Side effects of radio-iodine

The iodine goes to the remnant thyroid cells, any cancer cells that have spread around your body and to a few places you don't want it to go to, including the salivary glands.

It's a week since I had the RAI and I have had a sore neck, sore ears, and I have felt generally fluey since about day 4. I thought this was just due to swelling around the site of the thyroid operation, and the remains of the thyroid cells.  Yesterday  I had a whole body scan in the nuclear medicine department and was told that there is still radioactive iodine sitting in my salivary glands and that I should chew gum to get them to empty out. The swelling under my jaw, is swelling of the salivary glands, when I sucked on some sour sweets, it felt much better.

I chewed so much gum I gave myself a headache and an upset stomach from all the sugar free sweetners. I tend to be a bit sensitive to Xylitol, Mannitol, Sorbitol. I'd much prefer to eat sugar, but now my mouth is feeling a bit dry, so I know I am at risk of having problems with tooth decay if my salivary glands don't recover.

So on day 9 after  RAI, I have sore glands, and my mouth is a bit drier , particularly in the mornings and if I haven't drunk water for a while. I'm  looking at resources on dealing with salivary gland issues. Here is information about salivary gland massage if that becomes necessary. http://www.sjogrens.org/files/brochures/Salivary_Glands_Massage.pdf

Other side effects were , feeling mildly nauseous for 3-4 days after the radio iodine dose. This was worse if I hadn't eaten for a long time, so was worse in the mornings before breakfast.

A very sore swollen neck, which is probably a good thing, as it means the radio iodine is doing its job and has collected in the area where the thyroid remnant cells are.

Many of the other symptoms of tiredness, digestive issues, dry eyes, absent minded ness, are symptoms of hypothyroidism, and should improve as my TSH level goes down and my thyroxine level goes up.

Diagnosis

When you are diagnosed with any cancer, you go into shock, but thyroid cancer can sometimes be very uncertain. A fine needle biopsy can show abnormal cells but it is often not completely clear that you have cancer until the surgeon gets inside your neck. I think I was hoping that the abnormal cells would be something else, but the large calcified lymph nodes were a pretty good clue for the medical staff that were dealing with my case and I was advised to have a full thyroidectomy and modified left neck dissection. I have private insurance but my surgeon found a cancellation in the public hospital which needed to be filled, and slotted me in.

In February 2014, I had my thyroid removed along with 18 lymph nodes. The pathology came back about 3-4 weeks later and was positive for Papillary Thyroid Carcinoma. Six lymph nodes were also positive with several that were over 1 cm in size. The largest tumor on my thyroid was 4cm but very little of my thyroid was normal, the one quarter without tumor in it, had signs of Hashimotos thyroiditis which was undiagnosed and may explain why I had problems with losing weight and other signs of hypothyroidism before the surgery (even though my blood test results were always within normal range).

The morning after surgery I started to take Thyroxine to replace the hormone that would normally be provided by the thyroid gland. I was also put on Calcium tablets and Vitamin D to regulate my calcium levels, as my Parathyroid glands had been removed and two had been transplanted back into my neck muscle. As I write this, it is 9 weeks later and my parathyroid glands are starting to work again so I have been able to reduce some of the calcium that I take.

At the beginning of this week , which was 9 weeks since surgery I was given a dose of radioactive iodine to kill off all the left-over thyroid cells and cancer cells. I intend to write more about the preparation , the low iodine diet and the radioactive iodine treatment in the next post.