U is for… Underactive Thyroid

Posted on 14th January 2011 in goitre/ hypothyroidism/ myxoedema/ symptoms

My friend has just been diagnosed with an underactive thyroid also known as hypothyroidism or myxoedema.

She’s been describing her symptoms to me with incredulation and as I’ve suffered with one since I was around 17 years old I don’t really register the symptoms anymore, they are just THERE, all the time and I accept them.

So when she said to me today that she’d gone back to the doctor in a panic with pins and needles – I said “oh yeh I get that” and she said she kept forgetting stuff, so I said “oh yeh I do that” and so on, and so on, it soon became apparent that there are a whole heap of symptoms that they don’t tell you about.

Here are some of mine:

Pins & Needles/Numbness – get this all the time, sometimes a lot worse than others, I generally ignore it. Specifically I have pins and needles in my left arm nearly all the time. It is also generally colder than my right arm.

Coldness – I quite often have cold hands/feet. Also, if I get cold I get REALLY cold, teeth chattering the whole nine yards.

Hotness – conversely, if I get too hot, I get REALLY hot and find it hard to cool down. Let’s say if I were a boiler I recon they’d say I had a dodgy thermostat.

Palpitations – tricky one this, I prefer my thyroid to run on the upper limit of the vast range of ‘normal’, a down-side of this is that sometimes, especially at night, I get palpitations. Suspect am meant to mention this to the GP but then they’d lower the dose, and I don’t want that.

Weight gain/loss – this depends where I am in the aforementioned vast range of ‘normal’, again I prefer to run on the upper limit as it means that I don’t put on weight, and that if I diet I can lose weight. If I am in the middle or lower range then I gain weight unless I eat less than 800 calories a day. Good game.

Hair colour – my hair doesn’t respond as hair dressers expect it to. I do warn them that the colour wont do what they expect, but each new hairdresser has to find out for themselves. “It shouldn’t do that” they always say.

Hair texture – it can snap off sometimes as it becomes dry and brittle, I’ve never worked out whether that is worse when under/over.

Dry skin – as above really, lots of moisturiser needed.

Goitre – a swelling in the neck, I had this for a few years, they zapped me with radioactive stuff and it went down. Cool huh.

Forgetfulness – this is awful and embarrassing. Some things I can remember, somethings I can’t. Simple as. No rhyme or reason to it. I have no control over it and it doesn’t mean I love you any less.

Intellect – this one I think I mind the most. When I am running at the upper level I can think clearly, I can converse eloquently, big words spring to mind easily and a witty retort is never far away. When it’s middle or lower I am a brain dead numpty. As the levels drop down it is as though bits of me literally get switched off.

Indecision – not sure this is actually down to my thyroid but I’m blaming it anyway. Sometimes I make quick decisions, usually the more important something is, the quicker I decide. If, however, I have a choice of say Heinz Salad Cream or Hellmans Mayo to go on my salad, I can honestly sit there for minutes weighing it up. Apparently this is reasonably annoying… The same can apply to tea and coffee half way through the day – the girls at work are used to me having to think about it!

Expression – my face changes depending upon the levels. I think (hope) I am the only one who can see it but it is definitely true – I look like a completely different person in some photos.

Energy – sometimes I have none. None at all. Getting up to make a cup of tea seems impossible – don’t get me wrong, I still have to and I have to sort the boys out and get to work, but it’s a bloody achievement. Othertimes I’ve done things before I even realise that they need doing.

Tiredness – sometimes I could sleep forever. Othertimes I can’t sleep at all – even though I’m tired.

Fertility – it can affect you in this area, I’ve had 2 miscarriages, no idea if they are linked to it.

Voice – it gets deeper (shall we say huskier, that sounds better right?) when the levels are lower.

Personality – when it’s running right I seek out people, I want to converse and learn and play. When it’s not I want to curl up, draw the curtains and can you bugger off please.

That’ll do for now, truth is there are probably more and I’ve probably forgotten them 😉

The only plus point is that I get free prescriptions because of it – I have to take thyroxine for the rest of my life and the only way they can ensure people do that is to give them free prescriptions I guess?

If any of the symptoms ring a bell with you – go see your GP.

21 Comments

  • Reply Julie 14th January 2011 at 7:53 pm

    Great right up. I’ve been underactive since my first partial thyroidectomy in 1992, I then had the second lobe out in 1999. Most of the time I feel ok, not brilliant, but ok, and sometimes I feel rubbish. We each find a way to deal with it.

