Amelia O'Toole, Empty Sella Syndrome, Hypopituitarism.

Hello fellow bloggers/blog readers,

For a long time I wonderedwhat’s up with me?

I was always a regular height, and I always grew the right amount each year, until around 2 years ago. All of a sudden I just kind of stopped growing, gradually my growth rate had slowed down meaning that I was growing less and less each year. It was very apparent because we knew that at that point in time I should have been growing like there was no tomorrow! But I just wasn’t, after about a year of not growing I became very self conscious and extremely anxious about my body. I had started to get a bit larger, and I had always been relatively slim. (My body was saving the energy for growing as fat- to put it simply) I could tell that something was wrong but I didn’t know what, I felt like I was weird and abnormal, everyone else had shot up, including my younger sister.

It wasn’t just me that had noticed that I wasn’t growing, my parents did too and they were a bit worried. After about a year my mum decided to take me to the doctor as well it was getting a bit peculiar as to why I hadn’t grown much. Our local doctor did blood tests then told us to see a paediatric doctor (a doctor who specialises in children). So we did that and I was issued for more tests and an MRI scan on my brain and a bone scan (to see how old my bones were).

We got the results back from the bone scan and the MRI. The bone scan showed that my bones were 11 years old and not 13. The MRI scan result wasn’t too good either, my Pituitary Gland (a gland in your head that controls lots of different hormones which make your body work in different ways) was unusually small and had given up producing hormones that my body needs, meaning that I would have remained the same height and not have grown or developed more at all. I then had to go back to the hospital for more tests. My Pituitary gland was not great. This is what a Pituitary Gland should look like, and here is what mine looks like:

Empty sella syndrome, hypopituitarism

So I have Empty Sella Syndrome and Hypopituitarism. Apparently I was born with it, which is quite rare, and I’ve done well to get as tall as I have! It was confirmed that my Pituitary Gland was not producing 2 important hormones. My blood tests should have been scoring around 7-10 for these hormones, but they were scoring a pathetic 0.1, meaning I’ve run out of what I need. One of these is the growth hormone, so I now have Growth Hormone Deficiency. For the other hormone (I don’t know it’s name) I will have to take tablets everyday for the rest of my life, and I need to keep having tests on different hormones that make sure other things in my body work too.

The growth hormone has to be put into the body- through the skin every day, first to make me grow and then to keep my bones strong. Now the way it has to be done is by injection and I have to do this every day. Being needle phobic I was terrified and felt quite worried when I found this out. (When a needle is put into my body I faint and sometimes throw up) But there was 1 option that didn’t involve needles, it was a special new technology all to do with air pressure. I was relieved, usually the doctor would give you some DVDs to take home and decide what way you want the hormone injected into your body, but knowing how bad I cope with needles, we straight away went for the needless one and I feel very privileged to have been offered this option.

So there you have it, that is my growing challenge that I am going to have to face. I will be updating you every month or so about my growth and how everything is going. So that you know that I am being looked after I want you to know that I will be seeing my consultant every 6 months, my specialist doctor every year and I will have a nurse that can come round my house at any time if I am having problem with the medication or if anything happens she will be someone I can talk to.

It is very hard to explain how it feels to have this condition as it is quite complicated and overwhelming. I don’t think it’s easy to fully understand it unless you have it, and if you do I’d love to talk to you. I have been very self conscious and it is quite hard to open up about but I think talking about it here will help me. But please don’t worry about me as I am sure you have better things to think about. I wanted to write this blog to show that there is a good side to everything and if I share my experiences I can help other people like me to look on the bright side and everything will feel much better.

Oh and just so you know, this isn’t what my blog is all about. I adore make up, fashion, art, photography and drama and will be sharing lots of ideas and experiences that you might enjoy too!

