Hi im new on here and first time posting...have hyperthyroidism past 2yrs and was toxic before xmas

Endo told me last august i had antibodies so does this mean i have graves...havnt seen her since! Sorry for the long post but feeling frustrated atm...on neo merc 30mgs whilst toxic tho now reduced to 20mgs until i see her again...have progressive ms and recently found out the interferon injections i was on for many years prob destroyed thyroid...am waiting on ultrasound of thyroid as i seem to have a lump ?goitre over thyroid area and 2 lumps have appeared on either side of collarbone...right sided 1 painful...is this normal? last biopsie of nodule last jan was benign...can honestly say iv never felt so ill and fed up...sorry for the rant! Endo suggested RAI but you have to be stable and down to 5mgs of neo mercazole and this will take ages...just wish they,d remove it but she said in UK surgeon would only remove thyroid if it was cancerous...has anyone had RAI therapy and did it help?

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  • Hi, so sorry you're having such a tough time of it. it must depend on your health board in the U.K. Mine advises removal if you're hyper with a sizeable goitre. I've been putting it off for several years but think I'm going to have to have my thyroid removed in the next couple of years. RAI won't sort the goitre issues so I don't have any advice re that. I'm not suitable for RAI because I have young children. With both RAI and surgery you basically end being hypo afterwards :-/

    The antibody test is usually a specific to identify graves for hyper patients. You're better to ask, I'm not aware of treatment being any different for graves / non graves sufferers.

  • Usually high antibodies is having hashimotos. That is what I have. The high antibodies attack the thyroid to kill it. I have been taking thytrophen for years. I feel that is the only reason my thyroid is still good. Thytrophen confuses the antibodies and they attack the thytrophen instead of the thyroid. A lot of times if you have high antibodies you cannot have any iodine. when my dr. put me on iodine, I developed nodules on my thyroid. There is a lot of good info on the internet if you just google what you want to know. I have done an extensive search on throid and I am going to have a little talk with my dr. next time I go, because I think she needs to do a little research herself. Also, if you have a thyroid problem, your adrenals probably aren't working right either. I take drenamin from Standard process. They are also the ones that make the thytrophen. You can't buy them from standard process, but if you google their name you can find places. Even sometimes Amazon. Good luck

  • An endo saying you have antibodies is not actually helpful to you or anyone else, your endo needs to be precise and you need to know the results and exactly what was tested.

    There are three different kinds of antibodies, (1) TPOAb, (2) TgAb, and (3) TRAb, and their significance depends on type.

    For info on antibodies read this link :

    labtestsonline.org.uk/under...

    People with Hashimoto's Thyroiditis (aka autoimmune thyroid disease, the name preferred by UK doctors) can have type 1, type 2, or both types 1 and 2.

    People with Graves' Disease have type 3.

    I think people can have combinations of type 3 antibodies and one or both of types 1 and 2 antibodies too, but it isn't a situation I'm familiar with.

  • Your profile does not say male or female and that is not entirely irrelevant either way, but enlarged supraclavicular nodes can indicate inflammation/infection/cancer.

    Please ask your GP to check or refer you.

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