Thyroid cancer & Rai Treatment

Crissy36

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.

kimberly_32

I haven’t gotten rai treatment but they want me to. I’m sad. I don’t want to get it

Hh97

For me the surgery and RAI was perfectly fine, what was rough for me was the year and a half it took to finally get on the right levels of the hormone replacement, the low iodine diet required to do the RAI obviously was no fun, but yeah the the feeling like I could sleep 23 hours a day and the being fridged even in 101*F weather was the hard part.

With my most recent CT scan for a cough I have had that has been getting worse and worse with the results, while the doctor has not gone over them yet because they are on vacation there is a distinct possibility that mine is coming back after 2.5 years so might unfortunitly have to deal with that low iodine diet and screwed up thyroid levels again a second time... I am hoping not and hoping that the wording is just weird, but I wouldn't wager on it. I don't mind the RAI I just don't look forward to the diet required before and fatigue due to intentionally causing hypothyroidism to have it work best.

But regardless, everyone reacts differently to different treatments and so while I had no problem with it I can see how you could have had a totally different experience from it, as such there is not much advise to give other than communicate, communicate, communicate, if you are having issues and you don't tell your doctor they are not going to know you are having issues, and if you do tell them multiple times and they just blow you off you might want to try a different team who will listen to your concerns. At the end of the day both you and the team helping you need to communicate for the best experience possible, it isn't a fun experience no matter how good your team is, but it is definitely more tolerable and easier to get through if you communicate everything you can think of even if it seems trivial because the more info they have to work with the more likely they will be able to fix any issues that are not an unfortunate necessity like how miserable hypothyroidism is which unfortunitly you have to do to have the RAI most effective. But there is no single solution for everyone because everyone is different and health care requires some modifications to accommodate those differences.

Misha123

I had total thyroidectomy and RAI ablation in the last half of 2023. My RAI treatment was in mid-December and yes, it was miserable. My body felt like it was on fire for 3 days. On the third day I pooped fire which I'm pretty sure was radiation leaving my body. I lost my sense of taste but it's completely back now. I was extremely nauseous for about a week and I still get nausea flare ups now. I'm also dealing with debilitating fatigue which is what brought me to this discussion board. I'm so fatigued I don't know how to live like this.

It's bad enough that I've decided I won't do another round of RAI if it's recommended. I just don't want to live like this. I'm going the nutritional route as much as possible and praying that will be enough.

Miles' mom

OMG! I am so sorry for all of you!! This sounds like torture.

Praise GOD I did fine with both. I have had total removal and 2 other surgeries for PTC and RAI treatment. Don't get me wrong--it was 5 years of hard. Seemed like I was always in the drs office or hospital and I can't even count how many needle sticks, scans etc I've had. But nothing (not even close) to what I've heard from y'all.

That said, I also deal with a blood cancer for which I take hydrxyurea daily. Now this has been hell for me.

But what I really want to say is we HAVE to be advocates for ourselves. Quality of life is a must. I have done the same--telling my hematologist that I would rather not be on the meds than live this way. God bless you all.

I'll be praying..

Andrea911

Hello, my sister had a full thyrodextomy and RAI treatment. Now she takes T4 and the effort of finding the right dosage is a big mess. Also after RAI she feels terrible. She has dizziness, change in her taste,her feelings are like roller coaster,but the main thing is that she has pain at the oint of the insision but from the inside. It's been two months now since RAI and she feels really loat. That's why i am here,to find someone that can understand what she feels because her doctor doesn't.

Misha123

I’m still dealing with finding the correct dosage as well. My first check post RAI I was hyperthyroid so he took me from 125 mcg to 112. Last week I had blood work and now I’m hypo. He is keeping me on the same dosage until my next scan. I’m thinking there’s still cancer in there and that’s why I’m hypo again. Praying not bc I have no intention of taking radiation again. Hopefully I just need a dosage change. Praying that’s it.

Andrea911

https://csn.cancer.org/discussion/comment/1716106#Comment_1716106

My sister was on 150mg but her doctor made her blood workand she was hypo so he put her on 200mg. Now we are waiting for her appointment for the first scan to see if there isnt anything else. But her emotions and how she feels her body after RAI is worse as time passes