Monday, 17 September 2012

Danielle's story - congenital hypothyroidism

Danielle very kindly shared her story with me last year. I hope it will be helpful and reassuring for anyone else diagnosed with congenital hypothyroidism, or who has a child with this condition.  

British Thyroid Foundation website also has telephone support contacts dedicated to talking about children's thyroid disorders so you may also want to follow up with them. 

Here is Danielle's story, as told to me in 2011:  

Danielle and baby Joseph, 2011
"I was diagnosed with hypothyroidism when I was around 6 weeks old, at a time when testing at birth wasn't carried out. My parents were concerned that I wasn't active or growing quickly, and the GP suggested a test. 
As a baby I was given thyroxine in liquid form, but I only remember later on, having 2 pills crushed and put in with cereal and milk. I quite liked the little ritual and though I was aware of my condition, I didn't see it as an illness, and certainly didn't feel I was different to my friends.
However, when on holiday, for example, I was frustrated when being made to get completely dry after swimming and before I could go and play, as the difficulty in keeping warm would make me shiver uncontrollably. On the whole, I had no fear of doctors, hospital or needles, and apart from a brief phase of getting almost hysterical, I was happy to go for blood tests- I still have an interest in medicine which I think started then. I certainly felt well-informed and was never worried by the idea of having hypothyroidism as it was always clearly explained that it is treated very simply with daily tablets. 
As a teenager I had phases of poor compliance, which were serious enough to affect my health. The resulting forgetfulness probably exacerbated the problem and although the doctors wanted to manage my hypothyroidism carefully during that time, in retrospect I don't feel I took the condition seriously. In my 20's I was still guilty of forgetting a dose here and there, although I
never felt the symptoms of under-replacement particularly badly. On one occasion the GP remarked that he was very surprised to see a very lively and energetic person in front of him given the very low t4 and very high (20 to 50) tsh levels on the recent blood test.
 When we were trying to conceive, I discovered that it could take longer as a result of the condition, though I was pregnant within a year of trying, and I found it helpful to read about other womens experiences of being hypo and having children. Of all the things I could do for my baby's health, being diligent with taking thyroxine would be the most important and since I
conceived, my attitude has been different as it's no longer just myself I'm responsible for.
 I was under consultant care throughout pregnancy and had frequent blood tests and extra growth scans, which thankfully showed that the baby was growing and developing normally.
In February I gave birth to Joseph, a perfect little baby boy (7lb 13 oz). When it came to his heel prick test results I was confident that if he did have hypothyroidism, it would be fine and we would know how to make sure he was healthy. He isn't hypothyroid, and I've since found out that the form I have isn't thought to be hereditary. 
With good gp care and access to clear information about the condition, and how it affects pregnancy and the growing baby, starting a family has been the same adventure as anybody else's, and hypothyroidism hasn't caused us any worry. Joseph being successfully breastfed for 6 months and is a very healthy boy with no allergies or other issues, and is an exceptionally smiley and good-natured baby! We're very lucky.” 
Thank you Danielle - it is so good to hear your experiences and Joseph looks adorable! He must be getting bigger now, time flies.  I finally posted this today in response to a question about congenital hypothyroidism elsewhere on the blog. I think Lisa will be really interested to read your story and something tells  me that it will be really helpful for others to read too - it is very good of you to share it. 

Love and light to all reading this. Comments are warmly welcomed, as ever. 



  1. am in tears - thank you thank you thank you, I worry for my girl and to read such a positive story fills me with joy and my eyes with tears.

    I cant thank you enough for this, Issy has just turned 2 and her whole life is a head of her, I hope she is as happy as this x

  2. Great story my little girl was born with cht she is 9 now she has up & downs on levels & just 1 question were u clumsy as child?

  3. Thanks for both your comments, it's great to be able to reassure parents that it is a condition with a fairly straightforward solution, and a great outcome! Joseph is now a bright, bouncy toddler with loads of energy, and I love being a mum.
    In answer to your question Alistair- I can definitely be a little clumsy, especially when tired, but I don't know how much of that is the condition and how much is just individual traits.

  4. Danielle you are a superstar,thank you so much once again for sharing your story (and lovely pic)- which you can see means a lot to people - and for stopping by to comment on the blog.

    *waving and smiling* to you and little Joseph. xx

  5. Hi Danielle, I enjoyed Reading your story. My little girl has cht and is now 4 years old. She appears to be developing well! I have always worried about whether she would be able to have children of her own, so have found your story very uplifting and positive! She is however quite clumsy.
    Hope Joseph is doing well!! X x

    1. thank you for that lovely comment and so glad to hear your little one is doing well. x

  6. This is a brave wonderful account. Have you seen the articles written by parents with CHT on the Newborn Bloodspot Screening programme? A great source of positivity. Relevant medical facts and information

    I am a parent with a child born with CHT - who did well at school, university and now gainfully employed. Happy and healthy - he just has to take a tablet or two every day!

    Please remain as positive as you sound.

    1. thank you for that lovely comment, I haven't seen the article, if you have a link to it perhaps you could share it here? Glad to hear your child with CHT has also done so well. :)

  7. Visiting this post again today to share with a women on my fb page who's little one has just been diagnosed.

    Hope your well Lisa x

    1. thanks Lisa, I hope the mother finds this information useful and that she will follow up with British Thyroid Foundation if she needs more info or support.

  8. Thank you, we have been worrying since our daughter was born with cht 2 years ago. Still get upset every now and again although we know she is fine. Silly really as she is developing normally. Thank you for sharing your experience. Kathryn

    1. I'm so glad Danielle's story has given you some comfort Kathryn. It's not silly to get upset, emotions are real and understandable. It's great to know that your daughter is doing well. Very best wishes to you.