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#1 Sept. 1, 2012 07:53:16

AzGravesGuy
From: Peoria, AZ
Registered: 2012-08-07
Posts: 160
Profile  

Well, here goes!

What a week it has been. I am sorry for not being able to update sooner.

I am now in the quiet freak out phase of preparedness.

My experience so far leads me to believe I am having a “drive thru” treatment. No one from my dr's office or the treating hospital has given me any information on isolation recommendations, diet, or precautions, let alone the results of my uptake test. Nice.

I am at the point of having so many questions thinking clearly is difficult. Lol! Monday is a holiday and treatment is Tuesday, so this is my only source for answers before then.

Any opinions on the following issues would be greatly appreciated.

I don't have the luxury of taking a full week off for isolation. My treatment is Tuesday afternoon, I am scheduled to drive carpool Friday morning…..all adults…am i putting them at risk? How much will I contaminate the car? Should I wear disposable vinyl or latex gloves? Put a garbage bag over the seat? Surgical mask? Pay someone to take my place?

Are there certain foods that are better to eat after RAI? I am a Vegan already (15yrs and counting), but was wondering if boosting my raw intake would help.

I have a stockpile of xylitol hard candy for the first 2 days.

If I wear gloves and a hooded Tyvek suit can I get away with using the kitchen without having to hazmat wash everything? I have a friend who works in asbestos removal and he offered to hook me up with disposable suits and masks if needed.

Can I handle food safely with gloves? I get an organic produce box delivered every Wednesday from a local farm. Will I contaminate it by moving it to the fridge if I wear gloves and a suit?

I read about some people being told to shower 4x a day after RAI. Sounds very “Silkwood” to me. Is this necessary for a 15mci dose?

The pets will be dropped off at boarding before I swallow the magic pill. I have them scheduled to stay until Sunday. Are there guidelines for how long the cat has to stay? I know from working in that industry cats are extremely sensitive to RAI exposure, but cannot find specific recommendations.

I have large plastic sheets to cover everything in my iso room. Inflatable mattress with cheap sheets…also read sheets should be changed daily…opinions? Plastic bags for my cell, keyboard, mouse, remote control and iPad.

I have to stop typing for a while now. My head is literally buzzing with hundreds of unanswered questions. Lol!

Thank you everyone! I apologize if this sounds like the rantings of a crazy person. I expected to have some call-backs before today. Any opinions, tricks, or tips would be greatly appreciated.

Edited AzGravesGuy (Sept. 1, 2012 16:06:27)

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#2 Sept. 1, 2012 12:20:57

bretbunch
Registered: 2012-09-01
Posts: 1
Profile  

Well, here goes!

Hello. I just found this website/forum today and saw your post and thought I would reply.

Here's my story….I was diagnosed with Graves in November 2005 and had RAI the Thursday before New Years 2006. When I went to the hospital to take the radioactive pill, I was told that I had to isolate myself for 3 days, with no contact with anyone else, especially children. I had to flush the toilet 3 times after each time using it due to the radiation. On the way home from the hospital, I had to sit in the back seat of the car, behind the passenger seat, so my husband, who was driving, had less exposure to the radiation that my body was giving off. I also had to suck on hard candy for about the first 3 days to 1 week so that my saliva glands would not be so affected. I basically just laid around for 3 days and watched TV. I went back to work after those 3 days. The Dr. had to monitor my levels regularly to make sure that I was heading towards hypothyroidism and then when it was time, I was started on replacement hormone. I was told at that time to only use the brand name thyroid replacements, so I was started on Synthroid. The synthroid worked well for me for quite a few years, but then I noticed symptoms, even though my TSH was sitting at 1.96.

I searched out a naturopathic Dr. and I have been very happy with my choice since then. I live in AZ too and when you start to go hypothyroid, I encourage you to go to a naturopathic Dr. They don't take insurance, but I think that your health is well worth it. I recommend Dr. (edited - please send individual doctor names via Private message) in Mesa. He fully understands the disease, which you will find most endocrinologists do not. He not only treats the disease with medications (natural and compounded thyroid hormone–whichever works best for your body), but he treats other hormone imbalances as well. He will help you get your life back!! He has helped me. He doesn't just give you a pill and tell you that everything will be fine–he truly listens to you and treats the whole person.

