Thyroid cancer & Rai Treatment

Crissy36 Member Posts: 1 Member
edited September 20 in Thyroid Cancer #1

I was 33 when I got diagnosed with thyroid cancer, had a full thyroid removal (2 masses)and had rai treatment after. The recovery from surgery went well but Rai treatment was hell. I want to know was this hell for anyone else??I was on the no iodine diet for a full month, my hormone level had to drop and then I was able to get rai treatment. I remember my body feeling like someone had a torch on me everyday I woke up was so painful, I woke up pale as a ghost, I went through severe hypothermia , I barely wanted to eat, everything tasted nasty especially water. The last week I basically lost my mind. Honestly , the pain was so intense and my mind was so lost I prayed for my grandma R.I H to come take me that I was ready. I think I literally went crazy and with no control. I was such in a dark place during treatment. On the 3rd week I basically slept the entire week which was heaven. Afterwards it was hard for me to walk and I had severe back & neck aches. After my scan all of a sudden I had scoliosis & my hips were misaligned. My scan before treatment didn't show any of this. I am now 36 yrs old, I have been going to the chiropractor for the last year. My right hip constantly has to be popped back in place and I also now been diagnosed with fibromyalgia. My salivary glands also have been effected. I have horrible dry mouth & have to take another medicine to get my saliva flowing. ( ENT says its a side effect from Rai), I also have sandy dry eyes at times. ( got tested & negative for sjogren's) . It took almost 2 years to get my meds right & my level to be normal. But I've noticed as the weather gets colder my levels get high again and I get fibromyalgia flare ups. All of this including the horrible anxiety/panic attacks, trouble sleeping and sometimes I can sleep 12 hrs. The 1st year my levels were so high I couldn't eat and had a hard time sleeping. For 3 months straight anything I would eat I would throw up, every morning I threw up. I lost 40 pounds in the 3 months. I got a biopsy of my stomach and I had severe gastritis. I was on ppi therapy ( med you have to take 4 hrs after thyroid medication). I now still have tummy problems , I get bloated, diarrhea, acid reflux (currently taking omerperzole & pepcid ac, brain fog, etc. I have been eating healthy(no processed or fast food )and going to the gym for 5 months now. I have lost 20 pounds. Sorry for the long rant everyone Im just trying to get back to my way of living before all this happened but all these things make some of my days hard. I got to speak with a woman who is 31yr old who was diagnosed with thyroid cancer, had a removal and had rai treatment. She also has gone through most of the same things . She stated how bad Rai treatment was for her and if she had to do it again she wouldn't. If you would like to tell me your story or any advice please do. Thank you for taking the time out to read this.