# RAI Failed-Now what??



## BionicThyroid

I was diagnosed with GD in October 2009. I had the symptoms for several years, and was told it was stress, depression....I was started on Methimazole and Proprananol, then switched to PTU and back to Methimazole. No luck- my thyroid levels continued to rise. In November, I had the RAI- with NO prior scan- Went back to the doctor last week, and my thyroid level had doubled- I tested positive for the antibodies- My level was 488- very high. I am scheduled for the RAI-uptake on Monday and possibly another treatment on Wednesday. According to my doctor, surgery is not a good option because my thyroid is uncontrolled- SO- my question is, what if RAI fails again?? How do they get my thyroid hormone down so that surgery would be safe? Is this common?

I feel like a psycho-crazy woman with a BIONIC thyroid. HELP!!!


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## Andros

BionicThyroid said:


> I was diagnosed with GD in October 2009. I had the symptoms for several years, and was told it was stress, depression....I was started on Methimazole and Proprananol, then switched to PTU and back to Methimazole. No luck- my thyroid levels continued to rise. In November, I had the RAI- with NO prior scan- Went back to the doctor last week, and my thyroid level had doubled- I tested positive for the antibodies- My level was 488- very high. I am scheduled for the RAI-uptake on Monday and possibly another treatment on Wednesday. According to my doctor, surgery is not a good option because my thyroid is uncontrolled- SO- my question is, what if RAI fails again?? How do they get my thyroid hormone down so that surgery would be safe? Is this common?
> 
> I feel like a psycho-crazy woman with a BIONIC thyroid. HELP!!!


I had to have RAI 3 times but at that time I did not know what I know now. I would have opted for surgery had I known.

If I were you, I would get a second opinion about maybe surgery. Also, have you had another radioactive uptake scan? I believe that you should. You did have one prior to the RAI, correct? You would want to be sure you don't have cancer. If you do, that would settle the surgery question.

Yes; the patient can be put on Lugol's solution prior to surgery so the patient does not "dump!" (thyrotoxicosis) Please get a second opinion.

Welcome to the board and I am sorry you are suffering so bad.


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## chopper

I could be wrong and Andros would have more experience witht his, but is it possible that the thyroid is just dying off now and it may be too early for another shot of RAI?

It's only been 2 months or so post RAI. Is it not possible for the RAI to just now be starting to work its magic?


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## BionicThyroid

I did NOT have the scan prior to the first RAI. Monday will be the first scan that I have. The reason they want to do another RAI, is because I was completely unresponsive to the initial one. My thyroid levels did not come down at all, instead they doubled. Another thing is I have a history of high potassium, which is a problem with Lugol's...(I think)


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## Andros

BionicThyroid said:


> I did NOT have the scan prior to the first RAI. Monday will be the first scan that I have. The reason they want to do another RAI, is because I was completely unresponsive to the initial one. My thyroid levels did not come down at all, instead they doubled. Another thing is I have a history of high potassium, which is a problem with Lugol's...(I think)


I don't want to upset you but I would be most negligent to not tell you this. Cancer cells do not uptake very well.

http://clinicaltrialsfeeds.org/clinical-trials/show/NCT00970359

I am very worried. Do you have a goiter/nodules? If so, have they done an FNA (fine needle aspiration?) I wonder if your thyroid will do the uptake for the scan?

I am amazed that they gave you RAI w/o an uptake scan or an FNA. I truly am.

Do you have kidney problems and therefore are not clearing the potassium?

Please keep us informed. I am keeping you in my thoughts and prayers.

And I have to ask at least myself, if you did not respond to the first RAI, why would they want to do it again? Like I say, I am very concerned.


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## BionicThyroid

The doctor has not said if he felt nodules/goiter. He did say that my thyroid felt somewhat smaller since the RAI, even though my thyroid levels are higher. I have not had a FNA- blood work only. Will the RAI uptake scan show signs of cancer? As for the potassium, we are unsure of the cause. It was high on 1 occassion and borderline the next. Last week my potassium was within the normal range. The doctor says he wants to TRY the RAI one more time as an attempt to avoid surgery. Cancer is my worst fear.


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## Andros

BionicThyroid said:


> The doctor has not said if he felt nodules/goiter. He did say that my thyroid felt somewhat smaller since the RAI, even though my thyroid levels are higher. I have not had a FNA- blood work only. Will the RAI uptake scan show signs of cancer? As for the potassium, we are unsure of the cause. It was high on 1 occassion and borderline the next. Last week my potassium was within the normal range. The doctor says he wants to TRY the RAI one more time as an attempt to avoid surgery. Cancer is my worst fear.


To be honest with you, your worst fear should be NOT finding out if you have cancer. Cancer of the thyroid, generally speaking, is a very easy fix.

