Salivary Gland

[morehead]

Is there any treatment for my salivary glands they must be damaged from RAI after surgery?

[Nanaedake]

How long ago did you have RAI? If possible you need to speak to your consultant, they might refer you to a specialist, or you could discuss with your GP who could seek advice. I'm sorry you're having problems.

[SilverAvocado]

It was implied to me there isn't any treatment. Mine are a bit damaged and I struggle to keep my mouth from drying, especially at night.

All the synthetic saliva things I've tried have been no better than sucking a sweet, which I did LOADS shortly after my RAI. But I have heard recommendations on the forum with people claiming they've found one that does work. Unfortunately I don't know the name of it

I've also recently been experimenting with mouth taping at night. This is suppposed to have a few different health benefits, but the reason I'm interested is I go thru phases where my mouth opens while I'm asleep, and the drying is excruciating. Something to consider of you're mouth is opening and that's worsening the problem. Literally you buy thick medical tape or these gel stickers to tape over the mouth.

[SilverAvocado in reply to SilverAvocado]

Just looked thru your past posts and seen that you had your surgery in September and are struggling.

I also had follicular cancer, we are a little rarer my TT was in 2013. I know September can feel a long time ago, but really it's nothing in recovery terms. You're right in the middle of the chaos right now, and all you've got to do is cling on by your fingertips, and take it one day at a time.

I was in bed almost all day at this point. Make sure you've got TV there and anything you need to keep amused and comfortable. Just be really really kind to yourself and settle in to wait.

My consultant eventually admitted to me that most people take at least a year to get through it. I was still really ill at that point, and probably till 18 months. It was actually 8 months from my first surgery to when I had the final all clear RAI scan.

[morehead in reply to SilverAvocado]

Not good news, but a relief that I will get better .

[SilverAvocado in reply to morehead]

Just remembered your main question was about damage to salivary glands. That's definitely one that is worse straight after RAI and recovers to some extent.

I now do have damage to my glands that's noticeable, but I'm lucky and its pretty minor. I'd call it a really minor inconvenience. Of course you may be more unlucky than me, but don't panic too much until you're a year or two in and things have settled down.

[morehead in reply to SilverAvocado]

I have a very salty taste in my mouth. The worst is when I have my favorite morning coffee. It is salty. Does this ever go away?

[SilverAvocado in reply to morehead]

I used to get that. Also a lot of my sense of taste changed. I stopped liking chocolate! Its completely gone for me, now.

To me coffee sounds like something that would be quite drying. I went off tea and coffee at the time, and preferred things that made my mouth feel more fresh.

[SilverAvocado in reply to morehead]

Having cancer is a serious business, and the treatment process is a really shitty experience. Although they talk as if thyroid is not too bad a cancer because it's not very deadly, many things about it are actually more horrible than others, because we have to go through the process of getting settled on thyroid replacement. I was very hypo during pretty much my whole treatment year as a result, and if you feel terrible its likely you're on completely the wrong dose, too. They just leave us to languish with the fatigue during treatment

Edit: Being hypothyroid also leaves you quite dry. I've had very dry eyes as well, which I think is being undermedicated more than it is the radiation.

If you're up to it or have a friend of partner who can accompany you, kick up a stink about being left hypo during treatment! I didn't understand enough to complain about it myself.

[morehead in reply to SilverAvocado]

I am on synthroid 88 now. Waiting on my last blood test to see what happens. I thought I was going to die waiting on treatment.

[SilverAvocado in reply to morehead]

If you get a thyroid panel blood test make sure you get a copy, and if I were you I'd make a new post to ask for advice about them. I had to learn to read my own blood tests as double check all the doctor's work - they don't know much about how we cope without a thyroid.

88mcg is a pretty low dose if you had a total thyroidectomy, which I guess you did having RAI. More like 100-150 is the lowest I'd expect, and maybe as high as 200+. Of course everyone's different, so it might be right for you.

[morehead in reply to SilverAvocado]

106.6mci was mine. My jaw is swollen this morning.

[SilverAvocado in reply to morehead]

Take care of yourself. x

[Christabel]

There's a new (to me) toothpaste and dry mouth gel called Orialeve. I haven't tried either yet, but they sent me a sample. Might help a bit.