How long after RAI does side effects last?

92 Posts | Page(s): Prev 12...4 5 6 7 8 ...910 Next 

RE: How long after RAI does side effects last?

by sbausman on Wed Aug 01, 2012 11:16 AM

Quote | Reply

Good luck to all!

As for the side effects, I'm a year a 4 months out and still get the metal mouth occassionally! 

In regards to the weight gain—I'm up 25 lbs since this happened (not too happy about it) and can't seem to get it off.  I guess it could be worse.  It took a good year to get my meds undercontrol, I'm now up to 150mcg/day of levo.  I now don't have the urge to nap in the afternoon!

RE: How long after RAI does side effects last?

by pugslee on Wed Aug 01, 2012 01:59 PM

Quote | Reply

On Aug 01, 2012 11:16 AM sbausman wrote:

Good luck to all!

As for the side effects, I'm a year a 4 months out and still get the metal mouth occassionally! 

In regards to the weight gain—I'm up 25 lbs since this happened (not too happy about it) and can't seem to get it off.  I guess it could be worse.  It took a good year to get my meds undercontrol, I'm now up to 150mcg/day of levo.  I now don't have the urge to nap in the afternoon!

I'm really tired of being passed off from one doctor to another. I had thyrogen in early June, two weeks later I got the shingles - my GP thinks it's because the thyrogen is hard on your immune system. Of course the endo says that is not true. Face it, you are injecting animal hormone into your body, there will be reactions within your body. My parotid has been extremely swollen for about a month, even under the ear, and the ear has painful pressure. Talked to the endo and she said go to an ENT. Since I got the shingles before that happened, I went to the GP and was on two antibiotics and steroids. She thought ithe drugs would help the parotid issue too. The parotid swelling is not an infection so the drugs did not help at all. Had a sonogram. The sono dr said he could visibly see the swelling in my face and felt it under my ear but the sonogram did not show anything. The endo called and said there may be something deeper than the sono showed. Now I'm worried. Today I go to the new ENT. I thought endo's are supposed to work with all glands so why is she passing me to an ENT to do further work on the parotid? I'm very frustrated and tired of being in pain amd lied to with this "good" cancer.

RE: How long after RAI does side effects last?

by phobia on Tue Aug 14, 2012 01:22 AM

Quote | Reply

I was told to use the lemon drops 24 hours afterm the high dose pill. It aggrivated my ulcer and made my nausea worse. I'm using life savers and chewy sour (kind of) nerds candy.

RE: How long after RAI does side effects last?

by Guinness on Sun Dec 09, 2012 10:47 PM

Quote | Reply

I am 6 months past my RAI and have been doing okay.  I am still constantly changing the dose that I am taking due to some side effects.  I was on 175mcg levothroid + 25mcg cytomel everyday.  This was after I told the doctor that I was still tired and my hair was falling out.  Both signs of hypothyroid.  I saw a different doctor recently and was told it was too high so now I am on 150mcg levothroid + 5mcg in the morning and 5mcg in the afternoon.  My hair has stopped falling out so that is good but somehow I feel a tired.  Maybe it's still low?  I'm not sure.  

Does one pill provide more energy than the other?  

I saw that some are still experiencing metal taste in their mouth but I have not had that since the week of my RAI.  

I start taking cytomel on Dec 17, 2012 for 4 months, start my disgusting LID (Low Iodine Diet) soon and get a small dose of Radiation and scan.  I'm glad that it is a smaller dose this time because I don't want to go through the big RAI process again.  

I haven't particularly gained more weight but I also haven't lost weight either.  I was hoping since they try to keep your levels low (hyper) that it would be easier to loose weight but that hasn't been the case.  Darn it!!!!!

I have had a ultrasound in the last few weeks where they found an enlarged lymph node.  They said my globulin levels are good so they will just continue to monitor it to make sure it doesn't grow.

I'm curious if this is something I'm going to have to continue doing every 6 months for the rest of my life????  I am 32 right now.  Although I have health insurance, medication really racks up.  I have spent so much money on medication.  

I hope everyone is doing well and staying positive.

RE: How long after RAI does side effects last?

by sbausman on Tue Dec 11, 2012 08:40 PM

Quote | Reply

Hi Guinness,

Not sure if pills are different, I am taking a generic form of levothroid called, levothyroxine.  Which is very inexpensive.  I pay $10 for a 3 month supply at my local Target (no insurance plan).  I take 150 mcg but I am not on cytomel.  I think cytomel just gives you a little boost, but I'm not quite sure.  I think it's more short-term reactive rather than the levo is long-term. 