Everyone's experience is different, but I definitely felt the effects of the RAI, which was probably the increase in hormones in my body, from the RAI. You will have your own experience, but just know that you are on the road to recovery. I wish you well with the treatment.

Edited Kimberly (Sept. 2, 2012 15:48:59)

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#3 Sept. 1, 2012 15:07:20

stevef
Registered: 2011-09-01
Posts: 1
Profile  

Well, here goes!

Here are some basic guidelines on RAI from the ATA:

http://www.thyroid.org/radioactive-iodine [thyroid.org]

They have some general guidelines on how long to stay away from people, etc. but the specifics for you should come from your doctor (or a doctor of nuclear medicine) based on your dose.

You have some very specific questions and you should try to get those answered by your doctor before Tuesday afternoon.

By the way, Kimberly is traveling a bit this weekend so I'm not sure how prompt she will be at replying to your post.

Steve

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#4 Sept. 1, 2012 17:00:04

snelsen
From: Seattle, Wa.
Registered: 2010-01-01
Posts: 1909
Profile  

Well, here goes!

It might be worthwhile to use the Search Post option, find someone who has a recent RAI, or put in the word “precautions” see what you might learn from others.
Good advice from Steve if you can accomplish this. And the reference that is listed is good, too. REalize that people with thyroid cancer has a much much larger dose than Graves' folks, so the references are wide to accomodate varying doses.
But , in the meantime, I think I remember the following, just from reading posts from others on this forum, and some are relevant to your questions.
I am hoping others see your note and share their experiences.

+++***I suggest posting a new post that says, “RAI precautions, what did you do?” That will attract people to the specific subject.*******

The overal biggest thing to think about is VERY close proximity to your neck for a few days, of animals and kids. Also, be careful that there no urine splashes.

I think you will be fine driving the car pool. People will not be wrapped around your neck, you will be on day 3. You aren't spending any long time in close proximity, you are just going to work. I am pretty sure you don't need any of that plastic in the car.

I don't believe there are any food restrictions at all.

I hope you get this information from others, but the hazmat suit and gloves aren't necessary at all. I am sure this is not necessary.

Your food. Use the usual precautions you always do. Wash your hand. Nothing else.

I don't recall anyone ever mentioning the multiple showers.

I can't speak the plastic sheets, etc. Seems like an overkill. The big thing here is close exposure of others to the area around your neck for a few days, and being careful of urine. I am not a bit sure you need to do any of this.


**I'd ask all of your questions when you HAVE the RAI. And I am sure they will give you a sheet of paper about precautions. Ask them about the cat.
Ask them if your dose is small, medium or large, and ask them the questions you have listed.
Shirley
I know how you feel, you want to know ahead of time, anticipate everything and be prepared. But some of the questions really can be clarified the day you do this if you don't get reliable information before that.


TED 2008-present. OD for pressure on optic nerve 02/02/10
Eye muscle surgery 09/23/10 Upper eyelid surgery 02/01/11
Lower eyelids with grafts from palate, 10/5, 10/25/11
Graves dx/thyroidectomy 1959-Synthroid from 1980

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#5 Sept. 1, 2012 17:10:38

gatorgirly
Registered: 2010-02-23
Posts: 326
Profile  

Well, here goes!

First of all, I think it is quite common for your doctor's office not to give you any information on the isolation precautions - many people on here have had that experience. Most patients don't get recommendations from their doctors (because they aren't the ones administering the RAI) but from the nuclear medicine department, and usually from the tech as opposed to the radiologist. Because I'm an obsessive planner, I called the nuclear medicine department as soon as my RAI was scheduled so that I could ask the tech all about the precautions. She repeated them, in greater detail, when I arrived to the hospital the day I took the RAI.

