Thyroid UK
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Sad mom! 9 months old baby!

Hello everyone,

My son is 9 months old. We did TSH test since his motoric development is delayed. It showed that his TSH is 11 which is very high and his T4 was 15.... his doctor didnt want to give him medication so we went to emergency and sat there until we met a doctor and took new tests... this time TSH was 8,, T4: 15,, T3: 6,4,,, TPO-ak: 7,6. So all results except the high TSH were normal.... after this hw made new test and TSH was 11 again. So after 3 tests its clear that his TSH is too high, and Thats why he is delayed with his development..stil the doctors sais no to medication and they say Since his T4 is fine we Will not give him medication... I have went to 4 doctors. I am so sad I cry and feel helpless. What can I do? I know My son needs medication, high TSH gives brain problems and many complications when it comes to babies. We live in sweden, should I go abroad? Will it help.

Please does anyone know any endocrinolog who I can ask further?

9 Replies
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Welcome to our forum and I am sorry you have such a worry over your little baby.

I am not medically qualified but some members who've had problems with their child will respond.

I would have thought that a very high TSH would have warrented a prescription for levothyroxine.

Is their a paediatric endocrinologist you can consult as you want an answer as soon as possible?

If you have the ranges of of the results it would be helpful as the machines in labs differ and ranges enable comments to be made.

If someone knows of an endocrinologist in the UK they will forward a private message to you.

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AnnaBerg,

Infants and children have higher TSH than adults. If T4 is normal there won't be any developmental problems. TSH level may resolve without intervention. I expect your son's doctors will continue to monitor his TSH and T4.

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I would phone and speak to someone tomorrow. Details in link below.

The link is from the Great Ormond Street Hospital which has a good reputation and is a children's hospital.

tinyurl.com/y7z3etqm

The phone number is Phone: 020 7405 9200 (you'll have to check the code for UK) .They are open 24 hours a day but I don't know if the Endocrinology will be open for you at present. You can try.

Regards.

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Shaws,

AnnaBerg is in Sweden so GOSH won't help her.

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I know that but they have an international and private patients wing.

gosh.nhs.uk/working-here/nu...

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I Will call GOSH and try to talk to an endocrinologist. If its needed I dont have any problem to come to UK to get medication for My son. I dont know why its so big deal in sweden to get medication when it comes to thyroid. I have also high TSH and are on medication, They didnt gave me medication in sweden because of exactly same reason, they said as long as all other results are in reference value we dont give medication just because of your high TSH. And this was a big problem because i couldnt become pregnant because of high TSH. After a Year I went to Norway, they gave me medication and four months later I was pregnant. So I made right desicion to go abroad to ger help I knew My only problem to get pregnant was high TSH But no doctor Did agree with me. Now same thing is happening But this time with My son. The problem is they dont even send me to children endocrinologist, all doctors sais its not necessary. We dont have private endocrin in sweden otherwise I would go to private...... please anyone WHO knows a endocrinologist? I need to get a second opinion from an endocrin.

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Ask your doctor to test his vitamin D, folate ferritin and B12

If these are too low it suggests a problem

If they are OK, then things are likely fine

Has he had thyroid antibodies tested too

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Are there any thyroid illnesses in yourself or your son's father, or any family members you know of? Have you yourself been tested? Was there a specific reason the doctor(s) homed in on thyroid - I doubt they would think of that in the UK to be honest. I can understand your complete worry over your baby son. Unbeknown to me I had Hashimoto's Thyroiditis whilst pregnant with my own son 37 years ago but he was always hyperactive. There must be other tests to be done regarding his slow motor development.

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Hi,

Yes I have high TSH and I eat medicin for that. They found My diagnose because i couldnt become pregnant until I was on medication.

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