Basically the timeline of events you can expect for your first scan/ treatment after your inital one is this: (Disclaimer: This is, of course, based on my personal experience. As we all know, all doctors are different and I've found recommendations can vary GREATLY from doc to doc.... which I find to be quite annoying actually).
1. Office visit to talk about the upcoming treatment and what to expect as well as dates for when to get a pregnancy test (if you are of child bearing age), stop meds (Synthroid), start meds (Cytomel, if you doctor does this, not all do), when to get your Thyrogen injections (If it is available and if your doc does this. At the time of this post there is a world-wide shortage and I was unable to get these. Therefore I had to go through withdrawl... which is God awful). When to get your TSH tested, when to stop Cytomel, start the LID, get a neck ultrasound, get RAI tracer dose, go into isolation (and for how long to exercise precautions), stop LID, get a body scan, have your thyroglobulin tested, start Cytomel again, schedule a follow-up appointment to go over all testing results, and finally when to re-start your Synthroid and get on the road to feeling HUMAN again!
2. If you are of child-bearing age, you will have to get a blood pregnancy test to be sure you are not pregnant. I will call this blood draw #1. Brooke insisted she go with me for this so that she could hold my hand so it wouldn't hurt! LOVE her! Daddy took the other two kids and Brooke indeed held my hand, averted her eyes, and told me it didn't hurt. Hard as she tried to emit the positive, painless vibes, this actually hurt like hell! The lady must have gone through my vein because it burned like fire for several hours and even into the next day. Awful.
3. About 6 weeks before you are scheduled for the RAI tracer dose, you will go off of your thyroid replacement meds. I was on Synthroid. Lucky me got to stop these on Thanksgiving... thus beginning my journey through Hypo Hell.
4. The day after stopping my Synthroid, I was told to start taking Cytomel. Synthroid is a T4 medication and Cytomel is a T3. I really am NOT at all versed in all of this business, so the quick and dirty is that in theory when they take away your T4 (Synthroid), but add in T3 (Cytomel), it *should* help you feel less crappy. Some people seem to really notice a difference and love being on it. To be honest, I didn't feel like it did anything, but really can't be sure. I have to take care of myself and three children under age four as well as a house and husband the best I can, so that in and of itself is just plain exhausting! :) Most nights the baby sleeps in 3-4 hour chunks so I'm not sure what feeling rested really is anymore, lol. You will typically take Cytomel for 4 weeks while your TSH is increasing. From what I've been told, this wears off quickly so you are told to take half of a pill 2x a day. This may be the smallest pill I've ever taken, so half of it is minute. Oh and apparently this can cause difficulty sleeping as I quickly found out, so instead of my original times, I was doing 9am/9pm, I changed it to 7am/2pm-ish.
5. You will continue on this 2x a day Cytomel routine and then in 4 weeks stop taking meds all together. This is when you will begin your Low Iodine Diet, or LID for two weeks. I will be doing a separate post all about this diet, so stay tuned for that. You have done this before, when you did you RAI ablation dose. For me this was just over a year ago, so I had forgotten how difficult it was... sort of. I knew it sucked. The further I got in to it, the more I remembered. And, just like last time, by the end of it, I was OVER it and pretty much survived on low iodine banana oatmeal cookies alone. Both times, I dragged my heels and moaned and complained about how terrible it would be. Then, I sucked it up, faced the facts that I HAD to do it, I had no choice in the matter, and I tackled it in true Tracy fashion. I made a list, found some good foods and recipes and stocked up. I was over-zealous at first and made lots of different things. Heck, the thought, "this isn't so bad, it's very healthy, I can do this long term" even crossed my mind. Then that thought left and has not returned. I will try to eat and be more healthy, but not nearly as limited as this diet is. A girl needs her cheese and coffee creamer, yo.
Our bodies require thyroid hormone (T4); a hormone taken in synthetic form (by a daily pill) once the thyroid has been removed. The body also requires T3 which it converts from T4. Without thyroid hormone, the body produces an increasing amount of thyroid stimulating hormone (TSH). An elevated TSH of at least 30 mIU/L is needed for the RAI treatment to be effective. To achieve this rise in TSH, patients may be instructed to stop taking their thyroid hormone replacement pills.
Becoming hypothyroid by hormone withdrawal, involves stopping levothyroxine (T4; the drug’s brand names in Canada are Synthroid and Eltroxin) for approximately 4-6 weeks prior to RAI treatment. During the time that levothyroxine is not taken, Cytomel (T3) may be prescribed. Cytomel is a fast-acting (and fast dissipating) form of thyroid hormone used to minimize the symptoms of hypothyroidism during hormone withdrawal. Cytomel is stopped approximately 2 weeks prior to RAI treatment.
‘Going hypo’ is a gradual process with symptoms increasing slowly over the six week period. The longer the patient is off of thyroid hormone, especially during the last two weeks prior to RAI treatment when no thyroid hormone is taken, the more likely the patient will experience symptoms of hypothyroidism.
Some Symptoms Associated with Hypothyroidism:
*Tiredness, loss of energy, weakness
*Trouble sleeping, nightmares or excess sleep
*Puffiness especially in the face and bloating
*Loss of ability to concentrate, memory loss, absentmindedness
*Anxiety, panic attacks, irritability, mood swings
*Dry eyes, skin and hair; hair loss
*Change in menstrual cycle
*Joint pains and stiffness, muscle cramps
*Intolerance to cold
*Tingling or numbness in fingers or toes
*Ringing in ears
*Slight changes in eyesight
6. After nearly two weeks on this diet, you will go get a neck ultrasound. They will use the results of this ultrasound, your throglobulin levels (should be 0 since we have no thyroid- if they are elevated it would signal a problem), and the body scan to figure out if everything is gone or if there is something they need to look into further.
