[Kimberly]

#1062478

Hello – Please check with your doctor on this, as specific guidelines vary from state to state and from doctor to doctor. Generally, the guidelines will be to maintain a certain amount of distance or to limit the amount of contact for a specific number of days.

ThyCa, which is an association for thyroid cancer survivors, offers these guidelines, but keep in mind that cancer patients receive a *much* larger dose of RAI than Graves’ patients: "Minimize contact (less than 3 feet or 0.6 meter for more than 1 hour each day) with everyone for the first five days, and with small children or pregnant women for eight days." "

Take care — and keep us posted!

[jiboosmom]

#1062479

Thank you, Kimberly. I will keep you posted.

Out of curiosity, what is the normal dosage for a cancer patients? Is 17m (the dose I am getting tomorrow) considered a low dose?

Thanks!
Susan

[Ski]

#1062480

I don’t know that I’ve ever heard an absolute "normal" dose that’s given to thyroid cancer patients, but my understanding is that it can be 10-20 TIMES what we get (200 millicuries or more, for instance), so the doses we are given are very very small in comparison.

The most typical restrictions we hear are these (though, as Kimberly mentions, they vary from doctor to doctor):

48-72 hours keep at least 6 feet away, no sharing utensils or dishes, no preparing food for others, use a separate bathroom, flush twice, drink lots of water. After the 72 hours are up, wash all of the clothes, towels and bedding you were using for those days, with an extra rinse at least (or wash them twice).

Several weeks (varies, depending on the dose) keeping time/distance in your mind when in contact with others. In other words, if you must have a 3-hour meeting with someone, keep your distance. If you want to get close to someone, make it for a short time. The need for distance diminishes as I mention below.

The restrictions for the earlier part (first 2-3 days) has to do with the fact that your body is flushing the RAI that is NOT taken up into they thyroid, and it does that through liquid waste channels (sweat, saliva, urine).

The restrictions later on have to do with the residual radiation remaining in your thyroid. RAI (the treatment isotope) has a half-life of 8 days, meaning that from your initial dose, every 8 days you will have half of the RAI left in your thyroid. Depending on the dose you’ve been given, you can do your own calculations to see how long it is until whatever’s left is truly miniscule and you can completely stop worrying about any restrictions.

Also ~ one more little note. Some patients experience a brief period (a couple of days) about 2 weeks after their RAI in which they feel "super-hyper." It is something we call the "dumping" effect, meaning that as your thyroid cells die, they "dump" the thyroid hormone they’ve been storing. It’s self-limiting, as the cells are dying and no more is being produced, but for some people it’s a nasty surprise just as they think they should be feeling better. Talk with your doctor and see what they think about the phenomenon and how they’d recommend you handle it, IF it happens to you. Never happened to me, for example, and I did have RAI.

Presuming you’ve already had your dose by now, I hope everything’s going well, let us know how you’re feeling!!

[jiboosmom]

#1062481

Thank you so much for all of the information. I haven’t had my treatment yet. I am scheduled for tomorrow. I will see what my radiologist recommends tomorrow.

That is soooooo good to know about the dosage. It makes me feel much more comfortable about the procedure.

I am very nervous about the dumping. I experienced this when I had my uptake scan. Two days later, my resting heart rate was between 100 and 120 and my bp went way up.

Susan

[Ski]

#1062482

The scan/uptake isotope doesn’t destroy anything, so it’s likely that reaction was something other than the dumping effect from the treatment dose, but definitely have a talk with the doctor about dumping if you’re worried about it. If you’re already taking beta blockers, they may authorize you an "extra dose" if you should feel a certain way, or have resting heart rate above a certain number, or they may ask you to call in and get confirmation that it’s okay to take an extra dose (or they may prescribe just a few, if you’re not already taking them, so you CAN take some if you feel awful). They don’t affect the thyroid hormone levels, but they reduce the symptoms and protect the heart while levels are high. It’s worth asking so you can put your worries to rest and know that you’re covered for every possibility. Oh, and that’d be the endo, not the radiologist that administers the RAI dose.

