RAI treatment after a TT

[Mandyj05]

I am having RAI in a week (the obliviation dose) after having a TT for thyroid cancer. I had multiple sites of cancer. I was wondering if there was anyone else who is going through this now or who has recently went through it. I feel horrible. My muscles all over my body keep cramping, I move very slow according to everyone even though to me I feel that I'm going as fast as I possible can. One minute I'm hot, the next I'm freezing. I'm so absent minded right  now and I'm sure there is more but I seem to forget what I'm about to say right in the middle of a sentence. On top of all this, there is more that I can't eat than what I can because of the the Low Iodine Diet.  Another big issue I am having is worring about the time period after my RAI where I can't be around anyone...I have 5 kids and live in a small house so I have to try to spend money on a hotel (that has a kitchen so I can prepare my Low Iodine meals) Does anyone have a tips, suggestions or any input for me? This has all been so overwheling!

[A_G09]

I hear ye , My head has been working overtime since i took it not because of the 'pill' that was easy but because of worries I have too,& looking at for walls you think too much !! I know what you mean , Iam dreading going back to work , try and get things to keep your mind busy !!! Books , Mags ,films, Herbal teas to wind you down , Think of it as a wee break and pamper yourself .... !! Its not as bad as you think , some people are up and about straight after it ! Just the close contact is a bummer , I just wanted hugs !!!! but i did pamper myself and laz;d about !!! I
Do re serch on ways to help you , this site helped me !! I got a few ulcers too meant to say i bought a mouth wash for uclers !!! It will be over before you know it !!! Let us know how you get on !!!!!!!!!!! xxx gdluck

[Mandyj05]

Tomorrow it the day..I can't wait to get it done and overwith. Of course, when it rains it  pours. Over the past 4 days we've had so much...death in the family (from the C word), husbands father put in intensive care today, worry about affording the hotel I need to stay in. I know things are going to go fine with me, but I'm still kinda worried about taking the pill. All this and then he also has 5 girls that he has to worry about while i'm gone. Hopefully our older two help him out with things

[A_G09]

Hi , I just had RAI 2 & half weeks ago...
I was really poorly before.... I got it so... thats why i was quite bad for 2 weeks after it :(
Some tips , drink loads of water to flush it out ....Glucose candy or any other candy sweeties to keep taste buds going !! Maybe ice lollys :) I liked them :) Your neck will swell up big before it goes down ,
Plenty Rest , Flush toliet twice , always wash hands , Anti sickness tabs , Vit C to keep up immune system...
What helped me the most was beta blockers ...you heart will race after it & you'l feel hyper, So you can take one if you feel bad!!
Hope that helps if i think of anything else i will let you know ! Iam fine, just tierd more than anything , Just p/m if you need to ask anything :):)
Goodluck , You'l be fine ....

[Liz94]

I'm not sure how frequently you have to be scanned. i know I've had three since my surgery and I'm due now.  And I only had to go hypo and off meds for the first one. For the subsequent ones I was given Thyrogen injections. Apparently the thyrogen raises your TSH without you having to go off Synthroid and I honestly think it's the best thing ever invented. BUT.....there's a shortage or something and I can't get it right now.  I don't fall under the guidelines of who can have it at this point so my doc is telling me that unless that changes, I'm going back off meds in January. He's giving me a 6 month window to wait it out to see if it becomes available since my last scans were clean. I was told the same thing regarding the computer and cell phone. I put the remote control in a ziploc baggie and just tried to be very aware of wiping things down with babywipes all the time.  I did use my computer but it was MY laptop and I cleaned it well.  I bought a package of disposable gloves and tried to wear them most of the time.
As far as setting off alarms, I was given a letter by my endo that I was told to take if if I had to fly anywhere. I did fly about 4 months afterwards but I didn't set off the alarm. I wanted to though!  And as far as thinning hair, yes. From now on your hair is gonna fall out when your levels are out of whack. I think it's different for everyone but with me, mine fell out by the masses until I got stablized on meds. Took about 4 months.  I've realized though that I'm never gonna really be stablized on meds.  I go great for about 4 months, the hair starts falling out, I get checked and have to have a dosage change.  I can usually use my hairloss as a check as to how well things are going internally. It's not fun to lose so much hair, it's very scary. But mine does stop when I'm where I'm supposed to be. Hopefully yours will too.
Oh and they can't use my antibodies as a measure either. Mine are always over the top sky high. I was told they'd have to do scans.  Apparently after this scan I'm gonna be able to switch to yearly ultrasounds. But I can't get this scan yet because I NEED THYROGEN! Good luck, you are gonna be feeling better soon. It's almost over!

