How long after RAI does side effects last?

 I wanted to post a update.  It has been a week and a half since my 155 dose of RAI.  I'm happy to report that my swelling in my neck is now gone and my nausea is also gone.  Although the thought of foods that was stored in the fridge during my isoation still makes me want to hurl, everything else seems okay for me to eat.  I got my period a week early which is not a big deal at all.  I started on one a day 100mcg thyroid medication which seems to be fine.  (Much better than taking 2 a day because I forget to take it on time!).

The only symptoms that I have currently is bitter and sour - almost like salty taste in my mouth that I can't shake off.  It started with tasting metallic but nothing that extreme and now to the salty sour taste in my mouth.  I googled and it seems like it is a common symptoms but does anyone know why or what is causing this sour/salty taste?  It's as if I am overflowing with salty sour saliva.  I don't have dry mouth but the opposite.  When I eat food, I can taste things more salty.  ie:  I used to drink carbonated water but the it tastes very salty to me.  I'm still enjoying food but definately have no desires to add any salt to it.  

I assume like all things this is just another phase and it will go away eventually but was curious if anyone knew what the medical reasons are.

Other than that, so far it's been okay.  I did the scan a few days ago and saw black spots around my neck and nasal area.  I didn't really understand what i was looking or really the point of this scan since I expected the markings to show up.  I will be scheduled to do another scan in 6 months (this time 3 not 155).  Although I guess the hope is that the black spots have all cleared, I would assume with such a smaller dose of radiation, it wouldn't show up black anywhere.  The nuclear med doctor tried to explain to me but I didn't fully understand.  The one test that I figured was important was the cancer marker (globulin test) to make sure it wasn't spiked up where it might mean cancer has spread elsewhere.

If anyone wants to enlighten me with a better explaination, I am all ears :)

Anyone have different symptoms that they discovered later on down the road that I should be expecting?

I have a new side effect from RAI after 2 weeks of begining the RAI.  I have very tender nostrils!  Is this normal?  Has anyone had this and was there anything that can be done?

It feels like the skin inside my nostrils are burning...

Sourness in my mouth is still there.  Trying to massage my neck which seems to bring on more sourness in my mouth.

Thanks in advance.

Hey quincali

I don't know what I could tell you about the tender nostrils situation but I imagine it might have something to do with the sensitivity of the nasal tissue. After all, the RAI, does just that: it burns things.

As for the taste in your mouth, no to worry, that's something that happens often and it's due to an inflamation of the parotid gland. The glad is situated at cheek level, infront of the ear and you might notice some swelling and tenderness in the area.

What happens is, as the glad gets irritated, it produces more saliva and the best way to avoid discomfort as much as possible is to "milk" the gland, massage the area pushing gently towards the mouth. A warm compress and eating something like lemon drops or, my personal favorite, just lemon slices in boiled water, after they've cooled down a bit, will work wonders.

To help with the pain anti-imflammatory ibuprofen or similars are an option and as i mentioned in a previous message, if you preffer more natural remedies, and if they actually work for you, I understand holy basil or tulsi are also a choice.

Best of luck and best of health.

ugh!  I had the nostril thing.  I could not believe how uncomfortable I was.  Apparently the lining of the nose absorbs more of the rai (as do the mucus membranes in the body).  I went on to "grow" huge "pimples" inside the lining of the nostril.  don't be alarmed if this happens.  It is rather painful.  I found some relief (sorry to be gross)  whittling down ice and just putting it in the nostril to help relieve the swelling.  Alternatively, I wadded up paper towels and/or q tips and dipped them in hot water and tried to use that, too.  this continued for quite a while, but was never as bad as the original flare up.  

re: the salivary glands, I would just add that it might help to also gently massage the gland from inside your cheek.  Go really slow with the lemon stuff, but use it when you can.  The rai seems to narrow or block the outlet for the gland which causes swelling of the gland and the duct.  If you eat too much sour stuff too quickly, the gland produces more saliva that doesn't seem able to drain.  So, while it is important to try the lemon stuff to make more saliva to "water down" the rai, go slowly.  Start with a bit and if you're comfortable increase it.  No matter what our docs say, many people have these reactions.  Good luck to you.. and remember, it gets better.  {{{HUGS}}}

Thank shimeron and tink2002.

I just youtubed "lymphatic drainage massage" thinking this might help release the fluid and speed away the sour tasting saliva I am continually producing throughout the day and night.  This is the link (not sure if I'm able to post a link) http://youtu.be/QA-wi0d7-Ro

The link shows a self massage which I started to try a little bit today and I can feel more saliva forming in my mouth so I'll give that a try.

I don't know what I could tell you about the tender nostrils situation but I imagine it might have something to do with the sensitivity of the nasal tissue. After all, the RAI, does just that: it burns things.

The swelling for me around my neck has gone down but I might notice about 5-10% still remaining so hopefully the massage will help get rid of that completely.

I have been sucking on sour candy (sour patch kids and sweet tarts) but it doesn't seem to help for me.  I assume that taking sour candies are supposed to help produce the saliva but I already have plenty of that even without the candy. I will try the lemon tea/ lemon water which sounds refreshing in this heat here in CA.

