Taste Buds after RAI and what about family members getting tested??

Hello, I am 2 months post total thyroid removal (stage 1 papillary) and 16 days post RAI (low dose), has anyone experienced a loss of taste buds?? Nothing taste good to me not to mention how tired I am. How long will this last?
Also at what age do my children start getting tested for this?

Thanks in advance for your replies!

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Change in taste is very common! I personally noticed a little bit of a change, but it returned to normal after a month(ish) as I recall. Hang in there it definitely gets better.

Good question about testing children. I haven't seen much discussion on that topic. Hopefully someone chimes in with some insight. I'm also not sure what would be the best test (Ultrasound?) for family members or how frequently children of survivors should be monitored?

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I had my RAI treatment about two weeks ago. My taste buds are messed up as well. This is very normal. My doc says it should last about another month or so. I asked all three of my docs (surgeon, endocronologist, and nuclear medicine doc ) about testing my kids. All three docs said no. All three indicated that this was caused by exposure to radiation. I do not understand how or when I was exposed, except with normal dental x-rays.

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Lost my taste one week after RAI and it returned 4 weeks later. Very commone side effect.

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Regarding the taste buds, mine came back 3 to 6 weeks later. Still some taste loss around perimeter of front of tongue. Regarding the family members getting tested:
http://www.inspire.com/groups/thyca-thyroid-cancer-survivors-association/di scussion/thyca-parents-did-you-screen-your-kids/
Hope that helps.

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My taste started to slowly come back about 2 months after RAI, and fully returned after about 5 or 6 months. I am now 8 months out and there are still certain things that don't taste the same but all my doctors say this is very unusual. I hope yours returns sooner than mine did!

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Re: having children tested- my husband had no known family history of thyca. His TT was last fall with stage two.

Our children are 17 and 21- I asked the same question about should our girls be tested- all the physicians said no. Since this spring my younger daughter has experienced multiple health issues- her thyroid lab work all looked normal. Then when she at the dr for something else, he said he thought he detected a thyroid nodule. Our hearts sank. She has since had ultrasound and FNA. The nodule is 1 cn and the FNA results were inconclusive and a second opinion on the FNA said benign. She is having a follow-up US in December. My other daughter is being checked in a few weeks. I feel like a cloud is hanging over us- especially since my husband has not felt well since his TT.

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No good news from me, sorry. I am 10 months out from RAI #1, had high dose twice) and my taste buds are so different. No spicy food what so ever...mild is killer and I loved spicy food and sour kills me too. Also saliva is still very low. I hope you have a better experience than me!!

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I was wondering the same thing about the taste buds. I just cannot eat because nothing tastes good. This could be a good thing I guess! I'm happy to learn this is normal and will probably get better.

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My taste wasn't back to normal from surgery when I did RAI, so I couldn't say. I did advise my children to get their thyroid tested after I was diagnosed with hypothyroidism and cancer. I had an inherited hyposthyrodism (not hashimotos). My one daughter was diagnosed with it, the other has been in denial that she could have it and didn't do proper testing. When the hasimotos came back negative she declared she was fine. My advise is have the children checked. Even if they do not have cancer, they could have a thyroid problem. Blessings

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I'm about 3 years out from my 208mCi dose and most things taste as they should now. I love hot, spicy foods and tart deserts so I get both and tasting those is not a problem for me these days. It did take a very long time for me to get that back with that large a dose, but it did return! :)

Be Strong and Stay Positive!

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So glad to hear that justgeo1!! I had two 200mCi doses. I hope my taste buds return to normal one day! Even my favorite apples are too tart without peanut butter:-)

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Taste buds will come back. My salivary glands were very painful as well. It took about 3 months for the pain to go away and then came back after my neck dissection. It's finally back to normal. As for being tired, I'm almost a year out from rai and 6 months from last neck dissection. I'm just starting to feel normal again. My doctor looked at me like I'm crazy for being so tired all the time. I'm so happy though, I'm starting to be able to keep up with my kids. Good luck, it will get better.

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Generally - girls can be tested for thyroid hormones (TSH, free T4, free T3) after they get their period for the first time (=reference values for adulthood). Of course US would be good, but I have thought the palpation would be enough for the time being.

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Has anyone had a problem with a fuzzy feeling in your mouth and a white coating on the tongue?

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I've had huge problems with constant dry mouth.

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I have asked a couple of docs about testing family members and while they suggest it may be good there is no evidence for papillary being inherited.
But, since they do not know the cause of thyca and family members have shared genetics and shared environments I think it would be prudent to have them tested. An ultrasound is probably the best option. We all know from experience that blood tests can be unreliable with or without thyroids. I have suggested to my two children and my two siblings that they be tested.

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Could it be thrush? I heard some people do get that.

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It could be. I have a call in to my dr

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