WHAT SHOULD TSH LEVEL BE WHEN YOU GET YOUR BLOOD TEST DONE IF YOUR THYROID IS NOT OUT-BUT YOU HAVE C

grateful1
grateful1 Member Posts: 80 Member
edited March 2014 in Thyroid Cancer #1
MY TUMOR ON MY LEFT SIDE CAME BACK AS MALIGNANT--POORLY DIFFERENITATED--WHEN I HAD MY NEEDLE BIOPSY DONE IN FEB.. WHEN THEY TRIED TO REMOVE IT, THEY COULDN'T BECAUSE OF ITS POSITION. IT WOULD HAVE BEEN TOO CLOSE TO MY AORTA, ETC. NOW THEY REALLY DON;T KNOW WHAT TO DO. THEY SAY IT IS A CONFUSING CASE. I GOT THE CANCER BECAUSE I WAS IRRADIATED FOR AN ENLARGED THYMUS AS AN INFANT. WHEN THEY TRIED TO REMOVE THIS TUMOR WHICH WAS CAUSING ME A LOT OF PAIN IN THE EAR, BACK, NECK ETC., AFTER FIVE HOURS IN APRIL THEY TOOK A BIOPSY SINCE THEY WERE IN THERE ANYWAY. WELL. THE BIOPSY CAME BACK BENIGN TO EVERYONE'S TOTAL SHOCK--EVEN THOUGH IT LOOKED MALIGNANT TO THE SURGEON.. I HAD BEEN TAKING SUPPLEMENTS MENTIONED IN SUZANNE SOMERS BOOK FROM FEB THRU APRIL--THAT AND IMPROVING MY DIET SUCH AS GOING OFF SUGAR WHICH THEY SAY FUELS CANER, ETC.

NEXT I WENT ON A IODINE FREE DIET FOR TWO WEEKS SO I COULD GET IODINE TREATMENT FOR AN "AGGRESSIVE CANCER" THE ENDINCRINOLOGIST SAID. BUT WHEN I SHOWED UP AT THE NUCLEAR CENTER FOR THE IODINE TREATMENT, THE DIRECTOR SAID HE HAD TO SEE DISCS OF MY PET SCAN BEFORE HE COULD PROCEED.

. ALSO, THE SURGERY HAD BEEN CANCELED IN THE END OF MARCH BECAUSE THEY FOUND I HAD A HEART PROBLEM. SO THEY TOOK ME OFF MY SYNTHROID AND CAFFEINE AND ANYTHING THAT COULD MAKE THE HEART RATE HIGHER. I HAVE NOW BEEN WITHOUT SYNTHROID SINCE MARCH. MY BLOOD TEST SHOWS MY TSH DOUBLE WHAT IT SHOULD BE. DOES ANYBODY ELSE HAVE AN ELEVATED TSH--AND DO YOU KNOW WHAT IT MEANS. THANKS. SORRY FOR THE CONFUSING CASE.

Comments

  • FCT2010
    FCT2010 Member Posts: 21
    #2
    Normal TSH level
    According to my labs, I believe normal TSH level needs to be somewhere between 0.34-4.82, but in order to have RAI, it has to be at least 30. They take us off our thyroid meds for two weeks prior to RAI (or some are given Thyrogen shots and stay on their thyroid meds) so that TSH will go above 30. I just had my RAI dosage on Thursday, July 1. My TSH, taken on June 29, was 67.44.

    As far as what I understand, the TSH is elevated so it will wake up the thyroid cancer. Otherwise, thyroid hormone replacement therapy, such as Synthroid and Levoxyl, keep the TSH in check, at .5 or less, so that any presence of thyroid cancer will lay dormant. Which is why they need the TSH to be higher than 30 before you get RAI - they want it awake so the radiation will kill it. According to my Radiologist, for RAI to do any good, there can only be a very small amount of good thyroid cells present, otherwise the RAI will only kill the good thyroid cells because in general, thyroid cancer cells don't take up iodine as well as normal thyroid cells (cancer cells take up 15% of iodine in our bodies, normal thyroid cells take up 30%).

    If you already had a PET scan, maybe they already know the cancer has spread else where and want to see if they could do external beam radiation instead of RAI?

    If you are not happy with the way your treatment is going thus far, perhaps you should seek a second opinion outside of your current health care provider or medical group. Your case seems pretty complex, so it sounds like many things need to be taken into consideration. Stay as positive as you can about your situation. I will pray that every thing goes well for you.
  • grateful1
    grateful1 Member Posts: 80 Member
    #3
    FCT2010 said:

    Normal TSH level
    According to my labs, I believe normal TSH level needs to be somewhere between 0.34-4.82, but in order to have RAI, it has to be at least 30. They take us off our thyroid meds for two weeks prior to RAI (or some are given Thyrogen shots and stay on their thyroid meds) so that TSH will go above 30. I just had my RAI dosage on Thursday, July 1. My TSH, taken on June 29, was 67.44.

    As far as what I understand, the TSH is elevated so it will wake up the thyroid cancer. Otherwise, thyroid hormone replacement therapy, such as Synthroid and Levoxyl, keep the TSH in check, at .5 or less, so that any presence of thyroid cancer will lay dormant. Which is why they need the TSH to be higher than 30 before you get RAI - they want it awake so the radiation will kill it. According to my Radiologist, for RAI to do any good, there can only be a very small amount of good thyroid cells present, otherwise the RAI will only kill the good thyroid cells because in general, thyroid cancer cells don't take up iodine as well as normal thyroid cells (cancer cells take up 15% of iodine in our bodies, normal thyroid cells take up 30%).

    If you already had a PET scan, maybe they already know the cancer has spread else where and want to see if they could do external beam radiation instead of RAI?

    If you are not happy with the way your treatment is going thus far, perhaps you should seek a second opinion outside of your current health care provider or medical group. Your case seems pretty complex, so it sounds like many things need to be taken into consideration. Stay as positive as you can about your situation. I will pray that every thing goes well for you.

    thanks fct2010-re tsh level
    Thanks so much for responding. It is confusing and lonely trying to figure it out. My tsh (I don't even know what this is) is 10:54. Maybe this is why they rejected me for iodine treatment when I showed up as scheduled at the nuclear center for my treatment.I found the blood test from the lab and it said what you said the tsh should be .40 to 4.50.
    The dr. said he needed to see my pet scans on discs. My pet scans showed an aggressive cancer--but it has not spresd to my lungs or head. The only thing it is inoperable, they think iodine treatment will be limited in helping me and my body will have a hard time with irradiation and chemo due to other medical problems. So all I am now until I hear from them is supplements.

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