[miyogirl]

#1060195

Hi,
I haven’t been on the boards in years, but have a new ‘issue’ that maybe you all might have some insight on.

I had tongue surgery last winter for an issue not related at all to my Graves. (surgery to resolve a tongue injury) Since then my tongue has felt strange. Dry, sensitive, burning, fuzzy.
I have had 5 different opinions from ENTS, Primary, Dentist, Oral Surgeon, etc. Everyone says how healthy my tongue looks etc.
Latest ENT suggested that post surgery I am more aware of how my mouth feels, and it also seems 2 of my salivary glands are not producing a huge amount of saliva. This lack of saliva may have made my tongue feel more different since my surgery. She ‘milked’ all of my salivary glands and did a check up.

She said salivary gland scarring is a side effect of RAI and can show effects at any time after RAI. Could it be possible that I am feeling the effects of this so long after RAI? (13 years)

What are the symptoms? I was told to chew sugarless gum or suck on a hard candy when I feel symptoms and also overhydrate. I noticed when i do this my symptoms do subside. Otherwise, my tongue stings/burns and i run out of saliva if i talk a lot, or read the kids a long bedtime story. I find myself rubbing my tongue on the roof of my mouth because it feels strange which is probably making the burning sensation worse.

I had NO IDEA until this that salivary gland and tear ducts could be affected long term. This may also be why the day after I cry i experience such pain in my eyes for a day or two.

I had TED for years during my hyper stage, but it subsided after RAI and I have been pretty much euthyroid and generally feeling OK (aside from periods of fatigue and hair loss) over the years. It seems to me that they have found more side effects from RAI than I knew about back when I did it. Back when i did it, it was a “safe procedure” and I never heard of many side effects. Now when i do a search on well known medical sites, it seems there is now a list of possible short and long term side effects, so it has been interesting to re-visit my experiences with RAI and the years after.

Any similar experiences would be so helpful.
Thank you!

[Kimberly]

#1181182

Hello – Hopefully, you will get some other responses here, but I believe this complication is much more likely following the larger doses of RAI that are given to thyroid cancer patients, as opposed to the smaller doses that Graves’ patients receive. This piece from ThyCa: Thyroid Cancer Survivor’s Association talks about complications occurring months after RAI, but I’m not familiar with this occurring so many years later.

(Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

http://www.thyca.org/pap-fol/radiation/salivary/

[miyogirl]

#1181183

Thanks for the reply. Yeah i don’t see much mention online about salivary gland and duct damage from Graves’ RAI, but Mary Shomon does cover the potential for temporary or permanent salivary gland damage after RAI in her book “Living Well with Graves’ Disease and Hyperthyroidism” on page 340. My doctor also said she has seen it in other patients as well.

I plan on speaking to my Endocrinologist about it. So far have spoken to ENT who did some tests and noticed my parotid gland were not supplying a lot of saliva, resulting in my dry mouth.

One step at a time.
Thanks so much for your response.

[Stymie]

#1181184

Hi miyogirl!

I too had issues with my salivary glands after RAI. I talked with my endo and she says yes it can happen (damage) after RAI. I wish there were more reports of it on the internet and web so that people like you and I could be more informed.

But anyway keep water with you at all times. Sugar free gums and candy and excellent oral hygiene. We are more prone to get tooth decay now.

Hope this helps you.

Diane

[miyogirl]

#1181185

Thank you so much for the reply. I was beginning to feel a little crazy just not knowing why my tongue felt like this. When the doc suggested dry mouth and sugar free gum would help I was astonished that when I was especially dry or my tongue was especially irritated if I pop in a piece of gum my saliva flow increases and my tongue instantly feels much better. I couldn’t even tell it was dry mouth I was experiencing but when I described all my symptoms it seems I was kind of typical in my symptoms. I am so sorry you are going through this as well and thanks for taking the time to write.

M.

[miyogirl]

#1181187

Hi, thanks for your reply. I have checked with the dentist and an oral surgeon and both had no suggestions other than my teeth and gums and tongue look healthy. Did you think it might be a complication with an existing root canal or that i might need a root canal? I have never had a root canal, but my teeth are healthy as far as i know.

Thanks for your reply and help with this situation.

[Kimberly]

#1181186

@miyogirl – Sorry, I actually believe the previous comment was from a blog commenting service (basically SPAMMERS masquerading as legitimate posters). I have deleted it. I would contact your own dentist for further guidance on this issue.

[Kimberly]

#1181188

FYI, here is some additional info on blog commenting services:

(Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

http://gdatf.org/forum/topic/42255/?page=1#post-117401

[miyogirl]

#1181189

Thanks. And my endo also said she hasn’t really seen Graves patients with salivary damage, just cancer RAI patients…. so the quest continues to find the cause……. Thanks for the info!!!!

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