5th March 2015: Our Journey with Congenital Hypothyroidism

Many of you may not be aware that Bubs was born with Congenital Hypothyroidism. I have not spoken about it much on my blog since finding out when he was 2 weeks old. I have now decided to write this post for all parents out there who may of just found out their baby has this condition or parents who have children born with this.

Firstly everyone tells you, of all the conditions your baby could have been born with this has to be the best. Your child will grow up totally normal, lead a normal life, be like any other child and no one will ever know they have this condition unless you tell them. This is easier said than done.

I remember the call we got a couple of days after the heel prick test asking us to go to the hospital right away. I felt scared and nervous as I had never heard of this before, I didn’t even know what the thyroid did or was used for. Now I could tell you everything about it talking for ages about what it does and how important it is in everyday life.

The first thing we were told was… This is NOT life threatening or life limiting. I played those words over and over in my head and felt so relived that those were the first words the consultant said to us. He spoke all about the condition to us and explained what it was. He then asked us to go to Addenbrooks Hospital to have a scan to see if Bubs had a thyroid which just wasn’t working or if he didn’t have one at all. We agreed, had the scan and it turns out he does not have a thyroid gland at all. This was really hard to take in at first, however it gets easier trust me.

I am massive worrier and I was wishing Bubs time away for the first few weeks of his life. I just wanted to know his medication was working and he was going to be OK.

He was put on 50mcg of Levothyroxine which bought his TSH levels right down, his dose was then decreased to 40 two weeks later, then it went down to 35mcg. The consultant did tell us that the bigger he got the dose would go back up. However it went down to start with because he was started on a high dose (for him as a baby) to get his really high levels down initially.

We were having bloods done every 2 weeks and I felt happy with that because I knew if something wasn’t right and his levels were a bit off 2 weeks wasn’t to long to wait to find out and rectify his dose. However as his levels became more stable 6 weeks ago, our consultant asked for the blood to be taken in 4 weeks time. I became very anixous thinking if his levels were off 4 weeks was a long time to wait. 4 weeks was on Monday 2nd March we had the bloods taken. I then got a call tonight (5th March) to say that his levels were absolutely fine and he could carry on with the same dose as he is currently on.

I can not explain the relief that came over me. I felt like the world had been lifted off my shoulders and I felt like I could properly relax and sleep now. The fact we went 4 weeks and now his dose has stayed stable is fantastic news and I just had to share this as I really am so happy.

My little Bubs is doing fantastic, I am so proud of him and all he has been through in his little life. I am sure he will continue to make us proud for the rest of our lives. He’s got a fantastic little personality, however I have one regret. One massive regret that I can never change. That is I wish I had enjoyed my Little Bubs more while he was still a tiny baby. His life just consisted of worrying me, going to doctors appointments, blood tests, consultants, worry over his prolonged jaundice (which is normal with CH) Now here we are at 5 months almost 6 months on and I feel like now I can really start to enjoy him and stop worrying so much about his CH. It will not rule our lives nor will it rule his life.

Giving him his medication is all part of our routine now. I give him it first thing in the morning consistent every day.

Make sure if you’re a new parent reading this, enjoy your baby while he/she is still a tiny baby I know its hard but before you know it your baby will be crawling, walking, talking and being cheeky to you. You will be like me wondering where the time has gone and wishing you had enjoyed those precious first few weeks.

I found it hard to find much information to start with but I have since found groups and pages to talk to people. If you are one of those new parents who has just had this news, please message me and I am happy to speak to you and answer any worry or concerns you may have. I have been there and know how hard it is for the first few weeks.

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  1. Unhinged Mummy (aka Janine Woods) 23rd April 2015 / 20:30

    I knew I’d seen your profile pic somewhere before 🙂 My little girl 15 months old also has Congenital hypothyroidism. I don’t know anyone in real life with it so it’s always nice to hear from others who have little ones with the condition. I can’t believe how devastated I was in the beginning knowing what I know now. How lucky are we and our Bubbas having access to that little magic pill. I’m also so grateful to the heel prick test. Our babies are going to be just fine 🙂

    • bloggingmummy87 25th April 2015 / 07:35

      Hey, yeah it was awful news to start with but as you say they will be fine thanks to the heel prick test and the pill. Well actually my boy is on liquid thyroxine. he was on the pill but his levels were so up and down they put him on liquid and we have been stable since December now. Im so used to giving his medicine to him it all part of daily routine now as you will i know, most of the time i forget he has congenital hypothyroidism. xx

  2. MJ 24th March 2018 / 00:34

    Hi mommas! I stumbled upon this blog post and I am so glad I did! You’ll be happy to hear that your little ones really can and will lead completely normal, happy, and healthy lives – and I speak from experience! I was born with congenital hypothyroidism, with no thyroid gland whatsoever, in February of 1989, making me 29 years old now. As was mentioned in this post, I take a magic pill every morning (Levothyroxine) and you would never know that I am missing a vital body part. It is nothing more than a ‘fun fact’ about me – it has not and does not inhibit my quality of life at all (besides those first few weeks of my life when they were figuring it all out, which it sounds like you’ve already overcome! With just a few blood tests here and there and infrequent dosage adjustments, all is well!

    • Blogging Mummy 26th March 2018 / 20:01

      Thank you so much for your comment. Actually yes I wanted to do an updated post which will be coming soon. My little boy is now 3 and he is doing fantastic. At the start as you say it is all up in the air and upsetting and very unsettling. Now we are 3 years down the line it is so easy, we don’t even realise that our son has CH because his medication is part of a normal routine. When he takes it in the morning we don’t even really realise what it is for its just like having breakfast, just all normal. Thank you so much for your comment because it can really help other people who are just starting this journey. xx

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