Scalloped tongue and teeth grinding - driving me insane

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Please help. I feel like I am going insane with this problem which started around 3 weeks and has become worse every day. I am on 20mg carbimazole and have been for 3 months now. My last blood tests 6 weeks ago were TSH < 0.01, T4 17.9.

?Just before these latest symptoms started I was feeling great. Had my energy back and was able to do most of the things I could do prior to becoming ill. Then this awful jaw clenching and tongue thing happened. My tongue feels too big for my mouth and impossible to relax it. I am constantly pushing it against my teeth. My teeth feel sensitive and my jaw aches. I just can't get any rest from it. I am due for my 6 weekly blood tests tomorrow. Could I be hypo do you think? Or could this be a reaction to the carbimazole? I really am at my wits end with this. Tongue is sore and indented from pushing against teeth.

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14 Replies

  • Posted

    Hi everygreen,

    I have similar symtoms! I am also on 20mg of carbimozole and my last blood test shows that my bloods are getting better, but im not really feeling it! I have awful trouble with my jaw, constantly clenching it and just feel a constant pressure in my jaw joints, its really really bothering me and dont know what i can do! Anybody with any suggestions it would be greatly appreciated!

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    • Posted

      You poor thing. It drives you mad doesn't it? I hope someone can give us some answers or advice. I hope it gets better for you!

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  • Posted

    I had my thyroid out a few years ago and am on thyroxin replacement - and I tooth grind and bite my tongue if my levels go off - only being deeply asleep I do a fair amount of damage and wake up to find quite a mess.  Its happened several times ( last week being the latest ) and currently I can't eat solids and have trouble drinking due to a large septic bite !  I've not found any reason or way of avoiding this yet so would also be interested at its b****y painful - in both senses :-(

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    • Posted

      That sounds awful! Mine seems to be much worse during the day and I feel best in the mornings. When you say your levels are off, do you mean too low or too high?
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    • Posted

      Its bizzare.  If I don't do enough physical activity the levels get too high and I get hyper symptoms, but if I do any extreme activity,( log splitting/digging holes etc ) they drop and I sleep so deeply at night that I don't know I'm chewing myself up !  I'm finding that there is a fairly narrow band of acceptable activty outside of which I get issues one way or the other - the trouble is that taking an extra part tablet only gives over thyroxin symptoms and doesn't help the basic situation.  Its like waves on an ocean swell - and unfortunately the regular thyroxin tabs control the swell and day to day activity creates the waves.  As I live in the country and am very active this is a bit of an irritation !  Its  liveable, but annoying.

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    • Posted

      That's interesting and may explain why if I get a few days when I feel really well and do lots of physical stuff, I then crash with no energy and feel depressed. Before diagnosis, I was going on the cross trainer for 45 minutes a day plus working with the horses. Now the cross trainer is out of the question and I do the bare minimum with the horses. If I have some very active days, I pay for it.

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    • Posted

      That sounds horribly familiar ... and I find any 'emergency activity' such as pushing a car out of a field or lifting a really heavy object can flaten me the next day.  Steady regular activity is no issue - I can walk miles - but if I do too much in one violent burst I am taken out - I know when I've done too much - not sure how, its just a vibe that I don't feel right - no outward sign but I know when to stop, ... am usually far too busy and then pay for it the next day.  I can still function, but have no get up and go - like being vacuum packed into the chair !

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    • Posted

      I'm knocked out after anything more strenuous than daily activity. I feel dreadful if I don't take heed.mseems to be a common bodily response after the thyroid has put your body under such pressure .

      im on 30 mg carbimazole a day, am on reducing dose stage, from 40 mg. I put weight on but heart palpitations reduced. My T 4 has been 42 , now it's 22 , tsh still 0.01 . My t3 levels are less toxic but the itching is starting again.

      anyone else plagued by the itch? I take selenium and complex B vitamins as recommended.

      we are all in the same boat here....feel bloody rotten,minter speeded with a great feeling better day.

      it doesn't last eh?

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    • Posted

      Yes I get itchy.....and all the other symptoms except the jaw issue. I'm having a thyroidectomy as soon as I can get it as its been going on too long.

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    • Posted

      I had the itch for years before diagnosis. It has eased off a huge amount since my levels of T4 came within normal range. I was able to keep the itch at bay with a daily dose of cetirizine. I thought I was allergic to something. Little did I know.
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    • Posted

      When you take replacement thyroxin, do it on an empty stomach and first thing in the morning, then NO MILK , tea of coffee for at least 30 mins as they seem to stop the stuff working correctly.
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    • Posted

      Hi Ross, I'm not on block and replace, just carbimazole 20mg. So I am wondering if this has made me too low and therefore hypo now. I was diagnosed hyper over 3 months ago with T4 levels of 50. My last blood test showed my T4 was within normal range at 17.9 but TSH still < 0.01.

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  • Posted

    I never really understand the figures but I guess someone else on the forum will !!  I think - not sure - if the TSH is very low that means your system thinks you have too much thyroid activity so is backing off the stimulant hormone to reduce it - so I guess you are over at this point.
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  • Posted

    Just a quick update. My latest bloods came back as:

    TSH 3.2 (normal range 0.27 - 4.2) so at last my pituitary is asking for more thyroxine

    T4 13.2 (normal range 12 - 22) so a little on the low side and too close to hypo for my liking.

    ?I see the doc on Tuesday, but in the meantime, I have decided to cut one tablet to 15mg. I feel like I'm poisoning myself with 20mg carb now. Already my tongue and jaw clenching are markedly improved. I may cut to 10 mg tomorrow.

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