Rai Side Effects

Need a little info please...

I had a TT on 6/1/07, RAI (100) on 7/13/07, Synthroid (125) on 7/26/07.   I'm having side effects and wondered how long I can expect them to last.  I have pretty much no sense of taste at all, funny feeling in my salivary glands and today I noticed my face is getting dry.  Can someone give me any advice or is this all pretty normal?  I felt so awesome after surgery but getting ready for the RAI and then the after affects of it is no fun at all!

On 7/25/2007 ShelbySCS wrote:

Need a little info please...

I had a TT on 6/1/07, RAI (100) on 7/13/07, Synthroid (125) on 7/26/07.   I'm having side effects and wondered how long I can expect them to last.  I have pretty much no sense of taste at all, funny feeling in my salivary glands and today I noticed my face is getting dry.  Can someone give me any advice or is this all pretty normal?  I felt so awesome after surgery but getting ready for the RAI and then the after affects of it is no fun at all!

 

I had TT on 4/3/07, RAI (150) on 6/27/07, Synthroid and a short course of Cytomel starting 6/30/07.  Its now been 3+ weeks on Synthroid and most of the side effects of being hypo are gone although my energy level is still only about 75% of normal.  I have very little sense of taste and a tender salivary gland on one side.  Being hypo was awful.  I had severe stomach upset on top of the rest of "the list" of symptoms.   RAI really didn't add anything to the "hypo" misery I was already in so I'd have to say it was a rather minor part of the whole experience.  The loss of taste didn't show up until about a week or so after RAI and its now been about 2 weeks or so since it showed up.   This side effect of RAI doesn't seem to be that prevalent, or at least I haven't seen much said about it on this board, but all the official info does mention it as being a temporary thing.....of course, "temporary" is a relative term!  If there is anyone out there having experienced this side effect, I'd like to hear from you.   At this point I'm just considering it a summer weight loss progarm   :O)

For what it's worth:

My TT was on 5/25;  RAI(200) on 7/9.  I wasn't warned about any side effects by my docs.  I pretty much lost my sense of taste5 or 6 days after RAI.  It hasn't improved much in the10 days since.  I also noticed a return of "discomfort" in my neck, much like the pain I had post surgery, but unlike the "taste" problem, this appeared early and is diminishing. 

I was really concerned until I searched this board for the symptoms I was having, and learned that they were not that uncommon, and generally temporary. 

This board is a great resource.  And personally, after 4 weeks LID followed by 4 days of enjoying eating (hospital food at that!),  I can't wait to taste an oyster po-boy (or fried shrimp or broiled snapper or stuffed flounder or boiled crabs or fried mullet or crawfish bisque or.............again!)

Hang in there.  I have it on good authority that it does get better!

 David

On 7/26/2007 Saleslady wrote:

Hi, I had the RAI treatment the last of May, and am just getting over the loss of taste.  Some food just had no taste to me, regardless what I put on it, and other food was fine.  Would eat and than after would feel like it tasted bad.  But it does it better.  I have had two throid surgeries and the RIA treatment and am on the road to recovery.  There is light at the end of the tunnel.........Good Luck.

Thanks for your response.  No sign of my taste buds waking up yet, but the response to my email request all give me positive hope.  I'd hate to think that lack of taste would lead to a loss of weight....geesh, I might actually end up thin!  :O)

Hi I saw this article in the compass newsletter, it may explain a  bit about the dry nouth after radiation. See an excerpt below:

 Radiation beams kill tumors, but sometimes at the cost of damaging surrounding healthy tissue. So precision is the key. The Hospital of Saint Raphael, Bridgeport Hospital and other cancer centers in Connecticut are turning to a technology called "intensity-modulated radiation therapy," or IMRT, to target clusters of cancer cells without hitting nearly normal cells. Dr. Joseph Cardinale, radiation oncologist and medical director of St. Raphael's McGivney Cancer Center, said accuracy is crucial. The prostate, pancreas, head and neck, and many other sites where cancer strikes are in close proximity to other essential organs, he said. Before IMRT, radiation to eradicate tumors in the neck often damaged salivary glands, leaving patients with dry mouths and the accompanying complications of that condition, he said. IMRT works by splitting radiation into smaller beams shaped by an aperture created from hundreds of moveable metal leaves. Each beam is weaker, but all intersect on the tumor, depositing a lethal level of energy, Cardinale said. The computer-controlled multi-leaf collimator also can open and close while delivering radiation, allowing the beam to "curve" around untargeted tissues. St. Raphael's is now incorporating an image guided radiation therapy (IGRT) unit in its IMRT set-up, Cardinale said. "We need to know exactly where the target is," he said. Before the advent of more sophisticated equipment, oncologists could only image bones and then record the distance from bone to tumor. The inaccuracy inherent in this system is aggravated by movement of organs. Prostates and other organs shift slightly from day to day, Cardinale said. If these continual motions are not taken into account, radiation can miss its target completely.
C!

I had TT 6/13 and RAI 100 7/30. I am so glad I found this board. I thought I was going crazy. Now I know it's just from the treatment and lack of thyroid hormone. My blood pressure has gone nuts, my electolytes are out of whack from all of the water I drank after the RAI, and I feel like total hell. That being said, I am so thankful the hard part is behind me. I started on Synthroid .175 this morning and saw my GP regarding the other stuff. I didn't realize that reflux might be a symptom of being seriously hypo but, I do know the LID aggravated it with all the healthy foods I was eating...argh!

I am now loaded up with the appropriate meds to cure all that ails me and am looking forward to getting my energy back. I had planned on going back to work two days after my RAI but, I am just too tired to do anything but sleep. I am going to take the rest of the week off and just rest before returning to work. My kids are staying with my parents for the week just to be safe. Best Wishes to All!

On 7/25/2007 Susan52 wrote:

 

On 7/25/2007 ShelbySCS wrote:

Need a little info please...

I had a TT on 6/1/07, RAI (100) on 7/13/07, Synthroid (125) on 7/26/07.   I'm having side effects and wondered how long I can expect them to last.  I have pretty much no sense of taste at all, funny feeling in my salivary glands and today I noticed my face is getting dry.  Can someone give me any advice or is this all pretty normal?  I felt so awesome after surgery but getting ready for the RAI and then the after affects of it is no fun at all!

 

I had TT on 4/3/07, RAI (150) on 6/27/07, Synthroid and a short course of Cytomel starting 6/30/07.  Its now been 3+ weeks on Synthroid and most of the side effects of being hypo are gone although my energy level is still only about 75% of normal.  I have very little sense of taste and a tender salivary gland on one side.  Being hypo was awful.  I had severe stomach upset on top of the rest of "the list" of symptoms.   RAI really didn't add anything to the "hypo" misery I was already in so I'd have to say it was a rather minor part of the whole experience.  The loss of taste didn't show up until about a week or so after RAI and its now been about 2 weeks or so since it showed up.   This side effect of RAI doesn't seem to be that prevalent, or at least I haven't seen much said about it on this board, but all the official info does mention it as being a temporary thing.....of course, "temporary" is a relative term!  If there is anyone out there having experienced this side effect, I'd like to hear from you.   At this point I'm just considering it a summer weight loss progarm   :O)

I too just had RAI of 150 for Thyroid cancer.  Bad reactions all the way around. I just hate loosing the sense of taste. Hope it will come back.  I love cooking, but not right now that's so far down on the list of things to do.  I really don't eat much.  I also have developed bad canker sores all on the tongue which makes it very hard to swollow anything, so it's baby food  thru a straw for me. My Dr. says there isn't much that can be done that time won't take care of. It's been a very long 9 days of baby food. I do make milk shakes too and drink liquid yogurt, and cream of wheat hot cereal. Lost 10 lbs. so that's ok with me. Lets hope the taste sense comes back or I will be very unhappy.    I also just in June lost my husband to Pancreatic cancer after a long year battle. I knew when he got sick that there was something wrong with me, but I had had problems way before that, so I decided to care for him first, then take care of myself afterwards. I don't regret that decision at all. Hope to hear back from you.  Good luck with everything.