RAI for Pappillary Cancer of Thyroid feeling awful and still on Cytomel

[linda b.]

Hi All: Yesterday I read your forum and was so touched by the
love and support. Am going off Cytomel in two days, buy am having
problems swallowing, starting to feel strange, and haven't even
stopped yet. RAI is Jan 19.  Has anyone ever had Thyrogen for
an ablation treatment. Cancer was 0.6cm inside a 3cm tumor that
was benign. My surgeon wants me to have the ablation and my
endo was if I wanted to I could wait to see if the cancer returns
and do it then. The coward in me wants to wait, who the heck
wants to go thru hypo and RAI...... I'm terrified of all the
symptoms and after the RAI feeling bad....Sorry to whine,
It's a NEW YEAR and I know that we are all blessed to be here.

Thanks for all suggestions

Linda b. 59, TT 2/4 for papillary cancer 0.6cm
             RAI 1/19

[Bunt268]

Hi, I had my left side removed in January. They were surprised that they found follicular cancer in a part of it and so they took the right out. Had the radioactive iodine in March.

Now I am due to have the 6 month tracer scan and so have been off my usual thyroxine for a few weeks. The scan is next week. I feel absolutely awful this time compared to last time. I worked til the end last time but this time I have just come home from work and it may be another 2-3 weeks depending on what the scan shows (if i need it again). I just feel like I have let my job down since I have only been there two months. I hate going off sick. I feel tired and depressed and I look absolutely awful. Is this normal?? I am more apprehensive now than I was before too. In fact, scared, I can't help it :-(

I know I sound really down. I am and usually I am so happy and bubbly, it is awful. I actually was starting to feel great before this second round. I'm 28 with no boyfriend or children and I want all that but it feels so far away. I am interested in people but it is all put on hold. I hope a future boyfriend will understand. I know I am only feeling this way due to being hypothyroid. Anyone else feel this?

[linda b.]

  Okay, you all are my new best friends!!!!!!!!!!

  What a blessing to have such a support group... Maybe one
day we'll meet and compare "necks".....

  Tomorrows my day to start off all meds...
Here's a question. When do they test the Thyroid globulin?
And what's the purpose of that?

This is such a new world to me. So many new words, and I
know it won't be long before I can read them and understand
them like all you.

Linda b
L.A.,CA

[utahmomma]

Oops - you asked how long you need to be off work.  Check with the hospital and, of course, it depends on what your do for your work.  If you are a school teacher, health-care worker, work with food, etc. I'd wait as long as possible (closer to the 5 day mark) but if you have a desk job or aren't in close physical contact with others constantly, probably three days will work.  I went back after three but I was *tired*.

My hospital typically does the scan doses on Tuesdays and full dose on Wednesdays (I don't know why) so I was able to tie in the weekend.

[malawi]

Hi
i had(being positive)follicular cancer.had my TT on dec 12th and was only on lid for about 9 days.I did my raI(150 millicuries)on wed the 27th which requires a 2 night hospital stay here in fl so i got out fri aft on the 29th(although my radioactive level was at 6 the following day(28th)so they almost released me after 1 night.it has to be below 5 and when they let me go on fri i was at level 1..The worst part for me was not swallowing the pill but being cooped up with no fresh air for 2 days i could not wait to get out of that room...i brought my own bottled water in a styrofoam cooler and was glad i did its just easier that way...i experienced very slight nausea which i chalked up to having no fresh air and a slight swelling of my salivary glands which went away overnight..i brought some sour candy and probably went overboard on them which might have affected my glands as well...like i said the worst part by far was being cooped up for 2 days...one of the nurses who was taking care of me had pap cancer 4 years ago so we shared a common bond there..she was about 40 i would guess.....anyhow just waiting on my body scan on jan 8th...you guys will get through this fine..just focus on the end result which is getting healed...!!!!
Roman

[malawi]

Also forgot to mention that the day after they gave me my rai pill my endo came in and started me on 125 of levothyroxine($4 dollar drug at walmart).i did not experience any sore throat but have some kingd of sinus mucus thing going on but that seems to be subsiding as well..i feel fortunate to go from a TT on the 12th to rai on the 27th as i realize its longer for most people(prob wanted the money before the end of the year..HA HA)
Roman

[utahmomma]

Hi Linda B,

You're not whining, you're right, RAI and the diet are not fun and hypo is pure hell.  Trust me, it was just 6 weeks ago that I had my RAI and the hypo was the worst I've ever felt.  On top of no energy and hurting everywhere, the depression was crushing.  Only thing I regret is I didn't do it right after my surgery.  Sounds crazy, I know but I spent three years between TT and the RAI worrying the cancer would come back.  Three years later it did, hence the RAI.

It's no fun, it's really not but it means the difference between being cancer free and having to worry about it for years then eventually do it later.  Please, please rally those you love and have them watch you for depression, it was the deepest depression I've experienced and I wish I would have had understanding and support around me.

My sister's RAI (all three courses) were right after her cancer and now she doesn't have to worry and can just enjoy life with her beautiful, little family.

Linda B, if I could do it all over again I would have had the RAI right after surgery.  Please consider it and you won't be going through this alone - there are so many loving, wonderful people on this forum to help you.  They were certainly there for me and pulled me through some very rough times - even though they didn't realize it.  :-)

If you are putting it to a vote, I'm voting that you get it over with as soon as possible then move on to a wonderful, cancer-free life.  Six weeks after RAI and my TSH levels are getting back to normal and I'm feeling better than I have in years.  Just think, you get the RAI in mid-January and by the time spring starts to break you'll be feeling better than you ever have.

[linda b.]

