Advice on treatment- thyroid now in normal range

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I have had two overactive ‘episodes’; one back in 2015 and when I was in normal range I was told to come off my medication (which I think was a bit sudden). I started having hyper symptoms back in February 2018, it took 6 weeks for any GP to refer me back to the hospital consultant (they didn’t believe I had the correct symptoms).

I have been back to the thyroid consultant today and he has said that my thyroid levels are now in range. He’s said as this is the second time I’ve had it, I have more of a chance of going hyper again if I come off carbimazole so he is going to gradually lower the dosage from what it is now (20mg) to 5mg and be kept on that until my son is old enough so that I can have the RAI. My son is 5 and he said I could have the RAI a when he is 8!!!

I did ask if there was a possibility I could just eventually come off carbimazole without further treatment. Do I wait? Should I consider asking him for a thyroidectomy? Do I change my diet to see if this makes a difference? I have also had problems with my liver due to a mix of high carbimazole dose and a infection. I see the consultant in 2 months so I have some time to consider what I’d like to ask him next. What would you do in my situation? What experiences have you had?

Just in advance: I don't have a copy of my thyroid function levels.

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  • Posted

    I found for myself that my medication lowering needed to be done gradually. I was on 10 mg and my doc dropped it to 5 mg and 2 weeks later I had a rebound. Then I added supplements to my treatment and all my levels started to improve and as they did so, my new doc adjusted my meds gradually and I adjusted my supplements in accordance with my lab work. You must get and keep a copy of all your lab work when it is done. You are entitled to this but you have to ask for it. My Endo does not stop meds altogether no matter how normal my TSH, Free T3 and Free T4 are unless my thyroid antibodies are also normal. Mine were undetectable when he finally stopped my meds. It's always a good idea to eat a healthy diet. Vitamin D is essential for good thyroid functioning and most of us are deficient in this, especially in the winter.

    For myself, I do not want RAI or surgery. I managed to get into remission by reading everything I could, adding supplements and following my labs closely. My Endo was shocked at my improvement and I told him right from the time I met him that I would not have radiation or surgery. I have had normal labs for a few years and in April, 2018 I finally stopped my low dose of meds (2.5 mg every other day) when my antibodies were non-detectable.

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    • Posted

      hi linda please can you let me now whst supplement you are using or you added and what you added most in your diet im

      i take vitamin d 800iu evryday

      and im on lexvothroxine 25m tablet please let me now would really appreciate it

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    • Posted

      Thanks for your reply. I did find taking vitamin d has helped this time around! I know that mine is in part caused by my weight. What supplements do you take? I take folic acid and vitamin D at the moment.

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    • Posted

      I got tested for supplement levels before I added each supplement and was deficient in all of them. I take 1,000 IU vitamin D but have taken up to 5,000 IU, Magnesium 200 mg, took Regular L-Carnitine and at times Acetyl-L-Carnitine to get my TSH raised but you really have to be careful with the carnitines and know what you want to accomplish and adjust often if you are going to use them. I do not use the carnitines now because my thyroid levels are all fine where I want them. I am not on the carnitines now.

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  • Posted

    hi do you have hyper symptoms when your bloodtest is in range?? because mine is in range but symptoms still lingers...

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