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How many of you have thyrogen side effects ? RAI side effects ? What were they, how bad, and how long lasting ?

MarinMark
Posts: 139
Joined: Aug 2011

Please share.

amorriso
Posts: 186
Joined: Oct 2010

Hi there. I did the thyrogen shots for my second round of RAI. No side effects from the shots (other than slightly sore butt cheeks - they inject one shot in each side)

As for RAI side effects - I felt a bit tired - kind of like I had a mild flu. I was mainly bored silly - there is only so much tv you can watch.

About a week after the RAI I did lose my sense of taste - most things tasted like cardboard. That lasted about 2 to 3 weeks. Breads, pasta, and unfortunately pizza tasted the worst - meat, salad and really spicy things were ok.

I also had trouble with my salivary glands swelling. That was painful and unconfortable. The swelling started about a week after the RAI. I learned how to massage it, and also learned to drink tons of water.

My taste buds are pretty much back to normal - potato chips and a few things still dont taste quite right - but everything else is fine. My salivary glands are ok too now - though I still find I need to drink a lot of water.

The RAI is not a terrible experience - its more inconvienent. You'll get lots of advice here to get through it.

Cheers

Andrea

amorriso
Posts: 186
Joined: Oct 2010

Hi there. I did the thyrogen shots for my second round of RAI. No side effects from the shots (other than slightly sore butt cheeks - they inject one shot in each side)

As for RAI side effects - I felt a bit tired - kind of like I had a mild flu. I was mainly bored silly - there is only so much tv you can watch.

About a week after the RAI I did lose my sense of taste - most things tasted like cardboard. That lasted about 2 to 3 weeks. Breads, pasta, and unfortunately pizza tasted the worst - meat, salad and really spicy things were ok.

I also had trouble with my salivary glands swelling. That was painful and unconfortable. The swelling started about a week after the RAI. I learned how to massage it, and also learned to drink tons of water.

My taste buds are pretty much back to normal - potato chips and a few things still dont taste quite right - but everything else is fine. My salivary glands are ok too now - though I still find I need to drink a lot of water.

The RAI is not a terrible experience - its more inconvienent. You'll get lots of advice here to get through it.

Cheers

Andrea

amorriso
Posts: 186
Joined: Oct 2010

Hi there. I did the thyrogen shots for my second round of RAI. No side effects from the shots (other than slightly sore butt cheeks - they inject one shot in each side)

As for RAI side effects - I felt a bit tired - kind of like I had a mild flu. I was mainly bored silly - there is only so much tv you can watch.

About a week after the RAI I did lose my sense of taste - most things tasted like cardboard. That lasted about 2 to 3 weeks. Breads, pasta, and unfortunately pizza tasted the worst - meat, salad and really spicy things were ok.

I also had trouble with my salivary glands swelling. That was painful and unconfortable. The swelling started about a week after the RAI. I learned how to massage it, and also learned to drink tons of water.

My taste buds are pretty much back to normal - potato chips and a few things still dont taste quite right - but everything else is fine. My salivary glands are ok too now - though I still find I need to drink a lot of water.

The RAI is not a terrible experience - its more inconvienent. You'll get lots of advice here to get through it.

Cheers

Andrea

MarinMark
Posts: 139
Joined: Aug 2011

Why were you bored ? Did you have to stay indoors ? Couldn't go out walking ?

What dose did you have of radio iodine ?

Why didn't you use thyrogen the first time ?

How were the side effects of rai with your first round (? withdrawal) compared to the 2nd (thyrogen) round ? Did you have a loss of taste or salivary gland swelling then ?

Two shots ? Thought it was one shot a day for two days. Did you get both shots at the same time ?

sunnyaz
Posts: 582
Joined: Oct 2010

I also had the Thyrogen both times I did RAI. No really bad side effects except for a slight head ache after the first injection. Each time I had the remaining injections I took 800 mg of Ibuprofen about an hour before to combat the headache and it worked. I went back to work after all four injections. I never went the hypo route. I was too chicken and couldn't afford to take that much time off of work.

My first dose of RAI was 83 mCi's and my second dose was 178 mCi's. I had similar side effects as amorriso as far as taste goes but my Nuclear Medicine doc gave me steroids to take for the first three days to combat harming my salivary glands. My taste buds returned to normal within about six weeks. It wasn't bad at all. No damage to my salivary glands. I sucked on hard candies to keep my salivary glands producing and drank lots of fluids to move the RAI through my system. The goal is input and output during that time. You will need to flush your toilet two to three times each time you use it and can't share with anyone else during the seven days. Depending on your dosage it could be three to four days.

It is one injection a day for two days. They are 24 hours apart and then you have your RAI twenty four hours after your second injection.

You don't really have to stay indoors, but you have to isolate from other people for seven days. You can not have close contact or you will Radiate them and damage their thyroid. Your Nuclear doctor should give you the basics on this but if he doesn't there are tons of posts on how and what to do during your RAI isolation. Some doctors are too lax in their information of how to prevent radiating others. I went out walking but away from others and I showered often. Simply passing by someone for one second will not expose them. If you sneeze, cough or sweat on them they will be exposed.

