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Thyroid problems after I-131 treatment
I have been battling with thryoid problems for 6 years now, just recently, June 06, I had thyroid surgery. The surgeon only removed my right lobe and found a 1 cm. tumor behind it. It was thryoid cancer. I just completed the I-131 treatment and had my blood tests done, and full body scan. The blood tests came back that my T3 Total was 186, slightly high, and my Thyroglobulin was 2166, the normal range is 2.0-35.0. I have not seemed to get a straight answer from my endo. why do you think that this level is so high and can this be harmful to me? The I-131 scan came back and said that the Radioactive Iodine is still present, but only in the left side of my neck. I have had a head ache for 3 weeks now, they tell me its a side effect of the I-131 treatment. I am still quite tired. And my neck on the left side is still hurting me. I had some problems with the I-131 treatment that put me in the hospital with lack of ability to breath. I had started my Synthroid a few days after treatment of I-131 and the doctor took me off it because I had complained of rapid, hard heartbeats. She wanted me off it for 5 days to see if the symptoms subsided but they haven't. What should I do. I feel that since I had thryoid cancer, things can't get much worse, can they? Can you please offer some sense in all this craziness? Thanks for your time and understanding.
A related discussion, What's going on?! was started.
Hi there~
yes the high levels means that thyroid cancer cells are present some where in her body. They don't have to be in the neck. Most likely she will have to do the I-131 Treatment, which should kill all thyroid cells, cancerous or not. I have been struggling with my I-131 treatment. It has many side effects that the doctors don't tell you or how you could react to the treatment. I was very disappointed with the medical staff at my hospital because everyone had a different answer to the same questions that I had asked. It has brought me to a point that I am seeking further medical treatment at a hospital in NYC. I just got a contact there and the doctor is willing to help me make some sense of all this stuff. My biggest concern was/is that they didn't tell me it would take me about 3 months to bounce back to my "normal" self. How I feel, loosing my hair, gaining weight, becoming depressed, feeling tired all the time inspite of sleeping 12 hours a night, its just terrible. Don't have high expections. Because it does take many long days to battle through all the side effects and basically the doctors have told me now to just medicate the symptoms and move on, which I think is a poor way to help a patient. Good luck to you and your family.
yes the high levels means that thyroid cancer cells are present some where in her body. They don't have to be in the neck. Most likely she will have to do the I-131 Treatment, which should kill all thyroid cells, cancerous or not. I have been struggling with my I-131 treatment. It has many side effects that the doctors don't tell you or how you could react to the treatment. I was very disappointed with the medical staff at my hospital because everyone had a different answer to the same questions that I had asked. It has brought me to a point that I am seeking further medical treatment at a hospital in NYC. I just got a contact there and the doctor is willing to help me make some sense of all this stuff. My biggest concern was/is that they didn't tell me it would take me about 3 months to bounce back to my "normal" self. How I feel, loosing my hair, gaining weight, becoming depressed, feeling tired all the time inspite of sleeping 12 hours a night, its just terrible. Don't have high expections. Because it does take many long days to battle through all the side effects and basically the doctors have told me now to just medicate the symptoms and move on, which I think is a poor way to help a patient. Good luck to you and your family.
My mother in law had her thyroid removed several years ago, (probably about 18 years ago). I don't know if she had the I-131 treatment as she said she simply had the surgery and that was it. She recently saw her endocrinologist who said her thryoid levels were very high....he said hers should have been around 5 ( whatever that means), but they were twice what they should be. He is going to be doing a test for thyroidglobulin after tha holidays but I am wondering if anyone can give me some more information as to what this could mean. I have doing some research online and it seems that if one has a high level of thyroidglobulin after having thyroid removed it could mean return of cancer cells.
Any other info that anyone could give me would be greatly appreciated!
Any other info that anyone could give me would be greatly appreciated!
I am sorry - sounds like you are up against a bit of Dr. God-complex (or you are getting ready to star in an episode of "House"). I'm sorry.
My first endo was the chief of endocrinology at the largest Level-1 hospital in the state - what an arrogant jerk! All he would do was scream at me for encouraging my family to get their healthy thyroids out (4 with papillary carcinoma, 2 precancerous). The only "healthy" thyroid in the family still exists in my 15 year-old son's throat (and is nodule free, I might add).
Try posting to the patient-to-patient forum. Right now there are at least three people on there who are either undergoing thyroid surgeries or RAI in NYC right now and may be able to steer you towards an MD who will be more of a partner in your health care.
Keep us posted and good luck!
