[Ski]

#1074455

Hi Cath,

Well, your attitude is great! ” title=”Very Happy” /> I had RAI and didn’t feel markedly different in the first week ~ plus, it’s too early to have bloodwork done, so there should be no need for a checkup during that time. There is a phenomenon where the dying thyroid cells release the thyroid hormone they’ve been storing, and we can feel very hyper for a few days, but again, that typically occurs after a couple of weeks, not in the first week. Knowing it’s possible, you may want to discuss that with your doctor, because most of the time the treatment for this is just extra beta blockers for a few days. They could make sure you have that with you in case you need it, but it doesn’t usually happen within the first week anyway.

You should know that in the first couple of days you will be restricted even from being near your husband, and they recommend using separate bathrooms as well. I believe I was told six feet from anyone for the first couple of days. Just ask your endo or the radiologist for their list of restrictions so you are not surprised at the last minute. It is still possible for the two of you to vacation ~ you could have a hotel room with two beds, which would satisfy the six-foot rule, and I believe the restrictions for using the same bathroom are only if that’s possible (some houses do not have more than one bathroom, so there must be some way to manage this).

There are two parts to the RAI that require restrictions, by the way. At first, your body is taking up the RAI into your thyroid, but is also releasing the RAI that is NOT taken up into the thyroid. For instance, whatever percentage of uptake you see in your scan/uptake (you may or may not have gone through this yet, but it’s a tool for the doctors to calculate the correct dose), that’s the percentage of RAI dose that will be taken up into your thyroid. If you have an 80% uptake and take 10 millicuries of RAI, 8 millicuries will go to your thyroid and 2 millicuries will be excreted through the normal fluid waste channels ~ mostly in the urine, but also some in the saliva and sweat. That is finished after two days, and then the second part of the restriction comes into play, as there is still RAI in your thyroid. For that period of time (which goes on a little longer, but still allows you to be at home with your kids), the dose that is in your thyroid decreases by half every 8 days, I believe. Until it has lessened to almost nothing, you will need to just be aware that this exists, and I was told to consider time and distance. If I was going to be with someone for a long period of time, I should keep my distance. If someone were to be very close to me, it should only be for a short period of time.

In the first part of the restrictions, as the RAI is being excreted, the point is to keep anyone else from coming into contact with the fluids that may contain some of it. You need the RAI to treat your Graves’ Disease, but others don’t need it, and you don’t want them to ingest any, since it would cause damage ~ slight damage, true, but the point is to be completely protective of others.

In the second part of the restrictions, the amount of radiation is limited solely because our radiation exposures accumulate over time. It’s not that an excessive time of exposure will harm someone today, but the accumulation is something we just try to avoid, where we can. Again, we need it, it’s our treatment ~ we don’t need to share.

SO ~ just be careful those first couple of days, AND I wouldn’t recommend making plans where you need to take an airline flight to get there. The close quarters would not be good for those around you, and you will also likely set off the radiation detectors at the airport.

Make sure to get that list of restrictions and suggestions from the doctor ~ I almost didn’t get a copy, and would not have discovered until my dose was in front of me that they recommended I use paper plates & plastic tableware!! (I think that restriction may not be recommended any more, but imagine ~ unable to go near people, and yet I must go shopping in order to eat safely!!??)

I wish you luck with your treatment, and I hope you have a WONDERFUL, relaxing week with your husband! What a win-win. ” title=”Very Happy” />

[DianneW]

#1074456

Hi!

I’m sorry about your reaction to PTU when things were going well. As you say, a month would be pretty soon to see a remission, but you can always hope that you are lucky.

If you decide to have RAI you may want to discuss the dose with your radiologist before making your final plans. There are different philosophies on how to approach the destruction of thyroid tissue. Ten-fifteen years ago it was more popular to aim to leave the patient "euthyroid" (normal thyroid function), but doctors have found that this is seldom achieved and can’t be predicted by the dose given. They’ve found that giving the lower doses that aim for euthyroidism more often result in treatment failures (requiring a second or third RAI), and that even when euthyroidism is achieved, it only lasts a few years. Studies show that regardless of dose given, nearly all patients who had RAI are hypothyroid within ten years. For that reason, these days it’s more popular to give slightly higher doses of RAI, aiming for a more total destruction of the thyroid, though keep in mind that the doses given for Graves’ Disease aren’t high enough to destroy the entire gland.

There are other advantages to having a higher dose of RAI besides fewer treatment failures. It results in faster resolution of hyperthyroidism, and the patient can avoid months or years of constant adjustments in thyroid hormone replacement adjustments, caused by levels that keep dropping from a gradually dying thyroid gland. I went through that for four years following my RAI. That was caused by receiving a relatively small dose of RAI (10 milicuries).

According to Dr. McIver from Mayo Clinic (a thyroid cancer expert) who spoke at the Los Angeles NGDF conference one year, another advantage of a higher dose is that the lower doses leave damaged tissue behind, which can lose the ability to complete a process known as "apoptosis", or programmed cell death, when its cells begin to mutate into cancerous form. He suggested that this is the reason RAI patients have been found in some studies to have a slightly higher rate of thyroid cancer, but says this higher risk can be eliminated by destroying the gland more completely.

Many people feel absolutely no effects from taking the RAI. Many others feel a small amount of sore neck or throat a few days afterward, but not enough that it would interfere with a vacation. This is the damaged thyroid tissue swelling up, and in some cases it dumps excess thyroid hormone into the bloodstream, which can result in a temporary worsening of symptoms. Occasionally the worsening can be severe, so you should always be prepared with an emergency number just in case. Thyroid storm is a rare (but real) complication. If you do have a worsening of symptoms it could be toward the end of your week away, or about the time you get back.

When considering RAI exposure you won’t want to forget your husband. My doctor told me that the risk I should consider was a factor both how close someone was and the amount of time they were close to me. Based on that, for a significant other to be across the room for a couple of hours was no problem, but to spend all night in the same bed wasn’t a good idea. He told me I could work without endangering anyone since I didn’t work closer than a few feet and that was only for two hours and the rest of the day I was around completely different people. Had I worked a few feet from those same people all day, I’d have had to stay home.

As it turned out, about a week after my RAI, my thyroid did a huge dumping of hormone, and for two months I was more hyperthyroid than I’d ever been. At three months I suddenly became hypothyroid. As I understand it, with a larger dose people become hypothyroid faster than three months.

Do you have any signs of eye disease? If so, talk to your doctor about whether taking Prednisone is appropriate for you to keep it from worsening. If you don’t, it’s possible that RAI can cause you to have some mild eye changes, but most of the time they’re not permanent.

Surgery is another option, and if you can find an excellent surgeon it can be a really good choice. People I’ve known who had surgery get well very quickly and have an easy time adjusting replacement hormone, plus there are no worries about staying away from people or questions about other possible health effects.

Good luck with your decisions, and I hope all goes well!

Dianne W

[cath2284]

#1019837

Dear All,
After 1 month on PTU and feeling good about things I sadly started having an allergic reaction to the meds. I am extremely allergic to Sulfa drugs and according to my doctor PTU has a slight bit of Sulfa and Topozole has even more (wish they would have mentioned the Sulfa before!). So now we are either hoping that the one month on PTU was enough to go into remission….if not, RAI.
So since I am trying to look at the bright side and since I have a baby and 4 year old that I can’t be around for at least 1 week after the RAI (at least that is what I have read so far–stay away from babies, small children and pregnant woman for 1 week after) I figured I will make it a fun thing and my husband and I will go on vacation for that week. Since I might be doing RAI sooner rather than later I wanted to get some input from those who have had RAI–how did you feel immediately after? the week following? did you have to go in for any check-ups during that week? Basically I want to make some awesome vacation plans for when I go "radioactive" but certainly don’t want to be surprised if the RAI is going to make me really sick, etc. Perhaps this idea sounds crazy, but if the RAI really has no immediate negative effects then I think all of us deserve a good vacation that week!

Thanks, Cath

[Bobbi]

#1074457

Egad, no wonder I felt so rotten while on PTU! I have maintained for over 12 years that I had a strange reaction to it — it’s the reason I chose RAI. And, I, too, am allergic to sulfa (although I did not know it back then).

I wish you good luck with your RAI. I had a good experience with it. My doctor was on top of things, and started replacement hormone right away. That is important. But, even when I was hypothyroid (even starting replacement right away we didn’t quite keep up with all of the changes) with a TSH of 12 or 13 I never, ever felt as bad as I did hyperthyroid, and on PTU. I hope your experience is as positive.

[elf]

#1074458

Deleted, never mind.

[Soulshine]

#1074459

I was allergic to PTU and had to go with RAI as well.
I didn’t feel anything after it, other than wierd. Something about the Doctor taking a pill out of a wall safe and then telling you not to touch it just to eat it!
I was living with my elderly father and he was told to stay elsewhere, I think a vacation is a bad idea. Better to send kids to a friend or relatives and be in your own home. We all react differently to the treatment. I was thrilled to be home in my own bed and not in a hospital. If you are at a hotel, you risk getting too close to other people, and that’s not fair.
ALso your husband can at least stay at home with you, and take care of any needs, even if he can’t sleep in same room.
I was told 5 feet for 5 days, and not to let my cat sleep with me. My Mom came and left meals for me before I got back from hospital, and when I had a craving, left something on the porch for me to get.
Flushing the toilet at least twice after each use was also recomended.
When you feel your worst, what could be better than to be home!
They didnt do my first blood work for almost 60 days after it. Depends on your doctor and how you react.
Good luck! Also if you smoke, STOP. Once you go on synthroid (levothyroxine) nicotine affect the absorption, and will affect your chances at being regulated.

[DianneW]

#1074460

Soulshine, how long has it been now since your RAI? Do you remember what dose you had, and how long it took for you to become hypothyroid? Do you have the eye disease? Are you feeling well now?

Dianne

[Soulshine]

#1074461

I had it 12/30/04 I dont remember the dose though. I only had it the one time.
I was hypothyroid by late February 2005, so only about 8 weeks.

I had some insurance issues and and to use my primary care doctor to do blood work, and that is where I found out in May of 2008 they were runnning things wrong. Many PC docs don’t have the knowledge of an Endo, if you can keep seeing one, do so

Once you start getting fasting blood work after you’re on synthroid, make sure you DO NOT take the synthroid before the fasting blood work. I had to keep switching docs due to insurance at my company continually changing, and they kept telling me to take the synthroid the morning of the fasting blood work. This is wrong! Fasting means just that, nothing to eat or drnk, no meds that morning of any kind, or you’ll get inaccurate results.

I was fortunate to not have the bulging eyes. But I have had my eyeglass prescription change over the last few years.
I even had to stop riding my Harley because I crashed misjudging a an exit ramp. My script got worse, then better. Its been an interesting rollercoaster. I am doing great now though!
oh and nicotine affects the absorption of synthroid, so if you smke, you need to stop. No one ever mentioned that till a new endo in may of 2008, and when I did stop, the changes in my tsh were dramatic in just 6 weeks.

Hope this helps!

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