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Old 06-02-2005, 11:13 AM   #1
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Radioactive Iodine burnout scheduled

Hi..I came across this site while surfing for info on radioactive iodine burnout. I have multiple goiters on both sides of my thyroid diagnosed in 1999 and since I am the world's worst patient, have put off doing anything my doctor has recommended. I am, frankly, scared to death. I had a biopsy last year and all nodules showed benign. However, the latest ultrasound shows one of them grew slightly since the last ultrasound. Nodules measure as follows:
3.2x2.2x3.6 cm; another 1.9x1.4x1.6 cm; another 2.2x2.1x1.9 cm; another is 0.9x0.8x0.6 cm. I don't know what any of this means, except my dr. says they are huge. A throat xray last week showed no narrowing of the trachea. I guess she had to know that because she says the burnout will cause swelling and she didn't want it to press on the trachea.
This all has me scared to death. I am not a candidate for surgery because of diabetes and I am grossly overweight. I have read some threads here where folks have said they have sight problems with their eyes after the RAI. I was not told about that. All my dr. told me was I would get hyper (whatever she means by that), there would be swelling, I would most likely have a sore throat (for how long?) and I most likely will not feel well until about September. My concern is that I have my granddaughter's christening on Father's Day and my daughter's wedding out of town in October. Can anyone shed ANY light on what I can expect from this burnout? It is scheduled for next week...uptake scan June 8th and 9th...burnout June 10th. Is the RAI a pill or injection? The head of nuclear medicine at my hospital has declined to answer any of my questions..he refers me to my dr. and then I only get limited information..I don't know what questions to ask. I don't know what to expect. I have high blood pressure now, taking 2 meds for that...with the palpitations I can expect from the burnout do I have to fear a heart attack? Frankly, I am scared to death..I have put this off since 1999 and now am getting very nervous and anxious and don't know if I have the right stuff to go through with it this time. These diseases I see mentioned here..Hashimoto and Graves...I have never heard of..have not been mentioned by my dr.

 
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Old 06-02-2005, 12:12 PM   #2
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Re: Radioactive Iodine burnout scheduled

Graves disease is when people's thyroid are overactive- hyper thyroid. You have antibodies which are attacking thyroid function. SYmptoms are , high heart rate, sweating, eating a lot, losing weight, high blood pressure, shakiness, hair loss, muscle loss, etc.
Hashimoto's- is another form of autoimmune thyroid problems. With Hashi's typically people have multinodular thyroid. Again, antibodies attack thyroid. You can swing from feeling hypo to hyper. Hypo people tend to put weight on, have slow heart rate, low body temp, cold all the time, fell fatigued, can't get enough sleep, etc. Again, with symptoms everyone is different.
I was hyperT - I got surgery for my thyroid. I am feeling better, but still not my old self.
If you are unsure about whether or not to get RAI I would wait to do it. You have WAY too many questions still. It's something you can't take back once done.

Do you know what any of your lab results are? Your TSH, free t3 free t4? Did they run an antibodies test?

April

 
Old 06-02-2005, 01:01 PM   #3
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Re: Radioactive Iodine burnout scheduled

The main thing that pops out at me in your note is that you give no valid reason for having the procedure done.
You don't say you have a feeling of unwellness that goes with abnormal thyroid hormone levels. The nodules don't seem to be constricting the structures in your throat. As far as I can tell, you simply have a nodular gland. Lots of people have nodules, and that's not a good reason to have their glands burned out. I read a study once that conducted post-mortem exams of thousands of thyroid glands. A percentage somewhere in the high 80s/low nineties [I have forgotten the exact %.] of the glands had nodules, but only a tiny fraction of those people had had thyroid problems in their lifetimes.

I agree with April. You have far too many important questions that your doctor seems to be ignoring. I - speaking for myself - would not let myself be pressured into such a major procedure.

