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Decrease in salivary gland production after RAI....what kind of doc do I see?
I'm in need of some serious help here. After my RAI in January I have since developed a serious problem. At first I lost my sense of taste but it came back. Then a few weeks ago my teeth really started hurting. I went to the dentist and he said that my saliva production had decreased but was still okay. Now, the past few days my mouth is totally dry and my teeth and gums are throbbing. I've researched this and it is apparently a side effect of the RAI. What kind of doctor do I see for this? My endo has dimissed me and says none of it is related to the RAI and referred me to the dentist. Well, all you have to do is GOOGLE salivary gland issues and RAI and it's all right there. My tongue is burning, my throat is hurting now, I'm hoarse and am making no saliva at all. Maybe an ENT?
The thing is....I DID eat the sour candy starting 24 hours after RAI. I ate so much of it I thought I was gonna get caviites. I was also on a steroid because the doc said that it would help with the gum/salivary gland stuff. Funny thing is that now that I"m having problems with it my doc says it has NOTHING to do with the RAI and told me to call the dentist. Whatever. I'm looking for a new doc.
I did take sour candy to the hospital for my stay. Perhaps it is something I will have to continue. Too bad it wasn't chocolate instead of sour candy!!
Hi,
I had issues with my salivary glands and taste buds after my RAI treatment. It took awhile for me to get any taste back and I have noticed that from time to time it changes and the taste changes. What I do periodically is gargle with salt water and i eat a lot of sour candy, still.
What I'm learning is that once you have the RAI treatment, anything goes. Things come out of the woodwork that was never there before.
I get dry mouth and my throat feels like the desert. No matter how much water I drink, it still feels like cottonmouth. I just say "ok" enough before I float away or pop something.
As for as seeing a doctor, I think they all think its in our heads when we tell them these things are happening. Most doctors, I'm learning is strickly by the book. They only focus on whats in the box. They do not see whats outside of the box.
Hang in there. We are here for you and with you.
Terri
I had issues with my salivary glands and taste buds after my RAI treatment. It took awhile for me to get any taste back and I have noticed that from time to time it changes and the taste changes. What I do periodically is gargle with salt water and i eat a lot of sour candy, still.
What I'm learning is that once you have the RAI treatment, anything goes. Things come out of the woodwork that was never there before.
I get dry mouth and my throat feels like the desert. No matter how much water I drink, it still feels like cottonmouth. I just say "ok" enough before I float away or pop something.
As for as seeing a doctor, I think they all think its in our heads when we tell them these things are happening. Most doctors, I'm learning is strickly by the book. They only focus on whats in the box. They do not see whats outside of the box.
Hang in there. We are here for you and with you.
Terri
Saliva helps get rid of bacteria in your mouth, so if you don't have as much, the bacteria grows.
Thought my hypohe// was bad. I'll give you a standing ovation for coming out alive!
I had the same reaction to the RAI, they apparently didn't tell any of your either about sucking on sour candies to help produce saliva and clear out the radiation. I used the Biotene products: mouthwash, toothpaste, and the nasty mouth moisturizing liquid. They really helped a lot.
You know, I hadn't really thought a lot about it, but I have been having a LOT of trouble with dry mouth and my teeth are horrible. Read where the bad teeth are a side affect of the RAI, but I never considered it being from lack of saliva. Hmmm. Think I'm going to have to go back to the Biotene.
I had the same reaction to the RAI, they apparently didn't tell any of your either about sucking on sour candies to help produce saliva and clear out the radiation. I used the Biotene products: mouthwash, toothpaste, and the nasty mouth moisturizing liquid. They really helped a lot.
You know, I hadn't really thought a lot about it, but I have been having a LOT of trouble with dry mouth and my teeth are horrible. Read where the bad teeth are a side affect of the RAI, but I never considered it being from lack of saliva. Hmmm. Think I'm going to have to go back to the Biotene.
I wish I had something that was blocked so that it could be unblocked and I'd feel better. My mouth is like the Sahara right now. I have a feeling my dentist is gonna be seeing me a lot! I can take a lot of things....childbirth.....twice.....two teenagers...but my teeth feeling like this? Not so much. It's just not normal to walk around with a burning tongue, throbbing teeth and awareness of your gums. Just not right.
It was actually 251 but I don't want to brag : )
It was horrible too. There is NOTHING on earth that can feel as bad as that. NOTHING! I was a crying, lethargic, mess with blurred vision. Oh it was great fun. Just soooo much fun. Nobody is ever taking me off my meds again. EVER!
It was horrible too. There is NOTHING on earth that can feel as bad as that. NOTHING! I was a crying, lethargic, mess with blurred vision. Oh it was great fun. Just soooo much fun. Nobody is ever taking me off my meds again. EVER!
I went through the same thing. First loss of taste, which returned in about 1 month. Then 6 months later I had blocked saliva glands. I was producing ,but it wouldn't pass through the ducts, so every time I ate my cheeks swelled for a couple of hours. At first I didn't associate it with the RAI, and my GP thought I had the mumps, because there was an epidemic in our province. When that was ruled out I got on google and found out it could be a side effect of RAI. I no longer have the duct blockage, but I do have less saliva production which makes chewing more difficult.Like you, the specialists didn't really say anything when I mentioned it to them. I now go to the dentist every 4 months instead of every 6, because they said the radiation can effect dental health.
I was confused if the baking soda would be a good idea - I assume because of the sodium bicorbonate it may make more thirst - but............ I rechecked and it may be a solution too.
