[VanIsleGal August 23, 2012 at 10:12 pm Post count: 66]

#1059307

Okay I hadn’t heard of these before. Can you lose your sense of smell and taste after RAI? If so, can these ever be permanent? Also, can the salivary glands be damaged from RAI? My endocrinologist didn’t tell me these things. If I learn this is true I might cancel the RAI, because I don’t feel I have been properly informed about the risks.

I had pneumonia and lost my sense of taste for a month in the spring. This was interesting as food became so unappealing and cooking was no fun. I am sure glad my taste returned to normal. I also had different taste sensations when on the PTU…food didn’t taste the same.

I will have a look at the Treatment Options above to find some answers.

How is everyone doing? I hope everyone is enjoying the end of summer!

[gatorgirly August 24, 2012 at 6:29 am Post count: 326]

#1174000

I have never heard of losing smell or taste after RAI. I also was never informed of this risk but never experienced either – food tasted the same and my sense of smell was just as acute as it has always been. I did a quick Google search when I read your post and all I am seeing is cancer websites, so I’m assuming it has something to do with the dose of I-131 that cancer patients get, since our is much, much smaller.

[VanIsleGal August 24, 2012 at 11:16 am Post count: 66]

#1174002

I am thinking and hoping the blog I read was exaggerated. She had Graves’ disease and also said her skin peeled from the radiation. I don’t believe that. Maybe her skin peeled from going hypo? I didn’t post the article link as I wondered if it was inaccurate. I am relieved you didn’t have these symptoms!

[gatorgirly August 24, 2012 at 11:38 am Post count: 326]

#1174003

Please tell me you’re not reading the stop the thyroid madness website. That site is total bs. I “joined” (and then quickly unjoined) a hyperthyroidism/hypothyroidism group on another site that I use to log my calories and exercise, and those people will swear up and down by the stop the madness site. They will also tell you that people who are hypo should take diet pills, people who are overweight should take levothyroxine, and that anyone with Graves should never eat between 6 p.m. and 10 a.m. The point of that site is to sell their books, not to provide proven medical advice for people with thyroid disease. It really ticks me off, to be completely honest, especially since they recommend high-salt diets or taking products from a health food store instead of levothyroxine.

People who receive actual radiation in the form of radiotherapy/radiation therapy may have mild burning at the radiation site. Again, you aren’t being treated for cancer and you aren’t receiving radiation therapy.

Just goes to show that you can’t trust everything you read in the internet. I am truly not trying to convince you to get RAI, but I am trying to convince you that your doctor was not being careless or malicious by not telling you that you might burn your face off or stop tasting food if you take the RAI.

[Bobbi August 24, 2012 at 1:42 pm Post count: 1324]

#1174001

Approximately 80% of the medical information online is bogus, outdated, or otherwise unreliable. One of the quickest ways someone should become skeptical is if the site is trying to sell you something…whether it is a book or a “tonic” or whatever. RUN from those sites, as a rule.

Thanks, gatorgirly, for your comments. It’s a help.

[VanIsleGal August 24, 2012 at 10:47 pm Post count: 66]

#1174004

Not sure the name of the website. I didn’t see anything for sale, but I wasn’t on the site that long. I think it was a bogus website though. Glad to know these symptoms of RAI aren’t true!

Enjoy the weekend!

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