My 3 year old grandson has had a number of health issues since birth and has been diagnosed with food allergies. These are dairy, raw egg, beef, soya, nuts and more recently wheat. The allergies have not shown up on blood tests and he has had food challenges for soya and peanut which did not show up during the test time but manifested a couple of hours later with digestion problems, skin rash, sunken eyes etc. You may be wondering what this has to do with his thyroid. Well, when the allergic foods have been removed from his diet he has gained a huge amount of weight. His health visitor suggested blood tests to check his thyroid. This came back with raised TSH and the repeat test came back within range. His weight has continued to increase even though he eats a typical diet for a 3 yr old. The gastroenterologist at the hospital repeated the bloods last December and TSH was high again. We then got his blood retested a few weeks later and the TSH had increased again. He was eventually referred to a endocrinologist at a local children's hospital and had more bloods taken. The endo's secretary rang with the results and said that they're normal and more would be said at the follow up appt. I think my grandson has sub clinical hypothyroidism and would appreciate some help from anyone on this forum. My grandson's blood results are as follows:
While it does look as though his thyroid is struggling, this might be because of nutritional deficiencies that are now (slowly) being addressed. He wouldn't have been absorbing much of what he needed previously, and iron, B12, zinc, magnesium, to name but a few, is needed for good thyroid function. That might resolve over the next few months but needs monitoring.
Do you know if anyone's tested ferritin and B12? And did anyone test for coeliac?
I don't think he's had any other blood tests except to check his iron levels because his poo was red and mucusy. He had blood test for celiac when he was little but it came back negative. The specialist at the children's hospital said he had a type of celiac that doesn't show up on blood tests, hence weight gain and improvement in digestion when wheat was removed from diet and he was prescribed bread and pasta without wheat or gluten in it. I am very worried because he weights over 4 stone and he is 104 cm tall. This is too heavy for a 3yr old.
I think from what you say that the cause here is non-coeliac gluten sensitivity (though even with the negative test it could still be proper coeliac).
In which case, he needs to avoid gluten in all forms - every last crumb. A little bit can do a lot of harm, and it's hiding everywhere - in the coating of fish fingers and chicken nuggets, even on some brands of oven chips. To really be gluten free all food prep needs to be done separately - dedicated toasters, plates, spoons etc. Apologies if I'm telling you something you already know but many people just don't realise that it's not as simple as just eating gluten free bread and pasta - if only. Some people find they're also intolerant to gluten free bread and pasta. Far better to avoid all GF substitutes and stick to meat and vegetables - but I realise that's a big ask for any 3 year old. It helps if the whole household goes gluten free. Eating out becomes nearly impossible.
The trouble is, as long as his gut is being exposed to even tiddly amounts of gluten, it won't heal and he won't absorb decent amounts of Vit D, B vitamins - well, anything. The fact he's putting weight on suggests that things still aren't right (many don't realise that nearly 40% of Coeliac patients are overweight, assuming that they'll be skinny whippets instead).
But equally, his thyroid could be slowly failing and you're right to be concerned about that. The ranges are different for children though, so the fact his TSH is rising needs interpreting by someone who properly understands paediatric endocrinology.
Thanks for your reply, it's good to have someone to chat to as my daughter (my grandson's mum) thinks I'm over protective and it's not gluten just wheat because of what the gastroenterologist said. I think he should avoid all gluten containing foods and even the stuff prescribed for him isn't right. They've prescribed pizza bases that are made from low protein wheat starch, that is the primary ingredient. I've pointed it out to my daughter and she just said, "He's had them before and been fine". I don't think he's fine because he finds it hard to sleep through the night and I think it's linked to his digestion because he bloats up and rolls about on his tummy in pain.
The specialist we saw at the children's hospital is a paediatric endocronologist that specialises in allergies too. I just think that they're not believing us because my daughter is over weight and I think they'll assume that she over feeds my grandson and, that because I've had thyroid cancer removed and got an underactive thyroid now. Although, I probably had an underactive thyroid before the cancer developed because I had all the signs but my GP refused to do blood tests, It possible they just think that we're paranoid parent/grandparent.
As regards his TSH range I've checked against the ranges for the hospitals that did the blood tests and his blood result is above the ranges. I've also checked them against Sussex and Brighton Pathology Results and his bloods are out of range for their tests too! I'm not sure what to do now except wait until we see the specialist again in a few weeks time.
This may be a silly question, but I'll ask it, anyway. Did he previously eat a lot of soya? Because that would have an effect on his thyroid if he did.
It's good to hear from you again, we've spoke in the past about thyroid stuff.
When he was diagnosed with a dairy allergy at a few weeks old he was tried on a soya formula and found to be allergic to that too. So, we've always avoided soya with the exception of free from chocolate because it contains soya lecithin and my daughter thinks he's okay with this. I beg to differ but she just goes mad with me because it's quite hard to find chocolate with soya lecithin in it.
Well, she may be right. I get quite ill with most forms of soya, but I'm ok with lecithin in chocolate. That doesn't affect me at all.
But it's good he hasn't had soya in other forms - although you of course know that it's in just about everything these days! Difficult to find bread in the UK without soy flour in it! I think it's criminal, but that's just me.
Me too! I think he's got sub clinical hypothyroidism because his TSH is above range and Free T4 and Free T3 are within range.
At the consultation with the pediatric endocrinologist he said that raised TSH could be because he's big for his age (fat)! That old chestnut again!!!!!!!!! His secretary phoned my daughter and said that my grandson's bloods were normal and the result would be discussed at the next meeting. I'm not sure what to do next, any ideas please?
Well, there's not very much you can do, except keep an eye on the situation and urge your daughter to learn about the disease.
The endo is talking c**p, of course. It's fare more likely that being hypo has made him put on weight, and that's why his TSH is high.
So, you could try encouraging your daughter to take him to a private endo, who knows a bit more about thyroid. Also to ask for the other antibody to be tested : TgAB. Often the TPO is normal, but the Tg is raised. Both mean Hashi's. And, getting his FT3 tested wouldn't be a bad idea, either.
The specialist did TSH, Free T4 and Free T3 blood tests but we don't know the results until we see him on the 18th March. My daughter was just told over the phone that they're normal, whatever that is?!
The trouble with my daughter is that she finds it all a bit overwhelming and doesn't want to face things. I've been telling her for ages something was wrong but she just sees me as an interfering grannie. I worry a great deal because untreated he'll develop diabetes and all the associated problems that disease causes. My grandson is 3 years old and weighs 28kg and is 104cm tall. He is big for his age but, his father is big and all the men on my side of the family are 6ft 4inch tall but not fat.
You're welcome. Let us know how it goes on the 18th! I can perfectly understand his mother. It must be dreadful for her. But I know it's awful for you, too. Stand your ground without pushing, you know what you're talking about, and she's new to this. She needs you, and so does your Grandson.
I'm very careful with my grandson's diet because I look after him 3 times per week and I make sure everything is made fresh so I know what's in it. My daughter used to be so good at doing the same but she's become so despondent and fed up with it all that she cannot face it. Plus, she's had loads of trouble from her ex (my grandson's father) that keeping a diary is the last thing on her mind. We were hoping to get somewhere with the specialist at the children's hospital but we have doubts now. It's another watch and wait game again!
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