I am overwhelmed by your love and support. Wish we were all
sitting in our PJ's having a hypo slumber party.
You have all given me the courage to stop searching for the
answers I want to hear.
I will hold my chin up, call Nuclear Med. tomorrow and tell
them it's a go..................... but please, don't anyone
leave, bare with me when I'm whinning, and slap me silly when
you've had enough...................

How did they know that your TSH levels were high enough. And
had you been on a LID diet for two weeks? I'm going to the
store, and I'm going to start early on my LID, incase I get
TSH level sooner.......Thank you all again........

How long do you think I'll have to be off work?????

Linda b.
L.A.,CA
RAI 1/19/07

[utahmomma]

I'm proud of you.  Huge electronic >>>HUG<<<!

I'm not sure how your hospital will handle the RAI - ask them if you will need to be hospitalized or not.  Also ask them to send you their low-iodine diet and restrictions - each hospital is a little different.  

This is what the New York Thyroid Center recommends for the low-iodine diet (LID):
-  Vitamins containing iodine - Check the label on the bottle.
-  Iodized salt: Not all salt contains iodine - check the label on the salt container. Only use NON-iodized salt until after your treatment.
-  All fish and shellfish - These are particularly high in iodine.
-  Milk, ice cream and yogurt - You may have milk in your coffee or on your cereal, but try not to drink more than 1 cup (8 oz) daily.
-  Canned fruits and vegetables - fresh or frozen fruits and vegetables are allowed.
-  Cured or spicy meats (ham, bacon, salami, etc.)
-  White bread - whole wheat, rye or cracked wheat bread is allowed.
-  Salty foods (pizza, chili, Chinese and Japanese food, snacks - pretzels, chips, nuts, etc.)
-  Tea - coffee is allowed
-  Lemonade
-  Foods containing red food dye

*My* hospital was MUCH more restrictive so check with yours (had to stop calcium supplements, eggs, all prepared foods, etc.)

Here another on-line resource:  http://www.thyca.org/rai.htm#diet

Personally I lived on raw, unsalted almonds; fresh fruit; fresh veggies, and 6oz of fresh hamburger (no seasoning) or chicken a day.  Lost weight (then put it right back on thanks to the holidays).  If you steam some fresh green beans with some unsalted almond slivers, spray it with a little - I Can't Believe It's Not Butter - and serve it with a freshly cooked chicken breast with a little oregano you can almost imagine you're eating normal.  :-)

My doctor gave me a standing order for a TSH test (my hospital said I had to have a TSH of 30 or above for the RAI - your hospital's threshold may be different).  I had the RAI scheduled following the third week of the LID (pending the blood results).  LID was scheduled for Wednesday so on Monday I had the blood draw.  THS was at 75.9 so I called nuclear medicine who had me come in the next morning for the scan dose then on Wednesday for the Chernobyl dose (100 millicuries).  

I could have easily had the RAI the week earlier because my TSH was climbing so quickly but I didn't know.  :-)  Talk to your doctor about a standing blood order and get tested at week #2, then if need be #3, etc.

I'm not going anywhere.  We're ALL here for you!!!

[GravesLady]

There is little side effects from RAI. Some will experience, however not all maybe some or one; gastrointestinal , salivary (sore throat  - sucking on sour lemon drops helps to get the saliva going which eases andd sooths the sore throat),  non-salivary neck pain, swelling,  pulmonary and nasal complaints. However most  resolve  in a week or two.  

Stopping the thyroid meds. has more side effects than RAI.  Mostly depression but once back on meds again, and I understand it pretty much right away (us Gravers' the norm is three months to a year, and that is a lot of depression LOL, but we got through it and alive.    Why would you want to wait to see if the cancer returns before doing RAI, it might be too late the next time. If it were me I'd do the RAI, especially after I already went through it and knowing what its like - no big deal!

You are going to be all right through the hypo and RAI part.  There is a lot of people here who have personally went through all this and they can help you through it.

Chin Up and Good Luck!

[roidless]

I am having RAI tomorrow and my doctors told me to ease up on iodine containing foods but for the most part just eat in moderation. How do I know if my TSH is low enough they didn't draw any blood and I don't think they plan too. I have had no seafood. Little salt and I cheated and had a cheeseburger earlier because the doc said moderation. I have been off of all thyroid medications for 3 weeks and my biggest complaints are constipation, tiredness. my heartrate is much slower and depression. I hope its ok. My doc is suppossed to be the best in the area. I hope so but its still making me nervous. I had a tt on november 13 and had papillary carcinoma including one lymph node.

[utahmomma]

Could you ask to have your TSH tested tomorrow moring before the RAI?  My hospital lab put a rush on mine and the results were back within an hour.

[roidless]

Sounds like a plan. Great idea. Thanks

[malawi]

My dr told me tsh had to be above 35 and mine was 45.2
Roman

[danishcat]

Linda...just another note to hang in there.  We care about you, and understand what this feels like.  When you go through your rough times, allow others and yourself to love you through it.  Feel what you feel as this is all normal. I have just been through a few rough days myself and am learning to be much more accepting, gentle, and kind to myself--which I have learned from the examples of others in this forum.

Hugz from ~Cat

[venora]

Its ok .You can whine all you want here.Welcome to the club.I am hypo hell myself right now awaiting insurance referral to go forward with my RAI
At first the lid is a lttle tough but you know I have been eating very healthy so I am kinda proud of that but the hypo hell is tough.Utahmomma told me to watch out fot the depression and as usual she was right.
This is a wonderful place for us .So I look forward to hearing more from you.
Love Venora

[linda b.]

Sorry I gave the wrong dates.
My TT was 12/4/06
RAI is 1/1907

Could be hypo starting early...Feeling extra dense..

Linda b.