New Born Baby Boy - Hypothyroidism - No Thyroid Gland

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Our son Mason was born 3 weeks ago today and has been diagnosed with Hypothyroidism. I was at GOSH yesturday so he could have a radioactive iodine test and from what i could gather from the results on the screen he seems to have been born without a thyroid gland.

Can anyone please respond with any advice/input on what we are to expect in the next few years. Anyone with actual experience would be greatfull but any comments appreciated.

He has been started on 3mg thyroxine solution and had his bloods taken to check he hormone levels yesturday.

Looking forward to your response.

Richard & Jemma

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6 Replies

  • Posted

    hi to you both, sorry to hear your news but, your son will be fine. a few babies are born with no thyroid ( this is why they do the heel prick test) i have been both under & over & through lots of reading & research have got to know quite a bit. if you can get hold of any reading material from proff anthony toft im sure you will feel reassured. he is the leading thyroid expert in this country. good luck to you all he will be ok. elaine.
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  • Posted

    Hi Richard and Jemma.

    My son was born in 2000 and was found, after 3 weeks in the newborn unit, to have no Thyroid. This is no doubt a traumatic experience for anyone to go through. Fortunatally his Consultant is superb, and after the initial 6 weekly tests this has gradually been reduced to every 6 months, his dose now being 125mcg Thyroxine.

    Although a little clumsy (some boys are anyway!) he is fine and developing well, and as far as his Consultant is concerned he is likely to grow up with no problems associated with having no Thyroid gland.

    My advice to you is try not to worry. The fact that it has been picked up so early is very positive news, and as long as Mason takes his medication as prescribed you should have no issues.

    I also think that you should explain to him as early as possible why he needs to take the medication and make him feel like any other child.

    Hope this helps you both.

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  • Posted

    I am 32 and was born without a thyroid gland. All I can say is watch blood tests like a hawk and if you think something is off don't let a doc brush you off.

    I've also been told to avoid soy (sadly- I love soy!!) because it inhibits hormone uptake. I noticed I kept getting super grouchy and my doc asked if I'd been eating or drinking a lot of soy O_o so weird.


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  • Posted

    Hi! I just register on here and saw this. My son 9 yrs ago was born without his thyroid gland as well. I didn't know what to expect. Already having a child with Autism who was nonverbal and then getting the news about my son born without his thyroid glands. Well I can tell you this much he's going to be just fine. As long as the pill he's taken is working and doing it's job you have nothing to worry about. My son is an active normal 9 yr old and the sweetest little boy ever. Our doctor told us if he could had to have any kind of health problem he would want to have hypothyroidism because all you have to do is take a pill and your fine. If course going to the doctor several times that first year was hectic traveling back and forth but definitely worth it just to know my baby is still doing great. Medication will sometimes fluctuat depending on weight and getting older but if you have a wonderful doctor like we do your and good hands. Prayers to your family. God bless
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  • Posted

    Hi there, my name is Mattie. I am 20 years old, and I was born without a thyroid gland. Over the past few years I had a few troubles fitting in, paying attention in class and making decisions. When it comes to a person having hypothyroidism, we don't mature until an older age, but we really make up for it in our late 20s and early 30s. Just make sure little mason takes his Levoxothroine everyday at 7:00 am. Getting the right dose of his meds will help him greatly on his days to come.

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  • Posted

    Hi, are you aware food affects the absorption of thyroid medication? Thyroid medication needs to be taken at least 30 minutes before eating (preferably an hour), or 4 hours afterwards. I find it easiest to take it before breakfast.
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