(^ actual machine and bed used for my u/s)
(^ not me)
Then you will have your TSH tested and hope, beg, pray that your TSH is high enough to go ahead with the RAI dose. I've had two endo's. My first one wanted it to be at least 40. This one wanted at least 60. Mine was 58.1 when I had it drawn on a Friday, but my RAI was scheduled for the following Wednesday, so 5 days later, and was well over 60 by then! Whew! (FYI- it is important to know your body while going through this. Some people take a while for their TSH levels to increase, and others will spike quickly. Mine have always gone up quickly. Knowing this, and knowing that we were QUICKLY approaching the end of the year, and the end of our good insurance plan, I pushed to have mine checked a week early. If it was high enough I would be able to move all of this up a week, thus keeping it in this calendar year. So, I started my LID a week early (after only 3 weeks on the Cytomel), and was on it for two weeks before testing my TSH. Worst case scenario in my book was that it wouldn't be high enough, I would have to wait another week (and do the diet another week), and be pushed into a new year and new (crappy) insurance plan. Thank GOD, my plan worked (I did this the first time around as well, by the way). This is blood draw #2.
*insert Christmas weekend here* I REALLY wish someone would have gotten this for me for Christmas:
7. If you are able to do Thyrogen injections, you would get these now. You would also not have to do the above withdrawal from your Synthroid (LUCKY!!!). You would go on two consecutive days for Thyrogen injection #1 and then Thyrogen injection #2. But, there is a world-wide shortage of this drug, so I had to go through the full withdrawal. I was scheduled for RAI on a Wednesday, so I would have gone in on Monday and Tuesday for these injections.
8. Okay, at this point you are off of your Synthroid (you would stop this when you do Thyrogen if you get to do that), and you are still on your LID. Now you go in for your RAI dose. For me this was on a Wednesday. You go in, they go over the precautions, you pop the pill (capsule), and leave. You don't pass Go, you don't collect $200, you don't stop and get a drink on the way home. You go straight to the place you have pre-arranged to sit out your isolation. My tangent on this post-RAI isolation to follow...
Down the hatch!
And then you become:
Head straight for your safe place.
These are my isolation digs:
Begin rant: Dear Doctors: Please get your stuff together and talk with the Nuclear Medicine people (Radiation Oncologists & techs) before telling your patients the post RAI precautions. Thankyouverymuch. I was told by the Endo's office that I only needed to be away for 24 hours and that I would be fine after that. Mind you, you don't go for your body scan 24 hours later, you go for it closer to 48 hours later. To do this scan you must be emitting radiation and emitting enough that the machine can pick it up without touching you. So, you tell me how it is ok for me to hold my sweet babies when I am emitting enough radiation that a machine can pick it up. When I said that I have little babies they said that 48 hours would be better. Ok. So, I had planned to go for my body scan and thyroglobulin labs and then was going to go home and take over my mommy duties and Corey was going to return to work for the afternoon. Well, when I went for my RAI dose, the Nuke med person (a wonderfully nice lady, by the way), I was told that she wouldn't recommend being closer than three feet to others, especially children, until Saturday evening at least. And even then, didn't recommend sleeping near or with them. Luckily I can stay here as long as I need to, so it wasn't really an issue. Corey had to take the whole day off and again, luckily, his boss is understanding. Corey's mom has been a Godsend and came down to keep the kids the first two days. They LOVED having their Nana come stay with them! Now, some people may disagree with me and just go with what their endo says (24 hours), but I am siding with the Nuke Med people here who do this for a living. I'd also rather be overly cautious than not. Radiation freaks me out and isn't something to be taken lightly, in my opinion. End rant.
I took a shower to wash off some of my radioactivity. It was nice not having one or two little people banging on the door screaming, "Mommy! Mommy! Mommy!!" Or trying to crawl under the bathroom door while I get dressed!
(That ^^ is an actual hand of one of my children!)
Since I took a significantly smaller dose of RAI, I didn't expect to have any side effects. Well, I was wrong. I felt fine right afterwards, just like last time. I ate a LID lunch prepared by my wonderful mom. I could seriously get used to having someone prepare all of my meals!!
But, late in the afternoon, I started feeling overwhelmed with exhaustion. Then the nausea hit. I ended up popping a Phenergan and taking a nap at 4:15pm.
Had some cookies that I saved from Christmas as a snack (did not eat all of them.... yet!).
And had an awesome grilled cheese for lunch!
9. 48 hours after your RAI dose, you will go back to the hospital for a full body scan. (This is what I will do tomorrow morning). I will have her check my level of radiation while I am there as well.
10. Then I will go to the lab for a thyroglobulin blood test. This will be blood draw #3.
11. After my scan and thyroglobulin test, I am allowed to start on my Cytomel again, but not my Synthroid. This is different from last time. Last time I started on my Synthroid at this time as well, but this time they want me to wait until after my follow up appointment.
12. The final step in this process, God willing, is a follow up appointment with your doctor to go over all test results. . That way, if something comes back as abnormal and they need to do another RAI treatment your body will already be ready. I may die if that happens though, so be forewarned.
13. If all is well, you will be able to re-start your Synthroid and hopefully be on your way out of this hypo hell.... in 4-6 weeks!
I leave you with one final thought: