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Loss of taste after RAI

austinmama
Posts: 2
Joined: Oct 2009

I had RAI of 100 mCi on 10/28/09. As of last week, I have slowly been losing the ability to taste things. Has anyone else experienced this?

How bad does your lack of taste get? How long did it last?

I can't taste sour things anymore. It's kind of freakin' me out.

emma54
Posts: 59
Joined: Aug 2009

Mine got better. It took awhile and came back slowly. But now it is back to normal.

ibeatcanser
Posts: 47
Joined: Aug 2009

hi,
this is normal. I had my treatment on Oct 5th. At first I could not taste sweet things, then as time progressed I regained that taste but started tasting "salty." Right now I don't taste salty things much. In my experience, everday I gain or lose a different type of taste; in addition my sense of smell increased. If I closed my eyes and ate, I knew what the food item was because I could smell it and recognize the texture. What I found is if I eat anything spicy the next item I eat will have full taste. However, the spicy comes at a price (my throat will get a bit sore).

For me, I ignore it. I like food a lot, but I don't really have much of an appetite right now. At this point I adapted to it. Don't freak out or think about it too much. When I did, I didn't want to eat.

Everyone experiences this 'taste' thing differently.

take care.

ClaudiaCA
Posts: 4
Joined: Nov 2009

When I had my I-131 treatment(May 22,2009), the radio oncologist told me that the odds of me losing my taste buds vs. saliva glands shutting down was 1 to 100. So, I was told to suck on lemons to prevent my saliva glands from drying. But, honestly, I felt no need to do so, so the week at the hospital during my I131 I just continued on the low iodine diet and had lots of water. A week later after my treatment and my stomach feeling back to normal (severe nausea) I notice food was not tasty…so I began to add more salt to everything…then more and more then I realized I had lost my taste buds. Doctor said it would be temporarily and so, in my case it took 6 months. I have to admit it was hard to eat without enjoying what I ate. Seeing others enjoy food or hear them complain when food was spicy was very disturbing. So for a moment I was not so happy with food. But you know, it does get better, it’s been a week now and I am enjoying food once more. On my first day of finally recuperating my taste buds I had a hot dog on a stick and a large lemonade and full KFC meal and a large cinnamon roll all at one meal. Lol….hey it was 6 months that I had to go tasteless with food. Yet, on November 23, 2009 I begin a low iodine diet once more to have a thyrogen stimulant PET/CT so here we go again….Keep you head up and stay strong ….think of those people with aggressive types of cancer that for us it could have been worse and they could only wish to be in our shoe. Good luck to you.

bayougirl64
Posts: 1
Joined: Jul 2012

I just completed my THIRD RAI treatment two weeks ago and we FINALLY got the last of the cancer that was persistent in my neck. Each time I was treated I lost my taste buds and I developed salivary gland stones, which was excruciating! It took about 6 months for my taste to return and probably 2 months until my salivary glands worked properly. Everything taste like paste (like I've been licking envelopes all day) and I get this metal like after taste. It's really nasty, but I'm celebrating regardless because the cancer is gone. You are right, this cancer can be so much more worse for us. We are blessed to have developed the type of cancer with a very slow growth rate and high percentage for treatment and cure. Take care and good luck to you, too!

cm1313
Posts: 2
Joined: Jan 2011

I too lost my taste after receiving 100mCi for thyroid cancer. It was very disturbing. I didn't lose it immediately, but more like 5 days after treatment. I has now been about five weeks after treatment and they are starting to come back. I am tasting salt and some sugar items, but more salt items. It is a relief to finally taste something again. They are slowly getting better everyday. I was told 25% of patients have this. One thing I still have is dry mouth. It is effecting my gums so I went to the dentist as my gums/teeth are very sensitive. My dentist told me this is common for people who have had radiation, so much so that there are special products to help. Biotene mouthwash, Biotene Dry Mouth toothpaste and Oral Balance Dry Mouth Moisturizing Gel. You can get them at most drug stores, if not ask your dentist. Having dry mouth is no fun at all! Another thing that may be of interest is the Low Iodine Diet. Nuclear Medicine pretty much was in shock when I told them all about it and showed them the list of what I could eat (not much) and what I couldn't eat based on my doctor (who now is rethinking the whole diet). Their idea of a LID is no seafood, no iodine supplements, and don't over salt your food. Makes me wonder who came up with the diet and how did it get so strict.

nasher
Posts: 507
Joined: Apr 2010

I had my RAI on 5 May 2010

since then EVERYTHING has tasted extra salty to me and I have a metallic like taste in my mouth

My endo told me in November that it normally doesn’t happen after one dose of RAI.

Yes a lot of food tastes different now and I am getting to the point that I wonder if it will ever go away

My salivary glands are not dead but they got damaged by the RAI so I constantly have dry mouth so I always have a bottle of water or such near me. If I go to a restaurant I normally drink 3-4 glasses of water with a meal. and probably 1 quart+ when I eat at home per meal.

most of the time it comes back within 6 months but it might be permanent.
good luck

ultramichelle
Posts: 8
Joined: Jan 2011

Im 10 days out of 153mc and just for the last 3 days have I noticed a change in taste, but it hasn't been too bad just delayed, I thought it would have happened right away.I do notice textures more, unlike nasher I need more salt and spice. I was never one for that before. Hope it passes quickly for you but am disheartened to see it effects people for months. Let me know how it goes I am right there with you.
Michelle

sunnyaz
Posts: 582
Joined: Oct 2010

Hi All!
Did anyone take Steroids during their RAI? My Radiologist gave me an RX to fill so that I could start taking them on the same day as my RAI and I didn't have any loss of taste, metallic taste or damaged taste buds. I requested them again for my second RAI coming up on the 4th of February and I plan on taking them again. I already have my script filled and ready to go. I sure hope I don't experience this because I LOVE food. It would so suck to have this happen. I am sorry to hear that so many have experienced this.
Julie-SunnyAZ

cm1313
Posts: 2
Joined: Jan 2011

I was not told about Steroids during RAI. Were they specifically given to you to help with the side effects (such as loss of taste, dry mouth etc) of RAI or given to you for another reason?

sunnyaz
Posts: 582
Joined: Oct 2010

My Nuclear Medicine doc prescribed them for me. I took and will take again 8 mg Dexamethasone in the morning and 8 mg in the evening. They are supposed to stop the loss of taste and problems with salivary glands and it worked for me. I didn't have any side effects like that. I did gain weight and felt like a Mack truck hit me though. I think this is normal. I also did the thyrogen injections forty eight and twenty four hours before my treatment so I didn't have to go Hypo. This time around my Nuclear medicine office told me I only had to do one week of the LID. This has made it much more bearable. Not sure who came up with such a strict diet either. I try to not eat iodine but I think some doctors just go overboard.
Julie-SunnyAZ

MoMomsa
Posts: 16
Joined: Feb 2010

Wow, great info Sunnyaz!

I wish I would have known about the steroid thing! I am 4 months out and I still get a metallic taste like nasher mentioned. And I find I do get dry mouth at times and I am liking spicier foods, which my stomach isn't use to! ha

The lemon drops were a great idea mainly to keep the saliva glands producing....and I found this worked well. Sick of lemon drops now but I would do it again if needed.

I also did the thyrogen shots beforehand, if anyone is given the option, take it or suggest it yourself!

sunnyaz
Posts: 582
Joined: Oct 2010

Hi MoMomsa, (reminds me of what my daughter calls me; MammaSama-a term of endearment)

I can't do lemon drops but I like Jolly Ranchers and they make me salivate so that worked best for me. I also used lifesavers. I had the multi-flavored candies so that I didn't get tired of one taste. The lady at the Nuclear Medicine department where I had my first RAI recommended War Heads. REALLY sour! Didn't like that at all.

Had my appointment with the new Nuclear Medicine doctor today and I am all set to go with my treatment on Friday. I am getting 175 mCi's this time. The first was only 83 mCi's. Yikes! I sure hope I don't have to do this again.

The Thyrogen shots are such a blessing and there is no proof that they decrease the effectiveness of the treatment. I just can't afford to go Hypo.

Julie-SunnyAZ

Linda Jo
Posts: 14
Joined: Mar 2011

Hi MoMomsa and Sunnyaz! You both have had the thyrogen shots. I will be starting the prep next month and was given the option of thyrogen injections. It sounds like the best way to go. Only thing is, the nuclear med. dr. says that if my labs and scan indicate a RAI treatment, then I have to do the prep a second time, receiving a total of 4 injections total, including the LID twice. I'm a bit concerned about 4 injections, but was told the thyrogen moves the radioactive iodine faster through the body, doing less damage to the bone marrow and organs. Do either of you have and further info or suggestions on the injections vs. stopping the synthroid?

sunnyaz
Posts: 582
Joined: Oct 2010

I had four injections for my first RAI. The first two were for the scan to determine my initial dosage. Then a week later I had two more injections for the treatment. I just stayed on the LID for about four weeks for that first scan and treatment. I wasn't aware that thyrogen moves the RAI faster through the body resulting in less damage to the bone marrow and organs. I will have to check into this with more research. Thanks for the info. If this is the case, I am very glad I did it.