If you are going through anything similar to this, don’t worry, everything will be fine and just let the medicine do its job. Sign up to follow my blog, I am here for you! Xx

Never stop wondering…

Amelia Xx

Pretty please share my post *makes puppy eyes face*


11 Comments

11 Comments on My Growing Challenge

  1. Pippa Benton
    January 3, 2016 at 4:31 pm (2 years ago)

    What a brave and truely inspirational person you are Amelia . To have the maturity to face the world and explain the challenges that are ahead of you is amazing. I am totally in awe of how you are coping and know from reading your blog that whatever the future holds you will be fine.

    Reply
    • Amelia
      Amelia
      January 3, 2016 at 6:34 pm (2 years ago)

      Thank you so much Pippa! I will always try my best to be positive. Amelia Xx

      Reply
  2. Sarah
    January 6, 2016 at 8:02 pm (2 years ago)

    Well done Ameilia, not easy to put pen to paper when dealing with the emotional ride of a pituitary condition, something I’ve also been recently diagnosed with! You have inspired me, stay positive and find humour in everything! Take Care xx

    Reply
    • Amelia
      Amelia
      January 8, 2016 at 11:37 pm (2 years ago)

      Thanks Sarah, I’m glad you were inspired. I hope everything is going well for you so far. Stay Positive! Amelia Xx

      Reply
  3. Katherine Grant
    January 8, 2016 at 9:32 pm (2 years ago)

    What an inspirational first blog Amelia, thank you for sharing and well done for being so upbeat and positive. Lots of love xxx

    Reply
    • Amelia
      Amelia
      January 8, 2016 at 11:40 pm (2 years ago)

      Thank you, these types of comments really keep me positive and hopeful for the future. Amelia Xx

      Reply
  4. Lily F
    January 12, 2016 at 5:31 pm (2 years ago)

    Hey, I’m Lily. I’m 13, I have read all your blog posts and I think you are an amazing and inspirational person. I aswell have dealt with really scary challenges recently. But mine will pass. I love Rose Gold! #bestcolorforeverything!!
    Stay brave & Strong
    Lily x

    Reply
    • Amelia
      Amelia
      January 12, 2016 at 10:40 pm (2 years ago)

      This is so kind and it is so nice to have somebody my age to be reading my blog, rather than, you know, my Mum’s friends! Haha! Rose gold is the BEST COLOUR! I hope your challenges are going well and everything will be alright in the end. Keep being positive!

      Amelia Xx

      Reply
  5. Angela Melvin
    January 20, 2016 at 9:39 pm (2 years ago)

    Hi Amelia,
    I’m afraid I’m one of the oldies, but I too love fashion, makeup & art! I wanted to write this to say a big ‘thank you’ for being brave, confident and strong enough to share your story. My niece has recently be diagnosed with a growth hormone deficiency and a condition called Russell Silver Syndrome, so hearing you talk and inspiring me gives me a lot of hope for her future. You have a real talent of explaining things – you make more sense than lots of the leaflets out there *someone give that girl a job!!! I am very thankful for this and I will be sharing this with my nieces Mum & Dad and the rest of my friends and family. Keep writing, keep smiling, and keep positive. You’re a star. From the bottom of my heart … Thank you. Angela from Glasgow, Scotland

    Reply
    • Amelia
      Amelia
      January 21, 2016 at 5:13 pm (2 years ago)

      Thank you so much, I am sending your niece all my love and hope that everything is going well. Please could you tell her that I am here for her and that she can always leave a comment if she wants someone to talk to. Thanks again. Xx

      Amelia Xx

      Reply
  6. Joyann
    July 8, 2016 at 2:25 pm (1 year ago)

    Hey, Amelia. I was just browsing the web when I found your blog. At first the science nerd part of me thought what a great thing your blog would serve by being a well documented medical case for the future. But then the human side of me realized just how important your blog is to people struggling with various conditions. As I read deeper and deeper into your blog as you sorted through what was happening to you and trying your best to remain optimistic I immediately realized that so many people could take a page out of your book and the best service your blog can do is reassure and inspire. So yes, you are brave, but you are also so so strong by not letting this beat you down. This quote from one of my church leaders made me think of you “My dear friends, you are important. You are loved. You are needed. This work is true.” – President Dieter F. Uchtdorf. Keep it up, girl!

    Reply

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