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.

4 months post Thyroidectomy

Well its 4 months since my Thyroidectomy and 2 months since I had the Radioactive Iodine. Since then I have more or less recovered from the radio-iodine but still have a few symptoms to get over.

I still do not have working Parathyroid glands, they were transplanted back into my neck, but have not started working yet. I am still taking calcium and Vitamin D pills, and hoping they start work soon because I don't like the buzzing sensation I get in my hands, face and feet when my calcium dips. My blood calcium is always normal on my blood tests but I still get some symptoms. It was worse when I was on holiday in Samoa recently, probably because it was so hot and I was getting a bit dehydrated.


My TSH (Thyroid stimulating hormone) level is still way too high so I have had my thyroxine (Synthroid) medication increased. There are a limited number of options for Synthroid doses in NZ so I am on 100mcg 4 days a week and 150mcg 3 days per week. In a few weeks I hopefully will be feeling less tired, will be able to get control of my weight and will have a few less digestive problems.

Normal TSH is somewhere around 2, mine was 11 , 2 weeks ago, the Oncologist is hoping to get it down to 0.1. The low level is what is called a suppression level and thyroid cancer patients are kept at that level for up to 10 years. Thyroid stimulating hormone prompts the thyroid cells to grow so by keeping the level very low, hopefully any thyroid cancer cells don't grow.

A week ago I got the results of my whole body scan which was done a week after the Radio-iodine. There were no metastases showing anywhere in the body, and very little iodine collected in my neck which means the surgeon did a really good job of clearing out the cancer from the lymph nodes and around the blood vessels.

So things are looking really good and I don't have to see the oncologist till November when I will get some more blood tests to see whether anything has changed.

Please don't hesitate to ask questions if you are going through treatment or are newly diagnosed with thyroid cancer in New Zealand.

Regards
Clare