I couldn't afford to go hypo. I work in the medical field and can't take that much time off of work or risk harm to a patient if I am not thinking clearly. I opted for the thyrogen for both of my treatments. The second treatment I didn't have to do the scan first, just the "mega" does of RAI after recurrence. According to my Nuclear Medicine doctor, the jury is still out on the difference between going hypo and doing the thyrogen. I would do the thyrogen over and over if the choice is given to me. I have heard horrible things about going hypo.

Blessings and best of luck to you,
Julie-SunnyAZ

nonaR
Posts: 4
Joined: Oct 2012

I had my RAI on Thursday the LID was never mentioned to me i didnt change my dit befoer or after RAI,i feel rotten and have no appitate at all,i havent started any thyroid replacement hormones yet either anyone know when these are usually started. i have my scan this Thursday.

thanks
Renee

Baldy's picture
Baldy
Posts: 225
Joined: Mar 2011

Hi Renee,

Did you have a thyroidectomy? if so, total or partial? Or were you hyperthyroidal and had RAI to decrease your thyroid activity?

If you had a thyroidectomy, I would hope they would put you replacement hormones
immeadiately. If you just had the RAI treatment without surgery, I don't know.

I'm guessing the reason you feel lousy is you're now hypothyroidal.

Perhaps he wants you hypothyroidal for the RAI treatment. If that is the case, then I would think once the scan is done you should start on replacement hormones.

But I'm just guessing, you should call your doctor and tell him what's going on.

Alan

emma54
Posts: 59
Joined: Aug 2009

Darn! They did not offer me the steroids three years ago. (I think they must be new.) I can tell my salivary glands were damaged.

djlrad
Posts: 4
Joined: Jan 2011

I have received two RAI treatments, one in April 2009 and the other in Nov.2009. I no longer have the metallic taste that I once had, but certain foods do still taste different. I also have salivary gland damage which results in dry mouth, sensitive teeth and probably more trips to my dentist in the future. I'm guessing my situation could be because my nuclear med doctors, both times, didn't stress the importance, at all, of sucking on lemon drops, etc. after RAI. Also,the low iodine diet helps your body deplete its stores of iodine so that any thyroid tissue remaining will uptake better. Therefore RAI hopefully will not have to be repeated. GEEZZZ...Wish I would have had my present doctor before I had my initial treatment!

disijudy
Posts: 3
Joined: Oct 2012

Oh boy, I'm so glad to have stumbled across this discussion board. I had the treatment 2 1/2 weeks ago. While in the hospital I couldn't stand to drink the water by day 2. Then everything tasted sweet. Now I can't taste much besides vinegar (in cole slaw) and lemon (in tea). I just spit out a piece of cheese with no flavor at all - it was like eating wax. I realized the other night after a couple handfuls of popcorn, that I'm not tasting salt at all. Hope this passes.... soon.

amorriso
Posts: 186
Joined: Oct 2010

I've had two rounds of RAI and both times lost my sense of taste. Most things tasted like cardboard. It came back slowly after round one,but it didnt fully return after round two. Some things - like potato chips and popcorn still taste bland - I've learned to compensate by using extra spices etc. I have to remember that when cooking for others - I sometimes get people to do a taste test just in case I've gone a bit overboard !

Its weird - its mainly carbohydrates that dont taste quite the same.

Keep trying different foods and add lots of spice - hopefully it will get back to normal soon!

cheers

disijudy
Posts: 3
Joined: Oct 2012

Oh boy, I'm so glad to have stumbled across this discussion board. I had the treatment 2 1/2 weeks ago. While in the hospital I couldn't stand to drink the water by day 2. Then everything tasted sweet. Now I can't taste much besides vinegar (in cole slaw) and lemon (in tea). I just spit out a piece of cheese with no flavor at all - it was like eating wax. I realized the other night after a couple handfuls of popcorn, that I'm not tasting salt at all. Hope this passes.... soon.

I wonder if there's any other goofy stuff I can expect.

disijudy
Posts: 3
Joined: Oct 2012

Oh boy, I'm so glad to have stumbled across this discussion board. I had the treatment 2 1/2 weeks ago. While in the hospital I couldn't stand to drink the water by day 2. Then everything tasted sweet. Now I can't taste much besides vinegar (in cole slaw) and lemon (in tea). I just spit out a piece of cheese with no flavor at all - it was like eating wax. I realized the other night after a couple handfuls of popcorn, that I'm not tasting salt at all. Hope this passes.... soon.

