Went to GP with toddler as she is a terrible sleeper, constipated, bloated, very cranky/tired/angry, constant rash on chin/face and little hair growth. GP subscribed laxatives, multivitamins and steroid cream for the rash but also said yes to a blood test. (After twisting his arm.)
Results came back as:
Raised TSH 8.00 (0.27-4.2)
Normal FT4 14.8 (10.5-24.5)
He just gave me a call to tell me we had to do new blood test in 2-3 months. They will then test for FT3.
B12 came back as elevated
1100 (197-771)
How elevated does TSH need to be before medication? I don't want to take any chances as she is so young and has so much development and growth to do. Any advice or shared experiences would be greatly appreciated.
Many thank
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Dolphie
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I would see a paediatrician. In other countries if a TSH is above 3, we are prescribed. In the UK, for some unknown reason to me, is that we are not diagnosed until the TSH is 10.
Many of us would be very unwell with a TSH of 8 and for a little one I feel very sorry as she cannot explain. I think Mum's know instinctively.
If there is a children's hospital locally I would take your child along and say you are worried about her or even the local A&E.
thank you for the feedback. Wow, that is quite concerning to read and what a massive difference that is. Not sure how to deal with this within the NHS as it's so hard to get a referral to see any
FT3 should be part of the Thyroid Function Test or TFT - but sadly is not unless specifically demanded. Also be aware that the TPO anti-bodies is just one of two - but again the Anti-Tg is rarely tested in the NHS. Are you able to have Private Tests done ?
TSH can be elevated by a non-thyroidal illness or virus. It's standard protocol to wait 2-3 months to retest after the first abnormal TSH to give any non-thyroidal illness time to resolve. TSH levels in children are higher than in adults so TSH 8 in an infant may not require treatment whereas it would in an adult.
the problem with children's tests is that they are all over the place, I think that I would get a second test done too. Then insist on a paed referral, you are entitled to one, there are NICE guidelines. However, there could be lots of other issues which the GP may want to try to rule out, for example, gluten intolerance, lactose intolerance etc.
Thanks. We had her tested for celiac decease at the same it (it came back negative.) This is actually why we went to the doctor in the first place, all the symptoms seem to fit. Had never heard of thyroid issues previously. She has been on a gluten free diet for a few weeks now, just to rule it out. Can't say we notice a difference. Would a gluten or lactose intolerance elevate the TSH levels?
Thanks for the tip on the paed referral, I am definitely going to look into that.
a lot can cause a misbehaving thyroid to misbehave worse, there are lots of alternative diets, vegan is the main one that helps, however you don't necessarily have to be so drastic with a 3 year old! Dairy free is one, but be aware of soya products. I would also recommend low fodmap and a few others which are being used by Aziz for EDS (you'll have to google his research as it's too complicated here.
Hi Dolphie, As a retired midwife/health visitor I would advise you to contact your toddlers health visitor/ child and family nurse. They should be able to help you with obtaining further NHS care. Where they are based varies in different counties, as does what developmental checks etc. They are allowed to do. Contact details should be in your child’s health record or on GP notice boards, or go along to where drop in clinics to have baby weighed or get advice are held. You are also intitled to ask the GP for a referral to a paediatrician I would ask for an urgent one.
You are doing the right thing to pursue this further and not wait 2-3 months just for a repeat blood test. X
Thank you so much for this. I am definitely going to ask for a paed referral, I didn't think I could. I haven't seen a health visitor since she was a baby, but it definitely something we will consider.
She has similar results to mine, but I’m an adult. My TSH was 10.41, if it had been under 10.00 I would not have been treated by the endocrinologist, many in the UK will not treat until TSH is over 10. I’m tagged with this label ‘subclinical hypothyroidism’! My belief is you are either hypo or you are not. My Ft4 is high in range too but still I’m struggling with hypo symptoms. I sympathize as I know how it feels to have TSH this high...fatigue, irritable, constipated, dry itchy skin, sick, dizzy! The list is endless.
Please note some doctors labs will not test FT3 even when the GP requests it. If this is the case private tests are the route to go.
Dolphin, I’ve self medicated for a few years with T3 meds but currently giving Levothyroxine a trial under an endocrinologist. As long as I pace myself and take things easy I’m ok.
It’s very important to get your little one checked by a good doctor. I hope she’s better soon.
I would definitely seek a second opinion, this is crucial as your little one is growing and it is vital that she gets all that she needs especially for her bones and general well being. I was born with only a partial non working thyroid so have been on medication all my life.
Does she sleep a lot and when she was a baby when they did the heel test at around five days old, nothing was suggested then??
Does your little one, have a pot belly? That is one of the symptoms as well.
I am really shocked your GP has not referred you to the hospital already. I would seek a second opinion from a different GP practice if I had too.
