[fj122876]

#1018494

Hi everyone,
I was just given my diagnosis on Friday. At first I was relieved because the endocronologist told me best case was graves worst case thyroid cancer. So when he called and told me it was graves I was relieved. I’ve been reading all weekend about graves and the past three years of my life make so much sense. I’ve lost weight, gained weight, and then lost again. I’ve been so hot(even in the winter) sometimes I feel like I’m going to pass out. And my moods have been crazy.

Now I’m not sure where to go from here. I’ve gone from relieved to scared, and I’m confused about my treatment options. I know I can’t do radioactive iodine because I am a stay at home mom to my four kids, the youngest is 20 months. I’ve read you can’t be around small children after the treatment and that’s just not possible for me. Is surgery my only other option? Does anyone have any suggestions on what questions to ask the doctor when I see him this Friday. Any help would be appreciated.

[Kimberly]

#1065246

Hello – Sorry to hear about your Graves’ diagnosis, but I’m glad that you found us…and that you are NOT dealing with thyroid cancer! Yes, many of us were able to look back after being diagnosed and make sense of symptoms that seemed random at the time. (I wrote mine off to stress, as I was going through a difficult period at work).

In Graves’ Disease, our own immune system mistakenly attacks the thyroid (which makes us "hyperthyroid"), and sometimes on the tissues behind the eyes (which can cause swelling, dry eyes, and vision problems) and the skin (which can cause lesions, particularly in the shin area). Controlling our hyperthyroidism is a serious concern, because this can cause complications such as bone/muscle wasting and heart problems. There are three options to get the hyperthyroidism under control, all of which have pros and cons. Factors that might affect your decision include whether you are (or want to become) pregnant, whether your thyroid is significantly enlarged, and whether you have eye complications.

One option is Anti-Thyroid Drugs (methimazole, tapazole, PTU), which block the production of extra thyroid hormone. One caution is that you have to watch for potential liver and white blood cell issues, which are rare, but serious side effects of these meds. You can check for this with a couple of blood tests — the Complete Metabolic Panel and the Complete Blood Count. PTU is associated with a higher incidence of liver complications, but it is the preferred drug for patients who are in the first trimester of pregnancy, due to the risk of a specific birth defect with methimazole. The other two options are destroying the thyroid with radioactive iodine (RAI) or surgically removing the thyroid (thyroidectomy). As with any surgery, thyroidectomy comes with a risk of complications, although finding a highly skilled surgeon can reduce the risk. The most common complications with this type of surgery are damage to the nerves around the vocal cords and parathyroid glands. The RAI treatment is not recommended for women who are pregnant or who hope to become pregnant within 6 months. As you mentioned, there are specific guidelines post-RAI to make sure that any “extra” radioactivity does not damage your children’s thyroid glands. (These guidelines will vary somewhat from doctor to doctor). Also, in some patients, RAI can make the eye involvement worse. With either surgery or RAI, you will be on thyroid hormone replacement for life — and it does take some trial and error to find the right doseage that will stabilize your thyroid hormone levels and make you feel good.

Some patients will choose to start off on the Anti-Thyroid meds, while contemplating which treatment option is best for them. None of the three treatment options is a "quick fix." Your body needs time to heal from any damage done while you were hyperthyroid…and you will need some time to find the “sweet spot” with any medication, whether it’s ATD’s or replacement hormone. But the good news is that you will get through this…and you can get back to enjoying life! And in the meantime, this board is a great place to ask questions, get support, or just plain vent…as we’ve all been there!

[mifis]

#1065247

Best of luck to you whatever choice you make. I understand how challenging it can be to have GD especially when you are taking care of little kids because it bounces you around so much emotionally and with energy levels. I used ATDs (methimazole) and very quickly the GD went into remission. It took a little while to find the right dose and the endo gave me a big dose to match my big symptoms at first which was way too much for me and I quickly went hypo, but we got it right and after only a couple of months at that dose I went off the drugs and thyroid is back to normal, at least for the time being. I hope you have some good help and manage to get a little "me" time in the coming months.

[Author]

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