I had RAI on a Friday afternoon, and was told it was fine to go back into work Monday morning. You should be fine for your carpool - remember, radiation precautions are because radiation accumulates over a lifetime. If one of your co-worker has had a dozen X-rays, the radiation your body will be emitting by Friday will not make a difference whatsoever. For the others, it will be so minimal that it isn't going to give them any additional risk of cancer or leukemia.

Kimberly has posted about there not being any diet restrictions once we are no longer hyper.

I live alone, and did not wear gloves or anything like that, and all I did was a good cleaning of my apartment on Monday evening, but moreso because I'm a clean freak than because of the radiation. A hazmat suit is absolutely not necessary otherwise you would not be allowed to leave the hospital and would be placed in an isolation room. Remember, the dose you are receiving is incredibly small compared to what thyroid cancer patients get (50-200 mCi). What you are describing sounds really excessive to me, and may only make your anxieties about RAI worse. You don't need sheets, plastic bags, etc. You also don't need more than one shower a day. I was told to flush twice, and that drinking a lot of water would help flush out the excess radiation, so I made sure to stay hydrated. No special foods other than the hard candies for sore throat.

My dog came home Monday after work. He is in tip top shape 18 months later. Cats are prone to hypERthyroidism, so I would ask your vet whether or not he needs extra time away from you. Again, this is all a lifetime exposure risk we are trying to minimize.

I really don't want you to panic and make this a huge ordeal for yourself, but if you would help you rest easier by covering your home in plastic, go for it. However, if it provided any benefit, I really think everyone who chose RAI would have been told to do so by the nuclear medicine department, but we were not.

I completely understand why you're anxious about this without your uptake results. My understanding is that the uptake results come into play as to how much I-131 you need. My radiologist and endocrinologist worked for separate health care systems so my records were not transferred, and the radiologist refused to give me the pill until he got copies of my entire medical record and felt comfortable with the dose my endo had recommended. So I'm sure your radiologist will have copies of your uptake results, and if not, will request them on Tuesday.

You're going to be fine. RAI is safe for you and others you will come into contact with after those first 72 hours, otherwise millions of people would not have undergone this treatment method. I had serious anxieties about it, too, but mine were about the permanent death of my thyroid rather than the radiation exposure.

I wasn't going to mention this, but I think I should. My boyfriend (at the time), refused to leave me alone that weekend. He knew the risks, saw all the paperwork I was given, and listened to me beg for days ahead of time and then for hours when he showed up after I came home from taking the pill. In the end, I gave up fighting because I realized I wasn't going to win and was so appreciative of him putting himself at risk to make sure I was OK that weekend. I wouldn't recommend anyone be that good of a boyfriend, but he remains healthy and well to this day. I'm glad he chose to spend the weekend with me because it was an emotional few days for me.

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#6 Sept. 1, 2012 17:44:08

VanIsleGal
From: Victoria, BC
Registered: 2012-04-04
Posts: 66
Profile  

Well, here goes!

I think you are mainly radioactive at your neck and in body fluids after the RAI. So you won't contaminate your veggies washing and cutting them by hand. At least I don't think you will!

I will stay home with my cats after RAI because the vet wasn't worried about them very much and I haven't received any guidelines from the hospital either. They are going to get a call from me on Tuesday! I will stay in another room and I won't let my cats sleep with me for 3 nights.

I am going to eat seaweed after the RAI to increase my iodine. Iodine factors are believed to be a major cause of thyroid diseases.

Good Luck on Tuesday! xoxo

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#7 Sept. 2, 2012 15:54:05

Kimberly
Online Facilitator
Registered: 2008-10-14
Posts: 4240
Profile  

Well, here goes!

@AZGravesGuy - Steve provided the exact same link that I would have. Just keep in mind that these are *general* guidelines, and any specific directions that you receive from your own nuclear medicine team should get priority. Precautions can vary from state to state and facility to facility.

