Aa
Why has
my TSH and TG been coming back normal for the past 3 1/2 yrs, yet i have just been told my thyroid cancer has returned and it has possibly gone into my lungs?
I have also been told they don't think my body took up the RAI the last time but they are sending me for more of it this time?
I have also been told they don't think my body took up the RAI the last time but they are sending me for more of it this time?
Lol, quick question, everyone say about no close contact with children and adults post RAI, what about animals? i have 2 nearly 2 year old cats?
No problem. I have no life other than researching thyroid cancer. ;-)
(don't tell my boss, my kids, my pets . . . )
(don't tell my boss, my kids, my pets . . . )
Wow thanks for the reply, very informative.
I am in hypo now, came off thyroxine and replaced it with T3 4 weeks ago, now nearly a week with no meds and following the LID.
They are not giving me a scan prior to the full dose, i am just having the full dose on the 15th March.
I will certainly pose the question re lithium. Many thanks for your help. XX
I am in hypo now, came off thyroxine and replaced it with T3 4 weeks ago, now nearly a week with no meds and following the LID.
They are not giving me a scan prior to the full dose, i am just having the full dose on the 15th March.
I will certainly pose the question re lithium. Many thanks for your help. XX
Oh . . . one more thing on your question.
"Normal" levels for thyroglobulin are NOT normal levels for thyroid cancer patients who have been through RAI. Our level is supposed to become "undetectable".
If your thyroglobulin level has steadily been increasing since the last RAI then there is a recurrence (even if that steady increase is just 0.5 to 0.9 to 1.5). The example I gave is "below normal" for everyone else but is a sure sign of cancer recurrence for us. :-(
"Normal" levels for thyroglobulin are NOT normal levels for thyroid cancer patients who have been through RAI. Our level is supposed to become "undetectable".
If your thyroglobulin level has steadily been increasing since the last RAI then there is a recurrence (even if that steady increase is just 0.5 to 0.9 to 1.5). The example I gave is "below normal" for everyone else but is a sure sign of cancer recurrence for us. :-(
Everyone who has answered is correct - sometimes the dose isn't high enough the first time to kill all of the thyroid cancer. They don't want to hit ALL of us with a really high dose the first time because of potential complications. For 90%+ the lower dose of RAI will take care of the cancer the first time.
My youngest sister had to go through 3 doses of RAI to finally get it all (her last dose was something like 230mCi). I had 101mCi three years ago by my Tg still isn't low enough and I might need to have another dose too. My other two sisters never needed RAI at all.
Ask your doctor whether or not he/she feels that lithium would be good for this course of RAI. Studies have found that adding lithium during RAI can increase the effectiveness of it and makes it stay in the thyroid tissue (including cancerous thyroid tissue) longer. One study shows that "lithium increases the biological half-life of I-131 by as much as 50% in tumor deposits and 90% in the thyroid remnant." Another study showed that "lithium increased the half-life over 70% of I-131 in metastatic lesions" (which are often more difficult to find and treat). (Essentials of Thyroid Cancer Management, Amdur and Mazzaferri, eds - pages 221-237)
Also talk to the doctor about using I-123 (instead of I-131) for the "scan dose" if the hospital plans on doing one before the treatment dose. Some nuclear medicine departments give a small dose of I-131 - usually 2-5mCi - to see if there is any uptake before the big, treatment dose. Studies have found that as small a dose of I-131 as 2mCi can "stun" thyroid tissue into not accepting a larger dose of I-131. Basically, the cancer cells refuse to take up any more radioactive iodine so they aren't affected by the big "cancer killer" dose. Studies have shown that using I-123 produces better imaging on the whole body scan and does NOT cause thyroid stunning - so the cancer will readily absorb the lethal dose of I-131. (same source, page 61).
For my followup scans I have been given thyrogen shots so I didn't have to go through the LID and hypohell. I still chose to go off my meds for a week and avoid iodine for a week before and after just to make sure nothing interfered with uptake of the radiation. Ask your doctor if you will be getting thyrogen shots or going through hypohell again (no, that's not a medical term :-)
Hope this gives you stuff to discuss with your doctor.
Anytime you guys need me, send me a message - I'm not on the forum that often.
My best to you and remember . . . after my sister went through this three times (with spread to her breasts, GI tract, and liver) she is now 100% cancer free and has had two beautiful children since then. This is only a bump in the road!
HUGS
Utahmomma
My youngest sister had to go through 3 doses of RAI to finally get it all (her last dose was something like 230mCi). I had 101mCi three years ago by my Tg still isn't low enough and I might need to have another dose too. My other two sisters never needed RAI at all.
Ask your doctor whether or not he/she feels that lithium would be good for this course of RAI. Studies have found that adding lithium during RAI can increase the effectiveness of it and makes it stay in the thyroid tissue (including cancerous thyroid tissue) longer. One study shows that "lithium increases the biological half-life of I-131 by as much as 50% in tumor deposits and 90% in the thyroid remnant." Another study showed that "lithium increased the half-life over 70% of I-131 in metastatic lesions" (which are often more difficult to find and treat). (Essentials of Thyroid Cancer Management, Amdur and Mazzaferri, eds - pages 221-237)
Also talk to the doctor about using I-123 (instead of I-131) for the "scan dose" if the hospital plans on doing one before the treatment dose. Some nuclear medicine departments give a small dose of I-131 - usually 2-5mCi - to see if there is any uptake before the big, treatment dose. Studies have found that as small a dose of I-131 as 2mCi can "stun" thyroid tissue into not accepting a larger dose of I-131. Basically, the cancer cells refuse to take up any more radioactive iodine so they aren't affected by the big "cancer killer" dose. Studies have shown that using I-123 produces better imaging on the whole body scan and does NOT cause thyroid stunning - so the cancer will readily absorb the lethal dose of I-131. (same source, page 61).
For my followup scans I have been given thyrogen shots so I didn't have to go through the LID and hypohell. I still chose to go off my meds for a week and avoid iodine for a week before and after just to make sure nothing interfered with uptake of the radiation. Ask your doctor if you will be getting thyrogen shots or going through hypohell again (no, that's not a medical term :-)
Hope this gives you stuff to discuss with your doctor.
Anytime you guys need me, send me a message - I'm not on the forum that often.
My best to you and remember . . . after my sister went through this three times (with spread to her breasts, GI tract, and liver) she is now 100% cancer free and has had two beautiful children since then. This is only a bump in the road!
HUGS
Utahmomma
Sometimes the dose isnt big enough to abalte the thyroid and a 'repeat' is required.
This is quite common.
Ask questions (write down on a notepad before you go) and get a copy of your labs each time and keep them in a folder to 'go back on' if need be for reference.
All the best :o)
This is quite common.
Ask questions (write down on a notepad before you go) and get a copy of your labs each time and keep them in a folder to 'go back on' if need be for reference.
All the best :o)
Many thanks for your reply,the TSH was 0.01 not sure of the TG results other then they were normal.
I am worried that i have been told the RAI treatment wasn't taken up by my body, the first time i had it in 2006 yet they are sending me for a higher dose?
I am worried that i have been told the RAI treatment wasn't taken up by my body, the first time i had it in 2006 yet they are sending me for a higher dose?
The best person on this forum to answer your question is UtahMom........she will answer your questions with 100% accuracy.
What were the ranges and levels of TSH and TG?
What were the ranges and levels of TSH and TG?
Many thanks for your reply, I hope there will be someone who can advise me. I am due for the RAI on the 15th of this month.
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