[AzGravesGuy]

in reply to: Day 2 RAI Treatment #1174205

Slept terribly last night as well. Your eye twitch could be residual stress, but if it continues or is bothersome, call your dr. just to be safe. The shakes I didn’t experience. Are you eating?

I feel normal but hot. WARM! sweating profusely. Heart rate stable at 97 with Atenolol, but just dripping wet.

Keep us posted so we can compare notes.

[AzGravesGuy]

in reply to: Well, here goes! #1173492

Hi Everyone!

Today is day 1. I feel like I am physically on fire. Very warm.

Aside from an uncomfortable sleep, and the heat, I feel good. Normal.

NO APPETITE. I am thinking this is just stress related. I am drinking about 18oz of water, coconut water, or green tea every hour.

Shirley, It was my Nuclear Medicine dr that I compared protocols with. ( I printed out the flyer) He was familiar with the Canadian measures, and even said that is what he used to recommend….until the “insurance companies sued and lobbied to change the laws because of the costs involved”.

(So there’s my answer. I-131 is “safer” here because of the costs involved and nothing else. Way to go big business! Put money before health!)

I had 16.5mci. The tech said if I had over 30mci I would have a mandatory 48 hour quarantine in facility, which most insurance policies will not cover.

He recommended I shower 2-3 times a day for the first 48 hours to remove as much residue as possible. After the 48 hours, once a day should be sufficient.

The Dr asked why I didn’t have prevalent TED, I told him of my MMJ use, which he immediately discounted. His attitude then changed completely and our consultation was over. Arrogant, short, and condescending. Keeping his personal politics out of the exam room was too much for him to handle. Whatever. For being the head of the department, he certainly wasn’t very professional. Great! Another d-bag doctor. LOL! The proof is in my non bulging eyes. If it works for glaucoma pressure and pain, it seems reasonable that it would work for TED.

Metalsrfr, I understand your frustration. It’s insane how relaxed our regs are for this type of radiation. It really depends who you ask how safe we really are to others. It doesn’t make sense at all. BTW, turtles rock! I have a RES in my pond. He’s 9 years old and generally shy, but a great addition to the pond ecosystem.

The cat and dog are staying in boarding until Monday. I Facetimed with them this morning. They seem to be enjoying their stay.

This sure has been an experience. Hopefully NEVER again. We will see what tomorrow brings.

[AzGravesGuy]

in reply to: Well, here goes! #1173488

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!

[AzGravesGuy]

in reply to: low iodine AND low cholesterol diet. what fish is low in iodine but is high in good fats? freshwater? #1174157

Have you looked into Chia seed oil? It supplies Omega 3,6,and 9 with no iodine.

[AzGravesGuy]

in reply to: Well, here goes! #1173486

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

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.

[AzGravesGuy]

in reply to: Well, here goes! #1173479

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.

[AzGravesGuy]

in reply to: Well, here goes! #1173476

Hello Everyone!

I am in a great mood today. I just swallowed the Uptake pill and I am counting the hours until I can eat again.

For anyone else who doesn’t have insurance, or anyone curious, my RAI will cost about $1400 including a post scan, the Uptake was about $400 plus interpretation fee yet to be disclosed.

Pretty cheap IMO. I can keep my car after all! LOL!

My RAI is 2 weeks away. I am not as nervous as I was.

Once again, reading through the pages of posts here has answered all of my questions and allayed almost all of my fears about RAI. Thank you to everyone who posts on this board.

The anxiety has calmed somewhat, a refill of Valium helped. I still wake up 1 or 2 times a night burning up, heart racing, sweating like I am running a marathon. BUT, I am actually getting used to it. How sad is that?

Today when I woke up, I started laughing at my illness. I told my thyroid to do its worst, in 2 weeks I start calling the shots and getting my life back. I probably shouldn’t taunt my Grave’s Disease, but it was needed to put me in the right mindset for today.

At the hospital this morning, the admissions woman was surprised I have had Grave’s this long and I haven’t developed the eye problems normally associated with it. Her coworker had RAI done 20 yrs ago and still has protruding eyes.

I have used MMJ to treat my eye pain for the last 6 years, much like it is used for glaucoma with positive results. I wish more research was being done in this field. Only time will tell if it has really helped. Both of my family members who had Grave’s had protruding eyes before it was all said and done, so I am expecting it to happen to me. So far nothing noticeable. Fingers crossed.

I took pictures of the uptake pill and the gamma camera but cannot find how to post them by uploading. I plan on taking pictures of my scans today and tomorrow as well. If there’s a way to upload a pic into a thread please PM me on how to do it.

Thanks again to everyone on this board. I will update as things happen.

[AzGravesGuy]

in reply to: Well, here goes! #1173474

Thank you for the great replies, they mean a lot to me. I appreciate the kind words and insight. (I knew I wasn’t crazy!)

This anxiety side effect is beyond awful! I cannot wait for the day when I can sleep through the night and not feel like I am having a heart attack in morning traffic.

I am scheduled to get RAI September 4Th.
The Dr recommended another uptake scan so that will be done next week.

I don’t have insurance. As a single male age 18-40 with no kids, I can’t find any assistance with these procedures financially. Does anyone know how much the average RAI costs in the U.S.? The scheduling person I spoke with was clueless.

I am still doing it, even if I have to sell my car.

Off to yet another Dr appointment. I will update as things move forward.

Thank you everyone. I feel better knowing I am not alone in this.

[Author]

Posts