My first endo was the chief of endocrinology at the largest Level-1 hospital in the state - what an arrogant jerk! All he would do was scream at me for encouraging my family to get their healthy thyroids out (4 with papillary carcinoma, 2 precancerous). The only "healthy" thyroid in the family still exists in my 15 year-old son's throat (and is nodule free, I might add).
Try posting to the patient-to-patient forum. Right now there are at least three people on there who are either undergoing thyroid surgeries or RAI in NYC right now and may be able to steer you towards an MD who will be more of a partner in your health care.
Keep us posted and good luck!
Greetings, sorry for the delay. I totally understand that I should be seeing another doctor. I am having such trouble finding one though. I am going to try and find one. I have started back on medication last week, and I haven't started feeling better yet. I have had a headache and just not felt myself. There is a 4 month wait list for Sloan in NYC and I am going to try and get into Yale in New Haven. Right now, I am very disappointed about my doctor situation. I know that I should have had the doctor taken all the lobes out, but I was under when he made his choice to leave half. I had done my research and he had done more than 500 thyroid surgeries. I guess that isn't enough. He was "THE" doctor from NY to Yale who does the surgeries. What a problem. I can't win. I will keep you posted and when I get some good news, I will share it with you.
Talk with you later.
Talk with you later.
One more question. You said the 1cm area of cancer was "behind" the lobe. What was the staging of your cancer?
What type of cancer was found?
I had a very similar situation. Papillary carcinoma was found by the pathologist after I had been taken into recovery following the removal of my Rt lobe. Over the next 12 months I had three sisters also diagnosed with papillary carcinoma and another sister and my daughter diagnosed as precancerous. Despite the fact my left lobe was nodule free, I opted to have it out 13 months after the right one. I could see the handwriting on the wall for the future of that lobe!
Now I am glad I did it because I had to have RAI this year (2 years following the 2nd lobectomy) as I had some aggressive thyroid tissue regrowing in my throat (nice way to say "bad stuff in there"!).
Is there anyone else in your family with thyroid cancer? Is the other lobe nodule free?
I'm just curious because the protocol at the hospitals here would typically be to remove the 2nd lobe before RAI.
I had a very similar situation. Papillary carcinoma was found by the pathologist after I had been taken into recovery following the removal of my Rt lobe. Over the next 12 months I had three sisters also diagnosed with papillary carcinoma and another sister and my daughter diagnosed as precancerous. Despite the fact my left lobe was nodule free, I opted to have it out 13 months after the right one. I could see the handwriting on the wall for the future of that lobe!
Now I am glad I did it because I had to have RAI this year (2 years following the 2nd lobectomy) as I had some aggressive thyroid tissue regrowing in my throat (nice way to say "bad stuff in there"!).
Is there anyone else in your family with thyroid cancer? Is the other lobe nodule free?
I'm just curious because the protocol at the hospitals here would typically be to remove the 2nd lobe before RAI.
Well, I have nodules on the left lobe as well, some hot and some cold. I wanted to have the left lobe removed and the surgeon said that it was too risky of a surgery and that he wouldn't do it.
I am not sure that anyone else in my family has thyroid cancer. I have no relationship with them and tried to contact them but there has been no reply.
I am have such trouble after the RAI, that I am going to NYC to a major hospital to talk with them about what has been done, and what else to expect.
I am not on any medications and really need to be. I am not really happy with the endocrinologist but, I have seen her for 6 years, and tried to see one of the other doctors in the practice and she wasn't any better than the doctor that I currently see.
Did you have any trouble with RAI? It has caused my thyroid protein to sky rocket very high, which can't possibly be good for me. I have also had increased rapid heart beats, shakes and light headedness. I have also had a headache for weeks. My mucus membranes have also lost their wetness. Each day, I feel that there is something else gone wrong with me and I am only 34.
I wish that there was a doctor who really knew what they were doing with me and could help me.
I am not sure that anyone else in my family has thyroid cancer. I have no relationship with them and tried to contact them but there has been no reply.
I am have such trouble after the RAI, that I am going to NYC to a major hospital to talk with them about what has been done, and what else to expect.
I am not on any medications and really need to be. I am not really happy with the endocrinologist but, I have seen her for 6 years, and tried to see one of the other doctors in the practice and she wasn't any better than the doctor that I currently see.
Did you have any trouble with RAI? It has caused my thyroid protein to sky rocket very high, which can't possibly be good for me. I have also had increased rapid heart beats, shakes and light headedness. I have also had a headache for weeks. My mucus membranes have also lost their wetness. Each day, I feel that there is something else gone wrong with me and I am only 34.
I wish that there was a doctor who really knew what they were doing with me and could help me.
