Is this normal for GD?

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I just start Tapazole for six days for Hyperthyroid. My muscle is so weak that I have hard time to walk for about three weeks. Is it normal for Greaves' Desease? Or it could belong to some muscle issue?

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  • Posted

    It is very common for hyperthyroid patients to have lost vitamins, minerals and amino acids from their muscles while their thyroid was hyperactive and they were untreated.  Unless this is replaced, they will continue to feel the effects of this loss.  Carnitine, especially is an amino acid that is lost from the muscles in urination.  What helped me was adding 1,000 mg of Acetyl-L-Carnitine and 500 mg of Regular L-Carnitine as well as Vitamin D, 1,000 mg to my meds.  The Acetyl-L-Carnitine especially works in the same manner as your meds, blocking the excess thyroid hormones, however, it also raises TSH very rapidly.  For the first two years, even though I was on 10 mg of Tapazole, my TSH test registered at 0 until I added the Carnitines.  These are supplements available at most health food stores.
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    • Posted

      Thank you so so much for your info, Linda187. I am going to give it a try.  I am now  taking 30mg of  Tapazole daily, 3 times.
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    • Posted

      If you do try this, know that the Acetyl-L-Carnitine in particular will cause your TSH to rise rapidly and FT3 and FT4 to lower so it requires frequent blood testing like every 4 to 6 weeks and adjusting either the dose of Carnitine or the dose of Methimazole downward.  I was happy to lower my Methimazole finally from the 10 mg I started at down to the current 2.5 mg once a day.
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    • Posted

      Thank you again. I am thinking the side effects of Camitine is much less than Tapazole. Six says only I have side effects already. My arms are in some pain.... 

       

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    • Posted

      I am sorry I didn't make myself clear. What I meant is I have side effects to Tapazole: my arms are in some kind of pain, my finger jionts are in pain, I feel dizzy....

      if Acetyl-L-Camitine  can in a way works like Tapazole, then I can take less Tapazole and add  Acetyl-L-Camitine. Is this thinking right?

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    • Posted

      You might be feeling side effects from Tapazole because of the dose of it.  But I would not adjust Tapazole.  I would let my doctor adjust that as my blood levels improve.  If you have Graves and are on Tapazole and you add Acetyl-L-Carnitine it helps the Tapazole to work better and your blood levels will improve faster.  As your blood levels improve, your doc can advise you on how much to lower the dose of Tapazole.  You can also adjust your dosage of Acetyl yourself depending on your blood values because your doctor will know nothing about the Carnitine.  So you do not take it instead of what he recommended.  You take it along with what he recommended and allow him to adjust the dosage.  This regimen requires that your bloods are tested frequently like every 4 to 6 weeks in order to adjust dosages or you will find yourself going from hyper to hypo very quickly.  My family doc did the blood tests for me between my visits to my Endo whom I saw less frequently.   Again this varies based on how high your values are currently.  Also add vitamin D as thyroid patients are usually deficient in it.  It is a very fine balancing act.  I myself did that and I am currently not on Acetyl-L-Carnitine at all anymore because if I were, all my levels would be hypo.  So I am only on 2.5 mg of Tapazole once daily.
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    • Posted

      Thank you for spending time writing to give me a better idea. It feel good to talk to someone who is dealing the same issue, because she has the fist-hand experience. 
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    • Posted

      As lab values vary from institution to instutition, I would need to know what the normal ranges are for your lab.  The TSH of course is indicative of hyperthyroidism as is the Free T3 but I am not sure about your T4 as this would be normal in the lab I go to.
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    • Posted

      Ok, thyroid peroxidase antibodies 852 (<9iu/ml),

      Thyroglobulin Antibodies (

      T3, Total 480 (76-181ng/dl)

      T3, Free 19.6 (2.3-4.2 pg/ml)

      T4, Free, non-dialysis 6.2 (0.8-1.8ng/dl)

      TSH <0.01 (0.40-4.50mIU/L)

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    • Posted

      You said earlier that you are taking 30 mg daily 3 times.  Did that mean you were only on the daily dose for 3 days or you are taking 90 mg in total?

      If on 30 mg daily, I would add 1,000 mg of Regular L-Carnitine and 1,000 mg of Acetyl-L-Carntine along with 200 mg of Selenium or eat 2 Brazil nuts instead a day and also take at least 1,000 mg of vitamin D3 to start.  Try adding them one at a time starting at one capsule and increasing so you can tell how each makes you feel - better or worse.  If worse, of course do not continue adding or even taking it.  In my case, my results were not as high as yours, FT3 and FT4 were only mildly elevated compared to you but my TSH was 0 and stayed that way for 2 years on 10 mg of Methimazole until I added the Carnitines and finally on just Acetyl-L-Carntiine and 5 mg of Tapazole.  My values improved so quickly that they went towards the hypo end of the normal scale and I had to discontinue the Acetyl-L-Carnitine and am on only 2.5 mg of Tapazole a day now with results in range at a good level.  TSH of 1.06.  So I don't have the experience of the real  thyroid elevations as high as yours, but others have and they have also done well with supplements.  One lady on a thyroid board went hypo just with supplements including as well as the above the herbs Bugleweed, Melissa and Motherwort.  She did not take Methimazole.  However, she did have a Naturopath who Skyped with her and guided her in taking the supplements and the amounts to take.  She is now discontinuing the supplements by lowering them in the effort to normalize her results but she feels quite well.

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    • Posted

      I am sorry. I meant taking 10mg 3 times a day. So totally 30mg a day.

      Thank you so much for the useful information. I'll be cautious. I just want to be able to walk as normal again.

      I used to do light excises and felt great. So I didn't bother to go to see a doctor. I believe I had some mild symptoms but I neglected it, and the light excises was just enough to handle it. Now after a physical work put me in an exhausted situation, all symptoms came out strongly and suddenly.

       

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