    • Reply mrsljhall 14th January 2011 at 7:56 pm

      Thank you. I’ve been offered a thyroidectomy but it scares me! I think we get so used to our symptoms that we wouldn’t know what ‘normal’ was if it bit us on the bum!

  • Reply Kate 14th January 2011 at 8:15 pm

    Thanks for writing this post. I come from a family littered with thyroid problems. My mum had an overactive thyroid before I was born but was treated without surgery, only medication. Then, in the 80s, my Dad was talking to his brother who had just been diagnosd with underactive thyroid and recognised his own symptoms. Got a blood test and he was diagnosed too. After diagnosis, he lost a LOT of weight. It was considered rare for a man to have thyroid problems.

    Then a few years later, my mum then got diagnosed with underactive thyroid and takes medication to this day. My half sister has been “borderline” but her levels went up again naturally, and she lost a fair amount. My younger sister has been diagnosed as underactive and takes thyroxine to my knowledge.

    As for me, I’m OK. I think. If I mention it to my GP, he gets me a blood test straight away because of my strong family history. The last one I had was when Missy Woo was just over a year and I was suffering with really heavy periods which I believe can also be considered a symptom. But I came back OK. I struggle to lose weight sometimes but I think that’s more to do with my mindset and my food intake than any condition. I know some people say that having underactive thyroid just makes you feel like you’re suddenly only got one speed – slow. I’m not like that.

    Interesting you were diagnosed at 17. Most people develop it later in life. There is not much information out there about it but a heck of a lot more than there used to be.

    • Reply mrsljhall 15th January 2011 at 11:59 am

      Hi Kate, does sounds like you’ll get it at some point hun sorry! There is often a very strong familial link so you may find you get it in later life – as you said though your gp will know to check immediately.

      It’s a very poorly resourced area of medicine. But I am very grateful to suffer with it in the UK where prescriptions are free – in the USA there are lots of ladies who can’t afford the medicine which is awful :(

  • Reply sheila2010 15th January 2011 at 3:36 pm

    Really enjoyed your post. I too have an underactive thyroid – have done for some years – but never ever new it caused pins and needles – until I was in hospital just before christmas and said that I had been getting pins and needles for some time – and they said it was related to my thyroid. I found your post really interesting – and some things that I wasnt ever aware of.
    (My mum had an over active one too)

  • Reply theboyandme 16th January 2011 at 1:01 am

    Thank you so much for writing this, it’s such an important condition to publicise. I was diagnosed with an underactive thyroid when I was 19. My mum has one and I was starting to show some symptoms but it was mainly the lethargy. I went to the doctor & told her it was either an underactive thyroid or glandular fever. That was 14 years ago now & I’m on 250mcg of thyroxine.

    I recognise most of those symptoms but no swelling in my neck. I get terribly tingly hands ib the summer with the heat, it’s unbearable. The temperature change is outrageous sometimes too; the drop in body temp can happen so quickly, usually when I ‘stop’ after a busy day & the tiredness kicks in. I refer to it as my thermostat being broken.

    The lethargy is terribly, some evenings I don’t even have the energy to lift my fork to eat. At the mo, my skin is atrocious.

    I also have issues with speech when I’m tired. The words leave my brain correctly but somewhere along the line they get all jumbled and I end up sounding like Mrs. Malapprop!

    Oh and don’t forget the libido!

    • Reply mrsljhall 16th January 2011 at 10:49 am

      Ok I wont mention the libido! Actually I didn’t mention it, you did :)

      It sounds as though we have the condition in quite a similar way. The weirdest thing I find is that I often have symptoms that are relevant to it being under & over, which the doctors say “isn’t possible” but then they usually do concede that I do. Makes it very hard to treat and generally means that I just try to ignore it and get on with things!

      What do you mean about your skin – dryness or spots? I get dry skin but also get the occasional horrendous spot – I have one at the moment and OH said to me yesterday “is that spot bothering you, it looks awful” cheers dude!

      Re the slurred speech, I counter that by being permanently pissed 😉

  • Reply Julie 16th January 2011 at 10:33 am

    I agree, it is interesting that there was a diagnosis at the age of 17. I was 21 and was asked if I had done or had experienced something different or out of the ordinary. I wonder if this is a common trigger point?

