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

rzemach

HI all
I posted this a while ago....no one has any advice for me??
thanks
robin


Hi all
Anyone out there having difficulty a month after RAI? I had the RAI treatment on Feb 7th.

I had surgery in October (TT) for papillary thryoid cancer, went on Eltroxin and basically felt pretty good. In January I had to go hypo and do the diet for 5 weeks before RAI and even though I was sluggish I didn't feel that bad. I kept working and moving forward.
I really thought that I had been through the worst and things would get better.

RAI was not great but since I have gone back on my meds I feel depressed, have anxiety attacks, I am tired all the time but can't sleep and generally feel awful. My doctor says my blood tests show I am still a bit hypo but not to worry and things will get better. I am taking 150mg.

I feel like something is very wrong here but I am doing everything I am supposed to do, I work full time, take care of my family, go to doctor when needed etc... - it just gets harder and harder to get through each day.

Any advice??

Robin

ibeatcanser

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.

rzemach

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.

thank you for replying!!
Your words meant so much to me - I can't tell you how much!!

I was starting to feel so alone in all this. The RAI was supposed to be the "end" of the treatment but that was when the real hard part started. I do have support from my family but they were expecting me to be better and back to my old self by now and that is not happening.

I am taking your advise and trying to stay positive. I can't image how you were able to run a 5k when feeling like this, that is really amazing!!

I am giving this a few more weeks and if things are not better then I will go back to my primary care physician and see what he can do.

Thanks so much and stay healthy!!

tonesgurl

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

ibeatcanser

rzemach said:

thank you for replying!!
Your words meant so much to me - I can't tell you how much!!

I was starting to feel so alone in all this. The RAI was supposed to be the "end" of the treatment but that was when the real hard part started. I do have support from my family but they were expecting me to be better and back to my old self by now and that is not happening.

I am taking your advise and trying to stay positive. I can't image how you were able to run a 5k when feeling like this, that is really amazing!!

I am giving this a few more weeks and if things are not better then I will go back to my primary care physician and see what he can do.

Thanks so much and stay healthy!!

not alone at all....
Hi Robin,
You're certainly not alone. I think it's also our own expectation that we'll be better sooner than later, so that adds more stress to your already weakened system (that brings on more brain fog). I lost 2 sets of keys from brain fog, I usually fell asleep during conversations and when it was time for bed, I couldn't sleep. I was pretty hard on myself, I couldn't understand why I wasn't getting better especially when trying to complete simple tasks. My family and friends brought me back to reality and made me truly realize how much trauma my body went through and to just keep focused and positive as I did before and after surgery. I think of it as my body relearning about itself and it has to take baby steps.

Initially, I didn't want to have the RAI, but I prayed a lot and allowed my loved ones to help me make that decision. After I did it, I wish I didn't (indeed this was the most difficult part of my recovery); but now, I have peace of mind and happy I did.

The suppport here is also incredible. The advice also got me through the RAI and what to do etc. I thought that I was alone (I never knew that this type of cancer even existed).

For the 5k walk, the inspiration and strength came from all of the people I saw and met there. When I thought I was in a 'bad spot' there were people worse off and most important, we're all survivors! My mom (whom has a bad back), dad, niece, aunt and cousins all did it with me and that meant so much, words can't express it.

Stay healthy and positive. It will get better.

Now I make fun of myself and say 'oh, I'm the one with the missing thyroid' when I get tired or don't want to do something, just to make everyone laugh and not see the 'cancer' before me.

Take care!!

ibeatcanser

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

hang in there...
Hi,
I can certainly relate to the brain fog. It's highly unsettling and scary. I forgot my street several times. Even with a grocery list, I couldn't remember what I needed at the store and went home. One day my mom asked me to do something, and I had no recollection of the conversation.

The stress of feeling like you'll never get better can pile up and make you feel worse and it plain sucks, for lack of a better word. I'm an optimist, but at times I was the ultimate pessimist! I began to think that at 33 my life was over. However, the conversation I had with an aunt the night before my surgery stood out, she told me that "I was a blessed child" since the day I was born (a teeny teeny preemie) I was here for a reason. Like Reba's song "I'm a survivor!" We're all survivors.

I started to refocus my goals and realized that heck, this is still better than having a teeny trace of cancer in me.

Hang in there. We're about the same time post TT and RAI (Aug 09 TT and Oct RAI). Did your endo adjust your meds? I may need to have mine adjusted since my TSH levels are beginning to move up in the 'normal' range. I gained weight since the surgery and didn't lose much of it either. Since RAI, I neither gained nor lost any weight.

STAY POSITIVE!!! THAT'S my inspiration.

Take care and stay well

rzemach

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

I thought I was the only one out there
thats so much for these replies. I thought that "brain fog" was something that only I experienced. My family first made jokes but now I simply cannot remember so many things!! I have been trying to write things down but then forget where I left the piece of paper. I just did not expect this of RAI. Your replies have really helped me feel like this is also part of recovery and I just need to get through this. Not sure how but I will??

Robin

Newcomer

rzemach said:

I thought I was the only one out there
thats so much for these replies. I thought that "brain fog" was something that only I experienced. My family first made jokes but now I simply cannot remember so many things!! I have been trying to write things down but then forget where I left the piece of paper. I just did not expect this of RAI. Your replies have really helped me feel like this is also part of recovery and I just need to get through this. Not sure how but I will??

Robin

brain fog
hi robin,
I write stuff down on my iphone and set alarms on it to remind me to do things. I can then call it when i cant find it- if I remembered to charge it and if i remembered where i left my charger...sigh. writing notes on the back of my hand works well too.

nasher

Newcomer said:

brain fog
hi robin,
I write stuff down on my iphone and set alarms on it to remind me to do things. I can then call it when i cant find it- if I remembered to charge it and if i remembered where i left my charger...sigh. writing notes on the back of my hand works well too.

lists are your friend
personaly i have ended up on lists and tons of lists and it helps

i have multiple alarms to remind me when i am needed to do things.

i am writing notes down for my own blog that i havent started yet but i got all the notes and such so i can put it together.

i am about to get my RAI treatment and i needed the lists before hand so i know im going to need them next week also.

hopefully i can get onto thyroid replacement meds again real soon and back to life..

I am going to beat this

weberdns

nasher said:

lists are your friend
personaly i have ended up on lists and tons of lists and it helps

i have multiple alarms to remind me when i am needed to do things.

i am writing notes down for my own blog that i havent started yet but i got all the notes and such so i can put it together.

i am about to get my RAI treatment and i needed the lists before hand so i know im going to need them next week also.

hopefully i can get onto thyroid replacement meds again real soon and back to life..

I am going to beat this

Yes you are!
You are going to beat this and I am going to beat this as well!! Do whatever it takes to beat this disease!

nasher

weberdns said:

Yes you are!
You are going to beat this and I am going to beat this as well!! Do whatever it takes to beat this disease!

out of hospital
yep im gona
out of hospital

yep im gona beat this... right now the Radiation is beating me down alot

just got out of the hospital after 2 days... they gave me 175mci of I-131 and it knocked me down hard..

i also have just started on synthroid at 200mcg / day