I have Graves’ disease with TED. Bloods fairly stable for 18mths still requiring medications which I trialed myself to go off and went back hyper !! Was treated with too much carbimazole that I am now gone hypo I think, t4 is <5 normal (8-22) , tsh 3.03 normal (0.35-4.9) t3-2.74 normal (2.4-6.0) . I cannot understand why my tsh didn’t raise higher?? Also I gained weight almost a stone and my biggest problem is fatigue and muscle pains in my legs which wake me from my sleep, I have tried simple pain killers for this but this is going on weeks and I don’t want to be taking pain killers daily as they don’t work very well anyway!! Does anyone have any advise? Is this pain from a low t4?
I have heard from my endo who has reduced my carbimazole from 20mg to 5mg a day and to recheck my bloods in few weeks again!!!
Many thanks x
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Yes that is a drop in carbimazole , my usual dose was 5mg until I made a stupid decision to trial witout it and went hyper (not too hyper ) but it surpressed my tsh to 0.01 , t4 within normal range and t3 over at 7.45. I trialed 20mg for 6 weeks which brought me to euthyroid but my endo decided for me to stay on 20mg for a further 6 weeks and I went hypo which I knew was going to happen!
I last tested b12 folate and ferritin 9 months ago and all were within normal limits but I will recheck these to make sure thanks
I’m currently only taking magnesium sachets with last 2 weeks to trail would it help the pains in my legs , should I take additional supplements?
I did trial gluten free diet and found it hard to stick to as I didn’t notice any difference? Maby I should have given this more time.
Did you ever get your Graves confirmed and know you had over range and positive TRab / TSI antibodies ?
The Carbimazole is an Anti Thyroid drug and blocks your own, new daily production of T3 and T4 thyroid hormones into your blood stream.
Your TSH is now up at 3 - ( odd for Graves ? ) -
and your T3 is too low range and your T4 reading below the range and why your feeling as you do and you very hypothyroid.
The AT drug is being reduced - by a substantial amount 15 mcg - as generally titration is by 5mcg at any one time - and your T3 and T4 should start to increase through their ranges and your symptoms relieved.
Pain killers will not work- your body is being starved of thyroid hormones - this will be relieved when this much lower dose of the AT drug kicks in.
Your metabolism is running very slow and suggest you also get your core strength vitamins and minerals tested as if these are not maintained at optimal levels your health issues are further compromised.
When metabolism is running too slow as in hypothyroidism or too fast as in hyperthyroidism the body struggles to maintain core strength vitamins and minerals no matter how well and clean you eat - and we need a strong core to help support us through any illness.
We need to see a ferritin, folate, B12 and vitamin D blood test result and range - and can advise where your levels need to be to help support you through this difficult phase.
How are your eyes ? Do you see a specialist in Graves Ophthalmopathy - and are you going to try and stay on the AT drug longer term as this does seem to be the better option as suggested in the most recent research paper we have :
If you wish to read around Graves Disease I recommended Elaine Moore's website and several published books - elaine-moore.com
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P.S. Just found a general reply from you on the end of an earlier post informing us of your over range and postive TRab reading - so yes - we are looking at Graves - thank you.
Glad you have an eye specialist on board :
You might like to think about looking at the Thyroid Eye Disease charity tedct.co.uk
as someone else recommended to you in a previous post- as I understand they have endos and eye speialist working in conjunction with the patient in fine tuning and titrating the AT drug by minimal doses so to not upset the eye issues further.
Yes have been confirmed graves from antibodies . Trab antibodies raised but have lowered over time on treatment ! My own fault for going hyper after being euthyroid as I self decided to trial without 5mg in the hope I was in remission! Sadly I was proved wrong!!
Yes I see a local eye consultant who referred me to a specialist in TED who did a successful treatment for my eyelid retraction !! Non surgical if anyone is interested to hear how it worked it was through Botox which relaxed the muscle back down and as it was awful for a few weeks as the eye almost closed once the Botox wore off the eye returned to a normal level and didn’t retract back up I’m almost 6 months post this and eyelid still in a good position !!
Unfortunately my uneffected eye is now showing signs of TED , eyelid swelling and tissues around the eyes puffing, I’m currently on a reducing dose of steroid drops for 4 weeks to try to resolve this , I’m only early days on this so can’t comment if this is beneficial or not as yet!
Thank you for your help much appreciated and I will read the links you have sent me x
Please stop blaming yourself - it's the nature of the beast that is Graves - you've a lot going on.
Good you have a TED clinic near you - and interesting treatment option re the botox - stay with the steroid drops - give it time - though
Try and stay calm and now on the much reduced dose of the AT drug your thyroid hormones will start flooding back into your body and these heavy achey legs and extremes of symptoms will start to ease.
Please get your core strength vitamins and minerals run - as low levels of ferritin, folate, B12 and vitamin D can unnecessarily compound your health issues further.
I’m not sure if this helps but I’ve had a stable underactive thyroid for years. However, in the past 6 months I’ve had terrible aching pains in my legs. Almost unbearable. It feels like I’ve run several marathons and is relentless. My bloods were checked and my TSH was 4.65 and my T4 was at the lower end of the scale (should be towards the top). I only feel well when my TSH is around 1. Since increasing my levothyroxine by 25mg the aches have almost disappeared. So it could be that your levels aren’t quite right and your medication needs adjusting.
Oh I am sorry .... I think that is my dread to - yoyoing up and down for the rest of my life - urghh .I am 5ft and petite and always been light weight ... anything else just would not be me - have already lost my hair twice and my skim pigmentation - my weight change would be the last straw! let alone the pain you are now getting.
I am not sure I can help you directly but I too have - Graves Disease - and am on carbimazole like you. So hello - I don't know many that do have the same. Sounds like you are a bit ahead of me - I was only diagnosed in May this year. .I am on 5mg Carbimazole - all along.
Because of the forum I am making sure through my GP that I have a blood test every month so that I personally can monitor my bloods TS/T4/TSH and then flag to the consultant/ GP if I think meds need changing .... so that I don't get prematurely thrown into hypo by lack of monitoring and picking up the signs early enough - which I believe is the the risk.
If was me I'd just go back and make sure they pay attention to you - get the blood test done and be a few steps ahead of the endo in understanding what's going on so that you are prepared and ask all the right questions / give them all the symptoms so you can work as a team. And get bloods done regularly ...
I'd involve the gp too as I don't think you should assume that any other malady is caused by graves .... and endo consultants are specialist - GP's need to look after the whole you.
If you are not happy go into writing on everything to the gp and endo - it gets action.
but do go to GP about the pain you are experiencing - is what I'd do ...
I hope you get things sorted .. not good to be in pain let alone everything else.
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