Confused.

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I was diagnosed with hyperthyroidism in 6 of 2017. I tried methimazole. Didn't work. In Oct of 2017 did the radiation iodine pill. Found out yesterday 11 21 that didn't work. Why? TSH is 0.01 T3 is 11.1 T4 is 3.8. Told to get back on methimazole. If it didn't work the first time why get back on it?

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  • Posted

    This is what I found on radiation iodine pill.....didn't your doctor go over anything with with you?   In almost all cases, your thyroid hormone levels will return to normal or below normal after radioactive iodine treatment. This may take 8 to 12 weeks or longer. If your thyroid hormone level does not go down after 6 months, you may need another dose of radioactive iodine.,,,,,,if you had it done in October...only a month ago....

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    • Posted

      All he said was no hairless, that bs, and I would not loose time from work. Another bs line. I am looking my hair due to the radioactive mess and I lost a week from work. Couldn't be around others.

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  • Posted

    Hi Kimberly

    Sorry you're not feeling well.  RAI could take time to work. My Endo told me sometimes you need it twice. But I pulled this up from the net. 

    There is considerable individual variation in the timing and extent of response to radioiodine. However, by three months after it is given, the treatment has usually had its maximum effect. Most patients are no longer hyperthyroid by that time, although in some patients this may take as long as six months.

    Others will come by and talk to you about supplements and diet to help with hyperthyroid and advice.

    hugs

    Jaye

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  • Posted

    When you say "Methimazole didn't work" was that because not all your thyroid values normalized, especially TSH?  My TSH did not rise for 2 years although my Free T3 and Free T4 normalized immediately when I was on Methimazole initially at 10 mg daily..  My TSH only started to rise when I added back some of the vitamins, minerals and amino acids I was deficient in because of my hyperthyroidism.  I started taking Regular L-Carnitine, 3,000 mg a day after being tested for this amino acid and found to be deficient.  I also took Vitamin D, 1,000 to 5,000 IU per day and was found to be deficient in that as well.  Vitamin D is extremely important for healthy thyroid functioning.  I was also low in Magnesium so added that as well.  My TSH started to rise when I took first the Regular L-Carnitine and then Acetyl-L-Carnitine along with my Methimazole.  Unfortunately Regular Medical Doctors are not trained in this and are not open to learning about it either.

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    • Posted

      Hi Linda, my endo does not do supplements. He states my body is not short of any of that. Just tsh very low t3 and t4 very high. He wanted to kill it and start over. But, my thyroid doesn't want to die lol.

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    • Posted

      Physicians are not trained in the use of supplements in treatment of thyroid disease.  Especially not Endos.  I showed my Endo the bottle I was taking after my improved results astounded him.  I had to do my research and make choices based on the knowledge I was gathering as well as my intuition.  So he adjusted my Meds dosages and I adjusted my supplements.
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  • Posted

    By the way, my first Endocrinologist was pushing RAI or surgery when my TSH would not rise during those first 2 years but I had made up my mind beforehand that i was not going to go that route so I resisted.  So I think your doctor also followed the usual medical path.
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  • Posted

    Since Kimberly already took RAI treatment which isn't reversible, but may be stopped for further treatment, my opinion is to focus on and seek other RAI patients' treatment experience and post-treatment remedies. Hope the experienced RAI patients would chime in here to help. (sorry have no input and real help)

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  • Posted

    Hi, a complete diagnosis would indicate what is causing your thyroid to become overactive. Hyperthyroidism is just an initial finding. For example, some thyroid disorders are of autoimmune nature. 

    What exactly do mean by methimazole did not work? What dose were you on and what were your thyroid values? 

    In my case, I had to take anti-thyroid medication for 18 months. 

    Your radio surgeon might have used a RAI dosage that does not destroy your entire thyroid. There are even documented cases where thyroid tissue has regenerated after a thyroid ablation. 

    The reason you did not respond well to Methimazole the first time might have been that your thyroid was very overactive and your thyroid levels could not be controlled with a reasonable daily dose. Maybe your ablated thyroid produces less thyroxine and you might respond better to Methimazole this time.  

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    • Posted

      I was diagnosed with graves disease in July by my endo man. 1 weighed 152 now as of Nov I weigh 129. My numbers were off the chart. Was looking at over 30. I feel fine. Doctors are telling me I feel bad. I took methimazole 10mg 3x a day. In the beginning. Now I kept looking weight and heart rate and bp were well above normal ranges pulse 120- 150 bp 150/90 - 160- 100. I felt fine. They said no its not acceptable. I wish i had never done anything about it. Now here I am. The guinea pig. Let's see if this or that will work.......

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    • Posted

      Thyroid values tsh 0.01 t 3 15.2. T4. 35.8

      Some have come down but still overactive. The still extremely low they say. In combination with others not in balance.

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  • Posted

               TESTS              RESULT     FLAG      UNITS  REFERENCE INTERVAL  LAB Thyroxine (T4) Free, Direct, S  T4,Free(Direct)                     1.07 ng/dL  0.82 - 1.77 01

    TSH                                 0.006    Low uIU/mL 0.450 - 4.500 01

    Reverse T3, Serum                    18.2 ng/dL   9.2 - 24.1 01

    Thyroglobulin Antibody               <1.0 IU/mL   0.0 - 0.9 01     Thyroglobulin Antibody measured by Beckman Coulter Methodology

    Thyroid Peroxidase (TPO) Ab           305   High IU/mL     0 - 34 01

    Triiodothyronine,Free,Serum           2.9 pg/mL   2.0 - 4.4 01 I'm no help....I'm trying to make sense of the above lab results.  I would love some feedback if anyone has any.

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