New to all this thyroid stuff

My daughter who is 13yr and 6 mths has had problems for a long while the main one being she hasn't grown since she was approximately 10. Last year she had hip issues which has meant both hips being pinned. My husband and I have kept going on about her not growing and the need to see someone from endocrine. This finally happened and 2 week ago went for blood tests before going to the endocrine clinic.

Surprised 2 days later to get a call from the doctor saying she has an underactive thyroid. Been to see endocrine consultant and she has been put on 25 mcg of levothyroxine to start off with.

My question is has anyone had growth issues and is there any chance she will catch up. We are so worried that it may be too late!!

15 Replies

  • Has she had tests on her pituitary function too?

  • Not really sure. Her levels were pretty bad and they told us that nothing would be passing from one to the other. It's all so new and all so confusing

  • It's worth asking if that has been investigated when you go back. XXX

  • Welcome to the forum, Sweetness147.

    Your daughter should take Levothyroxine with a full glass of water on an empty stomach one hour before or two hours after food and drink, two hours away from other medication and supplements and four hours away from vitamin D3, calcium, iron and growth hormone if she has been prescribed it.

    She should have a follow up blood test in 6 weeks to see whether the dose is enough or whether she needs an increase. It's best to have a thyroid blood draw early in the morning when TSH is highest and Levothyroxine should be taken after the blood draw.

    If your daughter's lack of growth was purely due to an underactive thyroid it should improve now she is taking Levothyroxine but I don't know whether she will catch up on the missed growth.

  • Insist on a referral to the growth clinic at Great Ormond Street hospital in London

    she needs properly checking out and treating not just an assumption its all due to hypothyroid

  • Very important to obtain copies of all blood tests - so you can monitor things for yourselves. It is your right. You can also post results with ranges here and people will then be more able to help.

    It must be a worrying time for you all - but it seems as if you are on your way to resolving things.... :-)

  • While there's no benefit in dwelling on this disgraceful missed diagnosis - thank goodness you persisted and trusted your instincts. Although there is a lot to learn, you have come to a great place for help. She needs to be referred to a specialist clinic. You will need to be her advocate - copies of her test results are imperative so you can monitor her progress according to her dosage. You can post them here for guidance.

    The vast majority of GPs and so called endocrineologists knowledge of diagnosis and treatment is disturblingly poor. Too many do not recognise the signs and symptoms and minimise the impact of the condition. That's why sites like this exist. However a unit specialising in children's health including thyroid may give much better support for your daughter than you will otherwise get from a GP that has to be pushed into taking action:

    The good news is that with your own knowledge and support she can start her recovery now she has been diagnosed xx

  • Thankyou for your kind words. I am beginning to get somewhere at last after all this worry about her growth and not knowing why she wasn't. Hopefully we won't be too late and she has some growth left in her.

    As for the thyroid I have learnt more on this site than what any doctor has told us. All we had was a sheet of blood results all with exclamation marks and that our daughter had an underactive thyroid. .. very informative

  • You're most welcome. It must all be very worrying for you - not helped by having to go to extrordianary lengths to get someone to sit up and take notice and do the right thing. Harder when it's your child too.

    There are some that try their best to be informative but more often than not in my experience most of them don't seem to give a hoot or have lost any semblance of empathy. Such a hard lesson to learn of what is the caring profession but also an opportunity to not be fobbed off with substandard care in the future.

    Getting contol is is very empowering - I found knowledge from research gives that control and health is all the better for it. You will and can do the best for your daughter. Wishing you both all the very best outcomes.

  • My son was growth hormone deficient and had Human Growth Hoprmone injections from the age of 2.5 years old. These were then stopped when Creuzdtfelt (?) Jakob Disease was said to be a cause of this. He stopped for a year between the ages of 7 and 8 and then had synthetic growth hormone injections until he was age 19 when full growth was thought to be reached. Would think if this is your daughter's problem then she still has a little time left. We started off at the Institute of Child Growth at Great Ormond Street Hospital and then came under UCL Hospital when he was about 16. Do wish you well with this.

  • Thanks for your help. We are waiting for the growth scan results tomorrow and we will go forward from there. Fingers crossed we get some good news

  • I stopped growing when I reached puberty. But when I reached 18, for no reason that I know of, I suddenly had a growth spurt, and grew an inch taller. So don't give up hope. :)

  • The growth scan and where she is in puberty will decide how her future growth will be. Sadly the consultant did not give us much hope on our last visit which has left my daughter distraught for the past 10 days. We are hoping and praying for a miracle

  • I would say she definately needs her Human Growth Hormone checked. If they seem a bit vague about this, ask for an IGF 1 test, as this has a direct bearing on HGH.

    There is a link between the pituitary and the thyroid, as I'm sure you know, and between HGH and thyroid because you need T3 to make HGH, and HGH is needed to convert T4 to T3. So it's a viscious circle!

  • Did they do a wrist xray to check her bone age? There is a charity called Child Growth Foundation who are great supporters of families with growth complications and have lots of advise about accessing NHS services. My daughter was misdiagnosed and we found out too late to do anything. I hope it works out for you and your daughter gets to a height she's happy with.

    My daughter was distraught at being told she'd stopped growing

    My daughter has struggled but is having councelling which was also a struggle to access.

    Do try the Child Growth Foundation and you will find lots of parents in a similar situation and have good advice.

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