Thanks Red - I am happy you have a medical doctor suggests this - I had to read for months to trail and error my treatments. - You were lucky :)
Thanks Red - I am happy you have a medical doctor suggests this - I had to read for months to trail and error my treatments. - You were lucky :)
After RAI, i gargled with baking soda and water becaue my teeth felt hairy! It helped tremendously. My dentist (actually hygienist) gave me some samples of stuff that takes care of dry mouth just in case I have to go through RAI again. So it does sound like that is something they have heard of before because she offered it to me when she found out I had RAI. My mouth isn't dry though. The name of the stuff she gave me is called Oral Balance Dry Mouth moisturizing liquid. Their website is www.biotene.com
I toally have been there with this dry burning mouth and tongue thing - I went to ENT's / MD's GP/ GI doc's - my dentist - everything. The most common Dx I got was acid reflex and was put on acid reducers - they didn't help.
You are luck to have your sense of taste and smell back - I still notice mine. It has improved - but I lost alot of it - I do smoke however too.
The burning tongue was unbelievable. I had RAI in 2004 and in 2006 I got the burning tongue that lasted almost the whole year. Nothing helped. I did find - instead of taking Nexuim and others - over the counter Zantac 150 helped - they only thing is I had to figure out when to take it so it didn't effect my thyroid meds.
I'm with you sister......... if I would have know about RAI before-- I would of tried other things. BUT reality is - we did it and now it's permanent. So we need to let our body heal. I don buy the whole "only a year" thing to get back to feeling well - I think everyone is different- I finally got over the burning tongue in 2007 just went away as fast as it came too. I did however put together a theory-- I think the PH balance in our body become out of whack with this RAI stuff. After reading alot about PH balance I really saw alot about me in it.
This sounds gross - but I drank apple cider vinager - about a shot glass full in water through the day. I did feel better. My teeth don't hurt and the dry mouth stuff toally went away - and remember........... I smoke too - so that causes dry mouth alot. My taste returned first - I think it was because I had saliva back in there. then the smell
I look at it -- I hate to pump anymore drugs in me then I have too. I tried ACV b/c it was natural and I was so impressed with the PH stuff. It just fits together.
Just my thought ... I spent thousands of dollars trying to get a medical doctor to help me and was always told - it's nothing or it's acid. - I had to find something to help.
You are luck to have your sense of taste and smell back - I still notice mine. It has improved - but I lost alot of it - I do smoke however too.
The burning tongue was unbelievable. I had RAI in 2004 and in 2006 I got the burning tongue that lasted almost the whole year. Nothing helped. I did find - instead of taking Nexuim and others - over the counter Zantac 150 helped - they only thing is I had to figure out when to take it so it didn't effect my thyroid meds.
I'm with you sister......... if I would have know about RAI before-- I would of tried other things. BUT reality is - we did it and now it's permanent. So we need to let our body heal. I don buy the whole "only a year" thing to get back to feeling well - I think everyone is different- I finally got over the burning tongue in 2007 just went away as fast as it came too. I did however put together a theory-- I think the PH balance in our body become out of whack with this RAI stuff. After reading alot about PH balance I really saw alot about me in it.
This sounds gross - but I drank apple cider vinager - about a shot glass full in water through the day. I did feel better. My teeth don't hurt and the dry mouth stuff toally went away - and remember........... I smoke too - so that causes dry mouth alot. My taste returned first - I think it was because I had saliva back in there. then the smell
I look at it -- I hate to pump anymore drugs in me then I have too. I tried ACV b/c it was natural and I was so impressed with the PH stuff. It just fits together.
Just my thought ... I spent thousands of dollars trying to get a medical doctor to help me and was always told - it's nothing or it's acid. - I had to find something to help.
Did your dentist mention gargling with salt water a couple times a day? Works great for decreasing the swelling in gums and healing anything in the mouth.
Sorry hon. Hang tough.
Sorry hon. Hang tough.
Thanks, it is nice to be able to get on here and vent!
And I have been to my dentist about all of this. He's a saint and has been trying really hard to help me. But, he can only do so much. The other day he actually wanted to call my endo and give him a piece of his mind! I'm now using a nasty toothpaste and mouthwash and...bless his heart...he gave me a muscle relaxer so I could calm down! Guess I'll be calling an ENT on monday so see if there is even anything that can be done. It's not looking very promising though.
And I have been to my dentist about all of this. He's a saint and has been trying really hard to help me. But, he can only do so much. The other day he actually wanted to call my endo and give him a piece of his mind! I'm now using a nasty toothpaste and mouthwash and...bless his heart...he gave me a muscle relaxer so I could calm down! Guess I'll be calling an ENT on monday so see if there is even anything that can be done. It's not looking very promising though.
I know - it can be a real pain but it's so much better than letting the thyroid cancer run wild. I hear you - it's frustrating! I've developed osteoperosis, arthritis, liver problems, weight gain, and ongoing inflammation after my RAI and I might have to do it again this year for another recurrence.
If it helps, we're here for you!
You could also talk to a dentist about your gums and salivary glands.
Hang in there Liz!!!
((HUGS))
If it helps, we're here for you!
You could also talk to a dentist about your gums and salivary glands.
Hang in there Liz!!!
((HUGS))
Oh I plan on finding another endo. I was just trying to get myself stable on my meds first. But that hasn't happened either. My tsh went from 250 to 9 in six weeks. Then 4 weeks later it was an 8. Now I'm doubling up on meds once a week and will get rechecked in a month. I'm so disgusted/upset/scared right now, I cannot believe this is all happening. I really wish I had researched the RAI before I did it. I wish someone would have told me ALL of the side effects. If I knew then what I know now I would never have done it.
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