She has a MASSIVE belly. Very thin arms and legs, a little flat bottom and this enormous bloated belly. I though it was gluten intolerance because of this. I didn't know this was a symptom as well, but that makes so much more sense now.
When were you diagnosed? As a baby?
She is a very restless sleeper, wakes up a lot. Always overtired and very twitchy if that makes sense. But she doesn't actually even get the amount of sleep she should be getting.. She had the heel prick test, but nothing was mentioned so I assume that came back ok.
Thanks for all your input. I really value it. Will keep you posted
I was five weeks old when they found out, evidently I was in a coma If it had not been for the quick thinking of a health visitor, I would not be here now.
When I was five, I was getting too much medication and my bone age was two years older evidently, which was not good. Fortunately it was soon rectified.
The other thing that you might like to ask about, is sleep apnoea. I was diagnosed four years ago, but they think I have always had it. Evidently it is quite common with thyroid conditions as well.
It can cause a lot of tiredness and waking up a lot in the night,
B12 deficiency, anaemia (normally comes later) and vitamin D deficiency can walk hand in hand with thyroid conditions and have similar symptoms. I have the lot! The latter three came later in life, as did the apnoea.
Does your little one have dry skin, puffiness around her eyes, dry hair?
I also suffer with anxiety, in a different way as a child, having quite lucid hallucinations and bad dreams.
For a little gland, our thyroid has a lot of power. We can live without our thyroid glands but not the hormones which have to be at optimum level for survival.
Your little one, might be very sensitive and irritable too due to the above.
It all sounds daunting, but once sorted and on the right medication, your little one, will lead a relatively normal live. I believe you should get a referral to see a specialist at the children's hospital, sooner rather than later.
I do feel for you, but remember each time, you have tests down, write down the results and question everything. My mum did bless her.
Has anyone in the family got diabetes or thyroid conditions, as it can run in families as well as the B12 and anaemia conditions. It does in ours,
The table of results (Table 1) shows that in the 1-5 year age group 90% of the healthy subjects had a TSH under 4.80 and 97.5% under 6.26. So you needn't panic, a TSH of 8 does not mean your child will necessarily have development problems, however it does need following up and your daughter may need medication. Something else the paper pointed out is that TSH can fluctuate from day to day much more in children than it does in adults, so that's why the doctor wants to do another test.
What you could do is to try to teach your daughter to swallow small pills. If you start with sweets and treat it as a game (making sure she doesn't choke of course) then at least she will be prepared. Fortunately Thyroxine pills are usually quite small and smooth. making them easy to swallow.
Your doctor is just following proceedure. The TSH can be elevated due to other things than a failing thyroid. Your child could have some sort of infection that you don't even know about. Therefore, the protocol is to wait three months and retest, to see if the TSH is still high, and was indeed due to a failing thyroid and not an infection. This is done to rule out taking thyroid hormone replacement, when it's not really needed. Which is an important thing to do for the health and well-being of your child.
Thank you for this! We chucked those prescriptions in the bin straight away and are managing it with natural remedies. I'll have to try some of these too. A bit perplexed that he just want's to treat individual symptoms rather than looking at the bigger picture. I think he thinks I'm hysterical and overprotective. He gave me a long lecture how to do sleep training and telling me she needs discipline when she's acting up. He's useless.
That does make sense. Wish he could have told me that and I would have been a bit less panicky. I do feel that 3 months is a long wait though? I have already been given the lab forms and can go to hospital whenever to get them done. (Although he has told us 2-3 months, I think 2 months will be the maximum we wait.)
Just had a new blood test after 8 weeks. TSH came back as 7.04 (0.27-4.2)
We are being referred to an endocrinologist, but told it could be a month minimum or so waiting time. Is there anything else it could be? They tested Free T4 whch was 14.8, did not test T3 or anything else. I am concerned about her development and her increasingly lack of energy and general welllbeing. We are considering going private.
Dolphie, I'm clueless about thyroid issues in children, but recall that ranges for children can differ from those for adults, so the high TSH may not be as bad as it sounds to us, given that FT4 is at least above range. If I'm talking rubbish, no doubt someone can correct me, but as your daughter is so young, maybe referral to a paediatrician is required, to look at the bigger picture, rather than just an endo who deals only in hormones.
thanks! Yes, she was tested for this in the initial round of tests 8 weeks ago. It came back negative, but we tried her on a GF diet anyway. Noticed a big improvement on sleet, but not the constipation/bloatedness. We tried to give her gluten after 4 weeks and she vomited for 6 hours..
Thanks. I believe though, that ranges can vary from lab to lab, depending on the equipment they use. So those numbers can only be used as an example, rather than absolute.
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If it had not been for the quick thinking of a health visitor, I would not be here now. 
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