Radioiodine treatment - Real life view wanted!

Hi lauri1638-

Most of these posts are very dated- I stumbled upon this site when researching some problems that I've been having since I had RAI-

It has been my comfort to be part of a Thyroid Cancer support group- and forms such as this.

Those around you try so hard to comfort and support you but often times a person can still feel alone in the battle because it is, after all their body being wrecked by cancer or treatments -

I am 48 now- I live a healthy lifestyle, exercise, eat organic and

Taking no medicines-

In July of 2016, I woke in the middle of the night in pain, my body was crazy, cold shakes that felt like my bones were going to break, then sweats, severe thirst and headaches, nausea - this went on for the entire weekend-

I am not one to run to a dr- because I know my body so well and stay on top of my health with regular check ups - I really assumed it was the onset of menapause-

My gynecologist saw me the following Monday - ran the usual blood tests to check to see if menopause was upon me- it turned out it was not as he explained the pre menopausal symptoms can be a menace for many years before menopause sets in, he prescribed me hormones to help ease me into my body's change-

During the exam he noticed my throats was swollen and said that it was not normal and sent me to my family dr- who sent me to an endocrinologist who sent me for and ultrasound and then off to a surgeon -

I was falsely assured that according to the ultrasound and blood work , my Thyroid levels were all normal and the ultra sound scans showed what looked like to be a benign growth-

Because the growth was very large and apparently causeing some issues they opted to remove it and not biopsy it then remove it-

Two weeks later I came out of surgery with having a total thyroidectomy -

The growths had spread to both sides and were multiple - biopsy proved the dr wrong and it was cancer-

My treatment at that point was RAI-

It began with a low iodine diet,( it was good for a weight loss of 10 lbs)

a series of thyrogen shots( so I

didn't have to stop taking my

thyroid meds, I felt as if I had a mild case of the flu after)

Full body scan and then my RAI dose-

I was restricted to solitary confinement for two weeks- had to eat off of separate dishes, use a separate bathroom and shower -

For the first 3 days I slept almost solid-

Then the swelling in my neck came, my spit glands swelled and pain-

I had to keep sour candy or gum in my mouth constantly to help my glands produce spit because RAI can damage them -

And then back for another full body scan-

My cancer is showed to be in remission- or as some say cured-

Thyroid cancer comes back in some form or fashion but the dr can't tell you when or where -

Could be a year, could be 30-

I have blood tests every six weeks to make sure the synthroid 150 mcg is at proper levels- along with a check up from family dr to address any symptoms I might be having difficulty with-

Once a year I will have to go on the low iodine diet, the thyrogen shots, a low dose of radiation and a full body scan- ill do this for the rest of my life-

I no longer have a thyroid and the synthroid takes place of the hormones my thyroid once produced - despite the blood work showing all is good- I always feel tired -

Now I said all that to say this-

Everybody's body responds to medicines and treatments in their own unique way -

Since my RAI treatment , I have recurring issues with my spit

glands swelling, heartburn and stomach discomfort, and I have allergic reactions to the sun, hives and itching -I slather the highest sunscreen on to prevent sunburn and wear long sleeves.

My eye sight has also been compromised-

Although my treatment has not been without side effects,

I try to always be positive and

know that the outcome could have been worse-

I will try to check back in case you have any questions -

Best wishes for you and yours-