CSN Login
Members Online: 7

How many days were you in isolation (at home) after RAI

sandykr's picture
sandykr
Posts: 57
Joined: Jan 2010

Just wanted to compare with what was told me. I am in my 3rd day, I was told 7 days to stay at least 3 meters apart for no more than an hour a day. Seems like I've seen online 3-4 days. What were your experiences? Thanks

usljh10
Posts: 85
Joined: Apr 2009

I did the 7 days complete isolation. Second week I did 3 meters.

tonesgurl
Posts: 42
Joined: Dec 2009

Hi Sandy,

I did 5 days in complete isolation (at home) I have 4 daughters and wanted to make sure I didn't expose them to anything. When I did come out I still made sure to keep my distance for 2 more days. My husband did not listen as well as the girls did, LOL, he kept comming in to make sure I was okay.

Good luck,

Adrian

ibeatcanser
Posts: 47
Joined: Aug 2009

Hi,
I did 3 days in the hospital and an additional 7 days at home. I opted for the longer stay and didn't come out of my room at all, since my 2 year old niece and precious parakeets were also in my home. I didn't want to take any chances. All I had with me were some crossword puzzle books and other books to read. I chose to rest for the time I was in there and to regain my strength.

Hang in there!!!

Now it's been 3 months since my treatment and I'm preparing to see my endo in a few days to get my thyroglobulin test results.

Take care.

sandykr's picture
sandykr
Posts: 57
Joined: Jan 2010

Good luck! Today was 7 days.........and I was out in the world. I was just told not to be around pregnant women or babies, which is no problem. I work in a hospital, so one more week off. My husband is still sleeping in another room. My thyroid scan is Tuesday, so I can ask any remaining questions then. Thanks for your reply
sandy

cshobie1
Posts: 6
Joined: Jan 2010

Hi
I work in a hospital too, ICU RN. Were you off 2 wks after your ablation?
I did all this 12 years ago and wasn't expecting to start over again. I'm
having a scan this Friday and receive my 1st thyrogen injection tomorrow am.
Did you have thyrogen, and if you did, did you get nauseated? I'm working
Mon & Tues nights after I get my injections.
thanks
carol

emma54
Posts: 59
Joined: Aug 2009

Hi!

Thyrogen shots were wonderful. No side effects for me.

emma54
Posts: 59
Joined: Aug 2009

Three days in isolation.

sandykr's picture
sandykr
Posts: 57
Joined: Jan 2010

Hi Carol,
Funny.....I am a physical therapist in ICU! Anyway, yes they told me 14 days, I did not have the thyrogen shots as I was only 3 weeks post op and was on cynomel, so it was out of my body in a short time. I hear the shots are wonderful and look forward (I'm being cynical!!) to the next time. I am living in Israel, and just this year it was approved for use before scans, meaning no extra cost.
My scan is tomorrow
Let me know how it goes

sandy

cshobie1
Posts: 6
Joined: Jan 2010

Hi Sandy
so good to hear from you and others. Had a headache by the time I got home from the hospital. Wasn't sure if it was from lack of sleep, starving from the iodine free diet or the thyrogen. Finally got back to bed around 2p and felt fine when I got up to get ready for work. Had a long wait yesterday morning, couldn't find the orders, didn't have the med...should be better this morning when I get off work. Just want to get it done with and find out what's up.
Hope your scan goes well. It will be so nice for you to be back on medication. What a difference a pill makes!!
Are you a traveler in Israel? From your photo, you could pass as my sister.
Carol

sandykr's picture
sandykr
Posts: 57
Joined: Jan 2010

Scan was fine, they said they'll send me the results. As with everything, I went online and tried to decipher it myself (they gave me the disc) but , of course, this is impossible. Working in the hospital, I can speed things up!

I am living in Israel, originally from the east coast.

I believe the eltroxin is doing something..............how long does it take for them to DO something???

Here, they don't do the iodine free diet, its interesting, with all I read online, to compare and see what is done differently here. Also , no diet before RAI

Sandy

sandykr's picture
sandykr
Posts: 57
Joined: Jan 2010

post a pic! maybe we were separated at birth!!

cshobie1
Posts: 6
Joined: Jan 2010

Hi Sandy
takes me forever to navigate this site, but then I am at work again!
Had my wonderful scan last Friday, results & labs negative. Saw the surgeon yesterday
and having a PET scan 2/5. He didn't like the looks of the U/S either, regardless of the thyroid scan & labs, so back to the scanner I go!! Must be alot of us out there that no longer uptake RAI after having rcvd the high dose. I'm not sure even if the PET somehow comes out negative I will escape surgery. I see him again on the 15th and hopefully will have an answer one way or the other. Am being required to receive thyrogen injections again
for 2 days prior to the PET. Costly suckers. Hospital where I work & am getting my scans now has a protocol requiring thyrogen injections prior to thyroid PET scans. Doc tried to get me out of it, since as he told them, it's not a small node. I don't understand what the point of having them is?

Hope you are feeling better. I will post a pic next week, I just started my week stretch tonight.