And yes, the RAI will show signs of cancer. By all means. They look for hot and/or cold nodules, vascularity, calcifications and other irregularities indigenous to cancer.

On your potassium; Do you know if they are doing a serum or plasma test?

You may find this of interest......

Is there anything else I should know?

Physicians question elevated potassium results when the numbers do not fit the patient's clinical condition. Potassium levels can be falsely elevated by the following specimen-collection or -processing errors:

Clenching and relaxing your fist a lot while your blood is drawn.

Collecting the specimens without regard for the proper order of draw of the tubes; that is, drawing a tube that has an anticoagulant containing potassium prior to a non-anticoagulated tube. This results in specimen contamination of the non-anticoagulated tube with potassium.

Delayed handling or processing of the specimen. The red cells and serum or plasma need to be separated within the appropriate clot to centrifugation time. This also reduces error if the specimen has to be transported from your doctor's office to a laboratory.

Improper centrifugation

Any action that can cause the red cells to break apart (hemolyze) and release more potassium into the specimen. This may include using a large diameter needle (causes the blood to enter the evacuate collection tube with too much force), inverting the tube too vigorously, drawing the blood through a small needle, and using a syringe with excessive suction applied to the plunger.

Crying and hyperventilation can either increase or decrease the plasma potassium level.

http://www.labtestsonline.org/understanding/analytes/potassium/test.html


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## BionicThyroid

Thanks Andros- I just want to be better. Not sure if the potassium was plasma or serum, what is the difference? Something else I find interesting- I frequently have elevated pancreas enzymes and I don't drink at all!! Have you heard of that before?


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## Andros

BionicThyroid said:


> Thanks Andros- I just want to be better. Not sure if the potassium was plasma or serum, what is the difference? Something else I find interesting- I frequently have elevated pancreas enzymes and I don't drink at all!! Have you heard of that before?


Oh, sure.........and there are many reasons leaving alcohol aside. Gall Bladder stones, diabetes, high tryglycerides etc..

Potassium, a metallic inorganic ion with atomic weight of 39, is the most abundant cation in the body. The vast majority of potassium is in the intracellular compartment with a small amount in the extracellular space. Normal serum potassium is 3.5 to 5.5 mEq/L; however, plasma potassium is 0.5 mEq/L lower. While total body potassium is lower in females and in older patients, serum potassium concentration is independent of sex and age.

http://www.ncbi.nlm.nih.gov/bookshelf/br.fcgi?book=cm&part=A5502

And I found this interesting.........

Insulin secretion, which is stimulated by an increase in serum potassium, shifts the potassium into the liver and muscle cells.

There may be the answer to the pancreas as well. I recommend you go to that link and read it. Very very interesting.

Sounds to me like you have a lot of health issues right now but some of this may be co-morbid to the diseased thyroid. I would cross only one bridge at a time here and address the thyroid situation head on.

I will help you all I can. If nothing else, I truly care and I am here for you.


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## Lovlkn

BionicThyroid said:


> I was diagnosed with GD in October 2009. I had the symptoms for several years, and was told it was stress, depression....I was started on Methimazole and Proprananol, then switched to PTU and back to Methimazole. No luck- my thyroid levels continued to rise. In November, I had the RAI- with NO prior scan- Went back to the doctor last week, and my thyroid level had doubled- I tested positive for the antibodies- My level was 488- very high. I am scheduled for the RAI-uptake on Monday and possibly another treatment on Wednesday. According to my doctor, surgery is not a good option because my thyroid is uncontrolled- SO- my question is, what if RAI fails again?? How do they get my thyroid hormone down so that surgery would be safe? Is this common?
> 
> I feel like a psycho-crazy woman with a BIONIC thyroid. HELP!!!


I have a few questions and can already make a suggestion to find a new doctor and get a 2nd opinion.
Now my questions...
-What were the lab's they ran on you prior to your RAI and what are the ranges.
- How long were you on ATD's and why did your doctor not give it more time? Were you having issues? I know you mentioned your numbers went up - which numbers? When I began ATDS my FT-4 went up and my FT- went down and my stupid doctor raised my ATD's to the point of rendering my completely hypo in the first 8 weeks which is the reason I'd like to see your labs to be sure a similar teeter totter isn't happening.
- This one goes to Andros... Since you have had RAI - isn't it common for it to take months/years for the thyroid to die off and couldn't Bionic Thyroid go back onto ATD's until she can find a doctor who knows what they are doing or have additional tests run?
- Bionic T mentions her antibodies at 488 - mine were 350ish prior to my surgery so I don't think antibodies are the issue with surgery - rather the high FT's - what are yours BionicT??


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## chopper

That's exactly what I was asking about. Isn't too soon for another RAI?

She is probably thyroid dumping from the first RAI which is why her numbers have doubled instead of going down, indicating the RAI is FINALLY starting to work, not the opposite.

