saliva glands after RAI

[morehead]

My glands are sore and swollen. Does it ever get better....

[Hay2016]

Yes it does!! I had hard painful glands after RAI. I was told to suck some sourz, gets saliva moving and they stopped being sore after a few days.

All the best.

[morehead in reply to Hay2016]

How long after RAI did they hurt.

[morehead in reply to morehead]

My surgery was in September 18 and they started swelling this past Saturday.

[Hay2016 in reply to morehead]

Mine were within days. I’d speak to GP/cons sec. Could be normal infection reaction but quite long after for RAI effects worth checking though.

[morehead in reply to Hay2016]

I hope it is a reaction that goes away.

[pennyannie in reply to morehead]

Hey there morehead,

As well as seeking out medical advise, it might help if you can keep moving your jaw, either buy chewing gum or just keep exercising it - opening jaw wide, down and around. I also found massage of the saliva glands most beneficial.

[morehead in reply to pennyannie]

Thank you. I have do a lot of massage. It helps the salt taste is getting stronger too.

[pennyannie in reply to morehead]

OK keep drinking water to flush out any remnants of the RAI - you can't overdo this - it might reduce the salty taste - I remember this, it woke me up in the night and I thought I was going to be sick, but I just stayed calm and swallowed down this substance.This happened twice, in the night, some 8-9 years after drinking the radioactive iodine. I 've only recently joined up the dots as to what happened to me.

Keep drinking water and then drink some more.

Have you contacted the hospital - the endo - is it worth a trip to A & E - ?

They must have seen this sort of thing before - it needs sorting - what were you told to expect before having this treatment.

I know I wasn't told anything but I'm going back 15 odd years and would hope things might have changed.

[morehead in reply to pennyannie]

They did tell me to expect anything. Just suck on lemon drops so my salivary glands would be okay. I can't get into the doctors office yet. The swelling is going down this dry mouth is something else... I have a hard time drinking a lot of water but I am going to try to drink more. Did you have teeth problems?

[morehead in reply to morehead]

they did not...

[pennyannie in reply to morehead]

As previous explained my issues started years after drinking the RAI -

My doctor was no help, my dentist suggested Sjogrens, and my doctor reluctantly referred me to rheumatology.

My lip biopsy was negative but within the blood tests undertaken at the hospital I was advised of a low ferritin level - 22.

I was then referred to gastro for endoscopy and colonoscopy -

( having had both these procedures prior to drinking RAI without any real issues) :

I explained to the consultant that I now had a very dry burning mouth and that I wasn't sure I would be able to swallow the scope.

Looking back - I was ignored by the consultant - he showed no concern -

The endoscopy was aborted as I couldn't swallow to the instructions shouted at me.

The trolley was swung around and the scope put into my anus, where upon I had the same sensation as that as in my mouth.

I collapsed with the pain and woke up with a saline drip in one arm and a heart monitor attached to the other.

I was instructed to turn this way and that until the endoscopy was completed.

I was booked in for a barium meal, but on reading what that entailed I cancelled.

The colonoscopy showed no cancer -

No one had any answers as to what had happened or was happening to me.

I came home feeling totally violated amongst other things -- -----

I have researched and keep ending up on the McMillan cancer aftercare page.

It is also acknowledged that for Graves patients, after RAI, symptoms similar to Sjogrens can occur.

It is now 3 years on, and I have had to have several teeth extracted as with no saliva

there is no way you can keep your dental health optimum.

Saliva contains a pain relief that is 6 times stronger than morphine.

I believe the whole of my digestive tract has been damaged by the RAI.

I'm sorry to write this, this is just my story, I have joined up my own dots, and I could have it all totally wrong.

My saliva is almost back to normal - I have been able to hold a denture in place in my bottom front jaw and the burn is almost gone. I am cooking from scratch but only feel able to eat bland foods. I am taking supplements as recommended on here, and am self medicating with NDT.

[morehead in reply to pennyannie]

Wow. I can't believe all the problems. I am so sorry. I worry about my teeth. I will get implants if I can.

[pennyannie in reply to morehead]

We are all different, the above was an honest answer to your question to me.

You are not likely to go through anything like I did, our situations are very different.

My symptoms arising some 8 years after treatment - this hasn't happened to you.

You are post medical treatment some 4 months - it's not the same, is it.

I think in the first instance you should go to A & E or get an appointment to see your consultant immediately.

They have a duty of care to you - you are post treatment just a few months -

they have the knowledge and expertise in this area of after treatment and

will be better equipped than either you or I to guess at what's going on.

Take care and go back the hospital and ask for help from those in the know.

[morehead in reply to pennyannie]

I have horrible doctors. I need to get a different one.

[pennyannie in reply to morehead]

At this point in time you need to go to A & E - you are post operation from thyroid surgery - you need medical help. The hospital will help you and will be able to access your hospital records and contact directly one the team who operated on you. This is the most sensible thing for you to do now.

There is little point going to your doctor - and there's no point looking for another doctor at this point in time, wait until you are stronger.

Please go to the hospital A & E and get the help you need and deserve.

[morehead in reply to pennyannie]

A&E??

[Valarian in reply to morehead]

Accident & Emergency or ER

[pennyannie in reply to Valarian]

Thank you for the translation.