    • Reply mrsljhall 16th January 2011 at 10:49 am

      That’s interesting. Did they give you any indication of what could have been a trigger?

  • Reply Beki Davies 16th January 2011 at 11:01 am

    I was diagnosed at 25, after 2 years of tests with doctors telling me that it couldnt be underactive thyroid as I was too young! It’s debilitating, although not life threatening. I also think it could be heriditary as 4 others in my family have been diagnosed. I wish GPs were more pro-active on helping rather than just testing your thyroxine levels and changing dose.

    • Reply mrsljhall 16th January 2011 at 2:49 pm

      It is a area of medicine that just doesn’t seem to receive much in the way of research funding and the parameters of ‘normal’ are ridiculously broad so people often suffer quite badly yet their blood results put them in the ‘normal’ range. Very frustrating.

  • Reply Laura LittleStuff (@littlestuff) 20th July 2012 at 7:33 pm

    Oh, I have struggled the last month or so with the most horrendous brain-dead-ness imaginable. I have been so FURIOUS constantly at myself. ”bits getting switched off” is the perfect way of explaining it. Like there are cold dark bits of your brain where intellect used to buzz happily in sunshiney warmth. Reading this just made me twig… time for a blood test and to up the dose.

    One thing you didn’t mention is (and I’ve just had to do literally 5 minutes googling various versions of ’hand numb wrist joint fluid’ to find the words as my brain has decided it can’t remember what it’s called)… CARPAL TUNNEL SYNDROME! I get this very badly when my thyroid is low.

    My GP agrees the range is ridiculously huge – though she says it’s so for a reason, as some operate perfectly at the low end, and others struggle even when quite happily in the middle.

    • Reply CoffeeCurls 20th July 2012 at 7:40 pm

      Yes I did forgot that one! I’ve never been sure it’s carpal tunnel syndrome but my wrists (and several other joints) are often very weak, it’s a bit of a standing joke in my house that I’m feeble!

      It’s horribly frustrating isn’t it. And so sad that it isn’t a ‘cool’ condition that gets lots of funding as there must be a better way to manage it than this constant up and down of symptoms x

  • Reply Gill Crawshaw 20th July 2012 at 7:56 pm

    I have hypothyroidism too! Good to read about it as you don’t really hear much. Mine was only diagnosed when we had fertility tests after problems conceiving. I’ve always been too hot / cold and forgetful so would never have thought they were symptoms. I had a consultant-led pregnancy because of it and lots of extra scans x.

    • Reply CoffeeCurls 21st July 2012 at 11:17 am

      Glad you were able to get it sorted, I wonder how many other women suffer fertility problems without ever finding out that’s why?

  • Reply mumofalltrades1 20th July 2012 at 9:45 pm

    So glad to read this post. At the minute I am taking meds for overactive. They are talking about giving me the rai, but since my condition is due to an autoimmune disorder my eyes are affected too. They are waiting until they settle down a bit. Can I ask if you had to be isolated after your rai treatment.

    • Reply CoffeeCurls 21st July 2012 at 11:18 am

      It was a while ago so treatment may be different now, I think I had to avoid very young children/elderly for 7 days after the treatment. Mine is also autoimmune, I think most thyroid disorders are. How does it affect your eyes?

  • Reply Emma 21st July 2012 at 11:33 am

    Something I’ve never heard of before, thank you for helping me be aware of it. I do suffer from a few of the above symptoms but then I fear that’s just me as a person and the fact my body/personality is only fully starting to develop now at the age of 23 and 2 children later.

  • Reply CoffeeCurls 21st July 2012 at 7:35 pm

    Well you’ve got the heads up on me as I don’t think I really settled into who I am until I was 30! Keep an eye on those symptoms, it’s a really simple blood test to find out if you have an under active thyroid so worth asking your GP if you feel that you’ve ticked several of the boxes x

  • Reply TheBoyandMe 21st July 2012 at 8:00 pm

    I’ve had one for 16 years, since I was 19. I suffer from all of the above, the ones that affect me (as in I mind them) the most are: exhaustion, unable to get my words out (somwhere between my brain and mouth they get muddled), and weight (I’m fat & struggle to lose any weight).

    A UAT is a really misunderstood affliction.

    • Reply CoffeeCurls 21st July 2012 at 8:07 pm

      I do too. Something which my very thin male doctor does not understand or empathise with at all.

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