[jiboosmom]

#1062483

You are probably right. I had just started ptu at that point, so who knows what else might have been going on in my body.

I am not on beta blockers now, but my doctor did say I could go on them, if needed, since I won’t be on PTU again after my ablation. I will definitely stay on top of the heart rate issue.

BTW, I am not having eye issues (asside from dry eyes), can the RAI cause Graves Eye issues?

Wish me luck tomorrow!

Susan

[jiboosmom]

#1018063

Hi there,

I was wondering how long I should wait to hold my son (21 months old) after RAI. As I said in my last post, I am scheduled for tomorrow and very nervous about it. My dosage of radiation will be 17M.

Thanks!
Susan

[Ski]

#1062484

There was one, small-population study done a long time ago that suggested RAI treatment may "temporarily worsen" (neither term well defined) TED symptoms for about 15% of patients. The study has never been successfully replicated in a large population, double-blind study, so it’s hard to say whether it proved anything, but we do typically mention it, especially in people who ARE having TED issues, since even slight worsening of symptoms for those folks could spell disaster. It showed that a concurrent course of oral steroids (prednisone) brought the risk of temporary worsening to zero, but of course oral steroids carry their own risks, so it’s a risk/benefit calculation that you would want to make with your doctor. Without ANY eye symptoms (other than dry eyes) it seems a pretty easy call.

One thing we can say for sure ~ RAI does not cause TED. TED is a separate condition that may or may not involve the very same antibodies (it’d be an aberration in the way antibodies behave, if they were exactly the same as the GD antibodies, but the science just isn’t in on it yet), but is definitely CLOSELY related to GD. Doctors say that at autopsy, ALL of us show some changes in the tissues of the eye, but only a small percentage of GD patients end up with the very worst of TED.

Bottom line? Know what the potential symptoms are and watch for them, and if you see any of them, get a referral to an ophthalmologist (NOT optician, NOT optometrist), preferably one that has treated TED before. TED can happen at any stage ~ we have one patient here who was DECADES past her successful thyroid treatment before TED symptoms came on. I don’t want to scare you, but it’s not fair to pat you on the head and tell you it’ll never happen either.

[jiboosmom]

#1062485

Thank you. This is very helpful. My mother had Graves with TED. I don’t believe I have any symptoms of TED yet (at least none that I know of — but I am going to go read up on it). I had no idea it could come on later on.

I really appreciate your candor. This is really great information!

[snelsen]

#1062486

TED can come anytime, even decades later, as it did for me. Graves’ age 24. TED in my seventies!!!!!! ): Dealing with it now.
Shirley

[jiboosmom]

#1062487

Shirlie,

I am sorry to hear that you have TED now after all of these years. Do you know how often this happens to graves patients who have already had their thyroid removed? What percentage of people does this happen to?

Susan

[snelsen]

#1062488

Hi Susan, it has absolutely nothing to do with having thyroid removed. It has to with having Graves’.
THere is some evidence that there is an incidence of eye issues after RAI. But this is emerging information. Actually, most folks with Graves’ have some degree of eye involvement, even if very minor. We did hear about that at the conference, and I hope Kimberly, Ski or Bobbi expand my answer.

But, unfortunately, I got full blown TED that has greatly impacted my world. The strabismus surgery helped get rid of most of the double vision, and that was a vast improvement. I had and OD to save my optic nerve, which it did (optic neuropathy, pressure on the optic nerve) but I had a complication from that procedure. As you know, lots of cranial nerves in that small space. There was some damage to one of the branches of CN VII (i think that is the right one) the outcome is that I could not completely shut my upper eyelid. Still working on that with upper eyelid surgery.

In summary, Graves’ and TED are related, and not everyone has TED, and there is a degree of TED from barely evident, to full blown TED.
Shirley

[jiboosmom]

#1062489

Shirley,

I am so sorry you are going through so much. Hang in there! I will be keeping you in my thoughts!

Thank you also for the information. I will definitely watch for symptoms as I move through this journey.

Best regards,

Susan

[Author]

Posts