I wonder if there's any other goofy stuff I can expect.

djlrad
Posts: 4
Joined: Jan 2011

I have received two RAI treatments, one in April 2009 and the other in Nov.2009. I no longer have the metallic taste that I once had, but certain foods do still taste different. I also have salivary gland damage which results in dry mouth, sensitive teeth and probably more trips to my dentist in the future. I'm guessing my situation could be because my nuclear med doctors, both times, didn't stress the importance, at all, of sucking on lemon drops, etc. after RAI. Also,the low iodine diet helps your body deplete its stores of iodine so that any thyroid tissue remaining will uptake better. Therefore RAI hopefully will not have to be repeated. GEEZZZ...Wish I would have had my present doctor before I had my initial treatment!

MoMomsa
Posts: 16
Joined: Feb 2010

Hey SunnyAZ,

Best of healing wishes with your RAI treatment. Hope it blast that cancer right outta ya. The first time wasn't any fun, but doing it a second time really has to suck!

MoMomsa-(And my son calls me 'Momsa'(an endearment as well! Since I'm from Missouri, I'm a MoMomsa! :)

And yes, the lemon drops got old, if I have to do it again, I'm thinking jolly ranchers for me.

I was also reading the post from djlrad about making more trips to the dentist in the future, I have also noticed my teeth and gums are more sensitive.....Hm...thanks for a heads up on that one. And yes I still get dry mouth at times...sort of weird, I'll be fine then a couple days of dry mouth....Ok well....I won't complain! (too much! ha)

sunnyaz
Posts: 582
Joined: Oct 2010

Hi MoMomsa!

Thanks for the best wishes. It does suck but I am getting used to surgeries, and now the treatments. Kinda sad huh? It's the only way I can get time off of work.

I LOVE Missouri! I plan to buy a lake home when I retire to spend the summer's at the Lake of the Ozarks. I just emailed my Aunt about the terrible snow storm they are having right now. She is in Warsaw. I have family all over Missouri from Kansas City to St. Louis. That is where my mom's side of the family is from.

I have let my teeth cleanings go due to the cancer issues. I really need to get an appointment to see my dentist. Lucky for me I have really strong teeth.

I have always sort of had dry mouth so I always keep something to drink with me. I had to switch recently however, due to my weight gain and the knowledge that sugar feeds cancer, I switched from soda to iced tea. My other addiction is Iced coffee (Dunkin' Donuts French Vanilla) with French vanilla creamer (lots of it). The LID doesn't allow for creamer so I have been a bit pissy without it. Can't drink it black, yuck! The good news though is that I have lost thirteen pounds of the weight I gained when I was Hypo in 2009 before the cancer diagnosis. I went from 135 to 185 in less than nine months. It feels like I am in someone else's body. My husband and I started on a fitness program and we are feeling much better. We are in our early forties and starting to feel much older than our age. Decided it was time to get serious about our health before it gets out of control.

Take care and God Bless,
Julie-SunnyAZ

MoMomsa
Posts: 16
Joined: Feb 2010

Hi Sunny,

AS I read your post how sugar feeds cancer,I stopped with my hand half way to my mouth. I'm eating M&M's. Yikes! I don't believe I was aware of that fact. Man....that's a bummer.Really? After the LID I realized how much I really enjoy food. Guess I better get back to eating better/healthier. And I do need to lose some weight.
Good job on losing the weight, I'm starting back next week. I use to work out 3-4 times a week and was really good about it. Eliptical and free weights. After the thyroid cancer I got kind of tired.....and lazy too. Lost 8 pounds during the LID. I guess I like dairy and junk foods!
So, I decided this year I would "get back to it"....thanks for the reminder.

Just wanted to wish you all the best tomorrow....I think that's your big day?
I'll send healing energy your way!