Even if your endo is the most wonderful person in the world, if you aren't receiving the treatment you deserve please FIND ANOTHER DOCTOR!!
If you had suspicious (cold) nodules in your left lobe too *AND THEY FOUND CANCER ON THE RIGHT LOBE* I can't imagine for the life of me why they left the remaining lobe in!
I had two separate thyroid surgeries lobectomies but all four of my sisters and my then 16-year old daughter had complete thyroidectomies. It's a common surgery. I'm just afraid you had a surgeon who was unsure of himself/herself. Please consider going to NYC and finding a good doctor (endo and surgeon).
Please post on the patient-to-patient thyroid forum. There are a lot of us there who have been through it and quite a few in NYC right now who could point you in the right direction.
You *DO* need to be on medication. Sometimes one lobe can support you but you had RAI to kill the remaining lobe. You need thyroid supplement (that's probably part of why you are having such problems).
I didn't have any major problems with my RAI (other than my TSH levels being so high) but I had both lobes removed first and went right back on thyroid replacement (double dose) 24-hours after.
Here are some good web sites to check out - one of them is actually in NYC too at the New York Thyroid Center:
http://www.endocrineweb.com/
http://www.cumc.columbia.edu/dept/thyroid/
Good luck and please, do get another doctor(s). You will find lots of great support and advice on the patient-to-patient forum.
If you had suspicious (cold) nodules in your left lobe too *AND THEY FOUND CANCER ON THE RIGHT LOBE* I can't imagine for the life of me why they left the remaining lobe in!
I had two separate thyroid surgeries lobectomies but all four of my sisters and my then 16-year old daughter had complete thyroidectomies. It's a common surgery. I'm just afraid you had a surgeon who was unsure of himself/herself. Please consider going to NYC and finding a good doctor (endo and surgeon).
Please post on the patient-to-patient thyroid forum. There are a lot of us there who have been through it and quite a few in NYC right now who could point you in the right direction.
You *DO* need to be on medication. Sometimes one lobe can support you but you had RAI to kill the remaining lobe. You need thyroid supplement (that's probably part of why you are having such problems).
I didn't have any major problems with my RAI (other than my TSH levels being so high) but I had both lobes removed first and went right back on thyroid replacement (double dose) 24-hours after.
Here are some good web sites to check out - one of them is actually in NYC too at the New York Thyroid Center:
http://www.endocrineweb.com/
http://www.cumc.columbia.edu/dept/thyroid/
Good luck and please, do get another doctor(s). You will find lots of great support and advice on the patient-to-patient forum.
Thanks for the response. The only reason I was told for leaving the left lobe was that the doctor didn't feel it was necessary for removal. When the surgeon told me that I had thyroid cancer after the surgery, I asked how much is left, he said that he left the whole left lobe and to follow up with my endo. for radiation treatment. I don't understand his reasoning but he was the surgeon.
My thyroidglobulin AB was less than 20. with a comment saying Result is below the sensitivity limit of the analysis. Whatever that means.
Thanks for your help and support!
My thyroidglobulin AB was less than 20. with a comment saying Result is below the sensitivity limit of the analysis. Whatever that means.
Thanks for your help and support!
MEDICAL PROFESSIONAL
A Tg of 2166 is high -- make sure Tg antibodies were done -- if these are positive then the Tg cannot be interpreted.
However, in this case the left lobe was still present when I-131 was given so when the tissue is being destroyed, thyroid protein is released (ie, Tg) - this is the likely explanation for the 2166 Tg and I would expect this to fall dramatically in the next several weeks.
High dose I-131 is necessary for thyroid cancer, but with the remaining left lobe it accumulates in the neck and stays there for weeks -- perhaps aggravating your symptoms.
With regard to synthroid, would wait as you likely had a mild radiation thyroiditis (hyperthyroid) and this needs to clear before starting the synthroid.
Was there a reason the left lobe was not removed prior to the I-131?
Was there a reason the left lobe was not remove
However, in this case the left lobe was still present when I-131 was given so when the tissue is being destroyed, thyroid protein is released (ie, Tg) - this is the likely explanation for the 2166 Tg and I would expect this to fall dramatically in the next several weeks.
High dose I-131 is necessary for thyroid cancer, but with the remaining left lobe it accumulates in the neck and stays there for weeks -- perhaps aggravating your symptoms.
With regard to synthroid, would wait as you likely had a mild radiation thyroiditis (hyperthyroid) and this needs to clear before starting the synthroid.
Was there a reason the left lobe was not removed prior to the I-131?
Was there a reason the left lobe was not remove
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