@bretbunch - Welcome to our forum! Please note that I edited out the name of the doctor that you provided (per forum policy), but you can communicate doctor names via private message. The PM option is on the left-hand side of the screen when you are looking at an individual's message.

Also, I would personally recommend using caution with using a doctor who is not an MD. (Some doctors who practice as naturopaths also do have their MD). I personally had a not-so-good experience with a naturopath early in my diagnosis who wanted to do some super expensive IV therapy for “mercury poisoning” – that turned out to be totally unnecessary. Not to say that there aren't knowledgeable, caring naturopaths out there – but buyer beware.


Kimberly
GDATF Forum Facilitator

…through nature's inflexible grace, I'm learning to live…
– Dream Theater

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#8 Sept. 3, 2012 07:15:20

AzGravesGuy
From: Peoria, AZ
Registered: 2012-08-07
Posts: 160
Profile  

Well, here goes!

Thank you everyone for the sound advice and words of encouragement. I plan on taking a list of questions & points to confirm and having every one addressed before I swallow the pill.

I decided to make my home preparations a little over the top as i find conflicting information online.

As you said Kimberly, laws and guidlines vary from state to state, facility to facility. Even country to country. Our (U.S.) laws are pretty relaxed since the late 90's for various reasons.

If I had the same procedure done in Toronto, my hospital stay would be 2 days minimum, followed by a 7 day in home isolation. They recommend many showers a day and not sharing a bed for at least 9 days.

http://www.uhn.ca/Patients_&_Visitors/health_info/topics/documents/Oncology__and__Blood_Disorders/Radiation_Therapy/Patient_Handouts/Special_inst_Radioactive_Iodine-D5534.pdf [uhn.ca]

So, is the I-131 I am receiving here less dangerous than what is used in Canada?

I would rather be overly safe then put anyone or my pets at risk.

Depending on what my Dr recommends post treatment I may very well be searching for a new one. I will keep the naturopath option in mind. Thanks Bret!

I found recommendations for high antioxidant fruits and veggies after radiation of any kind on a cancer site. Apricots, goji berries, blueberries, mulberries, kale, etc. I figured they are a healthy addition to any diet so I plan on making my first week really antioxidant heavy. They also recommended coffee enemas…..gonna pass on that.


Tomorrow is the big day! Time to show Grave's who is boss.

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#9 Sept. 3, 2012 07:43:15

snelsen
From: Seattle, Wa.
Registered: 2010-01-01
Posts: 1909
Profile  

Well, here goes!

Hi Azguy, yes, I think you have received much good advice.
I am so curious about the Canadian guidelines you referenced, that I plan to write to them to ask if they are their current guidelines.

I live just below the border from Canada on the west side of the country. I have a couple friends who are MD's in nuclear med in Canada. They completely disagreed with these guidelines, so I am wondering if they are still current, and/or if it is a geographic difference (which happens.) Anyway, I am surprised, for as I understand it from my Canadian friends, the Canadian Health Service is much more careful with expenditures for some procedures, than the U.S. system. But these guidelines are in great contrast to that.

Best wishes tomorrow. Do what you need to do for yourself, and get the rest of your information from Nuc. Med tomorrow. As gatorgirly and others has said, the endocrinologist is not the right resource for information about RAI. If you had more time, you could have contacted them ahead of time, but you will be just fine receiving the info tomorrow.
I look forward to hearing from you again! Maybe even tomorrow!!
Shirley


TED 2008-present. OD for pressure on optic nerve 02/02/10
Eye muscle surgery 09/23/10 Upper eyelid surgery 02/01/11
Lower eyelids with grafts from palate, 10/5, 10/25/11
Graves dx/thyroidectomy 1959-Synthroid from 1980

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#10 Sept. 4, 2012 13:54:04

AzGravesGuy
From: Peoria, AZ
Registered: 2012-08-07
Posts: 160
Profile  

Well, here goes!

Its done. My dr agreed with the Canadian protocol referenced earlier. Its not required but he agreed it was helpful.

Now to race home! I will check in later!

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