Any hot new tips, suggestions or information out there you guys want to share? I found a blog that had some interesting information. I loved that the husband bought a Geiger counter.
On the 8th Blood test Monday to see if after 15 days of no cytomel and low iodine diet that my TSH level is over 30.
On Feb 10th will be admitted for 100 dose of RAI 131 (approved to stay 3 days in hospital, duration of stay depends on how fast levels fall.) I live 2 hours from the hospital by freeway.
As far as I have been told my first and only scan will be 7-10 after my release from the hospital.
I'm guessing a scan before is not always needed? Maybe they are doing it when I am admitted and have not told me yet ?
I was told 2-3 days in hospital
then 7-10 days be cautious, no close contact, sleep separate etc...
Then I was told I am fine to hold babies, touch pregnant people (I won't...but that's what I was told.)
My husband and I have decided...I will stay in my own fluid proof room for another few weeks beyond this...just to be safe for the children and my family. Anything in my room that cannot be soaked in water, will be covered in plastic.
How long until sense of taste comes back, if lost?
How long did it take for your TSH to return to normal?
Anyone find anything on their body scan and need a 2nd dose?
How long until you felt "normal" again?
How long did you stay secluded?
What precautions did you take?
This is a normal procedure for withdrawal from thyroid hormone in preparation for I-131 treatment. May take 2-3 weeks once medications restarted to begin to feel normal again. Would ask your doctor why Thyrogen could not have been used.
Hi Dr. Lupo,
I did ask about Thyrogen. He said he has used it for years only on patients that medically could not withstand going off their Synthroid for two weeks. He said he feels the old way is the best way to ensure "the best results". I'm still very new to all of this. I had not even heard of Hashimoto's, Synthroid, Papillary cancer etc...until 6 months ago. Now it's been a baptism by fire.
Thank you for the fast reply. I am still hoping to hear from others, and their experiences too. I don't fully understand the future of this. I am getting the idea, this is an every 6 to 12 month deal for the rest of my life. Which if I look at the big picture, isn't half bad.
Well back in 2005 I had a totalthyroidectomy and right after that I had to have two rounds of 131 in a pill form. Before I had taken the pill radiation form I had to go on a low iodion diet for two weeks then I was to have the pill and then the scan. I don't know why they had me do two rounds of everything. I am in the process of finding some of this information out now. But this diet ***** really bad. For me all I wanted to do was eat because I felt like that was the only thing I really had control over well I was totally wrong about that going on this diet.
Another thing the pill that they put you on after your scans to get your levels back to normal reall should be monitored closely. I ended up crying and carrying on for no reason. The dr that I was with really didn't know what he was doing and really didn't care come to find out because all my levels were messed up bad.
If you need more information pm me I will be glad to answer anything you need
Having RAI I131 in a few days. I was told my dose is not high enough for Hosp. stay but I should still be isolated from family. I am very concernd about my family, they are planning to leave the house. I am worried about staying alone and then when they come back, what if I cantaminate something before they come home? Been doing restricted Iodine diet for 6 days started on 2-15, Total Thyroid has been removed right side 1-26 left 2-5 Papillary Ca. So far I cannot sleep and have more energy since I have been on diet. Drs say I should be feeling sysmptoms of hypo but im not last TSH check I was at 33.25, any thoughts?
I sent you a friend request and some info. My dose was 100 mci and the RAI was not bad at all. The hospital stay was awful. Being hypo was the worst part because my TSH went sky high. I was on cytomel, which is fast acting, which means it leaves the body in 8 hours where Synthyroid can take a week to leave your body. I ended up being off for 3 weeks. My TSH was guessed at well over 200+ so that's why I was so hypo-sick.
I saw the nuclear med doc, he deemed me cancer free after my full body scan last Friday. No need for another dose RAI or further treatment from his people in nuclear medicine. He said my swelling and eye site issues will take a few more weeks to go down as my TSH levels or hypo levels return to normal with me being back on my synthyroid.
Add me if ya like and I will be glad to talk more. :) Good luck and welcome to our club of survivors :)
Wow, I read your nightmare story Im really sorry that happend. My Dr. said my dose was around 50-70 not enough for hospital stay but If I have small children they should leave the house for 3 days and I should also isolate my self to my bedroom. They said that the family could stay home but just dont go in my room or I come out. I am very concernd for this and we have decided to have them stay somewere else. I am still afraid of contaminating the house even with the saftey percautions and then when they come home. I am having the I131 sometime around 2/23-2/25. Dr. said I can return to work by 3/15, I am a kindergarten teacher.
