What to expect from a thryroid scan?
July 21, 2015 7:38 AM   Subscribe

I have 5 thyroid nodules that are over a centimeter. So the next step is a thyroid scan, where they inject radioactive iodine into a vein in my arm and then hold my head and neck in an uncomfortable position while they scan it and see which nodules are likely to be cancer. I'm wondering if anyone has had this procedure and has feedback, and also if I'd be better off at another doctor.

I found this out through the net, no one at my doctor's office was able to give me any indication of what was involved in this procedure. They said someone was calling me about it, however that person turned out to be just a scheduler who told me when they would do it and couldn't answer any questions.

The doctor is a general surgeon. I was referred by my primary care provider, a physician's assistant. She's the one who said I had nodules in the first place.

The one thing that the surgeon's office did tell me is that I probably wouldn't need surgery, if I have that many nodules it's likely that none of them are cancer. So if I'm probably not having surgery, would I be better off with an endocrinologist? Seeing as how no one at the surgeon's office can answer questions about the procedure and they seem to think it odd that I have questions at all.

I've only spoken to the nurse practitioner and the office staff. Apparently I don't talk to a doctor until after the scans. I'm not comfortable with this.

Has anyone been through a thyroid scan? They have me scheduled for two days in the morning. They can't tell me why. Is this a painful thing that might make me exhausted or is it like an imaging scan?
posted by Melsky to Health & Fitness (9 answers total) 4 users marked this as a favorite
It sounds like an iodine uptake test. I've had two and they're no big deal. You go the first day to take the iodine isotope as a pill. I detected a little bit of a metallic taste but it might have been my imagination. After the iodine has been in your body for 24 hours you go back for the scan. It involves lying in a scanner for a period of time - I think it was 20 minutes or so. You have to lie still but no restraints are involved.
I'm sorry your doctor's office is being so unresponsive but as they are not the people performing the test I'm not surprised they can't offer you a lot of details. You'll probably get more information from the radiology staff when you schedule the procedure.
posted by arrmatie at 7:59 AM on July 21, 2015 [1 favorite]

IANAMD/IANYMD. Since arrmatie described what you'll experience at the actual scan, I thought I'd add a little more information as to why they're doing the scan.

Usually if a nodule(s) is palpated on exam, a blood test for TSH and Free T4 along with an ultrasound are performed to see if you have excess, normal or low thyroid hormone and to further characterize the nodules.

If the labs were performed, you were having specific symptoms of hyperthyroidism or there was another indication, the surgeon may be proceeding directly to the next diagnostic step to tell whether the nodules are "hot" or "cold", i.e. there is uptake of the iodine in the nodules.

After the scan, if all of the nodules are "hot", they would likely just treat it the same as hyperthyroidism. They would go over the treatment choices with you and could refer you to an endocrinologist for treatment or follow-up

If any of the nodules are "cold", i.e. there is no uptake of radioactive iodine in the nodule(s), they would perform a fine needle aspiration of the nodule to look at the types of cells.
posted by palionex at 8:09 AM on July 21, 2015 [1 favorite]

Adding on to the previous answers, the fine needle aspiration was the most uncomfortable for me. Yes, you get local anesthesia, but you still have the sensation of a needle poking into your neck meat. The "ow" pain isn't there, but the pressure and movement of the needle are there. And combine that with people all up in your bubble because they are working on your neck. The scan is just mildly uncomfortable in my experience. (And, anecdotally, the person I know who ended up having cancer and getting half of a thyroid removed said the removal was easy peasy from his point of view. He agreed that the fine needle aspiration was the worst part, but still not horrible.)
posted by jillithd at 8:49 AM on July 21, 2015 [1 favorite]

From your description, I think you are getting a classical thyroid scan, similar to the one I have been through.

It goes like this:
* you come into your (nuclear) doctor's office and get an injection in your arm with a radioactive substance. It is just like any other injection and quickly over. The thought of being rdaioactive is scary but it is seriously harmless and you won't feel anything regarding the substance. It has no side effects (unless you are allergic against the carrier fluid for which they are prepared)
* you then wait for 30 minutes or so
you then have to sit in front of this machine with you head tilted backwards and your neck stretched. this position becomes increasingly unpleasant but it is bearable

That's it :) then they can see what's up and what medication or further treatment you might need. In most cases you have to take hormones afterwards which is super common and nothing to worry about.

My tips for the scan: try to concentrate on your breathing and the air flow through your nose. Keep your mind busy with e.g. counting or mind-singing a song or trying really hard to remember something.