I am not in any pain (other than the tenderness I feel in my nostrils) but nothing where I feel I need to take ibuprofen.  I'm curently working on trying to regain my energy back (only been back on the meds for 1 week now) and trying to loose the 10lbs I gained in the last 3 weeks. (Sad b/c during my LID I was starving and was eating less than 1000 calories a day!).

tink2002-thankgoodness you had a similar issue with the nostril thing. Surprisingly I didn't find too many complaints like this online.  I remember when I saw the scan last week my nostrils (2 dots) showed black marks - showing radiation there.  Now it makes sense that I have accumulation of the radiation and that is why I feel the burn in my nose.  I guess I didn't blow my nose enough or something?  The pimp thing I don't have yet but it sounds painful! Thank you for the ice tip incase I do get it.

On Apr 05, 2011 6:00 AM MrsCK wrote:

My hubby had his RAI treatment 3 weeks ago. We thought that the side effects would appear quickly, but it seems as if there is a prolonged delay in the side effects appearing and if one goes away, another appears.

The latest complaint, now 3 weeks later, is pain in his ear and below his ear in his salvary glands (well the salvary glands began last week) and a dry mouth.

When will this go away for good?

On Jul 06, 2012 11:15 PM guincali wrote:

 I wanted to post a update.  It has been a week and a half since my 155 dose of RAI.  I'm happy to report that my swelling in my neck is now gone and my nausea is also gone.  Although the thought of foods that was stored in the fridge during my isoation still makes me want to hurl, everything else seems okay for me to eat.  I got my period a week early which is not a big deal at all.  I started on one a day 100mcg thyroid medication which seems to be fine.  (Much better than taking 2 a day because I forget to take it on time!).

The only symptoms that I have currently is bitter and sour - almost like salty taste in my mouth that I can't shake off.  It started with tasting metallic but nothing that extreme and now to the salty sour taste in my mouth.  I googled and it seems like it is a common symptoms but does anyone know why or what is causing this sour/salty taste?  It's as if I am overflowing with salty sour saliva.  I don't have dry mouth but the opposite.  When I eat food, I can taste things more salty.  ie:  I used to drink carbonated water but the it tastes very salty to me.  I'm still enjoying food but definately have no desires to add any salt to it.  

I assume like all things this is just another phase and it will go away eventually but was curious if anyone knew what the medical reasons are.

Other than that, so far it's been okay.  I did the scan a few days ago and saw black spots around my neck and nasal area.  I didn't really understand what i was looking or really the point of this scan since I expected the markings to show up.  I will be scheduled to do another scan in 6 months (this time 3 not 155).  Although I guess the hope is that the black spots have all cleared, I would assume with such a smaller dose of radiation, it wouldn't show up black anywhere.  The nuclear med doctor tried to explain to me but I didn't fully understand.  The one test that I figured was important was the cancer marker (globulin test) to make sure it wasn't spiked up where it might mean cancer has spread elsewhere.

If anyone wants to enlighten me with a better explaination, I am all ears :)

Anyone have different symptoms that they discovered later on down the road that I should be expecting?

Thanks for sharing the symptoms with me.  I wanted to provide a update after almost 4 weeks since starting RAI treatment.  (June 25th).

My sour taste has practically disappeared this week - if I try to taste sourness in my mouth I can still taste it but nothing that is that noticeable anymore.  Week 3 and I am still feeling tired - shortness of breath and not alot of energy. (although I did begin working out this week ie: treadmill for 20 minutes jogging and some light weight workout).

I cannot stop gaining weight.  I am 11lbs (maybe even 15 now??? too depressed to get on the scale this week) heavier in almost 4 weeks!  With approval from my nuclear med doctor, I have increased my meds by 25mcg's so now I am at 125.  I don't feel any different or have any side effects of hyper - shaky hands, faster heart rate.  Nothing yet.  I am really hoping that I can shed off the weight but I just feel heavier and heavier every day.  My clothes are getting tighter damn it!!!!!!  Anyone have this problem?  I am eating about 1000-1400 calories a day.  I'm thinking of going down to 800-1000 a day to try to loose the weight but I just feel puffy everywhere.  My face, legs, stomach, butt, and even my feet!!!!!  I noticed my face getting puffier a few days before I began my RAI (I think that is when my STC jumped up to 65).

Any suggestions on the weight gain would be much appreciated.

My nostril pain is now much better.  I bought tea tree oil from trader joes and wet the end of a Qtip in water and then into the oil and rubbed all around my nostrils.  Next day it was 80% better.  (smelly though!).  I'm still doing that whenever I feel little tenderness in my nose but it is 95% better.

Mrs.CK - I'm sorry about your husbands symptoms, unlike his mine was only delayed by a day.  I felt the symptoms (neck swelling and pain around the ear and neck the 2nd day which was less painful but very uncomfortable due to the swollen neck and difficulty breathing and nausea took over) I never experienced the dry mouth but rather the metallic taste for a few days and then sour taste for a few weeks.  I have heard doing some massaging around the neck, ear (look up lymph node massage via youtube) which helps secrete more saliva and and reduce the pain and swelling.  I am still trying to massage around my neck and throat area.

This is a great site.  I'm learning so many things!  None of which was explained or cautioned by my endo, my surgeon, the two hospital doctors who gave me my thyrogen injections, nor the doctor who gave me my diagnostic dose of RAI 1.0 uci.  But having read some of the comments on this site, I am better prepared for tomorrow's wbs.  Hopefully, they will not see much in the way of black dots...and I will not need the treatment RAI.  But if I do, I will have Halls Vit C lozenges (why not get some Vit C at the same time?), I will massage the area from one earlobe to the other, I will continue the LID diet for at least 3 days after the treatment.  And try to think of my 5-year old daughter for inspiration.

Good Luck!!!!!!!!!!!!!!!!  We are rooting for you!