[Mandyj05]

I was wondering...has anyone noticed thinning hair after going hypo? My hair seems to be getting very thin. Also, people were telling me that I shouldn't take things like my computer or my cell phone with me because I will contaminate them and then I shouldn't bring them back in the house when I come home. Does anyone know if that true? The nuclear med department has told me that, but that wasn't one of the precautions that they gave me. Another thing, they told me I could set off alarms that detect radiation in public places for up to 95 days after my RAI. Has this ever happened to anyone?

[Mandyj05]

Thanks so much! Even though I know I'm not, I just feel so alone and my endocronologist says he doesn't know why I am having these symptoms. He is so hard to talk to. Then everything that the nuclear med department is doing he says none of that is necessary (the scans and uptakes). I just don't understand. They gave me a thyroid golubin test which they told me it shows that I have an unusual high amount of antibody in it, so they can't even use the bloodwork as a baseline for me in the future..he said it will always give me a false low. They told me they will have to use other ways to determine if I have a reoccurance in the future. So Liz, your telling me that this is something they do on a yearly basis? It is hard now, I can't imagine having to go hypo like this agian. I'm glad to hear that both of you are feeling well and and that things are going great. I wish I would have found this forum when I was told back in April that I had thyroid cancer. I was so scared (and kinda still am) and I had no clue what to expect. My doctor told me that 3 days after the RAI that I can start my synthroid and that is when I can start eating regular food agian.

[MANmom]

Been there, done that..no fun!  I had all those symptoms, multi-focal papillary cancer, TT, then RAI.  My TSH got up to 186.  I felt horrible, snored, tired, cold, face swelled, all that.  What might help you is after you are dosed, you no longer have to follow the diet after the first day.  RAI does most of the work in the 24 hours after dosing, so whatever thyroid tissue is left should suck the iodine up right away.  You can eat normally after that.  Also, good news!!!  After a day or so depending on your doctor, you can take thyroid hormone!  You will be on your way to feeling better as soon as you get that first dose.  I had an enormous adrenaline-like rush all over my body about 20 minutes after I took that first dose.  Then I started to feel better.  You probably will start out slowly, then after 8 weeks a blood test and adjustment of the meds.  But hang in there, it is almost over =)  You will still have to isolate yourself for a few days, but get a bunch of girl movies and enjoy the peace and quiet.  I was lucky...my RAI just happened to be scheduled for the week my family vacations at a family cabin, my husband and kids went on vacation for a week during my RAI.  I didn't have any nausea, my tongue peeled!  That was unpleasant.  You will probably lose your sense of taste for about a month, then it will come back.  Check with your friends, maybe someone is on vacation and you can either use their house or send your family there for a couple days.  It is vacation season.

[Liz94]

Well, I went through it and all I can say is that there IS a light at the end of the tunnel even though you can't see it yet and probably don't believe it's there.  I can relate to everything you said as I had most of that and other things too. Being in such an awful state of hypo while waiting for RAI was a horrible experience for me in the last 2 weeks prior. I had heartburn, constipated, chest pain, my arms hurt, couldn't think straight, my face swelled up, my eyes burned and dried up, I cramped in my feet all night. It was pretty awful. Didn't think there was ever gonna be an end. Then after the RAI a huge amount of nausea was added to the list of ailments. Just make sure you have some anti-nausea meds and some sour candy after the RAI and drink more water than you can stand.  I was fortunate enough to be able to stay at home during my isolation, my husband got booted to the guest room!  Just do what you have to do to keep others safe.  It's hard, I know. But you will be fine, you really will. And in a few weeks you are gonna start really getting better day by day.  I went through all of this 3 years ago and I'm approaching my yearly scan. They are now telling me that thyrogen is not available right now so I'm gonna have to go off meds for 6 weeks again and I'll be joining you in hypohe//!  Not looking forward to it but now I know that I'm going to get better maybe it won't seem so bad.  Just hang in there!

[laura1967]

I am going to bump this to the top for others to see and comment on.

Good luck to you Mandy and hang in there.....you are in the last stretch and will soon be able to feel better!  :)