Here are some of the precautions I took. I mostly stayed in my isolation room, watched TV, posted on this site and facebook. I made phone calls and read books too. I actually enjoyed my isolation time. It was a good excuse to tell people to just leave me alone and they had to listen. My kind of vacation! I was able to be around my family at a distance of 10 feet for short periods of time. I used latex gloves to touch anything in the house. For instance if I needed to get something to eat from the kitchen. I used disposable plates, forks, spoons etc and kept everything in one bag in my isolation room to be disposed of after the seven day period. The remote controls for the TV, I put in Ziploc bags and then removed them after isolation and cleaned everything in the room thoroughly before my husband came back in. Anything that I touched had to be wiped down. I found Clorox wipes to be the easiest because I could just put them in the isolation garbage bag and throw it away with everything else. I washed the sheets and mattress cover twice and rinsed twice before I put them back on the bed.

Blessings,
Julie-SunnyAZ

MarinMark
Posts: 139
Joined: Aug 2011

Thank you Julie--- have to read it several more times. Very nice.

How was the low iodide diet or "lid" ? What foods did you eat ? What did you drink ? I was told that one can collect a one day urine to make sure the iodide is low.

sunnyaz
Posts: 582
Joined: Oct 2010

I used a lot of recipes from the thyca website and modified them to my own taste. They have a cookbook in PDF format that is very useful. I prepared lots of frozen foods to keep on hand so that I could just pop them in the microwave and get out of the kitchen as fast as possible.

Favorite snack was frozen banana's with all natural peanut butter to dip. I found a no salt peanut butter at the Fry's food store I shop at. They have an all Natural foods section. You can also blend the frozen banana's and make it taste like banana ice cream. I ate lots of fruit, because I love fruit anyway. For a change I used frozen fruit in a blender with fruit juice and made smoothies. Add a little bit of crushed ice for an icy effect.

Some of the dishes I prepared in advance were:
Stuffed Cabbage
Spaghetti with Meatballs
Vegetable Beef Soup

I made them with all natural ingredients, and checked all labels on cans of sauce etc to make sure it had no added salt or coloring. The health food stores are a good place for these types of foods. I.e. Trader Joe's or the Whole Foods Grocery market. Not sure what is available in California for you. Being near San Francisco I am guessing you have some pretty good places you can go. I also made my own sauces for my dishes. I used only non-iodized salt (found right next to the iodized salt) at any grocery store.

I drank lots of different types of things. I had some coffee and I even used a little creamer that was non-dairy. I drank some soda (not great but a treat), lemonade, green tea and plain ole' water. Then I went pee pee pee all day long! Not to mention flush, flush, flush. I did aerobics in my isolation room to sweat out the RAI faster. It also kept me feeling better and I could sleep easier at night. I did take a walk one day while everyone was at school and work to avoid bumping into someone I knew. I didn't go far, I just took a quick one mile walk around the lake down the street from my house. Very peaceful and it cleared my head. At least I didn't feel like I was stuck in my house.

I didn't do the urine collection but it wasn't suggested or recommended to me. Some on the site once mentioned that they were told they could do a "spot" urination check. Not sure how that panned out or if he/she did it. As long as you do the LID for two weeks you should be fine.

Blessings,
Julie-SunnyAZ

MarinMark
Posts: 139
Joined: Aug 2011

Thank you Julie--- have to read it several more times. Very nice.

How was the low iodide diet or "lid" ? What foods did you eat ? What did you drink ? I was told that one can collect a one day urine to make sure the iodide is low.

amorriso
Posts: 186
Joined: Oct 2010

Hi again. I live in Musca, Oman (lovely little middle east country). The rules here are that you must stay in the isolation room for 3 days for RAI. Its a windowless room with no cell phone or internet connection and only 2 english channels. Hence the extreme boredom.

As soon as I was out I did like others did - went for walks etc but stayed away from people. My dose was 175 somethings. I didnt know about thyrogen the first time around. I will use it again if necessary - I'm a teacher and really cant be in a hypo state when I work. It allows me to keep working and not take more time off. Thyrogen is one shot a day for 2 days.

I was so hypo my first time round I barely remember the month. Miserable way to live. With thyrogen I was able to do everything I wanted to do (ok - except for following the diet) and was pretty much right back to normal after the RAI.

Any other questions?

Andrea

teamwink
Posts: 97
Joined: May 2011

Thyrogen was really not bad - I got a headache but that was it. With the RAI, I didn't really experience much - a bit tired, but that was probably from being so stressed out about it, honestly. I had a slight metallic taste on my teeth for about a day. My pee didn't glow in the dark and I didn't get super powers - a bit of a bummer :)

MarinMark
Posts: 139
Joined: Aug 2011

Thank you--- nice comment.

alapah's picture
alapah
Posts: 256
Joined: Oct 2009

I didn't see it mentioned here in other posts but there is a great downloadable free Low Iodine Diet cookbook available at thyca.org. In addition to the recipes it includes a one page do and don't list of foods that i found helpful - just carried a copy with me all the time so I could keep in check. Best to make your own meals and snacks to be sure. Not everything in the cookbook was great but there are lots of things to choose from. I found it really helpful.

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