4 Years Post Thyroidectomy

It is now 4 years since I had my Thyroid removed and I'm finally on a stable dose of Thyroxine. For a few years it was adjusted at nearly every 3-6 month check up but I seem to have stayed on the same dose now for at least a year.

I'm still taking calcium tablets and the dose has gone up rather than down. I was feeling very tired in the evenings and the Dr told me to take an extra Calcium tablet and that seemed to work. So now I think I will be taking calcium for the rest of my life. The Parathyroid glands which were disturbed and reimplanted are working partially not fully. I didn't ever manage to eat enough calcium in my normal diet to keep my blood calcium high enough.

Other than medication,  life is normal, I still struggle with my weight and that has been the same since I stopped growing at 13. Nothing changes there.

I hope anyone reading this, has such a good outcome after thyroid cancer and surgery.

Life is good!

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

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.

Radio active iodine

In order to kill off the remaining thyroid cells, I had radioactive iodine treatment. I was admitted to hospital for 2 days and only allowed out when my levels of radioactivity were low enough that it was safe to go home.
The room at the hospital has lead lined walls and an en suite bathroom. There is a TV (which needs a card which you can't leave to go and buy), you are pretty much on your own from the moment you take the radioactive iodine capsule. There is an ante-room where visitors cover their clothes in plastic aprons, gloves and paper overshoes. Nurses pass your food through the door on disposable plates, you take your own medication, no-one disturbs you to do 'obs' like blood pressure or pulse readings. Its all very peaceful and a chance to catch up on sleep or reading or watching videos.

I recommend you bring your cellphone, iPad and a portable DVD player and DVD's. To prevent contamination of the iPad and phone, you put them inside ziplock bags and they are taken out at the end to be tested to see if they are radioactive. If they are, they have to stay at the hospital in a special storeroom for 6 weeks, so it is worth using the bags. You can also use latex gloves when handling the DVD player to keep it clean.

If you want to bring clothes from home, bring your old tatty stuff that you can throw away. I was very cold and brought a horrible old sweater which had shrunk. I threw it in the rubbish bin at the end. I also threw away old undies and old threadbare pygamas. no-one will see you in the old clothes. Keep your good clothes separate for going home in. I was also asked to bring socks or old slippers and wear them all the time to prevent transferring radioactivity from my feet to the floor.

The Radio-iodine capsule is brought to the room in a lead lined trolley called a Porta-Pig

The room is cleaned afterwards with a special spray (who knew this was possible!)

Washing machine soap?

Before you take the capsule you are given anti nausea medication. When you take the capsule, you are asked not to eat or drink anything for 2 hours, then you can eat and it's better to continue the Low iodine diet if possible. Watch out for the bread, as the hospital just gives a low salt diet.  Most meals at the hospital I was at, gave 2 slices of brown bread with every meal, even the one before I was given the radio-iodine. Shop bought or commercial bread in New Zealand has iodine added. The other thing I was given was red jelly, another no-no on the low iodine diet. I chucked it in the bin and ate the lunch I had brought from home.

You are asked to drink lots of water, and to eat sour lollies or chew gum. This helps the excess iodine leave your body via your urine.  Some of the iodine goes to your salivary glands which can be damaged by the radioactivity so to keep that moving through, keep chewing and drinking lots. Shower frequently to wash the sweat off your skin.

I felt a bit nauseated, but some of that might have been from eating too many sugary or Xylitol lollies. Some of which I may never be able to face ever again!

The radiation physicist will come and measure the amount of radiation coming off you , and will tell you when you are safe to go home. Usually this is 48 hours later but can take longer if you have a higher dose. I went home after 48 hours and had to sit in the back seat as far away as possible from the driver and we went outside of rush hour to make it a quicker trip.

The Low Iodine Diet

The main follow up treatment for papillary thyroid carcinoma is a one off dose of radioactive iodine. Iodine 131. This has been the same for about 50 years. Other cancers are followed up with chemotherapy or radiotherapy or both, but thyroid cancer gets something a little different.