Oh and Lake of the Ozark is really a fun place, except when it gets really crowded on the water. However, then you just go shopping! I live closer to St. Louis. We missed the big snow and got 3 inches of sleet instead, but my son who is in college a couple hours away got almost 20 inches! It's crazy! ha

Take care and blessings,
Momomsa

MoMomsa
Posts: 16
Joined: Feb 2010

Hi Sunny,

AS I read your post how sugar feeds cancer,I stopped with my hand half way to my mouth. I'm eating M&M's. Yikes! I don't believe I was aware of that fact. Man....that's a bummer.Really? After the LID I realized how much I really enjoy food. Guess I better get back to eating better/healthier. And I do need to lose some weight.
Good job on losing the weight, I'm starting back next week. I use to work out 3-4 times a week and was really good about it. Eliptical and free weights. After the thyroid cancer I got kind of tired.....and lazy too. Lost 8 pounds during the LID. I guess I like dairy and junk foods!
So, I decided this year I would "get back to it"....thanks for the reminder.

Just wanted to wish you all the best tomorrow....I think that's your big day?
I'll send healing energy your way!

Oh and Lake of the Ozark is really a fun place, except when it gets really crowded on the water. However, then you just go shopping! I live closer to St. Louis. We missed the big snow and got 3 inches of sleet instead, but my son who is in college a couple hours away got almost 20 inches! It's crazy! ha

Take care and blessings,
Momomsa

sunnyaz
Posts: 582
Joined: Oct 2010

Mmmmmmm, M&M's are the best. I like the peanut ones the best but I am a peanut freak. I even put salted peanuts in my Coke. I put them on my ice cream with chocolate fudge sauce and I love frozen bananas with peanut butter. I found a no salt, all natural peanut butter at my grocery store and well now I am having to take a lot of Metamucil to make up for the fact that bananas are very constipating.

I did have to give up a lot of my favorite stuff to get some of this weight off. I actually have 37 more pounds to loose to be where I was before the cancer took over. I am doing the treadmill for one hour three to four times a week and on the other days I am doing a half hour of Kick boxing. It usually Kicks my butt more than the hour on the treadmill. I will be doing the Relay for Life to raise money for The American Cancer Society on April 2nd here in my town. Must be in shape for that! I will get a purple T-shirt (signifying that I am a cancer survivor) and I will get to take the first lap with other cancer survivors, if there are any. I might end up taking that lap alone and getting all the glory, haha.

It is exceptionally cold in Tucson right now. We had a high of 36 today and a low of 18. That is a real cold spell for us. We just aren't prepared for this kind of cold. Pipes froze and broke all over town and so did some of the gas lines leaving some people without heat, hot water and water. Hope you are all fairing well.

Yes, tomorrow is the big day! So glad to get it over with and have some time off of work. I am going to do some serious sleeping, drinking fluids and working out to sweat the RAI out. Thanks for your well wishes.

Take care and God Bless,
Julie

sunnyaz
Posts: 582
Joined: Oct 2010

I am eating my words and they aren't very tasty. This morning I woke up after 187.3 mCi's of RAI yesterday and my salivary glands were in pain and swollen. My new Nuclear Medicine doctor told me not to take the steroids until 48 hours after the treatment and so I didn't take it last night after dinner. I really wish I had. I decided not to wait the 48 hours as he instructed me and I took the steroids with my breakfast this morning. I took them right away after my first treatment and it didn't harm anything. I am sucking on hard candies, drinking a lot of green tea and salivating like a mad dog. Most of the pain and swelling has gone away but I am not sure it that is because I also took Ibuprofen. I guess I will have to see what happens tomorrow morning.
Julie-SunnyAZ

cfeline5
Posts: 2
Joined: Mar 2011

i have had two RAI treatmnets and noticed the loss of taste both times..after the fiorst treatment taste slowly returned over 6 month period..but after 2nd one nothing has ever went back to normal..hate to eat because it is so disappointing

nasher
Posts: 507
Joined: Apr 2010

Figure out what spices bring the flavor to you and start useing them

myself I have shifted the spices I use on foods to my new unbalanced tastes... so when I make dinner I make it unspiced and spice a part for everyone else one way and for my serving I spice a diffrent way

it works it just takes time and a large spice rack

BlairStarr
Posts: 1
Joined: Jul 2012

Gahhhhhhh! I just did the I-131 15 days ago and I thought I was losing my mind. I feel like I can't taste ANYTHING and constantly have a VERY strong metallic taste in my mouth. This is so uncomfortable and I can't stop salivating. I feel like Pavlov's dogs!. I wish I would have known about this before hand. Talk about a miserable experience. It's better than having cancer but YIKES I was totally unprepared for how uncomfortable this is.

Hannah1
Posts: 62
Joined: Jun 2012

I also just finished I131 3weeks ago and I still don't taste food especially salt and sweets.
This is my 2nd time of RAI with 200mci. The first one my taste came back after a month.
This is normal but it will come back. Have patience and good luck.

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