Salivary gland problems 10 months after RAI for Pap. Thy ca. - please help!

[Reese120]

Hi Everyone~

I had a TT in Novemebr of 2008 for Pap. thy. cancer.  I had 110 mcls of RAI in Jnauary 2009.  This oast August while on vacation my left cheek started to hurt.  I thought nothing of it, within a week both cheeks hurt and I could tell my salivary glands were inflamed on and off.  When I came home my primary doctor put me on antibiotics, I was better for 4 days until I drank a glass of OJ on the 5th day, I swelled up like a chimpmunk!  If I would massage the areas, I would get a salt water taste in my mouth.  Well, 4 months later, I continue to have right cheek/jaw/below ear pain.  Some days worse then others.  I saw the ENT who did my surgery and he he said it was damage to the salivary gland from the RAI.  He told me just to suck on sour candies, ect..  When I do tha, it feels worse.  I can no longer massage it and have fliud release.  I just want to know if anyone else has expierenced this?  If so, did it ever go away, or do you have it forever?  Should I be converned of possibly a salivary gland cancer?  Ever since the thyroid cancer dx, I am so paranoid!  Any help anyone can give me would be greatly appreciated!!!

Thank you so much!

[Catlover67]

http://www.chesterfieldobserver.com/news/2016-06-08/News/Dry_Run.html

This dentist is trying to help people with dry mouth.  

[Totie]

I had RAI about 15yrs ago, and it was not until last year that I started having trouble with the submandibular gland.

I ended up having to have it removed due to chronic sialoadentis. It is very painful. ENT did my surgery but this was after 7 months of trying antiboitics to get rid of the infection. They did find a mass on the gland as well as the two enlarged lymph nodes in that area (i think swelled due to infection).

All pain is gone now...I did eat a lot of pudding, jello, & apple sauce during that time.

[Reese120]

Thank you all for your comments!  It helps a little to know I am not alone!

[Reese120]

Hi Stella~

Where do you buy loderol at and how much to you take?  No one has ever said anything to me about taking iodine!  

Thank you so much for your help!

[Liz94]

So is there an RDA for iodine in people with no thyroid?  I don't believe I've seen iodine at the vitamin store sold by itself.  And I cannot take multi-vitamins because of the iron and calcium and other things. What the heck?  Guess I could head back to my nutritionist that I love at the health food store. She's been tons more helpful to me than my endo.

[stella5349]

Yes - Iodine is very important - they thyroid usually controls the iodine levels through diet and supplementation - but when you do not have the gland - the body requires you to take it in.

You food is no longer the way to get iodine in the measurements you need. There is too much mineral ground depletion and you couldn't wat enough shrimp a day to surfice what you need - and not to mention the lovely mercury levels we have in our waters now.

There are so many things about iodine and you should do some reading on it. What I found for me taking it was

1. the saliva galnd repair

2. the bloating and fluid retention was gone

3. energy and clear thinking was much better/

There is a proper protacol with using iodine. Your doctor most likely will not inform you. Iodine is tougher to talk about than desiccated thryoid meds.

[Liz94]

Stella, so since I have no thyroid gland do I need to be taking Iodine supplements? My doc never mentioned that. Only that I could "have" iodine in food or whatnot and it wouldn't hurt me.  What does iodine do for the body anyway?

[stella5349]

after RAI - because the thyroid is dead - the needed iodine it used to give the body is no longer present. That is why you must supplement with iodine after one loses it's gland function.

[stella5349]

The saliva glands develop a scar tissue persay after RAI in some people. this tissue stops the flow and builds up. This is painful. There is now way to reverse the damage after it is done.

hmmm - the say after RAI that "only" the thyroid is effected with it. That the thyroid takes in over 85% of the RAi and will only kill that gland. That is not true. The whole body utilizes Iodine ( thyroid does most of it through) but where does all the other RAI left over go?

Lump nodes and saliva glands.

[Liz94]

My dentist told me that having issues with your salivary glands and teeth is very common after RAI.  But, he said usually those issues don't start for 5-7 years.  I had RAI 2 years ago and my teeth have been hurting since day 1.  I guess it's only a matter of time before the salivary glands decide to get in on the action.  

[nissah46]

Reese120
Hi there, I had the same problem 6 months after my RAI.  It would happen at mealtime and then take a couple of hours to subside. It was on one side, then the other, sometimes both.  It went on for a couple of months, but now rarely occurs.  I sometimes still get that salty/metallic taste in my mouth.  
Trish

[stella5349]

I have exactly that. It is so painful I know.

The only thing that worked to get me out of the pain and swelling was to start an iodine protacol.

I was almost ready to see a specialist in Ohio that removes damaged saliva glands from RAI and I thought I would try Ioderol. ( potassium iodide/iodine)

It has reduced the swelling of the saliva glands. Mine were as big as Super Large walnuts or bigger than golf balls on each side - to about the size of a piece of candy corn.