 
Old 06-02-2005, 03:29 PM   #4
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Re: Radioactive Iodine burnout scheduled

I had RAI three weeks ago, it was given in tablet form and I have had no side effects from the treatment so far. I am a bit hyper at the moment but this is due to being on no medication. I have been told it will take six weeks before they can assess whether the treatment has worked and I can be put on meds. I felt like you before the treatment, complete lack of information, the information given from the consultants was patronising in the extreme and based on the level of comprehension required of my six year old child. I am more tired than normal but have put this down to my thyroid condition rather than RAI. Sorry I cannot be more helpful, I am new to this site and can only go on what I have experienced. Anyway what ever you decide good luck

 
Old 06-02-2005, 05:34 PM   #5
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Re: Radioactive Iodine burnout scheduled

Aprilpow..Just got off the phone with my dr. She says I am hypo..Hashimoto,,.toxic multinodular goiters is what she said.

Test results from blood work done 4/22 are:
TSH 0.26 (low) NORMAL RANGE 0.40-5.50 mIU/L
T4, Free 1.5 NORMAL RANGE 0.8-1.8 ng/dL
No other TSH or FT results showing on report.

1/21/05 TSH was 0.27

That number has been consistently low and for that reason dr. said she cannot put me on thyroid meds. I have been extremely tired for many years telling my drs. over and over. They contribute everything to my weight. As I said I am grossly overweight. 5'3" at 290 lbs. I have no problems swallowing and no tightening of the throat except when I raise my arms over my head. I also was diagnosed about 8 yrs ago with sleep apnea but never pursued that even though it was advised I did. My endo Dr. says the thyroid problem could be a contributor to that. I can fall asleep at my desk. I am not able to drive any distance without getting tired and in jeopardy of falling asleep. I am totally wiped out all the time. I have very bad shortness of breath with very little exertion..when I told my endo. she asked me if I thought that was from my thyroid problem or my weight. Now, I am not the Dr....she is...how do I know what it's from. I also have a very bad sciatica problem and osteo-arthritis. I have absolutely NO energy and could sleep standing up. Am on meds for diabetes, arthritis, high blood pressure, acid reflux, and cholesterol (although my cholesterol was fine, not high, but my dr. said it is recommended for diabetics to take medication for cholesterol). I often feel depressed and at night I quite often find my heart rapidly beating (and sometimes like spurts of rushing), and bad leg pains at night. I also am usually very hot all the time but this winter I seemed to be cold all the timel. Now I am going through the hot spells again where I just want to disrobe. Not menopause...went through that in my 40's...many years ago. I am just tired of hurting all the time and not being able to function, walk, etc.

Last edited by worstpatient; 06-02-2005 at 09:13 PM.

 
Old 06-03-2005, 07:00 AM   #6
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Re: Radioactive Iodine burnout scheduled

Hi there... hopefully midwest will come along and look at those results. They really don't seem that bad! You may want to ask for the free t3 to be tested. B/c honestly just by those results I wouldn't do anything. (I AM NOT A DOCTOR THOUGH!)

Please look into all of this further. You need to get better answers.


April

 
Old 06-03-2005, 08:20 AM   #7
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Re: Radioactive Iodine burnout scheduled

What my dr. said is most important to her...she is afraid the nodules will eventually choke me. She said I have multiple nodules on both sides and as I get older (am already old) it will be more difficult, so she has been trying to get me to do something since 1999. The latest ultrasound shows growth in one of the nodules.

 
Old 06-03-2005, 08:49 AM   #8
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Re: Radioactive Iodine burnout scheduled

It doesn't make sense....to do it just b/c it might eventually choke you.

Hypothetically speaking: you aren't going to be out at the store browsing through shirts, when all of a sudden your nodule grows and you can't breath and die b/c you don't have air.
They don't grow THAT quickly. Yes, they grow over a month or years, etc. I dont see why you can't wait and watch. Be monitored every couple of months or whatever she sees fit.

Maybe you should see a different doc and see what they say? Or a holistic doc? I haven't had the RAI. There are a lot of people who have. Some are fine and some are worse off than ever. You will become hypo thyroid and need to take 1 more pill every day.

Like I said midwest is pretty informative on meds and test results. Hopefully she will be around to give her 2cents!
April

 
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