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momwithnosleep · 04-27-2012, 06:40 PM

My Endo has my case type priority. I did find out the type of cancer they are suspecting is follicular neoplasm. I am trying not to look up too much info on the internet because It can get over whelming. But I do have a couple of questions.

1.) If I have to do the RAI how long after surgery would that happen? My main concern is not exposing my children but especially my son with diabetes. Doing this at my parents is not an option.

2.) Are these symptoms normal for this? Pain in neck, sometimes up to the ear and into the shoulder, sore throat, choking on food and sometimes my own saliva. VERY tired and I feel like I have multiple personalities. I am also feeling VERY depressed!!!

sammy64 · 04-28-2012, 05:57 AM

Sorry that I can't answer your question about RAI after surgery - I'm sure Reece on here will chime in with lots of useful information since she's been through it.

My understanding is that thyroid cancer is painless. Your symptoms actually sound like they could be symptoms of hypothyroidism.

One good thing about cancer patients that have had surgery is the fact that doctors try to suppress TSH with meds. The thought is that, without TSH to stimulate them, any possible remaining thyroid cells won't become cancerous.

Many of us need suppressed TSH to feel well yet, doctors get erroneously concerned about that.

So, if you are hypothyroid now, at least you can look forward to getting a proper dose of meds after surgery.

Best of luck to you moving forward!

momwithnosleep · 04-28-2012, 08:20 AM

Thanks Sammy. I am hypo and have been on meds for 11 years. I currently take .125 mcg of Synthroid.

sammy64 · 04-28-2012, 08:58 AM

Hmmmm.....it sounds like your dose might be inadequate (or you might need some T3).

I'll gladly help you interpret your thyroid labs anytime.

Reece · 04-29-2012, 06:54 AM

Should you need RAI, talk to your doctor about putting it off for a time in the future when it's good for you (ie, I did mine right away, but the woman in my room with babies waited until the summer when a relative could help her).

It's not an emergency treatment. In fact, if your cancer turns out to be less than 1cm with no spread outside the thyroid, some people skip RAI altogether these days. Some hospitals will let you stay there for a few days if you have young children. It's not recommended to stay in a hotel, because you would expose the hotel staff, and someone could be pregnant. I have one friend who lived in her downstairs, and her family was upstairs for a week.

My nodule caused some neck pain when I found it. Whether it's cancer or not it can press on a nerve and cause discomfort. That doesn't mean it's cancer, just that it's too large for the space it's nestled in.

momwithnosleep · 04-29-2012, 07:22 AM

Thanks Reece!
Sammy the only thing I remember is him saying TSH 1.86.

sammy64 · 04-29-2012, 09:10 AM

Quote:

Originally Posted by momwithnosleep

Sammy the only thing I remember is him saying TSH 1.86.

momwithnosleep

Please know that I'll gladly help you with labs, etc. at another time if that's better for you (I'm sure you have your focus on your upcoming surgery).

I do think you'll want to take a closer look at your labs because people who are optimally medicated on meds like Synthroid will have TSH 1.0 or lower.

Hopefully, when it's best for you to address your labs here, you'll also have FreeT4 and FreeT3 test results to share. We would need to also see the reference ranges for these results because, unlike the TSH test, different labs use different ranges so your results can only be properly interpreted within the context of your lab's ranges.

As documented in countless medical resources and also mentioned in "Thyroid for Dummies" (written by an endo), the FreeT4 and FreeT3 are the best tests to evaluate thyroid function. Those results (not TSH) should be used for dosing purposes.

I've also read what Reece had to share about RAI not always being done. I couldn't remember the details and certainly did not want to mention something I wasn't sure about.

I wish you the utmost success in your journey and will keep thinking positive thoughts.

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