and would really like to hear from someone who has experience. I'm at my wits end. i know its not just my imagination that something is wrong as close friends have also suggested that they don't think its just a case of bad behaviour (one of my friends is a primary school teacher) and my mum has said I ought to keep following things up.
HELP please!
Thanks
Jo

hello

I 'm Hashimotos ( under active ) and I mentioned the hereditary thing to the GP recently as ds1 was so tired. GP told me he would have had his thyroid function checked at birth and before taking a blood test, they would take a MSU wee sample to rule out other things.

What I mean is they don't like to take bloods for maybe thyroid conditions without ruling other things out first.

HTH

hi jo
i can imagine you must be getting desperate. i am not sure though, why your gp can't just do a thyroid test on your ds. it doesn't take v.much blood to do this, and if you are worried about it,... ah well.
i am (like suzy) hashimoto's (low thyroid) myself, and had ds2 tested for tsh, t3/4 levels when he was 10wks. he was supposed to have his cord blood tested at birth, but this wasn't done. congenital hypothyroidism is tested for at birth, but this does not check thyroid hormone levels, just known genetic disorders (also tests for pku, sickle cell anaemia and cystic fibrosis (last one, not always and everywhere)). fortunately, my ds2 was fine.
re. your ds's behaviour, does it help to give him some one-on-one time? my ds1 (almost 3), who occasionally shows similar behaviour to your ds, usually calms down when dh or i give him some attention without his little brother around. maybe keeping your ds home from nursery (if little brother goes into nursery as well?) and doing something fun together. it might just be a difficult phase he is going through?
good luck!

agree about the one on one
my sons always respond well to it and then we kick ourselves we didn't think of it before

PCHB - can I just hijack a quick moment

I have to go down from 175 mcg to 150mcg and am a bit nervous about it. Have you ever discovered you've been over replaced after a blood test and if so how did you adjust?

Hi
I am trying to give DS1 as much one on one attention as possible which he does love especially as we do lots of special things while his little brother is in bed like baking, crafty things etc so I don't think its all to do with not getting the attention. i've always made sure he doesn't feel left out, almost to the extent that DS2 doesn't get as much attention as I'd like to give! Thats why its great that DS1 is at Nursery for 2 and half days a week as it gives me a chance to have some time with my youngest who doesn't go to Nursery yet (He's 1 on 16th Dec) I've just made an appt for myself to go and speak to the gp first without DS so I can explain everything going on with him but I didn't want him there listening in initially. Its just nice to hear that you don't think I'm being paranoid and there may be an underlying problem to it all which is why I was wondering about other children with thyroid conditions.
Thanks
Jo
x

That's a coincidence: my ds2 is 1 on Dec16th as well!! (And ds1 is 3 on 15th, so it's nice and busy in Dec for us...) Are you throwing him a party? We are having some of ds1's friends over (as he turns 3 it is more of a big deal to him), and he wanted a Wiggles party... We weren't entirely sure what to do far that, but it will probably be some dancing and general unorganised fun... Nothing too crazy.

In response to your hijack Suzy, I had gone up during pregnancy from 50mcg to 100mcg and was taking 100 in the first couple of weeks after birth of ds2. This turned out to be too high, and I had to go back to 50mcg. It took me ages to get used to the lower dose (which turned out to be too low at the next bloodtest, so i am back up to 75/100mcg). I started to put on weight and got awful brainfog, but that may have been due to the fact that the dose was then too low... Did you feel you were being over replaced before you got back the results? I actually felt fine on the 100mcg, so was very surprised that i had to go down... esp so much.

oh bloody hell! It's the brain fog I simply WILL NOT go back to

I was taking 150 one day and 200 the next to average 175 but what do you think ( and I appreciate you are not a doctor) of taking 150, 150, 200 over three days? I am terrified of going back to the zombie state, it's just not fair on my kids

suzywong, i frequently have to adjust my meds as y thyroid wobbles all over the place, ive had tsh results ranging from 1.3 to 7.9 whilst on thyroxine, if im taking too much, they tell me to immediately drop down to the lower dose, i sually then find that im ok for a while, them symptoms of hypothyroid creep in, lethargy, depression, brain fog(horrible, hate it) and i have to go back and usually find that im underactive again so start the higher dose straight away, it doesnt seem to do me any harm, remember that thyroxine is a naturally occuring hormone which can fluctuate from day to day anyway, so differing doses over a few days wont do any harm, however, when i was on 175, i took 175 daily in 100 mcg and 25mcg doses

oh thanks for that

I have been off 175 for 5 days now and I am frightfully bad tempered and have the old pins and needles in the hands at night - in your experience do you think I should do the 150 150 200 thing, I mean should I listen to my body? I CANNOT go back to the way I was before - and would 25mcgs too much do me an awful lot of harm?

