Hypothyroidism and its effects

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July 2, 2012 by dontbringlulubook

hypothyroidism meant that Lulu needed health care and treatment for the rest of her life

hypothyroidism meant that Lulu needed health care and treatment for the rest of her life

One of Ron and Doris Onions favourite tunes, made so by the relevance to their personal situation, was “You can bring Pearl, she’s a darned nice girl but don’t bring Lulu” – a tune that brought smiles tinged with sadness and poignancy due to the condition, first brought to Ron and Doris’s attention at a country fete on the South Coast in the early 1960s, that would blight Lulu for the rest of her life.  Hypothyroidism, caused by the lack of her thyroid gland meant her body was therefore not making enough thyroid hormone, thereby creating an iodine deficiency and resulting in the need for a medication called thyroxine to be taken daily in tablet for the rest of her life with the dosage depending upon the severity of the condition.

Hypothyroidism can affect anybody at any time. Politicians such as George and Barbara Bush, Olympic athletes such as Gail Devers, actresses such as Kim Cattrall, and singers such as Rod Stewart and Robbie Williams all suffer with thyroid problems to varying degrees that affect their daily lives and require medication to keep the problem under control.

I also have first-hand experience of dealing with a thyroid problem – my partner was diagnosed with Graves Disease two years ago, a similar medical condition related to the thyroid.   Rather than an underactive thyroid as was Lulu’s problem, Graves Disease means your thyroid is overactive. In both cases, the thyroid’s function needs to be regulated  – as the Doctor who initially diagnosed Lulu said, if the thyroid gland located in front of the windpipe at the front and sides of the neck does not function properly the person concerned may demonstrate both mental and physical sluggishness.  After all, the thyroid gland is known as being the body’s own thermometer, vitally needed to regulate the body’s emotions, temperature, behaviour, and general alertness. As Ron and Doris were advised, severe hypothyroidism in children can result in cretinism and they spent all of Lulu’s life fighting to give her the best care and as normal a life as possible.

Nowadays, much more is known about a thyroid problem such as hypothyroidism and the drugs to control the problem and, as such, the prognosis and treatment is far more humane and enables the sufferers to lead a far more normal life than was possible fifty years ago.  As Lucy, Lulu’s niece writes in the book “Don’t Bring Lulu” ‘whenever we visited Louise, you sensed a difference between the way they (her mother and grandparents) regarded Louise and the attitude of her carers.  The staff showed fond affection, while her parents and sister expressed love, but with it there came an underlying tinge of sadness.’

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4 thoughts on “Hypothyroidism and its effects

  1. Hi there. My name’s Matthew, I’m 35 and I also had hypothyroidism as a child (I still do, but controlled by medication). I read some of the reports about what happened to Lulu and was surprised to find references to autism, anxiety and that this was all caused by her lack of a thyroid gland. I have all three (I was diagnosed with Asperger’s syndrome this year) and had terrible trouble at school (I ended up in a ‘special’ school in Ipswich which was run by cowboys and was a nightmare) but got my A-levels and then a degree in 1998.

    I always thought my behaviour problems were caused by my thyroid, but my Mum reckoned the two were coincidental. It’s interesting to find that there was someone else with the same two conditions. Is that common with untreated hypothyroidism? At what age was Lulu’s condition first treated with hormones? I wasn’t treated until I was 4 and started school, when my Mum noticed I was noticeably smaller than other children, and insisted that the doctors find out what was wrong. I was told more than once that my life would have been very different had I been born 10 years earlier. It’s very sad to find out that here was someone 15 years older than me who had such a different life which ended so sadly.

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    • Sarah Onions says:

      Thanks, Matthew, for your reply. My understanding is that Lulu received treatment for the lack of a thyroid gland from as early as 3 months old when the lack of a thyroid gland was first discovered.
      But she also had substantial brain damage confirmed in 1967/68 so I think that the autism, and anxiety may have been caused by that.
      Why were you told that being born 10 years earlier would have been very different for you?
      S.O.

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      • I think my Mum, or aunt I think it was who told me that, did not realise that thyroid treatments had been available for decades before I was born. Also, not all parents looked after their children who had disabilities until about the 1960s; they sometimes abandoned them to institutions. I looked up the history and it turns out that synthetic thyroid had been available since the 1950s, and porcine thyroid since the very early 20th century. Your site very prominently mentions Lulu’s lack of a thyroid gland so I assumed it was the cause of her problems, but I did not realise she had unrelated brain damage.

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      • Sarah Onions says:

        From my perspective,the interesting thing is what caused the damage to Louise’s thyroid and brain. There were various different theories in the family. But back to your points, how effective is the treatment of Graves disease now? As well as Lulu, I also have a very close friend who is suffering from thyroid problems.
        A sad co-incidence, was that Dad had an unusual birth mark on his neck in the shape of the thyroid gland.
        (sorry for late reply – Mum had Parkinson’s now so I am slowly learning about that)

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