Loss of taste after RAI
Comments
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food doesn't taste gooddjlrad said:loss of taste
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!
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 disappointing0 -
Linda JoLinda Jo said:Thyrogen injections vs. synthroid withdrawal
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?
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-SunnyAZ0 -
Spices are your friendcfeline5 said:food doesn't taste good
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
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 rack0 -
Loss of tastesunnyaz said:Loss of Taste
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
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.0 -
Loss of taste/metallic tastenasher said:Spices are your friend
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
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.0 -
Loss of tasteBlairStarr said:Loss of taste/metallic taste
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.
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.0 -
Loss taste after RAI treatmentClaudiaCA said:taste buds
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.
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!0 -
Loss of tastedjlrad said:loss of taste
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!
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.0 -
Loss of tastedjlrad said:loss of taste
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!
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.0 -
Loss of tastedjlrad said:loss of taste
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!
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.0 -
loss of tastedisijudy said:Loss of taste
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'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!
cheers0 -
LIDsunnyaz said:Steroids
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
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
Renee0 -
Hi Renee,nonaR said:LID
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
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.
Alan0 -
Try Natural Yogurt with Live Cultures
My ENT suggested swishing natural yogurt with live cultures in my mouth like mouthwash and then spitting it in the sink. After 24 hours I got partial taste back, yayyy!!! I plan to continue and see if it gets any better, no one knows how draining it is to eat when you cannot taste a thing except you guys! Thanks for the support!!
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Loss of Taste
My husband had his first RAI treatment 2 1/2 weeks ago. His loss of taste seems to be worse this week. Everything has a metallic taste and he is having a hard time wanting to eat anyting because it taste so bad. He also has a feeling on his tongue like it is burnt from drinking hot coffee except it doesnt go away. He also got sores in his nose that are very painful. We were defintely not expecting this. Any suggestions on a way to help cope with the metallic taste? Should he still be sucking on the hard candy? I would appreciate any suggestions. Thank you !!
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That danged metal taste
I just had RA on Dec. 13, and by Christmas couldn't taste much more than a chronic metal taste. This is dissipating, but slowly. Bitter stuff seems to be pretty palatable ... so there's prolly way too much pilsner style beer in my diet lately! I'm not sure if I'd gone for steroids if my doc suggested them - that option was never offered. I did take steroids once for a crazy allergic skin reaction, but just quit them when I ran out - a big no no for steroid withdrawal. Worst drug withdrawal ever.
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Questionjsmjrich said:Try Natural Yogurt with Live Cultures
My ENT suggested swishing natural yogurt with live cultures in my mouth like mouthwash and then spitting it in the sink. After 24 hours I got partial taste back, yayyy!!! I plan to continue and see if it gets any better, no one knows how draining it is to eat when you cannot taste a thing except you guys! Thanks for the support!!
Was wondering what yogurt you used as I have little to no taste when I eat as well I was going to go by the yogurt and try that I also seem to have a sweet aftertaste after I eat and throughout the rest of my day any thoughts on that or did this happen to you?
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I had RAI September 15th. I had 3 previous cancer surgeries and this is October 4th and I still cannot taste anything and my tongue feels burned and raw even though it looks normal. I've been living on freezer pops since the cold feels good on my tongue.
I sure look forward to the day my taste buds wake up. I've discovered that eating is not really pleasurable without taste.
Leigh Ann
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