sorry for the hijack again JO6366, but you know how it is when you are in the grip of the 'roid

suzywong, just out of curiousity, what was your last tsh, t4 t3 reading?, your tsh may have appeared to be erring over to the hyperthyroid end of the scale, but your t4 may still be low..
stay on the 150mcg dose for a couple of weeks and if you notice your symptoms again, go straight back to the gps and ask for a repeat blood test, they should in theory, repeat your blood test after a month when theyve adjested your dose, then 3 monthly, then 6 monthly.
the reason gps like to err on the side of caution and lower doses if tsh is too high because too much thyroxine isnt good for you, usually though, if you are being seriously overreplaced, you will notice things like, feeling a bit panicky etc.

Hi Jo6366,

My DD1(12) has hyperthyroidism. Her Daddy had it and his brother and their mother, DDs granny. So there is a massive family link in our case.

My late husband was undiagnosed until at the age of 15 or so he was massively underwieght and having regular palpitations, to the extent that he thought he must be having a heart attack.

When DD was born she was a ravenously hungry baby, breast feeding every 20 minutes, day and
night!!! Never slept through until she was 5 after starting medication. (prior to that she'd sleep fitfully from about 11pm til 5.30amish)

She was tiny (still is) and on the 9th centile for weight.

No health professional ever made the conection
between her behavior and growth and her dads thryroid problems.

On starting school we were constantly called in for her lack of concentration and bad behavior. She was a very unhappy little girl.

Her Daddy died when she was 1 of another autoimmune disorder (hyperthyroidism is caused by the immune system attacking the thyroid gland)
and I became obsessed with making sure she wasn't developing the same thing. So frequently went to the docs with my concerns.

On one of our frequent trips to see the geneticist and paediatrician it was decided to test her. Lo and behold her TFTs were off the scale.

She takes carbimazole daily to supress her thyroid glands hormone production. We go for 6-12 weekly blood tests, depending on how she's doing.

On the whole she's ok, although she's in the midst of a manic period. Her consultant said as she has growth spurts and her puberty kicks in her thyroid will also play up. So lots of irritabillity and sleeplesness.

She eats like a horse and is still thin as a pin. Does your LO eat alot?

Hi
Thanks for your message. Yes Ds does eat alot (although it seems to be in phases - he'll eat like a horse one week and there's no satisfying him, then the next week he's not so hungry) trouble is he's such a faddy eater that he won't eat veg and fruit is also very limited to the organix pots really so he ends up eating loads of things like fish fingers/smiley faces/chips/chicken nuggets, as they're the only things that seem to satisfy his appetite when he's hungry. He's also on the 9th centile (gone up from the 5th from when he was born) and has hardley any meat on himat all which really doesn't run in the family and his younger brother averages on the 75th centile!. Sorry to hear about your husband, I'm not surprised you're so keen to get everything looked at! I've had a 6yr history of Hyperthyroidism, it was diagnosed about 10mths after I'd had a miscarriage (I was told I was depressed but after lots of nagging and feeling like I was about to have a nervous brteakdown and a marriage collapse was finally diagnosed with it) and I have had 3 flares since, the latest being after the birth of DS2 last December (i'm still on meds - 400mg propylthiouricil) and find out on Thurs what my levels are at now!I don't know whether to mention anything when I go for the appt!?
Thanks
Jo

I think you should deffo mention your concerns when you go to see your docs. He does sound like a candidate doesn't he.

Getting DD dignosed and on treatment changed our lives. I know that sounds a bit dramatic, but it's so hard coping with a child who is literally climbing the walls, and everyone tells you they're naughty/hyperactive/disruptive etc.

She eventually changed schools, age 7, as inspite of the diagnosis and me sending lots of information, and even a friend who is an educational psychologist to school to help them to understand her behavior and problems they still treated her as a naughty child and she was constantly being punished and excluded.

She's now in high school with a great form teacher who is totally aware how her illness can affect her and at last she's making progress.

Get him blood tested asap so you know what you are dealing with.

Good luck.xx