RAI sometimes takes months to kick in from the stories I've read over the years. If that is the case with you, your thyroid might be dying off in large chunkc now sending all that hormone into your system at once, causing the elevated numbers.

Isn't it true that this may be the case and most probably reason for her levels to go UP after RAI?


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## Andros

Lovlkn said:


> I have a few questions and can already make a suggestion to find a new doctor and get a 2nd opinion.
> Now my questions...
> -What were the lab's they ran on you prior to your RAI and what are the ranges.
> - How long were you on ATD's and why did your doctor not give it more time? Were you having issues? I know you mentioned your numbers went up - which numbers? When I began ATDS my FT-4 went up and my FT- went down and my stupid doctor raised my ATD's to the point of rendering my completely hypo in the first 8 weeks which is the reason I'd like to see your labs to be sure a similar teeter totter isn't happening.
> - This one goes to Andros... Since you have had RAI - isn't it common for it to take months/years for the thyroid to die off and couldn't Bionic Thyroid go back onto ATD's until she can find a doctor who knows what they are doing or have additional tests run?
> - Bionic T mentions her antibodies at 488 - mine were 350ish prior to my surgery so I don't think antibodies are the issue with surgery - rather the high FT's - what are yours BionicT??


Hi.......................very much like what Bionic is experiencing now, I too had thyrotoxicosis after RAI and this continued for 2 months until I had the 2nd. and the 3rd. RAI. Yes; I could have gone back on ATD but I made the decision to have RAI because ATD was not working for me. At all. I never was well and I wanted that "thing" gone.

I have said many times on this board and other places as well, had I known what I know now, I would never have gone the RAI route. I was on ATD for over a year to no avail. If I could do it over, I would have had that sucker surgically (ablated) removed forthwith. For one thing, I will never know if I had cancer or not.

I also could not fathom waiting many years for the thyroid to die off. Good Lord, I was already sick for 20 years because of not being diagnosed and being fluffed off like so many others here and elsewhere's.

Now, I have had my life back for almost 20 years and I am extremely happy. I feel well every day of my life now.

The thing is, we are all individuals insofar as the extent of our illness', our opinions, our life-styles, our choice of doctors and treatment options etc..

So, each person has to decide on their own what they think is best for them.

Our mission is to provide credible information and experience.


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## Lovlkn

My question regarding being able to go back on ATD's was to give Bionic time to make an informed decision. Her story sounds like she was rushed into RAI - like so many doctors do.

I would imagine a doctor performing a thyroid removal would also want her FT's lower but she has not posted those- only the antibody numbers.

I totally agree about RAI not being the best thing to do for a "permanent" solution which is why I choose surgery. The best part of surgery is you are rendered hypothyroid immediately and can usually find a set dose of replacement shortly after.


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## BionicThyroid

Here is my story in a nut shell- For the past 5 years I have had many health issues, none of which any doctor could explain. In addition, I have a swollen lymph node on the right side of my neck for the past 5 years. Major depression, irritable bowel, migraine headaches and ADD to name a few. Then, I began loosing weight, unintentionally, along with dizzy spells and night sweats. My primary doctor blamed it all on stress. The diarrhea was horrible and I never felt well. In May of 2009, I was seen in the ER for abdominal pain and weight loss. IBS was my diagnosis. I continued to loose weight, although I ate like crazy. I went from 145 lbs. down to 118. (I am 5' 7")
Then in October of 2009, I began to have hand tremors, so bad that I couldn't put on makeup. I was hot all the time and very irritable. Then the heart palpatations. I assumed I was just stressed. I woke one morning with my heart racing and punding out of my chest and went to the ER. My heart rate was 158 bpm. I thought I was having a heart attack. They did an EKG, which showed tachycardia and possible left ventrical enlargement. My lower legs and feet were swollen. They did bloodwork that revealed hyperthyroid and sent me to an endo the next day. I started PTU and propranolol. I didn't tolorate the PTU well so they switched me to methimazole a few weeks later. I continued to have severe heart palpatations as well as problems with my heart rate exceeding 100 bpm. That's when they opted for the RAI. I am uninsured so we did not do the RAI scan prior to. I wanted the surgery all along, but the doctor said I was too hyperthyroid for the surgery. Because my potassium was high, I couldn't take the Lugol's either. I am not sure what the range is for the labs but here are the numbers I know- My TSH has been 0.01 the entire time
October 15th- 1.2 (prior to any med's)
November- 1.5
November 10th- 1.5
(I had the RAI on November 12th
January 21, 2010- 2.55 and my TSH is stil 0.01
The doctor explained to me that my levels should have gone down atleast a little bit.
So, I am scheduled for the RAI uptake tomorrow. Should have been today, but the medication didn't arrive at the hospital due to weather. Depending on the results, they will do the RAI ablation on Thursday, OR we will discuss surgery to remove the thyroid.