As far as Hypo goes im not sure, I had my R thyroid removed 1/26 for Paprillary Cancer and on 2/5 the remainder of the Thyroid was removed. The only time I took Thyroid med was on 2/7 but that was a mistake by the hospital my TSH was at 5 the surgeon told me stop taking or it would delay my testing so only took one dose. On 2/15 my levels were 33 and doctors told me to go on 2/22 to make sure my levels are over 35. I dont feel very Hypo except for having a very cold body and I hate the cold. My vision is blury and I think my eyes a little yellow and often dilate. Little muscle cramps but nothing huge. Im very awake often cant sleep fall asleep midnight wake up 3am and wide awake all day, actually feel a bit speed up not down im shaky and clamy. A little more emotional now than usuall. Today is the first angry day I just woke up mad at the world. But I know that will pass. Thanks for adding me as a friend, thats my situation in a nutshell any thoughts or suggestions? Please be honest even if it *****. our new motto is "all Cancer *****". Everyone thinks it helps by saying you have the best cancer to have. My mother just went through chemo, radiation for Lymphoma and she said hers didnt nearly seem as hard. Not to compare I know I am blessed that the worst really results in death. But ultimatly its all in Gods hands:) Thanks Krista
Here is some great information on the precautions for the RAI (towards the bottom of the page, after the dietary restrictions: http://www.thyca.org/rai.htm
One thing I need to add is to *watch for depression* - being extremely hypo can really mess with the brain chemistry and often leads to depression. Add that to the recent cancer diagnosis and, well . . . if you feel angry, sad, or want to give up please, please talk to your doctor about antidepressants. Many of us have had to go on them - for me it was during the "hypohell" for my RAI (and I'm still on them). I told my doctor I wanted to jump from the roof but didn't have enough strength to even get out of bed. I've never seen an Rx pad come out of a pocket so fast (LOL).
Hang in there - this cancer is curable but the hypohell isn't a picnic at all (and adjusting your meds after can take up to a year so be patient).
papillary carcinoma '03, second surgery '04, recurrence and RAI '06
three sisters with papillary carcinoma; another with precancer; daughter with precancer
Thanks I appreciate it. Part of my problem is Add in which I take meds for although that is conflicting to me as well. I appreciate your comments it helps knowing im not alone. I know this is just a season in my life and I am truly blessed with great family and friends. I think the thought of the I131 is scarring me more than the two sx I already went through. Not what it will do to me but my family and the 18 little kiddos in my kindergarten class. The hardest part has not been OMG I have cancer but OMG I cannot make sure my little group of kiddos might not leave kindergarten knowing what they should because I was not thier. God has a plan and I am listening I think the thyroid and my usuall tendency to worry about things I cannot change (ADD) is just starting ot kick my butt:) Thank you I appreciate it.
I'm glad your read my messy story. I am also glad you thought it to me a negative experience for me. Why? Because that way you know in even the worst of situations, the outcome is a winner! It will be OK and we win, we survive :)
UtahMomma is an expert. She warned me about the hypo induced depression...but wow...when it hit...it was like being blind sided by a bus. So please heed her advice and be ready for it. I was open to the concept, so I warned my family before it hit and they knew how to move into action when it hit me, and not take my random moods to heart. They understood it was all pat of my "cure".
I'm sorry to hear about your mom having a tough time too! My husband is a 9 year survivor of Hodgkins (cancer of the lymphatic system). I understand being told for his and for mine, man you got the "easy" cancer or the "golden ticket" of cancers. Funny how that comes up so often. Cancer is cancer, and yes some have it worse than others, but in the end no one likes being told cancer has control of your life today, so buckle up, suck it up and enjoy the ride.
My suggestion is to do your research on RAI. One man bought a Geiger counter for $95.00 and was able to document from home each day his wife's amount of radiation output daily. I read another where a mother did the same for her daughter. In my opinion they both repoted their levels higher than what doctors claim you will be, and what is "safe".
My husband and I felt no amount was "safe". We are still using precautions and preferred to follow the rules on a Canadian site...and the advice of Momma Utah here.
I told my children to be conscious of the fact I am like the Sun. You have on no Sun block, so you do not want to be exposed to me for too long to protect yourself from my rays. They are 8 and 10 years old. My doctor told me to stay away, zero contact with them for the first 10 days after I had my dose. The strongest beam you will emit if from your thyroid bed area in your neck. Those first 10 days is not just your body fluids, you are beaming or glowing with radiation. After 10 days its more your body sweat and fluids. :)
Later before they released me from the hospital, I asked the nurse what if they were your children and grandchildren, what would you say is "safe". She said min 14 days zero contact with children, pets, babies and preggos. See she told me it takes 20-30 years for anything super "bad" to show up...so IF something bad were to come of it...like cancer...the person I exposed would most likely be very old or dead. Pets would not live that long. Children...well...at they would be in their prime reproductive years.
You are going to get through this. You are going to be healthy. You will win! The biggest thing is to say informed, keep your mind busy doing research, talk on here with us, and plan as best you can with your family. :)
awww shucks *kicks the dirt* XOXO just trying to pay it forward- mainly miss Utah here has done that for me the last few months of my journey.
We're all here, more of us lurking, not posting ...just reading, praying and cheering from the sidelines. We're all praying you won't need us at all pretty soon...pretty soon we all kick cancers a$$ and take control of our lives back.
Well said! Pretty soon cancer will be a thing of the past, but trust me reading your posts, seeing your pic's knowing im not crazy or alone in this has really helped, and NO I will never forget how you and miss Utah have been so open to helping ease my worries. Still plan on checkin in praying for everyone daily:)
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