Update on my Thyroid Experience in NZ

It is nearly 10 months since my thyroidectomy and my life is nearly back to normal. I say 'nearly' because I still have problems with hypocalcaemia or sometimes hypercalcaemia. When my thyroid was removed , all 4 of the parathyroid glands were removed too. Two were re-injected into my neck muscle, and they are being slow to start working again at full strength. Every now and again, I start getting weird symptoms like muscle twitches which happen randomly all over my body, and I become very apathetic and want to lie on the couch all day and watch DVDs. The first time it happened I had no idea what it was and went to my doctor who sent me for blood tests for every possible thing, and it turned out that my blood calcium levels were getting to the very top of the range so I had to cut down the number of calcium pills I was taking.  The second time it happened I recognized the symptoms and just requested a blood test for calcium levels and sure enough, the levels were high again.
So I am still taking calcium and vitamin D to help me absorb it, but much lower doses than before.

I am still getting used to the thyroxine as well, there are some weird symptoms which are caused by high T4 levels and I have those too. Unfortunately I can't tell which symptoms are high calcium or high T4 so I have to go for a blood test each time.

Anyone going through this need to know that it takes at least a year to get the right level of medication. Other than that, I am more or less back to normal apart from getting very tired in the evenings so I don't; tend to go out late these days.

Best of luck to anyone else out there with PTC.

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.