Problems after RAI - no one has any advice on this??

ibeatcanser said:

Hi,
It will get better over
Hi,
It will get better over time. Everyone reacts differently. For me, I felt as if the doctors pushed the "reset" button on my entire system and everything started from "scratch"

I had my TT in Aug 09 (the docs were surprised at how quickly I recovered and my high energy level). RAI was performed on Oct 5th, 09 and it knocked me down. This was the time I felt my body just dragging, lifeless and tired all of the time. I never took the hormone pills prior to my diagnosis, so I didn't know what to expect. I returned to work 2 weeks after the treatment and got sick the same day. Stayed home for another 10 days, returned to work, got sick again.

It took a while for my body to recover, doing simple tasks like grocery shopping was a difficult chore, I had brain fog (yes, I forgot the street I needed to turn to get home). Things that were once easy to do, I had to take my time and think about it. I started exercising and pushing myself to move about more. I walked 5k in the City of Hope walk for breast cancer 3 weeks after RAI (this was indeed inspirational). It was difficult to sleep sometimes also, I would be up at 3am and not know why. I worked part time until I got used to the routine again. I returned full time in January.

It's now 5 months after RAI and I feel 'normal' again. Running around like I used to prior to diagnosis and surgery. I do get tired once in a while, but now I ignore it. It will take some time for your meds to be properly balanced. I have to get my 2nd post RAI thyroglobulin test in April and TSH levels checked to see if the meds need adjusting. It's still very early after your RAI, give it time. I even lost my taste buds for a couple of weeks, then they came back one at a time, went away and now it's all there. Portions of my throat is still numb, but it doesn't stop me from eating. I can't tolerate fish (it makes my throat itchy), some food odors are still problematic, but I'm alive and a cancer survivor!!

All of this I did not do alone, if it weren't for the support of my family and friends and my strong faith in God, I don't know where I would be.

Stay positive. If you do continue to feel this way, in addition to your endo, talk to your primary care physician. I did that and she was able to relate my issues to my endo and they worked together. What worked for me was prayer, exercise, support from family, friends and just staying positive. Cry if you have to also, get it out of your system. The reality of cancer invading my body didn't hit me until a week after my surgery, I cried for over 4 hours. (I had no symptoms of thyroid issues, much less 'cancer'; the nodules were found during a MRI for something unrelated - thank goodness for the alert tech).

Good luck and keep me posted.

tonesgurl said:

Robin you are not alone
Hi Robin,

My name is Adrian and I have some of the same symptoms you do. I was diagnosed with Multifocal Papillary Cancer in July '09 had a TT the same month and RAI 163mci in Nov '09. I still have a brain fog, I forget everything and it drives me nuts. I have insomnia but i'm tired alot (not as much as before) thank goodness. I would feel so bad for my kids because I felt like I just slept all the time!

I have a 20, 17, 10 and 7 year old, all girls and a husband of 11 years and without him I would be totally lost. Sometimes I think he gets frustrated with me because I am ALWAYS forgetting something. I mean literally I can forget a conversation I has less than 5 mins ago.

I also know how you feel in the depression area too. I am in the same boat, just this morning I was a crying mess and I felt like everything in my life is wrong! I feel like I can't do anything right, I have gained weight, you name it!

I am here as a support as people on here have done for me. I check my e-mail more than I log on here lately so if you want to talk more let me know.

Adrian