Graves disease with awful neck and shoulder pain!

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Since having Graves' disease I have had this awfully stiff neck and shoulder which is so painful!! Worse as my levels fall in range it slightly on the lower scale! Has anyone else had this? It's really getting me down and not sure why its happening!? Ugh

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    Hi karmaway sorry to hear u not feeling well I'm in the same boat I get moving shoulder pain and neck pains which radiates to my jaw and ear then I get dizzy too went to see doctor on Friday but u know they go with blood results not with symptoms and my blood results are normal will try to go and see other doctor bcs I never had these pain before since I been diagnosed with graves disease hope we all get better soon ......try to use some heat pads or get message see if it helps.....samy

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    • Posted

      Oh you poor thing! It's awful isn't it!! What's your t4 and t3 ? I think as it gets lower the pain is worse? As when I was hyper I didn't have it hardly at all? I guess it's the signals getting all confused from the meds maybe! It's getting me down though 😩. My TSH is stil undetectable so could be that also? X

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    • Posted

      Tsh is 1.25 and t4 is 15.5 they don't tell me abt t3 don't know y and I had all these symptoms when they diagnosed me

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      Ok the T4 is lower end isn't it. My t3 is low end too I'm guessing there a battle going on with the thyroid drugs and our thyroid and maybe it bypasses the neck? So maybe causes pain? Im going to see a Dr and will let you know how I get on x maybe try and get your t3 tested?

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      I'm not on any medication ....r u still on medication ? Bcs mine they stopped it after 5 weeks saying it will make me hypo if I carry on taking it that was last year in august since then I'm not on medication but my antibodies are slightly high which is 55 range is 50 I don't understand this either bcs endo never explained this to me and discharged me saying that I'm euthyroid now

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    • Posted

      Yeah been on them since August of last year. Oh ok. How long have you been off them and when was your last blood test? They won't test my antibodies haha say it's not relevant! It's a joke really!!

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      I've been told to take them for another 6-8 mths but I won't be! As soon as I have my op for a different thing I'll be coming off them! X

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      So many times different doctors I been seen by I asked them abt t3 answer is tsh tells abt everything so there's no need to check t3

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      I was diagnosed last year in may took carbimazole for only 5 to 6 weeks that's it after that I never took carbimazole my blood test I got done last Friday and the results are in normal range and they never tested my antibodies either some how this time I convinced the GP to check them that's y she did it

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    • Posted

      Wow that's s quick result to get back into range! How much were you taking? Oh ok haha

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      I was on 5mg ...3 times a day for 5 weeks then 5 mg only once a day for a week then stopped but my tsh was 0.02 and t4 was 56
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      Was really bad had really bad symptoms still got some worst thing was my eye disease the first sign and now my vision has messed up never used glasses and now my prescription has been changed three times in the past six months and today I got it checked again and it has increased again feel awfull
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      Oh no that's awful bless you! I get like wobbly vision? Blurry eyes sometimes ! I think there are supplements that help but maybe you need to go back to you endo or Dr? X

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      Endo has discharged me so no luck I did ask GP for another referral he said he will speak to the endo abt me saying her results are within the range but vision has messed up and still complaining for some same symptoms so I'm waiting for his reply I know they not gonna do anything I will see few more days otherwise will go to see the other doctor

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      Yeah defo change your GP if no luck! Have you tried herbal things or the Paleo diet? This helps me immensely! Also there's a lady on here on Linda that knows a lot and also about Acetyl L Carnitine!

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      I have spoken to Linda she s great helped me a lot I'm taking supplement s have u got goiter karmaway? I had and do they go away I mean goiters or not or they just shrink in size?

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    • Posted

      A small one that goes up and down! I have nodules! Read about lugols iodine but not if you have nodules x
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      They did thyroid scan in November last year confirmed thyroiditis goiter but no noudles
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    • Posted

      Ok, You have Graves antibodies too? Iodine may be good for you but research it first!! I'm not a Dr haha

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      Haha u r such a good person bringing a big smile on my face God bless u I will look at it thanks
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    • Posted

      Yes I have thyroid receptor antibodies positive they call it TRAB and peroxidase positive they were 55 recently
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