My Thyroid Cancer Journey - New Zealand: June 2014

My Story

In 1999 I was doing some head rolling exercises and popped a cyst on my thyroid which suddenly swelled into a lump. I was referred to an endocrinologist. I had an ultrasound, then a nuclear medicine scan, and a fine needle biopsy of the lump. It was diagnosed as a cyst and I was told to see my doctor if anything changed. In 2006, I went to the doctor because the lump was making me cough. It was ultra-sounded, blood tests were taken and were all 'within normal limits' and I was told 'its a multi nodular goiter' and to come back if there was any change in size. From then on, nothing changed, I saw my doctor regularly, blood tests were within normal range.

Then in 2013 , I lost a bit of weight which was an incredible struggle (15 kgs) and the lump seemed to show up a bit more. I finally went to the doctor at the end of 2013. The lump was ultra sounded and found to be calcified, plus there were multiple calcified lymph nodes the size of marbles. Christmas 2013 got in the way, labs and private X-ray clinics were closed so it wasn't until late January 2014, that I had an ultrasound guided fine needle biopsy done on 2 thyroid nodules and a lymph node. All were positive for abnormal cells. This is my story from then.

If you found my story useful , could you please leave a comment or a question? It does feel that I am speaking into an empty room right now!

Monday, June 9, 2014

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