Regrading your doctor: I think you derserve clear explanations of diagnostic tools and procedures (including the associated risks) and I would tell my doctor that you are unsatisfied with the communication. If they brush you off, then i would look for another doctor.
posted by Fallbala at 9:38 AM on July 21, 2015 [1 favorite]

Mine was a radioactive pill. No shot. Then a few hours later went back for the scan. That took about 30 minutes. Not super comfortable, but not crazy uncomfortable. There were no side effects of the pill or the test for me. I have heard it's getting to be an outdated diagnostic procedure, but a lot of doctors still use it.
posted by cecic at 10:20 AM on July 21, 2015 [1 favorite]

I actually schedule many of these as part of my job, and we are supposed to inform the patients via phone call of the procedure process and what to expect.

You'll be given a radioactive injection. Sounds scary, but it isn't. You'll just need to stay a safe distance from any pregnant women or small children for the rest of the day. The amount is very small, but thats a precaution we inform every patient of. You'll wait for about 45 minutes after the injection to let if flow through your system. Once the time has passed, they will position you in the scanner and you should only be there for about 10-15 minutes at the MOST.

The injection will help determine if any of the growths have active cancer cells. It attached itself to those scans and basically causes them to essentially "glow" on the scanner. This procedure helps you avoid any unnecessary biopsies.

If you have the scan and it comes up negative, you'll likely be monitored for a while and have a repeat scan and ultrasounds every 6 months or so to ensure the growths aren't growing any larger.

If the scan is positive, they will order the biopsy for you to determine the exact cell type and stage of the cancer.

It's a fairly common exam.

Now I know all places give their prep a little differently, but I hope that answers some questions for you.
posted by Sara_NOT_Sarah at 11:11 AM on July 21, 2015 [2 favorites]

I had one of those, for similar reasons (in my case a single nodule that was later removed, but deemed benign). It's a pretty standard sort of test, and not anything I'd be tempted to switch doctors over.

Overall, it was more inconvenient/annoying than painful or particularly distressing. They didn't put me in a full-body scan chamber; it was more like a donut thing that just went around my head and neck. They did the radioactive iodine via an IV rather than a shot; IVs suck no matter what when you have small/shy veins like I do, but once it was in it didn't hurt. It just felt freezing cold, which was an utterly bizarre sensation. The scan didn't take that long (I want to say less than an hour?) and I felt fine afterward; not exhausted or anything. YMMV, though.
posted by aecorwin at 12:13 PM on July 21, 2015 [1 favorite]

Yeah I had a similar test (gallbladder) and it's pretty simple.

I would potentially consult with an endocrinologist or another doctor if you feel like your doctors aren't giving you enough information. Also, you can call back the place where you're having the test and ask to speak to the radiologist (nuclear medicine) person who will do the test. Just call back and say you have questions about the test and they can usually grab someone.

Also, going through tons of medical stuff myself, I had to learn to really stand up for myself. If the staff says it's odd you have questions, ignore them and insist to speak to someone, because you have questions. Repeat until you get someone who knows something. Same with the testing place. Insist to speak to someone who can answer your questions. I do think it would be useful to find a doctor you're more comfortable with.

When I had my gallbladder surgery, they gave me a nurse's direct line for questions before the surgery day came. It's a bit strange that they're not willing to connect you to someone if you have questions about a medical procedure.
posted by Crystalinne at 1:03 PM on July 21, 2015 [1 favorite]

Best answer: If it's scheduled for two visits, I'm guessing it's the pill one as well -- they give you radioactive iodine in a little capsule on day 1, wait for your thyroid to pick some of it up, and then measure you 24 hours later to see how much of the iodine your thyroid grabbed on to. That lets them know how active your nodules are.

The cool thing is that the pills come in matched pairs -- you take one, and the other one stays so they can measure it the next day and compare it to your thyroid and see what percentage of the iodine it picked up.

As far as medical tests go, it's pretty benign -- I would rate it as less annoying/unpleasant than a CT scan or X-ray (including dental) or anything like that. It is not tiring or painful. I actually find thyroid ultrasounds more unpleasant than this test.

One warning, since nobody above mentioned it -- if you haven't already, stop eating anything with significant amounts of iodine (so, basically, sushi/seaweed, or iodine supplements) right now. My test almost had to be rescheduled because nobody had told me this. If your test is in the next week or two and you've eaten sushi/seaweed, you might call them back to ask -- different centers have different policies for how recently you can have had sushi/seaweed.
posted by pie ninja at 1:25 PM on July 21, 2015 [1 favorite]

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