To prepare for the radioactive iodine (RAI), patients spend 2 weeks on a low iodine diet. In New Zealand we have very low amounts of iodine in our soils so the rules are not as stringent in some other countries, but the basic rules are:

Low Iodine Rules New Zealand (please follow the instructions from your Oncologist if they differ)
No seafood
No fish oil capsules
No commercial breads because they have iodine added
No vitamin supplements containing iodine
No products containing iodised salt
Limit eggs and dairy products (milk, butter, cheese, yoghurt)
No sea salt, Himalayan salt or iodised table salt ( plain salt is ok)
No processed meats such as ham, salami, or luncheon.
No red food coloring

Suggested New Zealand shopping list for the Low iodine diet
Olivani
Any cooking oil you prefer
Leggo no salt added tomato paste
Campbell's No Salt Added Stock
No salt added tinned tomatoes
Trident Coconut milk and light coconut milk
Plain table salt
Dried or fresh herbs
Pasta i.e dry spaghetti, elbows etc (not tinned)
Egg whites (the yolks have iodine)
Plain flour, yeast, baking soda etc
Plain porridge oats
Homemade muesli (make your own)
Cereals from the health food store which have no salt or milk powder added
Ingredients to make your own bread
All salads and vegetables
All fruits
Unsalted nuts
Kiwicrush
Whittakers dark chocolate cacao 62% and Dark Ghana 72% are dairy free (check the label for others)
Lollies and sugar free lolls

Lunches
Homemade bread, homemade hummus, salad, tomatoes, leftover chicken, beef or lamb from dinner the night before

Dinners
Chicken, beef, lamb
Potatoes
Veggies

Desserts
Baking - use plain salt
Fruit
Gelato ( check the ingredients)

Snacks
Home baking
unsalted nuts

I tended to be more stringent with my diet as I wanted to get the best result that I could. Here are some things that I did.

I found that Olivani margarines contain no dairy products so I rang them and they confirmed that they do not use iodised salt. So Olivani is safe to use on the LID diet.

I made all my own bread. I ended up with two good recipes , both are in the Alison Holst The New Zealand bread Book. We chose the 5 seed loaf and the French bread recipe, and just used plain table salt instead of iodised salt.

I used avocado as a spread or Pic's unsalted peanut Butter, or Olivani.

I made Dukkah and ate it with olive oil on fresh home made bread.

I used some free recipes from the Low Iodine Cookbook which can be found online at www.thyca.org which is Thyca: Thyroid cancer Survivors Association Inc.

I made oat and raisin cookies to use for snacks instead of muesli bars or biscuits.

For breakfast I had porridge and made my own almond milk, if you click on the words you get to the Youtube video which shows how to make it.
Almond Milk
Soak 1 cup of almonds in cold water overnight
In the morning drain and put in blender with 3-4 cups of cold water
Whizz in blender , then add some sugar or sweetener and a teaspoon of vanilla
Whizz, strain through cheesecloth, squeeze out till you are left with milk in the bowl and dry crumbs of almonds which can be dried in the oven and used for cooking later.

Dinners were easy. Potatoes, vegetables and meat or chicken are all ok to eat, as are home cooked (not tinned) chickpeas and other beans.

I found the hardest thing was to find crackers, I craved salty crispy crackers. A friend made me some of Anabel Langbeins sesame lavosh crackers.

The diet was quite easy to follow as long as you can cook, it would be much harder if you who normally live on takeaways, as you would not be able to have anything except fruit salad for 2 weeks!

I did miss being able to buy lunch. If I was out of the house and hungry I had unsalted nuts or fruit, a diet coke or fruit drink, a fruit salad or salad with no dressing.

Going Hypo!
Whilst following the Low Iodine Diet,  you are usually asked to stop taking your thyroxine tablets. (some people have injections of Thyrogen and they get different instructions). When your body is low in thyroxine, the pituitary gland which is in your brain makes a hormone called Thyroid Stimulating Hormone (TSH). As your TSH goes up, you become more and more slow, tired, constipated, absent minded, you may want to sleep all the time or you may get insomnia, you may get dry eyes and tingling in your fingers and toes. I got most of these symptoms, I felt tired during the day and couldn't sleep at night.
The TSH tells any thyroid cells left in your body to grow and make thyroxine which your body needs for all sorts of metabolic processes.
The  cells are desperate for iodine and trying to grow . and when you are given  the radio-iodine capsule (or drink) at the hospital the leftover thyroid cells and thyroid cancer cells suck up the iodine and are slowly killed by the radiation.

The day after you are given the radioactive iodine you usually can return to a normal diet and your oncologist will let you know when to start taking Thyroxine tablets again. In New Zealand the Levothyroxine pills available are Eltroxin, Synthroid and Goldshield. if you don't express a preference you usually get given Eltroxin.