I feel horrible. My muscles ache so badly, and I have no energy. I feel like I am watching my life pass by. I am SO forgetful and absent minded, that I don't trust my own judgement anymore. At times I feel possessed by a demon, and can't control my emotions. It;s hard to believe that such a snall gland can wreak such havok on the body.

I will keep you all posted, and thank you so much!!


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## Andros

BionicThyroid said:


> Here is my story in a nut shell- For the past 5 years I have had many health issues, none of which any doctor could explain. In addition, I have a swollen lymph node on the right side of my neck for the past 5 years. Major depression, irritable bowel, migraine headaches and ADD to name a few. Then, I began loosing weight, unintentionally, along with dizzy spells and night sweats. My primary doctor blamed it all on stress. The diarrhea was horrible and I never felt well. In May of 2009, I was seen in the ER for abdominal pain and weight loss. IBS was my diagnosis. I continued to loose weight, although I ate like crazy. I went from 145 lbs. down to 118. (I am 5' 7")
> Then in October of 2009, I began to have hand tremors, so bad that I couldn't put on makeup. I was hot all the time and very irritable. Then the heart palpatations. I assumed I was just stressed. I woke one morning with my heart racing and punding out of my chest and went to the ER. My heart rate was 158 bpm. I thought I was having a heart attack. They did an EKG, which showed tachycardia and possible left ventrical enlargement. My lower legs and feet were swollen. They did bloodwork that revealed hyperthyroid and sent me to an endo the next day. I started PTU and propranolol. I didn't tolorate the PTU well so they switched me to methimazole a few weeks later. I continued to have severe heart palpatations as well as problems with my heart rate exceeding 100 bpm. That's when they opted for the RAI. I am uninsured so we did not do the RAI scan prior to. I wanted the surgery all along, but the doctor said I was too hyperthyroid for the surgery. Because my potassium was high, I couldn't take the Lugol's either. I am not sure what the range is for the labs but here are the numbers I know- My TSH has been 0.01 the entire time
> October 15th- 1.2 (prior to any med's)
> November- 1.5
> November 10th- 1.5
> (I had the RAI on November 12th
> January 21, 2010- 2.55 and my TSH is stil 0.01
> The doctor explained to me that my levels should have gone down atleast a little bit.
> So, I am scheduled for the RAI uptake tomorrow. Should have been today, but the medication didn't arrive at the hospital due to weather. Depending on the results, they will do the RAI ablation on Thursday, OR we will discuss surgery to remove the thyroid.
> 
> I feel horrible. My muscles ache so badly, and I have no energy. I feel like I am watching my life pass by. I am SO forgetful and absent minded, that I don't trust my own judgement anymore. At times I feel possessed by a demon, and can't control my emotions. It;s hard to believe that such a snall gland can wreak such havok on the body.
> 
> I will keep you all posted, and thank you so much!!


Aw; geez!!! I sure can identify and I feel so so bad for you right now.

I can't thank you enough for sharing your story with "all" of us. You never know who might benefit by it.

And for what it is worth, I want you to know that you are deeply in my prayers and thoughts. It is not an easy road you are on right now but there is light at the end of the tunnel.

This is why I dedicate my time and hopefully, expertise. I will walk this road w/ you best I can as a cyber friend.


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## khop

I know exactly how you feel. I have had RAI twice with no results....I have had the Graves diagnosis since June of 2008. First they put me on meds then RAI with no results then eventually another RAI. To be honest, after the RAIs (both) was the worst I have ever felt.

I am going to a new doctor this week and want to tell them that I want surgery. I am worried they will give me the run around...but I will go to doctor after doctor until I find one that will help me.

Hang in there...only you know how your body feels. I understand.


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## Andros

khop said:


> I know exactly how you feel. I have had RAI twice with no results....I have had the Graves diagnosis since June of 2008. First they put me on meds then RAI with no results then eventually another RAI. To be honest, after the RAIs (both) was the worst I have ever felt.
> 
> I am going to a new doctor this week and want to tell them that I want surgery. I am worried they will give me the run around...but I will go to doctor after doctor until I find one that will help me.
> 
> Hang in there...only you know how your body feels. I understand.


Oh, gosh!! Hi there and welcome.

Did you have a radioactive uptake scan prior to RAI? I just wondered what diagnostic tool was used to determine that RAI was the best course for you?

I had to have RAI 3 times and of course I was a dummy back then. Just did what the doc said to do. Now, I will always wonder whether I had cancer or not. It would seem hyper "is" in fact a symptom of thyroid cancer in "many" cases.

So, push for the surgery. If mentioning the "C" word would help win that battle, don't be bashful about it.

Let us know how you are doing and thank you for your post.


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