Post count: 93172

    Hi, Andrea, and welcome to our board.

    At the top of the bulletin board page there is a menu called “Reading List.” There are books recommended there that can help to answer your questions. I found “The Thyroid Sourcebook” to be extremely helpful: it’s written in everyday language, and it covers just about any questions you might have about the thyroid in general, and Graves disease in particular (along with other thyroid topics). It discusses the radiation treatment (we call it RAI here), as well as PTU (propylthiouricil) and surgery, which are the major ways of treating Graves.

    In a nutshell, Graves is an autoimmune disease. Antibodies have attacked your thyroid causing it to malfunction, pouring out too much thyroid hormone. The drug you have been put on (PTU) acts as a chemical barrier to the production of thyroid hormone, so by taking the right amount of it, your thyroid levels are controlled in the ‘normal’ zone.

    It is very common for someone with thyroid disease to have an enlarged thyroid gland (a goiter). It is not a tumor. My own, amateur, explanation of it — since it happens with both hypothyroidism and hyperthyroidism – is that if the thyroid cells are being commanded to work overtime, the gland grows. I’m not sure what the medical explanation of it is, but that is my guess.

    As to other tests: a blood test is definitive for showing that someone is hyperthyroid. There is either too much thyroid hormone or not. As to “why” someone might be hyperthyroid, there can be several causes, and doctors work their way through a diagnosis by discussing history and also by doing an uptake and scan test. If you have had this test done, what the radiologist saw on the scan was that every bit of your thyroid took up the test iodine; every bit of your thyroid is over-active. This general pattern (called ‘diffuse’ in medical terms) is the defining characteristic of Graves. But, unless your excessive thyroid levels are caused by an infection (and you would have other signs of infection: elevated white count, fever, etc.) the treatment options are the same. So, it is not necessarily mandatory to have the uptake and scan.

    Because thyroid hormone is used in most of the body’s cells, it is called the “master gland” — and if the thyroid is malfunctioning, everything else is on the fritz too. Anxiety, night sweats, hyper-bowel, rapid heart rate, etc. etc. etc. are all well-documented symptoms of hyperthyroid. So, yes, as your doctor suggested, getting your thyroid well under control will, most likely lead to you being able to give up on all those other medications. They were undoubtedly given to help with a symptom being caused by the elevated levels of thyroid hormone.

    I know that the wait for an endo can seem way too long, but since your GP (or whomever) has prescribed PTU, you ARE being treated right now for your Graves. Some people do stay on PTU for a long, long time. For some folks,depending upon other health considerations, it is a treatment that is preferable to others and they stay on it forever. Or until the thyroid conks out — whichever comes first. Most of us get either RAI or surgery to remove the thyroid because then we only have to take one pill a day — replacement hormone. It’s easier than taking multiple PTU pills every few hours. But rest assured, you are receiving treatment.

    The problem with any of our treatments is that it takes time AT normal levels of hormone for our bodies to heal from the effects of too much thyroid. So, we do not necessarily FEEL “normal” right away, even if our levels are “normal”. Think of hyperthyroidism as a hurricane. Once the wind is gone, there is still a lot of rebuilding to do. It is the same way with the body. It can take a good many MONTHS at normal levels of hormone, before we can feel more ourselves. And the longer someone has been hyperthyroid, the longer it can take the body to heal.

    But we usually do heal, and do get our health back.
    Bobbi – NGDF Online Facilitator