[npatterson]

#1070370

Dear inor,

What a difficult journey you have had! I may not be able to answer all your questions, but can address the most pressing ones.

When you have RAI, you will not glow in the dark, or emit evil rays of radiation to others. It is considered a good idea to sleep alone the first night or two. With Graves’ we have quite small doses of RAI. In comparison to cancer patients, who have hundreds of units, the range for Graves’ is less than 30. I have never even heard of one of us having that much. It is the higher doses that must be isolated (and then they stay in the hospital).

The RAI will go, via your bloodstream, only to your thyroid. The isotope-131 is specifically targeted to thyroid tissue. It will be excreted through your kindeys in your urine. (The reason cancer patients have so much is that they must seek-and-destroy ANY thyroid tissue that may have metastized to other parts of their body, and it must be destroyed immediately). Our dose "begins" to ablate the thyroid, which will continue to disintegrate itself-over time. That is when the cells are broken down and we sometimes get the flood of thyroid hormone being released into our system.

The only person you probably need to be concerned about on your trip is the small baby. They are usually comforted by putting their head on our shoulder (right nest to the thyroid). We usually advise parents to do things like one parent hold the baby, while the other reads the bedtime story. You can play peek-a-boo, tell stories, but probably not cuddle the baby for that trip. I suppose everyone could change places every couple of hours–we used to do that with our children so that no one could claim favorite seats! Each rest stop could be the signal to "scramble".

I hope your experience with RAI is a good one. You are right–given your experience, it may be a more rocky road than some folks. Stay close in contact with your doctor.

One more caveat: If all your symptoms don’t begin to settle down, it may be that you and your doctor need to be looking elsewhere for diagnosis and treatment of other things.

Have fun on your trip,

[inor]

#1070371

Nancy – Thank you very much for your response. Definately makes me more comfortable with my road trip! The infant was what I was most concerned with.
I am keeping my fingers crossed that the RAI will go well and it will hopefully be an end to the long & difficult journey for a diagnosis I have been on. I am hoping that all along it was the Thyroid causing the wide range of symptoms and after treatment I will begin to feel normal again (not that I know what "normal" is anymore!).

Thank you again! Have a wonderful weekend!

[npatterson]

#1070372

I remember the first time I felt "normal". I had been a camp nurse all summer. Iwas outdoors, had very little (extra stress) 800 campers all summer was enough! I had to walk everywhere, up and down hills. I was rested. One day, I squatted down to pick up a piece of litter. That may seem simple, but I did it all in one stride, didn’t miss a step, and immediately started laughing out loud. It was such a good feeling.

[Hopeful23]

#1070373

sorry to hear ur story with gd. i struggled with the atd and beta blockers.. i suffered jaundice syncope and the lists go on. I had my rai may 12. I was so scared. My uptake scan was 98%. I had a 15 millicuri dose and i was not even confined to my room. As nancy stated sleeping separate and avoid babies around your neck for a few days. The radioloiist will give you specifics. It is going to be okay. Stay strong. Your are on your way to a healthy stable life. Good luck ” title=”Smile” />

[inor]

#1019254

I am 38 years old and have been stuggling for almost 6 years with a variety of symptoms. In the begining I was experiencing irratic behavior, insomia, very emotional unstable I was diagnosed as bipolar and immediatley put on meds (NO blood work was done prior to this). I did not agree with this diagnosis nor did my family & friends. Shortly after this I started experiencing loss of motor skills, severe weight loss, tremors, slurred speech, heart palpitations, muscle weekness, numbness and so much more. Finally I found a new GP and after many tests was diagnosed with a vitamin B12 deficiancy and pernicious anemia. For years I have experienced many different symptoms, had another diagnosis of Irritable bowel (all symptoms now gone) and now I am in early menopause. Throughout all of this the TSH levels always came back normal but at the low end of norm, until about 8 months ago. MY TSH was <.03 that’s when I finally was sent to an endo who put me on Methimazole and Propranolol. After 3 months the TSH levels were finally normal and I was able to stop the beta blocker and I felt really good. Unfortunately this did not last, 2 months later symptoms started again and blood work came back with TSH <.03 again. My endo increased the methimazole but this did not work and my last blood work came back with a Low WBC and TSH still off the chart, my endo made me stop the Methimazole immediately and told me I had Graves Disease. She has suggested either surgery or RAI. I had an uptake scan this week it came back at 77% on day 2 which I understand is very high. I am scheduled for RAI on Tuesday (June 23rd) and I am scared of that this may not be the right choice. I have done a lot of research and found this is a very simple procedure but given my past experiences I am worried this may not be so simple for me. I would greatly appreciate any feed back from others that have had RAI and/or a similiar road to finding a diagnosis.

Additionally I have a question on the precautions for exposing others to the RAI. I was planning a road trip and leaving on Thursday evening (not even 3 days) after the treatment. I am travling in a car with 6 other people 4 of them being children ranging in age from 14 to 8months. The trip is 6 hours. The hospital has recommended not prolonged auto rides with others (over 4hrs) for 7 days which to me seems extreme. Other sites I have found says 2-3 days. Anyone know what the best time frame is?

Sorry my post is a small novel I am just concerned, confused and looking for help!

[RhondaG4]

#1070374

inor,
a question for you…did your endo actually test you for the Graves’ antibodies? Or is she making her Dx based on your levels of your TSH T3 and T4? Just curious?

[inor]

#1070375

Rhonda – I tested negative in november on an ana screen but I had a test positive prior for another antibody test I don’t have a copy of that one. Do you think I should request this before doing the RAI? I think she is basing this on the TSH, T4,enlarged thyroid and uptake 2times first one was at 90% on day two this weeks was at 78% on day 2. I do trust her diagnosis she is one of the most reputable endo’s in our area. Also I do have Pernicious anemia which is another autoimmune disease and I have read in the book "living well with graves & hyperthyroidism" that if you have this you are at risk for Graves. Has anyone heard of this?

[angeleyes1117]

#1070376

Hi everyone i am new to this site and i am seeking help dont know if any one can help me but i have got to get some answers. So hear we go i will be 30 years old in november and i have had my tubes tied for almost 9 years. I am having mood swings so bad that my husband wants to leave me, i have woke up 2 times now soaked from head to toe, when i am at work i will start sweating every where ( i work at a food lion. Not a hot place to work!) a week before my cycle starts i take a nose dive with my hormones i cry, i pick fights, yell,scream, every one around me knows when my cycle is going to start and they try to stay far away. I am on med for depression but nothing helps when my cycle gets ready to start. I feel like locking myself in a cage alone so i cant hurt friends and family. Also my periods are heavy and long and some times they are light and short and never have a regular schedule. can someone please help me this is not normal and no doctor takes me serious because of my age. All of my family has either had hystorectomys or gone in to menapause in their late 30’s early 40’s. Last thing i have lost all my energy.

IF ANYONE HAS ANY IDEAS PLEASE HELP!

[Ski]

#1070377

Hi there,

Your questions sound like they are intended for a group that’s focused on menopause issues ~ you don’t speak of any thyroid issues, are you a Graves’ Disease patient?

[Author]

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