I was told I need to do a body scan. Does that require an iodine diet or are there other options? What about meds? Off for 10 days? What, if any, impacts are there when not taking meds? I want to discuss with my Endo.

23 Answers

Pat_77
Answered 8 months ago    reply

Yes, meds off and LID for two weeks til WBS

J_Daniella
Answered 8 months ago    reply

If you do the thyrogen injections you don’t have to go off your meds. Makes it so much easier

Pat_77
Answered 8 months ago    reply

Yes I know my daughter also had it done that way


sad_swan67
Answered 8 months ago    reply

I did Thyrogen so I did not have to go off my meds. Did LID diet for 3 weeks prior to scan


tyndallc
Answered 8 months ago    reply

So I will ask about Thyogen... I really prefer not going off meds

Pat_77
Answered 8 months ago    reply

It really depends what your doc recommends.. My daughter first WBS was without the thyrogen shots. But the second WBS he did, I guess it depends on your doctor


lanell_69
Answered 8 months ago    reply

Yes. You can do low iodine diet for 7 to 10 days. Being off meds for 10 days shouldn't affect you much physically. They do offer thyrogen , depending on endo and insurance.

tyndallc
Answered 8 months ago    reply

No impacts to being tired, foggy brain or anything like that? Weight gain?

lanell_69
Answered 8 months ago    reply

Not after 10 days typically. Of course everyone is different. I've done med withdrawal 3 times.. up to 6 weeks. I didn't feel major effects until around week 3. My main issue is getting my tsh back down. That's when I feel the most effects. But, they raise me to 100. Standard is above 30 for scans.


Shelton.66
Answered 8 months ago    reply

I'm throwing the BS flag on being off meds not impacting you. It was the most miserable 2 weeks I have ever had. Awful. No energy at all. I was freezing cold the entire time. My endo refused to sign paperwork for me to take those week as leave from my job. I'm still amazed i didn't pass out from exhaustion during my commute home. It was July in Alabama. 98 degrees outside and I wore long sleeves, a jacket, and made several trips a day outside of my office to stand in the sun just to try and warm up. I couldn't think straight. Couldn't concentrate. Couldn't focus on anything. Even the simplest tasks were frustrating. Low iodine diet was difficult as almost everything you buy unless you make it yourself has salt in it.

I should have never driven to work and back. 2+ hours in a car per day for 2 weeks. Some studies show it's the equivalent of being impaired by drugs or alcohol due to the decreased reaction time and thinking process.

First thing I did when that was over was fire my endocrinologist and find a better one.

Ask about thyogen. I wasn't offered it so I have no direct input as to how well it works. But being off meds completely was miserable for me.

lanell_69
Answered 8 months ago    reply

Everyone is different. I've done 6 weeks twice and 3 weeks once. Let me tell you by the end of the 6 weeks I was a zombie, barely functioning, couldn't think or hardly move and thought I was going to die.

Shelton.66
Answered 8 months ago    reply

I can imagine 6 weeks of it.

lanell_69
Answered 8 months ago    reply

It was hell! That's putting it mildly. I had an allergic reaction to thyrogen so I now have to go off meds every year for scans. I literally lose a couple months of my life each year


jeanne_99
Answered 8 months ago    reply

Just for a body scan, without RAI, you need to do Lid?

lanell_69
Answered 8 months ago    reply

Yes.

tyndallc
Answered 8 months ago    reply

I don’t know. Just told I need a scan. Can we do it with RAI? If so, good news. I’m waiting to hear back from my Endo.

Shelton.66
Answered 8 months ago    reply

They have to give you some type of RAI as a tracer for the scanner to find.

tyndallc
Answered 8 months ago    reply

My TSH has increased over time. Had my second surgery in FEB17 that removed the rest of my thyroid.

lanell_69
Answered 8 months ago    reply

Anytime you have a whole body scan you have to deplete your body of iodine. It's what the test picks up on. Like a pet scan runs on glucose


jeanne_99
Answered 8 months ago    reply

Right, ok I remember that. It’s been a while. The last time I had one, was here in TX, rather than in CT where I had my surgeries, and the dr just threw in there: try to stay away from shellfish and dairy until your scan. I was like huh? No Lid? Only then was he like, oh ya do Lid. Stupid drs


mickylangford87
Answered 8 months ago    reply

I did thryogen every time so I didn’t have to go off my mess and my endo said lid isn’t necessary anymore that research has shown rai to be just as effective without the diet so I didn’t have to do it but many people do have to do it

lanell_69
Answered 8 months ago    reply

Grrrrr lid makes perfect since. For the scan you are given a tracer dose of rai... by depleting your body of iodine thyroid cancer cells are more likely to show up avoiding a false negative. As far as rai goes... starving those cancer cells of iodine will make the rai treatment that much more effective, the rai, poison will go directly to those starved cells killing them off. Please if endo tells you it's not necessary next time do it anyway for at least 7 to 10 days to get the most from your scan and/or treatment.


d_rolande
Answered 8 months ago    reply

Their website helps with the diet. They are amazing!


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