do you still have symptoms of hyperthyroidism when your levels are normal with mecicatiom?

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My dr says my levels are ok at the moment, but I cant say I feel any different. I am due to come off the medication in July to see what happens to my levels then I may need the radio iodene treatment. I have put on a load of weight in the last year but everywhere I read says I should be loosing weight. I have a really hard time with my memory and its now effecting my job. I have swelling in my legs now and discolouration on my feet, which they are putting down to my thyroid. I have suffered with this for a year, but I still don't understand it.

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  • Posted

    Hi Claire, From what I know about the thyroid we can gain weight when we have an underactive thyroid and even on medication and normal levels you will still gain weight. When I was underactive I could look at a lettuce leaf and gain weight and it was so frustrating. It didnt seem to matter what I did I could not shift the weight. But if you have graves disease you should be losing weight.....are you sure that is what you have or is it Hashimoto's which is the opposite of graves but with similar symptoms. I swung into graves disease and lost 14 kgs without thinking but was very ill for a long time. The memory thing is thyroid related too and I find it best to write everything down. I have a big diary that goes everywhere with me and it is the only way I can remember things. Brain fog is just another sympton we have to endure. The swelling in the legs I dont know about. Not something I had so not sure about that. There are so many things that the thyroid controls that the symptoms are wide and varied. Keep notes and tell your doctor everything....
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  • Posted

    It seems like it is easiest to lose weight when your levels are closer to the borderline high.  It also seems like the TSH, which is the primary marker that makes the doctors say you are either normal, hyper, or hypo, does not easily restart once it is low from having too high levels of thyroid hormones.

    To me, I never suffered with GD as much as with the Methimazole I was given to block the thyroid.  Weight gain, brain fog, losing energy were always worse when taking the anti thyroid medication.  I am in remission now and very glad of it.

    One of the biggest problems is that the doctors sometimes attribute the symptoms to the hyperthyroidism even when they are the same for low or high.  They are simply more worried about hyperthyroidism because your heart can beat so fast it would kill you.  As long as your resting heart rate is between 60 and 80 you don't really need to worry, though.  Other than going into a coma with severe swelling, they are unlikely to attribute your symptoms to low thyroid, however.

    The doctors can put blinders on and simply treat you according to your TSH numbers:  If TSH is high your thyroid hormone production is low, if it is low your thyroid is said to be high.  It is because the endocrinologists were so insensitive to my symptoms when my TSH was in range that I utterly refused to have RAI or a thyroidectomy.  I still have no trust that they would ever supplement the thyroid hormones adequately if my thyroid were destroyed. 

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  • Posted

    Hello I also have graves can I just say I put on a lot of weight  which I put down to the carbimazole . Have now been off the Meds for 3 weeks  and I have lost 5 lbs so in my experience it is the medication slowing your metabolism down .
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    • Posted

      Totally agree! I have been on a block and replace for 2.5 years and now only on 5mg of carbimazole as of 6 weeks ago. I put on about 2 stone in while on 40 mg carb but 6 weeks  of the lesser dose and I have lost half a stone. carb definitely inhibits your metabolism...my endo had warned me about it. having always been a skinny minny I didnt believe him esp as I have GD...but he was right!
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  • Posted

    I have just posted a new post Claire i had a total thyroidectomy a week ago today i feel a new woman i think for you, its important not to let things run my surgeon told me last week he felt i was left go, given more medication to take nad get on with it, in the end i felt dreadful,  you must keep pushing your GP to help you, dont worry about the weigh gain i had 7 pounds  up in a week the week before surgery when all i could eat was fruit and veg as the goitre in my neck was so large, i had never been as heavy when i was having my children even than when i was on the carbizamole/neomercazole, its diffrent stroke for diffrent folks, i would get the odd look ffrom a person who asked me was i hyper or hypo, as if to say i should be slim being hyper,  it can get you down if you let it but dont let it, its a side effect, not what you are doing, so keep going for regular blood tests, its a bummer i know but keep on to your GP to get you back to the Endo its the only way to harper after them, best of luck!
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  • Posted

    I dont agree Debbie I had graves for 5 years until id the removal of the gland last week and gained weight predominantly, the only time i lost some weight was when my medication was not the correct dosage until the dosage was correct for my levels so it really is diffrent strokes for diffrent folks, everyone has symptoms unique to them, its to oush to see the Endo and get yourself sorted is the key and not to be fobbed off with more tablets if you dont feel any better, step two then is needed 
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    • Posted

      I agree siobhanire. Everyone is different. It is amazing the stories you hear and how everyones symptoms, reactions and treatments are all different. All we can do to help others is just say what we had and how we treated it. I hope you will be much better now you have had your gland removed..I know I did.
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