As for your scan coming soon and going on the LID—I do that Jan 4th and get my scan the following Wednesday, the 9th.  I too will have a low dose and hopefully not have to go through the RAI process again.

I am suppose to get my scans every 6 to 9 months but because my insurance was a problem with the thyrogen shots, I don't.  Apparently the thyrogen shots are hard to come by and insurance doesn't always pay. 

Weight-wise—I gained:(  I'm in a wedding June 1st, so I am hoping to shed 30 to 40 lbs—ha!  Wish me luck!!

Good luck to you and thanks for posting.  I plan to post a question on another thread asking what's everyone's go-to dish or pantry item for the LID...i hope that gets us some creative solutions to our eating and alleviates any questions we may have.

RE: How long after RAI does side effects last?

by Guinness on Thu Dec 20, 2012 01:39 AM

Quote | Reply

Thanks for your advice and good luck on your weight loss goal.  Because I'm starting the LID Im enjoying what I am eating for the holidays.  I still have to be very careful not to over do it because I feel like the 2 a day cytomel that they switch you on is not as strong as what i was currently taking.  Has anyone experienced any issues with the 2 a day cytomel meds they put you on before the LID?

Those who take the 2 a day what times do you take it?  I have been told to take it first thing in the morning and don't eat for 1 hour.  Then take it again in the evening but take it with 2 hours of empty stomach.  Wait 1 hour after you take it.  It;s just so much to remember! ahahahaha!!!!!

Great idea on the go to food for the LID.  I have no clue.  I just need 2 or 3 things I like and I can just munch on that for those 2 weeks we do the LID and off the meds but dang it, I hate gaining weight during this process while eating barely anything at all.  I recall my face being so bloated! :(  Sucks.

RE: How long after RAI does side effects last?

by butterfly501 on Fri Jan 11, 2013 07:13 AM

Quote | Reply

Hi'ya!

just as an FYI on the levothyroxine/cytomel thing :

levothyroxine is a T4 (thyroid hormone previously made by the thyroid)

liothyronine (cytomel) is a T3 (also a thyroid hormone previously made by the thyroid)

T3 is fast acting and leaves your body quickly (which is why it is used on med withdrawl to prepare for RAI)

T4 sticks around for weeks, it takes a bit to leave the body

the body naturally converts T4 to T3, so that is why the majority of thyroidless people only take a T4 (levothyroxine) pill, daily. 

hope that helps!

RE: How long after RAI does side effects last?

by MissCyndie on Tue Jan 15, 2013 10:50 AM

Quote | Reply

Everyone is different.  Depends on whether you are male or female, age, etc.  I am 3 years post TT and I remember that it was a few months on and off that I had the pain in my jaw/gland on the right side only. I hate lemon drops, so I ate Jolly Ranchers and drank a lot of water (not more than 7 glasses a day are good for you).  There is such a thing as too much water.  The first year I had off and on pain in the gland, but taking Advil worked and it only last 2 days.  So, it's an individual thing. 

RE: How long after RAI does side effects last?

by robergalis on Wed Jan 16, 2013 05:57 PM

Quote | Reply

They are all bad, and they all need to be taken care. I heard that it is the good one, and didn't take as much care as i should have. scare the shit out of me and make me take care instead of saying, it is a surgery a pill and it is done deal.

RE: How long after RAI does side effects last?

by Guinness on Wed Jan 16, 2013 06:12 PM

Quote | Reply

I am on day 3 of my LID and no medication and feeling fatique. I'm not at the point yet where I am exhausted lifting my hand to apply makeup or brush my teeth but I know it's coming.  

They say the small dose of radiation is safe.  Did anyone take any extra precautious after this?  

What were some of your LID (low iodine diet) go to snacks/desserts/foods?  I didn't want to deal with cooking this time around because I did try to follow the LID cookbook but it wasn't that great and I just wanted to much on things.

I went to Sprouts (Henry's) and bought no salt spaghetti sauce, pasta, chicken and made myself spaghetti so thats been good.  I also bought basmati rice, egg beaters, green onions, onions, garlic to make myself fried rice.  That was really good.  As far as snack, I've been snacking on tangerines, banana, grapes, matzo crackers, homemade beef jerky, apples.  For dessert, I've been eating sorbet even though it's really cold :) What have been your go to foods?

Should I expect any symptoms for the small dose of radiation?  

92 Posts | Page(s): Prev 12...4 5 6 7 8 ...910 Next 
Subscribe to this message board discussion

Latest Messages

View More

We care about your feedback. Let us know how we can improve your CancerCompass experience.