Carol

sandykr's picture
sandykr
Posts: 57
Joined: Jan 2010

Hi Carol,
Somehow I missed your post, you're not the only one having difficulty. Aren't the thyrogen shots suppossed to make the whole process easier??
Let me know how the scan goes when you do it.
I got the results back from my total body scan, basically it says that the uptake was only in the thyroid bed. Now I figure that's good.....meaning that it only what they couldn't get out during surgery, but what now? Does the RAI kill those thyroid cells?? or what.
I have to get in touch with my endo to ask these questions. I only have an appointment in March, after I've been on the eltroxin for 2 months.
I'm feeling good so the eltroxin must be doing something.

let me know how you're doing

Sandy

cshobie1
Posts: 6
Joined: Jan 2010

Hi Sandy

The RAI is suppose to kill any remaining thyroid cells and then the suppressing dose of levothyroxine is to keep it that way. I'm wondering if that is why I have thyroid tissue again. I switched jobs, insurance & docs after my ablation was done and was seeing an internal med doc although he knew I had thyroid cancer. My mistake, as a year later my TSH was continuing to increase as he decreased my synthroid dose...he thought my TSH was too low and my original dose too high. I went from 175mcg down to 100mcg. So, so much for having a TT and hi dose RAI. Oh well.

The correct replacement dose makes all the difference in world how you feel. I was finally up to 200mcg synthroid for several years and finally reduced back to 188mcg a year + ago d/t intermittent tachycardia and increased baseline HR. I'm back to my 50-60 resting HR and still feel like I have the same amount of energy.

Have a sore hip tonight after getting my thyrogen shot yesterday morning after work. Get the 2nd one after I get off again this morning and finally the PET scan tomorrow (Friday). What a long, drawn out process! First time around had an FNA the same afternoon the doc spotted my lump (on a Thurs), had the results by Monday and surgery one week later. Just want this done!!

Glad you are doing well. Do you find you need more sleep now w/o your thyroid?

Carol

sandykr's picture
sandykr
Posts: 57
Joined: Jan 2010

As far as sleep......definately!! I am fine as long as I am on the go and running around. The minute I sit down in the evening, to watch the news or whatever, I'm out! I also feel like my sleep is very deep, sort of druggy like! That should be the worst of our problems. Still talking with my deep sexy voice!
Let me know how your scan goes

Sandy

rzemach's picture
rzemach
Posts: 33
Joined: Oct 2009

Hi Sandy:
I also live in Israel (orginally from Ohio) and I was told that the shots had not been approved yet!! I also did the low iodine diet - I guess it depends on where you do this. I was at Haddasah Ein Kerem. Hope you get through this ok and best of luck!!

Robin

sandykr's picture
sandykr
Posts: 57
Joined: Jan 2010

yes, it is a small world. As I understand it, its a health ministry decision, not an individual hospital thing. My Endo told me that it was approved for use with the yearly body scan so that you don't need to go off the eltroxin. This is a recent thing. If I can find the link, I'll include it.
Interesting about the diet........I was treated at Beilinson.
This is a link which talks about it being in the "basket"
http://www.wol.co.il/magazine/press.asp?categoryCode=37&id=2180

Sandy (originally from Maryland)

ibeatcanser
Posts: 47
Joined: Aug 2009

Hi,
Happy that your scan was okay. I found out my results about a week and half later.

Any side effects? My throat is still a bit numb (but it does not stop me from eating). Once in a while now food tastes a bit different, but I've adapted to it, I'm more thankful for having survived this.

I got great news from my Endo, TSH levels are good and no sign of recurrence!

For me, the Iodine Diet was not so bad, I became even more creative with recipes. I focused on it, so it didn't bother me as much. It was more frustrating shopping for ingredients.

sandykr's picture
sandykr
Posts: 57
Joined: Jan 2010

Hi, Did you have to go off your meds? Once you started taking them again, how long was it until you felt you had gotten back to "normal"??

Thanks

Sandy

ibeatcanser
Posts: 47
Joined: Aug 2009

Hello Sandy,
I was not on medication, my surgeon and Endo decided that it would be best for me start the medication after the RAI. I had a total thyroidectomy in early August 09 and the RAI early October.

It took about 2 months before I felt "normal" again. Prior to RAI, I was up and about "as normal". It was during the last week of the low iodine diet that wore me down. After RAI, it knocked me down a great lot. I returned to work 2 weeks after RAI and ended up with an upper respiratory infection. Ten days later, returned to work and got sick again. My bosses and coworkers were all extremely supportive and ensured that my working environment was as comfortable as possible. Now, I'm back to work full time and loving it. I do know that I can't push my body like I did prior to surgery.

take care,
michelle

sandykr's picture
sandykr
Posts: 57
Joined: Jan 2010

Encouraging, Thanks

sandy

usljh10
Posts: 85
Joined: Apr 2009

I notice a big difference in the energy level.My sleep is off, I wake up 5-6 times thru out the night. My nerves are on edge. I guess I'm a little hyper. I've lost some weight, that maybe the problem. My dosage may need changing again.

Lisa

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network