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raedenal's picture
Posts: 2
Joined: Feb 2012

I was diagnosed with stage I papillary in June 2011. I had a TT but didn't do RAI. I started taking levothyroxcine and when I did blood work in November my TSH levels were .4 but this month when I did them they were 2.5... My endo didn't really give me much info as to whether I should be worried or not, just asked if there was a chance I was pregnant. I took a hpt but he said if I wasn't there was a higher chance for recurrence. I'm still kind of confused about all of what's going on, and whether I should or shouldn't be worried. Any advice?!

Posts: 582
Joined: Oct 2010

TSH level doesn't have anything to do with measurement of recurrence. It is only a measurement of what your hormone level is (TSH-Thyroid Stimulating Hormone). Thyroglobulin levels can indicate a chance of recurrence though in your case it is too soon to know. My educated guess is that your TSH is bouncing around because you are on a generic medication. Usually I am an advocate for generics, however in the case of TSH I only use name brand Synthroid and my levels are always consistent. The generic's vary in strength from dose to dose. If you are not pregnant, I would get the RAI at the six weeks post Thyroidectomy mark. This will be most effective in reducing your risk of recurrence. Then you will need to get on Synthroid and keep your levels below 1.0 for at least three years. My TSH has been 0.2 for almost two years now. Being Hyperthyroid sucks but it sure beats the alternative. Advice; no you should not worry, you should be proactive in getting educated about your cancer and make your doctor listen to you and give you answers. Hope this helps.

Posts: 507
Joined: Apr 2010

there are a lot of questions on this one

first... are you pregnant
2nd ... has your weight changed by more than 10 lbs
has the time of day you take your meds changed
are you taking new meds or herbals

most endocrinologists like to keep your TSH low because it minimizes the chance that any remaining thyroid tissue (or thyroid cancer) is not stimulated.

Sunny is right as always....you probably shouldn't worry... but watch it... what did all your other blood-work look like and do you know how to read it yourself?

about June of 2012 you should be thinking of going through the LID and thyrogen(hopefully) and doing a year our scan. This scan is important to determine how much remaining thyroid tissue you have and from there the doctors can determine what would be a plan to continue treatment... Myself I am looking forward to May or June for my 2 year out scan my endo told me he would talk to me in May about it...

don't be afraid to ask questions that is how we all learn

raedenal's picture
Posts: 2
Joined: Feb 2012

No, I'm not pregnant and haven't changed or taken any new meds. My weight has dropped some, but no, I don't know how to read the results and paperwork. I made another appointment with my endo and asked my mom to.go with, since she's a nurse and can understand it better. I'm just worried not doing the rai was the wrong decision. Thank you for the advice tho.

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